3.21

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One year ago. Our Beach Celebration for World Down Syndrome Awareness Day.

I’ve recently remembered a night I had long forgotten and probably wouldn’t have ever thought about had it not been for the turn of events that occurred in our life upon Nella’s welcoming.

The memory is clear; the irony, haunting. I was five months pregnant with Nella, and a group of friends were joining at Brio for a dinner celebrating Heidi’s birthday. I remember everything about that night—the way the humidity made my hair stick to my cheeks as we stood waiting for a table at the bar outside, the mental note I made not to wear those jeans again as the waist pulled a bit too tightly and the button branded the skin on my ever-growing middle. I wore a hat that night. A brown tweed newsboy hat because it was September and my fall freak flag was craving brown and tweed and headwear.

I remember where I sat inside—at the far end of the long table in our private room, right between Heidi and Julie, my pregnant partner in crime. I took two sips of Heidi’s wine to feel part of the crowd and then smiled at my pleasure in knowing why I couldn’t have any more. I rested my hand over my stomach and swooned over the new ultrasound pictures Julie pulled from her purse. We passed them around the table and everyone pointed and laughed at the very obvious presence of one of her twin’s, ahem, man parts. “Whoa, lucky boy,” we laughed. We talked about pregnancy, cravings, newborns and both of us happily responded to the questions you have the privilege of answering during those blessed nine months you spend waiting in your life. Is the nursery ready? How are you feeling? Any names picked out yet? And it felt good answering them.

We talked about our babies’ health. How we were lucky. How ultrasounds showed high-kicking little people, lively beating hearts and perfect profiles of souls that had already seized our love. Our babies were fine, we said. And here’s where the memory gets a little haunting—in that beautifully prophetic way. I remember saying, “…and our last ultrasound ruled out Down syndrome.” Like it was one check off the relief list, even though it wasn’t even anything I ever worried about. No extra neck fold, heart in tip-top shape, femurs measuring just as they should.

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It was the only time I ever said those words during my pregnancy, but I remember it distinctly. I thought about it a moment after I said it, for the first time during either of my pregnancies actually, and the table briefly opened up to one of those “Oh God, can you imagine” discussions. I leaned over and interrupted a parallel conversation to get my friend Jen’s attention. Jen had a questionable ultrasound eleven years earlier when she was pregnant with her daughter. I remembered her story—how she had to wait for results for two weeks thinking it was a strong possibility the baby she was carrying had an extra chromosome. For the record, she would have kept that baby either way, but Oh God, can you imagine? I asked her to retell her story—as if it was some entertaining fisherman’s tale about the time he almost caught that really big fish. I listened and reacted and finally concluded our conversation with a “well, aren’t we lucky” mental note as I rubbed my belly and waited for my salad.

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Little did I know, I rubbed the belly of the high-kicking little person, the lively beating heart, the perfect profile of the soul that had already seized my love…the one with an extra chromosome. And, for the record, not that it matters, but yes—hell yes—we would have kept her had we known.

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Today is World Down Syndrome Awareness Day. And I want to talk about Down syndrome. Shocker, eh?

Why don’t I talk about Down syndrome more often? Because this blog is about our life, and our life is not about Down syndrome. I made the decision early on to keep this blog what it has always been, and figured Down syndrome would find a cozy spot on its own. It has…on this blog, in our home, in our hearts.

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Down syndrome is a sometimes-frightening but mostly beautiful part of my life just as being female is or being a photographer is or getting older, being a wife, raising kids is. Life isn’t always easy. Some things you choose, some things you don’t, but together it stirs together, and you drink it. And if it doesn’t taste quite right, you set to work in your kitchen adding, subtracting, perfecting that recipe until it’s the best damn drink you’ve ever tasted. The perfect cocktail. And Dude, I know how to make a good martini.

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So, where are we now?

We are parents of two witty, kind, and smart teenage boys and two funny, beautiful, charming girls. That’s where we are. Mostly, I don’t see chromosomes, I see kids. And that’s what I want the world to see too.

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Sometimes—not often—but sometimes I am scared. Sometimes I hold her and stare into her eyes and swear on my life she knows exactly what I’m thinking. Sometimes I tell her I’m sorry she has to struggle more and I feel bad when I see her work so hard to shimmy across the entire hallway to get to her brother’s bedroom. Sometimes I lose my breath worrying we might be one of those “increased likelihood” cases and sometimes I think about life expectancy. But these “sometimes” are few and far between.

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Mostly, I am amazed at my girl’s spirit and astounded by her determination. I am caught up in the thrill of motherhood and the joy of raising two girls who are a bit different but mostly just the same.

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I am aware of the facts. I can read the books more comfortably now. I am aware of the future and yet I dwell in the beauty of today and the amazing potential of tomorrow.

So on this, World Down Syndrome Awareness Day, what do I want you to know?

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Well, there’s the basic stuff I didn’t know a year ago. Things like it’s Down syndrome, not Down’s syndrome and we say “a child who has Down syndrome” as opposed to “a Down syndrome child.” I could tell you about hypotonia and my girl’s ability to stretch her legs like Nadia Comaneci or the little gap between her toes that’s just begging to be filled by a pair of Isle of Capri flip-flops.

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I could inform you of all the terminology—words like single palmar crease or Beckman oral motor intervention. But it’s taken me a year to learn these things, and it hasn’t made me any more aware of what’s most important like falling in love with my daughter has.

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Mostly, the parent of a child with Down syndrome—or autism or Turner’s syndrome or Prader Willi syndrome or, for that matter, no syndrome at all—wants the world to accept their child. To love them, praise them, high five them on the soccer field, compliment their awesome sneakers, invite them to birthday parties, ask them questions and really listen when they reply, pick them for playdates, help them when they’re struggling, teach them when they need it and recognize all the good they have to give the world.

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Having a child with Down syndrome, I am consequently more sensitive to degrading words people use—words like retarded. I’ve used it in the past—not purposefully meant to degrade, of course—but in passing when I’ve done something without thinking. It’s amazing how many times I’ve heard this word since Nella was born—usually thrown out in the same way, not meant to demean anyone, and it’s taken me awhile to figure out how I feel about it. Obviously, yes, it’s a word that is used frequently to degrade people with disabilities and for this reason, it shouldn’t be a part of someone’s vocabulary as a silly way to refer to yourself when you’ve mindlessly attempted something. There are campaigns within the special needs community to end this word, and I join them because I support this cause not only for my children, but for others’ as well. But the word exists, not only as a demeaning term, but as a medical expression too—a matter of fact, printed with other words I can’t pronounce under lists of indications that my child has an extra chromosome. And I want to be informed of what it really means—before society notoriously went and made a mess of it.

With that said, the word “retarded” comes from a Latin word that means “to make slow.” In music, a variation of the word refers to a beautiful “slowing down” of pace at the end of a composition. And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I’m just sayin.’

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My point is, throwing out “the R-word” is usually done in ignorance, and the fact that the word used inappropriately is meant to refer to a lack of intelligence is well, ironic. So, I guess this is all suffice to say, out of kindness and respect for everyone and the way this word is degradingly used, please amend the existence of this word in your vocabulary and teach your children to do the same.

Mary Oliver says, “Pay attention. Be astonished. Tell about it.” And I think that’s what awareness is all about.

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Houston, we have pigtails.

Pay attention to the person, the child, the soul—not the wheelchair, the chromosome, the difference. Allow yourself to be astonished—to learn something new from someone, to be inspired, to laugh, to enjoy a moment. And then pass it on. Spread your awareness message by the way you live, the way you speak and the way you treat people.

My girls are very different. One has eyes like little brown moons, a delicate nose, and fine blonde hair that looks like spun sugar when it catches the morning light. She is wispy and shy, lively and agile. The other one has almond eyes with deep blue oceans, one with golden flecks. Her nose is soft and sweet—like cookie dough—and her sandy blonde hair sweeps nicely across the milky plane of forehead that begs to be kissed. She is comical and loving, eager and determined. One has 46 chromosomes, one has 47, but you hardly notice when you’re watching them both scrape sidewalk chalk across the pavement or patting the backs of their baby dolls. They both are lovely, and we are lucky.

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On 1-22, we were blessed with 3-21. Three copies of the twenty-first chromosome that have opened our eyes not only to new awareness about Down syndrome, but about Life. What we are capable of…to be more. And, as Mary Oliver said, to “pay attention, be astonished and tell about it.”

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Don’t take her paper towel away…or else…

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I know what it feels like to be the mama of a special needs child, and it is in that role that I have felt fueled to advocate more fiercely for the rights of individuals with Down syndrome. Sometimes it takes wearing the shoes or wondering what it would be like to wear the shoes of a tsunami victim, a mother with cancer, a soldier’s wife, or the parent of a child with a special need to force us to be more compassionate. A child must understand the concept of “self” before he learns to share; so it is a person must wonder what it would feel like to personally experience something to be truly altruistic. I hope that reading this blog has perhaps allowed you to feel the challenges and joys of raising a child with Down syndrome. And, in doing so, I hope you are more aware of every individual’s capabilities and maybe, your own as well. Thank you again for reading, for sharing, for being part of our journey.

For more information on the amazing things individuals with Down syndrome are accomplishing and the way these beautiful souls have changed those who know them for good, please check out the NDSS’ My Great Story campaign or watch Nella’s ONEder Fund video.

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After climbing into the bathtub this weekend all by herself, Nella had her one-year therapy evaluation today, and I am beaming. Typical milestones she’s hitting. Knocking the ball out of the park. I think she has an inner Betty too.

And the Linkel Designs gift certificate goes to Comment # 577, heather: loved this post , and i mention you to all my friends or even the bagger at the grocery store !!! if i could name my inner badass….i will have to get back to you on that …after i find her this week ! 5 things im tired of …… colds, squirrels digging in the trash, bad batteries , gas prices, daddy on night shifts. 5 things ill never be tired of ……..putting fake nails on my 5 yr old, telling noah hes mommys baby, morning breath , caramel frappes ,cards in the mail…
cant wait to see laineys party. love you all. love and blessings, the doughtys

Heather, please e-mail your info to kellehamptonblog@comcast.net. Congratulations!

And I can’t help but comment on all the names I loved from your inner baddasses. Like Natasha and Shantel and Ruby and Lola and Elektra and Shirley and Towanda.

Comments

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  1. Thank you for this.

    XO.

  2. thanks for sharing! Special needs kids do change our lives but their diagnosis doesn’t define our lives. Of course, you worded it way better than I could have. :)

  3. Kelle-You should be so proud (and I know you are) of your beautiful little girl. Nella is quite the wonder and that extra chromosome just makes it sweeter! Another beautiful post about your beautiful little family!

  4. This post is profoundly beautiful.

  5. This is your day little Nella. You deserve this as well as all the other extra chromosome loves. Each day you amaze your family as well as all of your blog follower friends. You go girl!!!!!!!

    3-21-FOREVER! XOXOXO

  6. You are an amazing mom and such an inspiration. Thank you so much for sharing your stories with the world, your family is absolutely beautiful and it’s so much fun to watch your girls grow! Love Nella’s ‘boo-hoo’ face! :)

  7. I love the shadows on the walls, pigtails, Mary Oliver quote, and love that is boundless.

    :)
    Teri

  8. Beautifully written post. You have the most exquisite girls! Loving the “oh” and the shadow making.

  9. Great post! Inspiring, honest and beautiful as usual!!!

  10. Mary Oliver would be proud – paying attention to all the small things – allowing each moment rock you to your core and telling about all of it to your thousands of followers!! Nella and Lainey are lucky to have such a wonderful mother who is determined to raise awarness – to make the world a better place for her!

    And oh – the paper towel pictures -didn’t take much! And yay for pigtails :)

    Happy Monday!
    ~Beth

  11. Kelle, thank you. This post might be for Down Syndrome Awareness Day, but I think anyone who has ever loved a child with special needs can relate to what you say.

  12. Another beautiful post :)

    I’ve been working to banish the use of the R word for many years now…and will keep on keeping on!

  13. Im going to tweet this. So touching and so real as always. Same but different. Different but the same. A beautiful message xxx

  14. ,,,sweet photos of nella crying,,,as much as my heart breaks that she had something taken away from her thus the tears, i think these photos are my favorite,,,

  15. Changing the world Kelle! Happy Ds Day. Thanks!

  16. She’s absolutely beautiful. Always remember – God chose you to be her mom. She’s blessed and so are you.

  17. Beatiful post… I’m reading this at 3:30am in the morning whilst I nurse my little girl and it has truly touched me and made me thankful that there is a mumma like you in this world, you truly are an amazing woman and mother 😀

  18. I couldn’t agree more. All my students…especially the ones with extra chromosomes and labels that come from the latin word to make slow…they thank you. Thanks for doing your part to make the world a better place. Blessings..Marissa

  19. Beautifully stated (as always) Also, wanted to tell you that while we were playing at the mall playground this weekend my son made his mama proud when grabbed the hand of a little girl with Down Syndrome (whom he didn’t even know) and asked her to “come play with me”. All he saw were the cute pigtails and blue eyes, and a potential playmate. They played until we had to leave, and it warmed my heart.

    Thought of you and your little Nella the entire time. Smiles…

  20. Beautiful, loving, soul-touching post Kelle. Thinking of you and yours today. Loving Nella’s new hair accessories! :)

  21. “Allow yourself to be astonished-to learn something new from someone, to be inspired, to laugh, to enjoy a moment .”… Thank you, my days have changed thanks to Nella! Her smile has opened my eyes to the true meaning of life. Thanks, really.

  22. Once again I go from tears to full on laughter. Tears because you and your writing are amazing! The laughter came at the expense of Nella’s tears. That pouty face is priceless. Thanks for bringing awareness to a wonderful day!

  23. I love reading your blog, and have been thinking about telling you about this for a while. It is an incredible place that has performed REAL miracles for our friend’s son. They specialize in Down Syndrome children. If you ever have a chance, check it out…http://www.iahp.org/

  24. Thank you so much for always bringing joy to my heart every day. I love reading your blog and look forward to your posts. I live in Florida as well and love the pictures, you make Florida always look sunny on those 3 p.m. rainy days. LOL

  25. This is such a great story and the pictures to go along are great. You are truly inspiring! You have a beautiful family and Nella seems so amazing!

  26. Beautiful. Beautiful post Kelle and well said too. You have done an amazing job at raising awareness and created a special soft spot in so many people’s hearts for anyone with the little extra something special. I agree… out with that “word.” LOVE the piggy tails… her hair color resembles Lainey’s so much that I thought it was Lainey at first glance (the pigtail picture with Nella’s back to the camera)! As always… LOVE your posts. You really are my favorite author, and every time you publish a new post, I feel like I just got something hot off the press handed to me! <3 Amber

  27. Beautiful girls! What a wonderful post, I love how you don’t let Down Syndrome define Nella or your family. The ‘r’ word is something I have NEVER said in my life, I am British and you wouldn’t find a British adult say the British version of this world. I found it very shocking that people, especially adults, threw this word out like it was acceptable upon moving to America. I agree it needs to stop. Would you believe our children’s Pediatrician said this word once to us once?! (Me: Oh look, he stood on the scale by himself! Ped: Well he is not r…..). I could not believe it and I see I different Dr now. Thank you for educating people Kelle :)

  28. Lovely. Thank you.

  29. Thank-you. If you don’t mind, I’m going to ramble a moment.
    One of my classmates has spina bifida. She’s one of the smartest girls in the class, hopes to study vetinary science at Cambridge, and we all know she’ll get there. But she misses a lesson a week to go to a physio session at the base at our school for the students with physical disabilites.
    This base is where I meet her to walk home on a Tuesday. And those moments, waiting for her to come and meet me, scared me. The place was full of kids, smiling and laughing and hugging friends goodbye, who just so happened to be disabled. Some had mental disablities, others would be in a wheelchair for life. In situations with the ‘normal’ kids, where words like retarded are thrown around like they mean nothing, these special needs students were awkward, shy, fragile. But when they were altogether, this melting pot of people who didn’t fit the mould, who were ‘retards’? They were kind and gentle and happy. Some of the people swore and kicked as an outlet. But here, there was an awareness that there are people like you, people who are fragile, people who aren’t ‘normal’. And with that knowledge they were calmer and happier than in lessons.
    After reading Enjoying The Small Things, it just reinforced what I had slowly been realising. Disability does not define a person. And with this knowledge, I am happier. I talk, I laugh, I help, whilst I am waiting for my friend.
    For this, all I can say is thankyou. Thank you, thank you, thank you.

  30. Beautifully said. God bless that Mary Oliver.

    Cole

  31. Loved this post and thank you so much for another Nella “O”, makes my day every time. Had to laugh at Nella’s sad cry face when you took the paper towel. It is amazing to me that our children with Ds can close their eyes THAT tight when they cry. I swear when Noah cries you couldn’t open his eyes with a crow bar!!!! He certainly isn’t lacking muscle tone in his eyelids!!! ha ha ha

  32. This….”And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I’m just sayin.” .. this has changed my perspective about the things I am struggling with today .. thank you!

    Also, I read an interview the other day where the woman said “your heart can’t break as hard if you’re laughing out loud” and hoooy boy, that also hit home. Reading your post today .. I think you personify that statement! Beautiful all around.

  33. Mary Oliver (in her collection Swan) says, “If you suddenly and unexpectedly find joy, don’t hesitate. Give in to it.”

    Thanks for the example of taking life, and going. Your joy and encouragement is infectious. And your daughters really are lovely.

  34. Beautiful post. I did have odds of 1 in 24 for Down syndrome with my last pregnancy and I think it made me a better person. I learned alot while I waited for my daughter to be born. She was born on March 3 2010 and did not have a extra chromosome but I knew that no matter what she was going to be a blessing! Oh by the way my daughter eats tissue too…what is with that! 😉

  35. This post was stunning from beginning to end. The words were beautiful and the pictures were gorgeous. You are one lucky lady to have such an amazing family. Today is Down Syndrome Awareness Day and I promise to rally with you and spread the word. Thanks again for letting all of us sneak a peak into your life :)

  36. Love, love, love!

  37. Your post brings tears to my eyes… I myself, have used the “R” word, out of pure innocence, not referring to the actual definition, and it pains me to think about it, from what you have said. I understand how much this means to someone who actually has some sort of mental handicap.

    Your daughters are beautiful. Nella is amazing. I look at your pictures and I feel her smile. I haven’t seen a baby so happy, so smiley. I love her and I don’t even know them. The picture of her crying is the first I’ve seen without a smile.

    Your lucky, your daughters are beautiful. Nella will show the world that her 47 chromosomes means nothing more than being a tad bit more wonderful.

    Thank you for this post. xoxo.

  38. Hey Kelle, thanks. I could have written this, except replace Down Syndrome with autism. We checked all the little boxes, reaching for the clues that would tell us, “Yep you’re little one is ‘normal'” What a silly word that normal. We congratulated ourselves on how lucky we were. However, over time we learned he is autistic, but amazing and we are so so so so so lucky to have our magicman, and I know that you know you are so so so so so lucky too.

    Thank you again for your beautiful words. I often feel like if it wasn’t for the span of a country, we could totally do coffee.
    Lisa

  39. Amen Sistah! Beautiful Kelle – your words and the photos!
    Happy World Down Syndrome Day! :)

    Laura & Ryan
    http://nowimamom.blogspot.com/

  40. There’s my cheesecake girl…all full of goodness and sweetness and soft all rolled up with a fruity topping!

    I see Heaven in her eyes. She knows a lot that little one of yours. She has a lot to share.

    Now, give her some paper towel mama!

  41. You are an inspiration. Truly. Thanks for your words today that hopefully help me to be a better person.
    ~Monica

  42. Kelle, I don’t think I’ve ever posted a comment on your blog, but I have been following you since Nella was born. I find people with Downs Syndrome to be the warmest, kindest, most genuine people I have ever met. I went to high school with two girls that had Downs Syndrome and they were a light in the hallways. Your girls are both so beautiful and adorable and Nella just makes me smile – and the ‘oh’ face? ADORABLE!!!!! :) Many blessings as you continue to raise your kids :)

  43. I’d always wondered if you’d had a nuchal translucency test performed. You hadn’t mentioned a negative result after Nella was born, so I wondered if you had opted not to get the test.

    My son is two weeks older than Nella, and I didn’t get the test. I didn’t want to me that paranoid pregnant woman that was worried about everything. I knew my baby would be fine. And frankly, if the test had shown something, while it wouldn’t have changed anything for me, I didn’t want to be put in the position where I felt like I had to make some kind of decision. Down syndrome, or anything other syndrome, was a non-issue for me. My son ended up having some health scares at the end of my pregnancy resulting in an emergency c-section 2 weeks early (due date was 1/21), but I don’t regret not buying into the pregnancy hysteria. Because, in the end, he’s still perfect.

  44. Beautifully said…thanks for a little ray of sunshine this morning. ~amy

  45. Here kelli:
    You give a way so much here is an opportunity for you to win a 100 gift card to Itunes or some cute bags by donating to a cause you love:
    http://kristadawne.blogspot.com/2011/03/giveaway-for-world-down-syndrome-day.html

    Bennet has a forever home waiting but they cannot afford to bring this Downs syndrome guy home. Reece’s Rainbow helps but he is 5 and time is running out. It is almost time to for the ukraine orphanage to send him to an institution where he is chained to a bed. Donate 5 dollars and you get to enter the give-away ( See upper link) I knew you would love this opportunity on my sister’s blog:)
    Any other commentators are welcome to make a difference and go for the 5 prizes offered.

  46. PIGTAILS! LOVE LOVE LOVE, I remember when I could first get them on my girls. Now the stinkers think they are to old for them.

    You have changed what Down Syndrome for me. I use to feel uneasy. That feeling is gone because I stopped worring about the differnces. Now each week when we do the shopping the young man who collects the carts enjoys telling me about his day, he brings my little guy out a balloon and we have a great few minutes together. I look forward to it each week.

    Thank you again for sharing your life with us. I can’t really put into words without sounding like a total freak how much it has ment to me.

    Give that girl back her paper towel right now!

  47. Posted this link on my FB page in Honor of Word Down Syndrome Awareness Day. I fall in love all over again with baby Nella each time I read your blog!! She makes me smile from my soul!

  48. As always you’ve turned out a beautiful post. I love how you describe your girls. They are both lovely beings. Thanks for sharing them with us.

    It’s hard watching children struggle, but it’s harder still watching them be ridiculed by other children. Let’s teach out children how to love others, no matter how they are categorized. The world would be so much better for it. Thank you for raising awareness and making it known.

  49. I’m sure you read this somewhere, but I wanted to share:

    A Creed For Babies With Down Syndrome:

    My face may be different

    But my feelings the same

    I laugh and I cry

    And I take pride in my gains

    I was sent here among you

    To teach you to love

    As God in heaven

    Looks down from above

    To him I’m no different’

    His love knows no bounds

    It’s those here among you

    In cities and towns

    That judge me by standards

    That man has imparted

    But this family I’ve chosen

    Will help me get started

    For I’m one of the children

    So special and few

    That came here to learn

    The same lessons as you

    That love is acceptance

    It must come from the heart

    We all have the same purpose

    Though not the same start

    The Lord gave me life

    To live and embrace

    And I’ll do as you do

    But at my own pace

  50. i love how you educate. you do it in such a sweet and nuturing way by sharing yourself and your story. very sweet post and that nella i swear i love her. i just do. the one of her leg thrown up in the air laying on that bea-ti-ful quilt and then the ones of her teary up…just precious. God gave you both a gift the day she was born.

  51. Thank you. And just as my mom raised us to look past–but not ignore–what makes people different to see how we’re all made special by God, I hope to raise my kids so that they’d be those kids who would give Nella a high-five, a hug, a paper towel….

    Thanks for advocating for all special children, and for using your gift of photography to show us the beauty of all children, extra chromosome or not.

  52. kelle, thank you for this beautiful post. you express what i only wish i could. i hope my girls will know how much i love them as much as your girls will know how much you love them.

  53. What an great post!
    I am working solo at my bakery today ( my baby twin boys are at home with Grampie)..your beautiful words have me serving customers with tears in my eyes and an extra big smile on my face!
    Beautiful, special girls!

  54. your girls are both so beautiful and amazing! I just adore seeing pictures of them both!
    and GO NELLA w/ those milestones! I think she’s doing awesome!
    tara
    p.s. where are her cute little glasses?!

  55. Your blog has made me aware. When I see people with Down syndrome I melt. I love them. I think of Nella and your family. In the past I wouldn’t have even given them a second look/thought. thank you!

  56. And then there are people like my sister who went through all kinds of tests because the doctors thought her first born did have Down Syndrome. It turned out he was just developing different from other babies and did not have Down Syndrome, but it caused a huge amount of angst and stress in her pregnancy.

  57. Happy Down Syndrome Awareness Day! Nella is beautiful, as is Lainey. I love the pictures of both of them and yay pigtails!! :)

  58. Excellent post! Thanks so much for sharing your heart. It is always a joy to read your blog.

  59. I love your blog and recommend it daily – and today’s post inspired my first comment. You are truly an inspiration. Before choosing to stay at home with my babies I was a Special Education Teacher and I have told my former colleagues about your blog in hopes that they would share it with the parents and help other parents get to the place where you are – a wonderful, happy place!

  60. So beautiful, Kelle. Thank you.

  61. Ellie wishes Nella a happy 3.21!

  62. Thank you for always sharing from your heart…you have such a beautiful way with words. Thank you for sharing your girls with us.

  63. The paper towel face breaks my heart! Beautiful post.

  64. Beautifully written. I change, hanging here!

  65. I never knew what I know now about DS until I came across your blog. And now, when I see anybody with DS, I smile like I’m in on some big secret because I know, and I understand. To me, an extra chromosome is simply magical.

    Happy World Down Syndrome Awareness Day!

  66. As always, you post and pictures were amazing. I love Nella’s pigtails. My one yr old daughter is also obsessed with paper towels.
    Congratulations on your lovely family!

  67. what a beautiful post… this may seem strange… but here goes… back in june 2007 i was 15 weeks pregnant and already mother to a soon to be 1 yr. old baby girl… two days after my daughter’s birthday we found out that our other baby’s heart had stopped… later we found out that it was because of a rare condition… in the mean time people i barely knew… felt the need to tell me that “everything happens for a reason… that baby obviously had issues… it’s god’s plan… you’re lucky ‘it’ wasn’t born… just think if it would have been born with down syndrome..”… on and on… and i wanted to scream… scream at them and tell them… sure… the baby may have had difficulties… even down syndrome… but i would have loved that baby no less… and i wanted that baby no less… and you know what?… ever since i started reading your blog it only strengthens my conviction that, yes… that baby would not have been a burden… that baby would have been perfect for us… needless to say… thank you…

    e

  68. Love, love, love your blog……found it through a friend only a few months ago, but I’ve read it all! Your girls are beautiful and reading your entries makes me smile and cry happy tears…….happy to be a momma to my little Marley baby, happy to be alive, happy to have so much love in my life. You are inspiring, Kelle!

  69. I’ve been following your blog for awhile now and i don’t know that i’ve ever commented, but i wanted you to know that I LOVE this post (and all the other ones). Your blog is always so inspiring and uplifting. Educating other people is the best way to cut out ignorance 😉

  70. SO SO SO Precious! I love your pictures and I hate to say it the ones where she is crying made me tear up! What a sweet baby girl you have! I also love Lainey in the background of the Leaf pictures her face is priceless!

  71. I see a stunning little girl, who is very loved!

  72. What a beautiful post. And those pigtails absolutely slay me!

  73. Just when I thought I couldn’t be more moved or inspired by your blog…you go and do it anyway! Thank you Kelle! And Happy 3-21!

  74. I always say a prayer when I read your blog. I’m a mother of an adult child with Asperger’s syndrome. We hope he will be able to live on his own, one day. We haven’t come to that day, yet. I understand slow. I sometimes wish for the obvious symptom feature, but Asperger’s doesn’t show that way. Just the social differences and other disorder manifestations. You have a beautiful family.

  75. I’ve bee readign your blog since Nella was born. I rarely comment but check daily for new posts. You and yours sweet little girls have touched many many lives. You are doing a wonderful job. keep the posts coming!

  76. thank you thank you for this. very well written and expressed. beautiful as always!

  77. What a post! Beautiful! Thank you for opening my eyes a little wider to the world around us all! Love the pigtails…too stinking cute! And the papertowel pictures are priceless!! You are an amazing woman!

  78. this one gave me goosebumps. thank you for posting.

  79. Perfect!

    I am a special education teacher/professor and my primary focus is transition…from school to adult life!! I teach high school students with disabilities (all) about leadership and self-determination! They amaze me now and I can only imagine if I had been with them since the beginning!!

    Kudos to Nella…her independence, her determination, and her momma’s willingness to let her be herself are some of the best preparations for the future!!

    You get it!! Awesome!

  80. My son has autism. I love your blog and I’ve been reading it faithfully for over a year now. Thank you for this post!

  81. Cheryl Bailey referred me, and I know why! Beautiful, just beautiful. Thanks for sharing. I’m going to share this on my Facebook page. Should you ever want to be featured as a Wednesday’s Woman on my blog, just ask!

    Jenny in Mi
    http://www.manyhatsmommy.blogspot.com

  82. beautiful post as always…found your blog through a friend on facebook…i check for new posts daily. you inspire me to be a better mother and person every day!

  83. this was such a beautiful post and such a good reminder to all of us about the amazing gift life is no matter who you are or what you’re dealing with.
    xoxo
    andrea

  84. I love reading your blog. Sometimes I want to tell the world about you and other times I want to have your blog all to myself. LOL
    So glad I found you. You inspire me every time you write.

  85. Congrats Nella on a great evaluation! We all know how freaking amazing she is!
    I just don’t know how it’s possible for me to fall more in love with your blog every stinking time you post!??
    Piggy Tails–OMG love.
    And Nella’s sad face regarding paper towel: OMG broke my heart. Sitting here and I let out a big, “Awwwwww…….”
    I am just in awe how you capture these moments on your camera. Truly inspirational.
    Thank you for a great post!!

  86. Lovely post. Thank you for sharing your life, your story, Nella’s story with us. For making us aware, and nurturing our understanding, compassion, acceptance through your guiding words. My children often read your blog over my shoulder. Nella has become a household name (as I am sure she is for many of your readers). My boys (Max 14, Henry, 12) always comment on how much Nella’s expressions remind them of their 13 month old sister -who does not have Down Syndrome. I only mention that because despite whatever difficulties or set backs Nella might encounter, she is the face of every child. Her smile exudes this sense of boundless joy. She has touched our lives, for sure.

  87. Thank you for speaking on behalf of all special needs families! You are such an inspiration to so many!

  88. well said!

    and could nella be any cuter?!! her outfits are fantastic, by the way :)

    i,too, hate the “R-word”. It makes me cringe every time i hear it..

    God bless you all!

  89. Kelle,

    This post was deeply moving, and I read it very slowly so that I could take in every word. I am so glad that you addressed the “r” word. In the past, I also used it in “flip” ways, never thinking whether I was offending anyone. Then our little one arrived last year, and now it’s like a knife in my heart when I hear it. I actually had a neighbor (doctor) say it to me about a month after our baby arrived. I always wondered if it bothered her afterwards…

    As always, thank you for all that you have done for me and for many others, and for giving us a glimpse of your beautiful life.

  90. One of my favorite posts….so sweet:) I babysat Betsy (she has down syndrome) when I was 16 for about 3 years. She was 3 when I started, I remeber her parents and siblings leaving her with me while they went and did all these fun things. I saw no difference between her and her siblings, she was the funniest, sweetest, sassiest girl! I started asking them if I could take her places and they asked me “do you really want to” I took her all over when I babysat her, she went to my high school sporting events and all my high school friends loved her too. Her parents finally saw that she was no different and a year later thanked me for opening their eyes. I am happy to say that Betsy is graduating from high school in May and is amazing!

  91. Beautiful, eloquent and a 3-21 cutie ready for the world to open their arms and welcome her!

    Thank you for sharing your beautiful family.

  92. Happy 3-21 Day!! We are celebrating that wonderful extra chromosome at our house too. I can’t believe how much Nella has grown in the last month or 2. Thank you making such a difference, for increasing awareness of those who just happen to have Down Syndrome. And please, give her back the paper towel 😉

  93. this post is beautiful. I am once again tearing up because of your amazing words, your beautiful family, and I will admit a few tears are because of Nella’s pigtails!! LOVE THEM!! I could totally relate to this post and the conversation you had at the dinner party while pregnant. With my first child, K, the Dr thought she might have Down Syndrome. I was scared, so afraid. But hubs and I decided to not do any of the tests, it wouldn’t change anything and we wouldn’t do anything different, so we would wait. K came and no Down syndrome. I have always believed God gives you what you can handle. And lady, you “handle” this beautifully, amazingly. You have educated me more than any of the books I read or articles I googled. So for that, thank you. I pass your blog and story on to others every chance I get. You truly are an inspiration. (And Nella being the cutest baby EVER doesn’t hurt!!) =) God Bless!

  94. You wrote “They both are lovely, and we are lucky.” So, so true. Nella is looking like such a toddler these days. The sweet baby has turned into such a beautiful capable big girl.

  95. We do not have “disabilities” but “different abilities” each and everyone of us:)

  96. Love it…simply love it…sharing it…enjoy the day…if we were not uniquely different from each other, how boring the world would be!

  97. Kelle, at plus15 campaign (www.plus15.org), we follow your blog with laughter and tears. You may want to see the amazing photos our community of moms, dads, brothers, sisters, grandparents, aunts and uncles have shared with us in honor of World Down Syndrome Day.
    http://www.flickr.com/photos/plus15campaign/
    Our goal is to raise awareness around the need for more funding for Down syndrome cognition research, and also to raise money for our own funding of this research. We’re adding faces and a message “One of them is ME!” to our campaign. Thanks for all you do.

  98. THANK YOU for posting about the r-word! I love your analogy about the tortoise and the hare. I’m going to start using that (and of course I’ll direct everyone back here to find it)! Love your blog.

  99. Oh my goodness… I know your girls are their own unique little people, but put Nella’s hair into pigtails and suddenly she looks SO much like Lainey. :)

  100. Thank you, thank you so much for your beautiful words. I needed them today.

  101. What a little beauty!!

  102. First – holy cute pigtails, batman. Adorable. And…(maybe more importantly, maybe not)…thank you. Being a mom has changed the way I think about nearly everything. Talking with my husband about the possibility of TTC for #2 has spurred conversations about DS, how scared we’d be, how much we’d love our child of course, and everything in between. I can honestly say that your blog has helped ease the fear factor, even if just a little.

    As for the “r word” I have noticed how frequently it is used among friends, peers and family and have made a conscious effort to not use it, and remind those around me not to either. Sorry for the rambling, but this post is just timely for a lot of recent soul searching, and I’m grateful for the glimpse you give into your life – DS related and not. xo

  103. Ok, the little sad/crying/I may through a tantrum cuz you took my paper towel face is so adorable! When my 17 month old does that face or starts a tantrum, I have to hide my smile because she’s just so indignant and upset yet so friggin cute at the same time!
    I wish our toddler girls could play sidewalk chalk together. Although my girl eats it more than colors with it :)

  104. Beautifully said… My best friend’s brother was born 13 years ago with Down Syndrome and we both swore off saying the “r” word. Ever since then, every time I hear that word, I stop and kindly ask them not to use it. I love how you make it a part of your life and not your life. I have a profound hearing loss due to a childhood illness and my parents lived the same way. They could shape their life around the fact that I couldn’t hear OR they could embrace that despite my hearing loss, I survived the illness and I was now healthy and happy. Thank you again for sharing. :-)

  105. LOVE Lainey’s protective little hand on Nella’s side in the picture of them on the bed. She’ll make a great little mama one day!

  106. Beautiful- as usual. I love that picture of Nella and your step son foreheads together. So sweet!

    Also- my son is 17 months old and has the same world-ending meltdown when I take his paper towels away.

  107. I have read your blog here and there and I think you put our thoughts into words so well. This is a beautiful post. I feel strongly about what you have written, but it helps to have a reminder to be aware of the person not the differences that they have.

    I hope you don’t mind if I share your post on facebook.

  108. Kelle, seriously those pictures of Nella and the toilet paper had me in tears. She is sooo cute, Tyce does that too!

  109. Your post was wonderful to read!
    It’s funny, I always forget that Nella has Down Syndrome. Well, maybe not forget, but it isn’t the focus for me. I just see a wonderful little girl! Which of course she is!
    But I love reading about her, and her triumphs, and it’s really inspirational to me. And that’s in large part to you, and how you choose to raise her. And that’s inspirational as well!

  110. My 14 (almost 15) month old actually got therapy from Debra Beckman (of Beckman Oral Motor fame) for the first several months of his life because he had significant oral-motor issues. And I have two friends in town how were trained under her as well. It’s amazing what resources are out there for our children. I only wish all mom’s were able to utilize them!

    She was wonderful, and it was so fun to catch that little snippet on this post about Nella having the same techniques done. :-)

  111. An inspiration.

  112. I love how you can make me go from the ugly cry to the ugly laugh in one post! haha! Nellas a rockstar we all know that! I love the pigtails! So,so,so adorable! Keep on doing what you do girl! Your whole family is an inspiration and I see a whole lotta happy love. I love it.Thank you!!

  113. I am so in love with this post and all of the shots of your girls! You always seem to say what we mamas feel, thank you!

  114. Go Nella for whooping her one year therapy appointment! My Daughter was just discharged from her Early Intervention Therapy, and I cried like a baby, I was so happy and proud and amazed by how fast she’s growing and how far she’s come.

    I think all Little one’s have a great inner badass.

  115. Absolutely wonderful.

  116. Those little white bows on those tiny blonde pigtails are just PERFECTION. Thank you for sharing. Just beautiful.

  117. love this post! please give nella back her paper towel…she’s too cute to be that sad! 😉

  118. I could say so many things about this beautifully written post – I LOVE the pigtails! :)

  119. So beautiful.. Thank you x

  120. Simply beautiful!

  121. Wow, she is such a sweetie. I know that children with down syndrome are very special and that God put them here so that we could learn from them. She is so precious. This post gave me a greater understanding of children with special needs, so thank you for all you do.

  122. Amazing post. I agree that the “r-word” can be very degrading. I, too, was one of those people who had said it before without even thinking of how it’d come off or who it could hurt. I look back on those times and regret ever using that word.

    I fell in love with my husband after watching him interact with his aunt who has cerebral palsy and is mentally handicapped…or as we like to say – handiCAPABLE. Watching him talk with her and help her and joke around with her and LOVE on her…melted my heart. She has brought so much joy and love to my life. My life wouldn’t be the same without Peggy in it – she always brings a smile to my face and has taught me so much about myself. She is loving, funny, a hard worker, amazing, beautiful and perfect just the way she is.

    Thank you for speaking out about Down Syndrome and all the amazing people out there that have it and for telling their stories. Thank you for giving us your perspective and for always being so honest about your feelings – whether they’re fears or those big BOO-YA moments when Nella reaches a milestone just like any other kid in this world. :-)

  123. Beautiful post to celebrate our beautiful children!

  124. I’m not sure why but the pic of Nella and your son with their foreheads touching made me stop and stare with tears filling in my eyes. The innocence of them both..the love that comes from a big brother… we all know his love for her will grow stronger and stronger, always protecting his baby sister!! Oh, how she’ll teach him such deep love.

  125. Kelle,
    You truly are an inspiration to the world! I came across your blog a few months ago and everytime I log into my google reader and see that you have updated your blog I immediately click to read on. You make me smile, you make me laugh, you make me cry, and most of all you make me live for the moment each and every day. You have the most beautiful family in the world and you are a super dooper amazing photog as well! I even listen to your playlist all day at work as I just totally love your music choices. Infact, last night I listend to “Summer Skin” by Death Cab for Cutie and immediately thought that song would go perfectly on your playlist. Youtube it – its a great tune. Just thought I would share it with you! It gets you in that fun summer mode :) (I live in Canada, close to Toronto so we aren’t quite enjoying the summertime weather you are right now)
    Just wanted to say THANK YOU, for your fabulous blog and for being such a fabulous person yourself!
    Happy trails,
    Julie :)

  126. I have chills, thank you for such a beautiful post.

  127. Kelle, Thanks so much for helping to make others aware of how just how beautiful the “chromosomally enhanced” life can be. We celebrate our little guy (who happens to have DS) today & everyday. :)

  128. Love it, Kelle. Love it. Just beautiful. Thank you for this blog.

  129. Kelle- I came to your blog and it played the song from Twilight. I immediately started to cry. This is the song that I used to listen to as I tried to relax while I was pregnant with Abby. I used to put the ipod speakers on my tummy, so she could listen, too. We didn’t know until she was born that she had Down syndrome, either. Your post was beautiful. Happy Down syndrome day!

  130. Those are two beautiful girls!

  131. Perfect words, beautiful girls and in love with your life.
    I myself am on a journey with my kid, don’t know where it is heading but I have all I need a mummy’s infinite love.
    Thank you for sharing.

  132. This is good stuff Kelle, very good stuff!

  133. I’m a regular reader, but not a regular commenter. I just wanted to say that this post is beautiful and inspiring. You really have done so much good with this blog.

  134. Thanks for sharing Kelle. Beautiful as always- both your words and your heart. (-: I appreciate being allowed to follow along on your journey!

  135. I have a niece with down’s and she has 3 other sister’s with 46 chromosomes but there is something just extra special about Kenzie that none of us would ever trade!

    Her heart and spirit are something that could never be replaced and we cherish!

    Thank you for sharing your daughter and her story/journey with us. You have insipired me to show people how incredible someone with Downs is and how quickly they capture your heart!!

  136. Ahhh… I come here for the “O!” face EVERY. SINGLE. DAY. Sweet girls make my day. Your writing makes the world of motherhood, extra chromosones or not … way more beautiful. And I am so, SO relieved to know that even Amazing Superheroes like Nella eat paper towels too. Now I can tell my one year old she’s COMPLETELY NORMAL, instead of Crazy Fiber Addicted like I was thinking. :-) Hugs.

  137. Beautiful Kelle!
    I love that you added the fact that had you known before she arrived, it would’ve have changed a thing. I actually never even took the DS tests when I was pregnant. I told them it didn’t make a difference to me. He was mine.

    Gotta say, I love the picture of Nella where Lainey’s in the background making a goofy face. Had me cracking up. :)

  138. You are such an amazing mother! Thank you for sharing this with us!

  139. GREAT POST TODAY! :o) Gonna share!

    Love the pics of Nella on the verge of tears! Just so cute! Pig tails! Oh my, adorable!

  140. My daughter who is 14 now has Turner Syndrome and is missing a whole x chromosome. She is the sweetest best daughter I could ever imagine having. Yes she has some medical issues but nothing serious. She had physical and occupational therapy from the time she was a baby through 3rd grade. At one and 1/2 her teacher who came once a week to our house was asking her to build a big block tower for an evaluation. Well my daughter who has never said anything like this since then said “I don’t want to stack anymore damn blocks.” We were all surprised and laughing. Thank you for your incredible blog. I visit often but this is the first time I have ever commented.

    Gwen in Pensacola, FL

  141. I can’t believe you took her paper towel away…although her sad face is just as cute as her happy face! Today is a reminder of just how lucky we are to be blessed with that something extra! Beautiful post in honor of our beautiful babies!

  142. You have a way with words sister! Nella is the prettiest little girl on the block…i just love her sad face….to sweet! She MELTS my heart!

  143. L-O-V-E the crying pictures! She looks so much like Lainey in them.

  144. A beautiful post today Kelle….I’ve been thinking about ‘why’ in life we are sometimes ‘given’ our special children?

    I think we are blessed to have been given these amazing souls who continue to teach us about LIFE….about the simple things we often take for granted….how love has no boundaries or borders.

    I’ve found a new purpose through loving our daughter Savannah, as you obviously have in Nella.

    Your wonderful words will continue to educate others on how simple it is to embrace all children, no matter what…that in itself is a miracle…like your gorgeous girl Nella!

    with love
    Diana x

  145. Love your post today! Thank you! I am always looking forward to what you have to “say”. I have to tell you, while reading your post I was holding my 8 month old daughter and while looking at sweet Nella’s pigtails and she made a squeal/giggle sound I never heard before! So precious! My girl was trying to talk to Nella! :)

  146. There are so many wonderful things to say about this post…too many that I know I’ll forget some. first, this might be one of my very favorite posts of yours ever. Ever.

    Thank you for bringing attention to the ugliness of the “r word.” I do not have a special needs child but cringe every time I hear the word…such an uneducated way to refer to someone or some time in place. Your blog touches so many so hopefully it will change even one person’s terminology.

    Love all the pictures…from the pigtails to the pictures with the boys and then the paper towel pics.

    Thanks for this poignant post today…love it.

    http://www.piggfamilyblog.blogspot.com
    http://www.ourcupsrunnethover.com/blog

  147. A moving and thought provoking post. My brother has aspergers and we have all dealt with his acceptance by others, and been hurt by rejection at times. With such a loving mama, who cares not just for her special little girl but others, Nella will have the best support any child could hope for. Thanks Kelle.

  148. The picture of her crying is breaking my heart. “That’s my daughter in the water” isn’t helping.

  149. Amazing testimony for Down Syndrome Awareness day. We’re all different, thank God, but it always astonishes me how we are all really the same.

  150. I rarely comment simply because I think it might get lost in the crowd, but I wanted to today. This post is great. I love that you write about things you didn’t know before but would like people to know now; not degrading but simply sharing. I know Nella is going to do great things!

  151. that got to me! as a mummy of an adorable little girl who has smith magenis syndrome, you sum it up beautifully. thankyou thankyou thankyou xxjane x

  152. “Respect” is the new R-Word. I have this sign hung in my classroom-A classroom filled with 8 amazing kiddos that have some kind of disability. It is all about educating people to make this world better for people with disabilities. I know you live in Florida, but in a couple of years Nella will want to go to Summer Camp just like her sister-There is a place Camp ASCCA-Alabama Special Camp for Children and Adults with Disabilities. The largest and BEST camp for children and adults with disabilities in the world! Check it out: http://www.campascca.org-It will change your life! Thanks for making people aware!

  153. the pictures of the paper towel exchange are classic. Love them!

  154. well said! todays entry is just another reason i love, love, LOVE your blog.

  155. Your babies are so beautiful and I love to read your blog! I had my first baby girl last July (Cailyn “Scout”) and girls are simply wonderful!!! I love little baby boys too but little girls…well…you know. They are something pretty special! :)

  156. thank you for sharing your story, and for Nella’s first pigtails which are beyond words, and for Lainie cozied up with her little sis on the bed and for the crying paper towel face which had me in stitches.

    Thank you for teaching us all how to be better mamas and more tolerant people.

    thanks for what is always a great laugh or great cry during my otherwise tedious work day.

    thanks for being you.

  157. Wow. With her hair up in those sweet little pigtails, Nella looks just like her big sister!

    Thank you so much for writing such a beautiful blog. I adore reading, and so do my boys (3 and 1). They love to point at pictures of “bubba” Nella and my 3-year-old has even asked if we could visit to play. :) Might be a bit hard when we live in New Zealand! If nothing else, your blog has made me determined to teach my boys to see the person, not the syndrome, because that is what Nella (and you) have taught me. Thank you.

  158. This DEFINITELY made me tear up a bit. Thank you SO SO SO SO SO SO (x million) for sharing this! Love the pictures and the paper towel sequence. Hilarious!

    Quoting from Temple Grandin–“Different, but not less.” I say AMEN to that!!

  159. Nella is starting to look like a “little girl” and not a “baby” anymore!

  160. This was such an inspiring post. Your pictures are so adorable. You are such a great mom and I love reading about your family!

    melstevens1.blogspot.com

  161. Thank you for writing and sharing …i love every sentence you write and every word you say.Amazing!:)Beautiful girls, both of them…Hugs from Norway.

  162. I am not blessed with a child with an extra chromosome but sometimes I wish for one! Because of your blog about Nella and other blogs about those adopting kids just as unique as Nella….I have been lead to consider adoption of a sweet boy in another country that will face an institution in less than a year just because and only because he has an extra chromosome….Today, on World Down Syndrome Day, I joined the “sisterhood” that I long to belong to and blogged about Elden…the boy born in my heart that I ache to bring home. I would be honnored if you would take a glance at it. You can see how your little Nella via you telling her/your story, is helping others a half a world away find a family that will love them for who they are instead of who society thinks they should be. Thanks for putting into words so beautifully…your life!!!

    http://jjberggren.blogspot.com/2011/03/21-3-11-world-down-syndrome-day.html

  163. I am absolutely guilty of using the “R” word. Most times, like you mentioned, I use it in reference to myself. And I shouldn’t. And I’m going to try to delete it from my vocabulary. Thanks for the push to do so. I think I needed it.

    Your blog–and your girls–are a true delight. Enjoy your day…

    Beth

  164. Amazing. I dare to reverse Ms Oliver’s wisdom… By telling about your beautiful children, you astonish us, and we begin to pay attention to our children and the world we wish to raise them in. A world where every child is not only loved and cherished, but fully appreciated for their unique capabilities. What a gift you have given to us. Thank you!

    And, Nella’s piggies. C’mon?! Adorable!

    Kathleen in Chicago

  165. beautiful, absolutely beautiful

  166. Your blog always inspires me, but on a day that we are 2 hours away from a cerebral palsy diagnosis, this couldn’t have been more well timed. A different condition, but similar feelings as a mom. Thank-you.

  167. I work in genetic research, William’s syndrome to be exact. I had never heard of it until I took the position. I’ve been at the medical school for almost 3 years now, working with this amazing geneticist and as brilliant as she is, I’ve learned so much from the families. I love each and every one of them and I feel my life has been blessed by them. I cannot by any stretch of the imagination know what they’re going through because I don’t have a chid missing genetic material on chromosome #7…but I try to be there for them…their needs, their venting, their triumphs and misses. You’re a fabulous mom, don’t ever forget that.

  168. Excellent post! I’ve always hated the “R” word and cringe when people use it. In fact, I remember in that movie “Something About Mary” there was some scene in the beginning where some kids are making fun of children with special needs (don’t remember if they used the R word or not). I was just sick watching it – and to think it was a huge hit. I hated that movie and the fact that people laugh at others being treated that way.

    I love the post above where someone wrote “Respect is the new R word.” That is great! Thanks for the post.

  169. This comment has been removed by the author.

  170. Your photos are always beautiful and
    your ideas are brilliant!

  171. Beautiful!!! Crying!!!

  172. muchas gracias! so well said….I have a son with Asperger’s and I really needed to hear your words today.

  173. THANK YOU KELLE!!! For making Down syndrome something that is easier to ‘talk” about. Thank you for sharing your story, pictures, heart. I do not think you will ever no how many people you impacted. I also believe you have saved lives.. Because you made it look less scary. Hugs.

    I think we have all done some looking back today. This week, this month. I wrote this on Fb today

    If I could go back in time to June 10th 2008 on the 6th floor at about 2:00 pm I would tell myself a couple of things.
    There IS LIFE after Down syndrome
    There is going to happy times
    There is going to be times that make you question why me why now but then there are times that you say why not?
    She Will walk and when she does you will sing praises and cry like a baby
    She WILL talk
    She WILL play with babies and dress up and other things that little girls do.
    She WILL make your life richer and better
    She WILL do things in her time and when she does they are even extra sweeter.
    She IS a Gift that God gave us.
    She WILL make your marriage stronger
    She WILL make you closer to God and have conversation with him you never thought you would.

  174. Beautiful post…and adorable girl.What a blessing she is!

  175. Thank you so much for sharing. She is beautiful Kelle.
    WOW!! She climbed into the bath tub!! … My 16 month old who does not have Down Syndrome has yet to do that…. there is no holding this girl back… :)

  176. I work with children with special needs every summer, I’m training to be a Learning Disability nurse, but I’ve never learnt as much from all that experience as I do from reading your blog. I know what it’s like to care for children with special needs but that’s one week at a time for 8 weeks a year; never 24/7, 365 days of the year. This post had me in tears. The photos are beautiful and your words are so moving.

  177. What a perfect Post. I work with children who have down syndrome. Its a high school that help prepare them for the future so like any other “Normal” child whatever that may be to, if there are is a child like that. These children are one of the happiness child I have ever seen . Ilove reading your blog because I get to see a parent point of view

  178. You have a beatiful soul.

  179. Wow!! What a beautiful post. I couldn’t agree more with you about the “R” word. Your blog perfectly illustrates how powerful simple words are. We can either use them to spread joy and love – or not. I feel the exact same way about the use of the word gay, as in: “that’s so gay”. What does that even mean?! I love your blog and it’s funny how I really do almost forget that Nella has Down Syndrome until it’s included in one of your posts. She is just such a beautiful little girl!! Here’s hoping that the future holds a more tolerant, accepting world for all of our children, because you are absolutely right – that’s all that any parent wants.
    Thanks for sharing!!

  180. This was beyond beautiful. I sit here pregnant with my 3rd child with tears running down my face reading this. I have 2 boys ages 3 and 1, we do not know the gender of this child, we also choose not to do the screening that checks your baby for Down Syndrome. It doesn’t matter to us, much like it doesn’t matter to you. Lainey and Nella are beautiful, they are loved and their life will be what you as parents make of it. Which as far as I can tell you guys are doing “one helluva job”. God Bless, praying for all of you!

  181. I am so glad I found your blog – Nella lights up the day! She just beautiful and I love looking at photos of her sweet little self. You have opened my eyes to see the beauty in children with syndromes (Down’s or other wise), thank you!

  182. Kelle, I haven’t commented in a while, though I still read daily. But today, I feel compelled to respond. One of my triplets was born with a bilateral cleft lip and palate, and I was astonished at the things people would say about him. Furthermore, I have grown up with a cousin, (who just turned 40) and has Down Syndrome. He is, and always has been amazing. My parents taught us long ago, (as in, elementary school long ago) never to use the word ‘retarded.’ I also wrote a blog post months ago, about that very word and how degrading it is. I applaud you for your encouragement of others to rid their vocabularies of it. Thank you. :)

  183. Thanks so much for sharing this today.

    I love the piggy tail picture. Nella is such a sweetheart.

  184. Beautiful children, beautiful mama, beautiful family. What a wonderful and insightful post. Your blog is my favorite, and I always get so excited when I see there is a new post! Both of your girls are just fabulous!

  185. you are blessed. nella is such a beauty.

    hugs from a mom who LOVES your blog.

  186. this post was absolutely beautiful! i had tears of joy streaming down my cheeks :) i shared the mary oliver quote with others that was amazing… also sent others your way hopefully to read this post!

  187. Kelle I just have to say I love your blog. In just a few shorts months of reading your blog, you have taught me so much. To be honest, I have always had a love for kids with special needs. But after reading your blog I feel like I have a love for Nella just as if she was my own. Your girls are adorable and you are amazing.

  188. You’ve opened my eyes to the world of DS :) Vocab of those around me will be policed :) I’m all over it :)

    I was in tears reading…that is until I got to the paper towel photos and I had to laugh out loud. I have a 17 month old who thinks the world ends when I take garbage away from her.

    It’s good stuff. Your girls are beautiful…and you rule.

    Cheers to celebrating World Down Syndrome Awareness day! We’re celebrating in MI for you!

  189. Kelly, as usual a brilliantly writtedn piece. When I was in High School (I am now 50 so goign back 34 years) a program was introduced at our shcool that I will never forget. It was the TMH program. I cring now because that stood for Trainably Mentally Handicapped. I still can;t believe how awful that name was. But the program was wonderful. There was a classroom of kids, all with Down Syndrome who joined our school. Although they had their own teachers for core subjects, they joined the rest of the school for lunch in the cafeteria, sports days, assemblies, office work and pretty much everything we all did. We taught them to swear and have food fights in the caf, and these kids taught us how wonderful that extra cromosone was. It was a resounding success. One of the most popular jocks had a brother in that class, so that helped with immediate acceptance as Mark was already known to a large circle of kids. There was an unstated rule of no teasing, mimicing and name calling. I think, truth be told, this was one of the best things our school ever did. Integration is everything as we were ahead of the time I think.

    I learned so much from those kids, the program and although I shudder at the name, I was very proud of our school for setting a precident way back when. Like anything it is about education….I think people are at their worst when they lack information.

    You have 4 gorgeous children. You are blessed.

  190. I am a Special Educator, and I know that very soon, the “r-word” will not even be so much of a medical term. The term will now change to “intellectual disability.”Thanks to a very special and beautiful, beautiful girl with Down Syndrome, “Rosa’s Law” will soon take effect and the “r-word” will hopefully become a less-used term. Obama said so!

  191. You have a beautiful family. Your post reminded me of something exquisitely beautiful about a story on the World News Tonight with Peter Jennings in 1986. It was a story about Down Syndrome. I will be blogging about it tomorrow, 3-22-11, because you have reminded me that it’s a story I’ve treasured all these years, unforgettable and powerful. It shed a light for me on the world of Down Syndrome in an incredible unforgettable way. Bless you and your beautiful family. I’ll be back to soak up some more of the love here on your blog

  192. One of my absolutely favorite posts I have read!! Thank you!

  193. heck yes the tortoise won.

  194. perfect and beautiful.

  195. I spent the other day hiking with my son and his two friends. My son and one friend have autism and their friend, a little girl named Erin with DS. She was just a delight…as were the boys! I thought of you and your Nella, what a special life you have, we have.

  196. This was a beautiful, touching, and real post.

    Last week my daughter who is about the same age as Lainey, had her first day of her new park district class…just once a week for little ones to do preschool-ish activities and play, and get used to the concept of doing it without mama staying. I got into the elevator with another young mom, she had a double stroller with two girls in it. I adored her newborn girl facing my way and saw her older daughter’s feet swinging in the front. I asked how everyone was feeling about the whole “drop off” thing since for many of our kids it was the first time…it was exciting. She said kind of quietly oh, well, my daughter will have an aide with her the whole time, she has down syndrome. I had seen these girls all get into the elevator but hadn’t noticed. I don’t know what kind of or if she expects a certain response, but I continued to chat about how exciting this will be for our girls to be “big girls”. Her mom and I really hit it off. I am so glad that our girls will get to be friends. I have thought of you and Nella a lot since we met our new friends last week.

    “I hope you are more aware of every individual’s capabilities and maybe, your own as well.”

    Yes!

  197. oh my gosh, Kelle. You got me with this one. Every female hormone in my body is sobbing as I read this.
    What a beautiful post. What a beautiful life Nella has.
    I love your post about Downs. I wish it was talked about in a more comfortable, normal way. I hate when I hear people whisper it. I hate when it makes Dr’s uncomfortable to talk about blood test and ultrasounds to see if your child is “flawed”. Makes me cry every time. I love your healthy outlook on it and your realistic version of it all. You’re an amazing Mama.

  198. oh that sweet little sad face! she is so precious!!

  199. i pray for Nella’s acceptance through out her life, daily. that may seem strange, since i don’t know you, or her, but in all honesty, i have fallen in love with her smile. she is gorgeous, and maybe it’s her, or the way you are so proud of her, but it make me want to know more about down syndrome!

  200. How do you get such awesome shots of nursing your little one? It looks you take them yourself, and I wish I could but maybe my arms just aren’t long enough! It’s a silly question, but it’d mean a bunch to know the answer.

  201. Amazing post.. yet again. I love to stop by your little corner of the world to see what’s going on in your world. Nella is such an adorable young lady and it’ll be fun to see what amazing things she does in life!! Cause she will be doing amazing things!!

    Growing up I was raised in a home where the R-word did not exist. Now as an adult, it’s a shock to me how many people use the word like there’s nothing wrong with it. In our home it was just as bad to say that word as any other four letter word. Simply because as my father told it, these people are not disabled, but more differently abled. It may take a person with disabilities longer to do something, but they are able to do it. It’s a mind thing and if you give it 110%, that’s all that matters.

    Personally I’m not a fan of the phrase “special needs child” Nella is still a child first, and deserves the people first language so like child with special needs. I’m not sure what the pc phrase is these days, I always like to refer to the child as a person first instead of a label first.

  202. the eyes closed pic of your son made me cry!
    how lovely!

  203. This was so sweet and so moving. That’s all I can say. :)

    ~Kendall

  204. Thank you so much for writing about this. I have been reading your blog for awhile now and everytime I receive the notification on my phone that you’ve posted again, I get overly excited and read it right away. I am not a mother (yet!) and I’m not even married yet, but I think a lot of the day it will happen. I always had the mentality that you were a ‘poor soul’ if you somehow were ‘unlucky’ enough to have a child with special needs. I prayed that that wouldn’t happen to me when I had children. But when I started reading your blog my mentality changed. I saw just how much love you have in your heart for your daugter, and I realize how much of a blessing it is. Thank you for sharing your life with me, you have certainly changed mine. I can’t wait until your next update! :)

  205. Kelle-
    I feel inspired with every post you write and I light up when I see Nella’s face each day. I’m glad that she has a special day to celebrate her uniqueness. I known that she will grow up to be very successful and congrats on the evaluation!

  206. All of a sudden Nella looks so much like Lainey! Maybe it’s the cute hair accessories or maybe just because she’s getting older. They are both beautiful!

  207. Oh, so beautiful.

  208. Kelli, Your post always get me. We just signed a pledged at my daughters’ school to end the use of the r-word. It was amazing to see all the signatures. O.k. now I have to stop writing because the piano music is playing from your blog and it is going to make me cry. I love it. It is so moving!

  209. THANK YOU for the bit on the “R Word”. My boss says it constantly, and at this very moment, she is reading your blog.

    Oh, and my daughter is the same age as Nella…we too have learned the regret of taking away a paper towel this weekend. Tantrum city.

  210. Actually thank YOU for allowing us into your life. Reading your blog has helped me gain more awareness and had made be appreciate my children more just for who they are – nothing more, nothing less.

    I’ve been following you since Nella’s birth and I can’t believe how much your one year old has taught me.

    Your family is amazing and your children are so very lucky to have you as their Mama.

  211. I’m so glad you haven’t allowed your life to become Down Syndrome. So many families do when their child has this, or any other, syndrome.
    Nella is happy and thriving and there’s extra of her to love!

  212. Little Nella is the cutest thing I have EVER seen! So full of joy and beauty! Thank you for sharing her with us, Kel. She is truly a gift from above!

  213. Awesome post.

  214. I love how you write – always. However, today, you outdid yourself. This needs to be read by so many people…

    Nella’s something extra, makes her extra-ordinary in so many ways. She will love more, embrace life fully and bless everyone she comes into contact with. That is what a child with DS brings to their family and the world around them.

    Thanks for sharing that so fully – with raw, honest emotions, but mostly with the beauty that is just being a family who loves their littles.

  215. Not only are your children amazingly lucky to have you as a mother, so are we lucky to be invited into your life and allowed to learn from and be inspired by you. Your words of wisdom are a constant reminder of the truly important things in life.

  216. kelle, i had to stop reading because i need to go make these boys dinner but this post is BEAUTIFUL. i am kind of speechless….just hugs and high fives….

    and where did you get the overalls with the ruffled sleeves that nella is wearing? loves.

    also, i am just so blubbering and crazed right now but when the pics of nella and pigtails/bows came around i was just pointing and saying “oh my god cuuuute” over and over and my husband just has to laugh at me.

  217. kelle, i had to stop reading because i need to go make these boys dinner but this post is BEAUTIFUL. i am kind of speechless….just hugs and high fives….

    and where did you get the overalls with the ruffled sleeves that nella is wearing? loves.

    also, i am just so blubbering and crazed right now but when the pics of nella and pigtails/bows came around i was just pointing and saying “oh my god cuuuute” over and over and my husband just has to laugh at me.

  218. pigtails!? yes!!

  219. I think most of us are “special needs”, except that for a majority of us it’s not as obvious as moon shaped eyes. I like to think that we are all missing something but also making up for it in other ways. Maybe one day we can all accept that and be happy we are all whole…just not in the most balanced way:)

  220. Kelle i LOVE this post and your beautiful family! i swear when i glaced at the pigtail picture of Nella from the back that i thought it was Lainey!!! she looks so big lately she needs to stop growing :) and her crying face is classic, she has such a cute pouty face i bet she gets dad everytime with this!

  221. This has to be my favorite post by you yet. Your passion inspires me in ways I never thought possible. I used to work with pre-school children that had special needs, and every child had a story – which touched my heart. Every one of them changed who I am. I recently made a pledge to “Spread The Word To End The Word” on http://www.r-word.org. You’re such a great person and wonderful inspiration!

  222. It is so wonderful the great awareness you are bringing to Down Syndrome! Oh and those “paper towel” pics were so cute I almost cried! :)

  223. Thank you so much for sharing all that you do, reading has been and will continue to be a great blessing. :)

  224. Awesome! Thank you so much for sharing. The R word has always made me cringe. Very intelligent people use it. I don’t get that. My DD is a Little Person. Dwarf is an acceptable term [though I am not crazy about it] Midget is NOT! I just call her Carlee Rae. She’s a darling little thing 😉
    I wish I could have a margarita on the beach with you and your girls one day! :)

  225. I agree on the r word. Glee has added a girl with down syndrome to their show, I caught her interview on E! about being on there and what she has been stepping out about lately that has caught quite a buzz. She said she and her mom are working on getting the r word erased from the normal day vocab, She also talked about what other kids were calling her at school which broke my heart and made me cry but to see how she handles it and says they don’t understand how it hurts and she wants to change that, so amazing. I am hoping one day for people no to pick on others like this, I know it will have..

    Also I love the picture of nella playing with the leaf,the one on the left, lainey’s face in the background is hilarious

  226. I love the paper towel eating. We have one of those in our house although our 12 month old loves toilet paper. We can no longer gang it on the holder because as soon as she sees it bam it’s straight in her mouth :-)

  227. Happy World Down Syndrome Day!♥

  228. Kelle,

    This post gave me chills. That opening part about being with your girlfriends, all pregnant and having the, “What if…” conversation. Oh how I’ve been there.

    Then being pregnant with Solomon when you were pregnant with Nella and reading your birth story…man. It tore at me. It petrified me. I couldn’t get it off my mind.

    And now here we are. Our two close in age girls, our two close in age younger sibs. And things really don’t feel all that different. I don’t think about Nella’s DS because you have been so graceful and brave and honest. But then Sol starts walking and I think about that milestone for you. I do. Even without this post. And I don’t know where to go from here except, bless you and Nella and your family and all your honesty and strength. It has made me a more reflective person.

  229. one of my favorite posts. you are amazing, as is your entire family. Nella has blessed more lives than you will ever know! i feel privileged to watch her grow up via your blog!

  230. What a wonderful, heartfelt post! As a teacher, I am always correcting my high school students about the use of the “R-word.” It drives me nuts when they abuse it so much. I just love all of your pictures. Your girls (and boys) are so adorable. Nella’s crying pictures are just so sweet. Thank you for sharing your story with us.

  231. Gorgeous. All of it. Thanks.

  232. LOVE the pigtails. And I don’t know if I have ever seen a picture of Nella crying! Again, your words inspire me.

  233. I didn’t know that today was Down syndrome awareness day, but when I did, I came straight to your site because I knew there would be a beautiful, meaningful, heart warming post. And you delivered. Thank you for sharing your life, your girls with the world. The love your family has for each other is immense and it brightens my day each time I read about it. You make me think, you make me appreciate all the beauty in my life. Your girls are amazing. When I see them, I see 2 girls, not 2 girls, one with an extra chromosome. And that is beautiful. And beaming is just what you should be.

  234. That r word. Makes the skin crawl off my body. If you ever get a few seconds, (eek, maybe) check youtube for a video by fremd high school student sorean palumbo. It is totally worth the 10 minutes. Thankfully, that is what some of our youth are putting out there. Enjoy!

  235. Happy World Down syndrome Awareness day! Tears…A powerful and heartfelt post! LOVE your beautiful girls and this post :))).

    “Pay attention to the person, the child, the soul—not the wheelchair, the chromosome, the difference. Allow yourself to be astonished—to learn something new from someone, to be inspired, to laugh, to enjoy a moment. And then pass it on. Spread your awareness message by the way you live, the way you speak and the way you treat people.” Perfectly said!

    Thank you so much for raising awareness and for showing the world how beautiful, amazing and capable are all individuals with Ds. And, I feel the same way about the offensive use of “the R-word”. It is a derogatory term that can hurt people’s feelings…

    “So, as I move out into the world, I live out my uniqueness, but when I dare look into my core, I come upon the one common center where all lives begin. In that center, we are one and the same. In this way, we live out the paradox of being both unique and the same. For mysteriously and powerfully, when I look deep enough into you, I find me, and when you dare to hear my fear in the recess of your heart, you recognize it as your secret that you thought no one else knew. And that unexpected wholeness that is more than each of us, but common to all -that moment of unity is the atom of God.” ~Mark Nepo

  236. Such a great post. I love the similarities that you see in your girls and I think about what you say all the time – “more alike than different” It’s so true. I don’t think I’ve ever seen a pic of Nella not smiling – she is a dolly even when she’s crying! As always, thanks for sharing.

  237. I will never use the word again. You have educated me. You are amazing and so genuine!!

  238. Love this post. Nella is beautiful… and if you were in Chicago or if I was in Florida, I would pick her for a playdate in a heartbeat! My girl (and my boy!) are just a month younger than Nella, and they would love to play with her!

    Also… LOVE Lainey’s face in the background in the photo of Nella with the leaf! My older girl is the same age as Lainey… and I know they’d get along great!

  239. Gorgeous words. Gorgeous lives. Gorgeous tears, that being said, this is probably the first time I’ve seen pics of Nella crying. A testament to the beautiful happy life she’ll always be blessed with.

  240. I didn’t even know it was National DS Awareness day, but I had the privilege of working with a magically chromosomed kiddo (age 4) today. She amazed me with her strong memory skills, her insistence that SHE was the school psychologist and should be testing ME, her amazing flexibility as she flipped herself in and out of the chair, and her contagious giggle. And I can’t even lie – I thought of Nella several times, wondering what *she* will be like at 4. We are all so privileged to share her journey!!

  241. Well said.

  242. you are an amazing mother, what beautiful family you have.

  243. I loved this post and am so embarassed to say that I did not get the connection between 3-21 and 3 21st chromosomes until you wrote it out..oh and 3-21 happens to be my husbands birthday and mine was yesterday, I was 32 yrs young on 3-20! I lurv her pigtails (thats one of the things I listed on the previous post that i never get tired of..little girls in pigtails)! I also have a one year old so I can relate to the paper eating- I tell her she isnt a billy goat and she laughs but then still cries when I take it away :) And finally, I hate the word retarded…my 3 year old (4 in october) was IUGR in the womb (intrauterine growth restriction) and some doctors and books and people called it interuterine growth retarded and I know its medical but I just didnt like it. Anyway, I think thats a great goal for this 3-21 to have yourself and anyone you can influence to use that word appropriately or not at all! Happy Day :)

  244. Thank you for sharing.

  245. I just wrote a blog entry about the r-word. Great minds, right?

    I am so glad that Nella is here, and that she is such a beauty – inside and out. You and she bring so much to so many.

  246. She is so gorgeous!

  247. Great post. As a mama of a child with sensory processing disorder I can totally relate. Most people have never heard of SPD (including me, before my son was diagnosed) and it is very hard to have the child that has major meltdowns b/c the lights are blinking or the store alarm goes off or is not potty trained until he was almost 4. I was near tears reading this until I saw Nella’s sweet face crying over the paper towel. That made me laugh, b/c my daughter did the same thing today when I took away the mail she was chewing on. Love the pigtails!! :)

  248. BEAUTIFUL! <3

  249. I think there are thousands of people who love your Nella. My son (17 months) and pushes me out of the way to see your little girl. He’s in love!

  250. nelle is really starting to look like lainey so much . Im so proud that she is hitting all her milestones.Its remarkable.

    we love you all . and your doing an amazing job, I loved this post and its meaning.

    Happy 3-21 !!!!

    love and blessings the doughtys

    ps. i was really excited to see my comment . made me feel real special :)

  251. Nella has the best cry face.

  252. I am sure you hear this often, but every time I read your blog my heart sings a little. :)

  253. Amazing post. Just amazing.

  254. once again, kelle, i’m moved.

    thank God for that extra chromosome and the extra precious gift it’s given us all in sweet little nella girl!

  255. Kelle, thanks once again for a great post. As a young adult with twpo physical disabilities, you’ve hit the nail on the head with your attitude and outlook. I know I’m thankful for the way my parents raised me, and I know one day Nella will feel the same way too.

  256. Very well written and well said! Thank you for being so open about your life.

  257. I have been a follower for many months but never before have I felt moved to comment on your blog. I mean I have always loved reading your posts and seeing your beautiful children, sharing in a glimpse of your day, your life. But this post is different. It is real. it is poignant. It makes me say “Why isn’t this woman writing a BOOK???” I mean you have IT. You have a gift. Thank you for this. Nella is amazing. Love her last OH face! BTW, just wondering…you get so many comments, do you actually get a chance to read them all?

  258. Amazing post. Nella is beautiful and I LOVE her clothes. She is such a beautiful soul and I forsee her making a HUGE impact on this world. The picture of her crying broke my heart. It must be very hard to say no to her!
    Thanks again for such an uplifting post.

  259. I have tears and chill bumps at the same time. Your words and pictures are beautiful!

  260. What a beautiful post. Nella is such a beauty, and the personality you describe totally comes through in pictures of her. I could look at them all day. She reminds me so much of my little boy … who’s only about six weeks older than her.

    He doesn’t have the extra chromosome, but I see so few differences between them.

    They both have … the blue eyes, the blond hair, the sweet smiles.
    So many of those great 1-year-old facial expressions and habits. Heaven forbid you take a piece of paper out of his mouth (or dog fod or bottle cap or whatever other danger he’s discovered)!

    It’s a joy to read your blog. I think you’ve accomplished your mission … I have learned so much, about Down syndrome, yes, but mostly about the beauty of motherhood, about seizing the moment and loving your life.

    Thanks for letting us come along.

  261. Beautiful post in celebration of a beautiful girl! I loved seeing the Special Olympics Team USA site post this as their Facebook status today. My brother Christopher is a member of Team USA. He, too, has Down Syndrome and we are thrilled that he’ll be representing the USA this summer at the World Games in Greece. Thanks for your amazing post in celebration of these exceptional kiddos in the world – there should be more Nellas and Christophers. :)

  262. Most beautiful post to date!! You have really touched my heart. I was born w/ a cleft lip and the word “defect” needs to be removed from the English language as well. Being thought of as “defective” just irritates me. You are such an inspiration. Wish we had someone like you representing the cleft palate world!

  263. your girls are beautiful. they both are getting so big!

    here’s another great post on why we shouldn’t use the r-word: http://www.theredneckmommy.com/2010/03/05/why-you-shouldnt-use-the-r-word/

  264. Wow- just today a coworker used the ‘r word’ carelessly… and it just makes my stomach sink when i hear it. I had to ask her not to say it, at the very least around me.

    Thank you for the beautiful, enlightening post. As always.

  265. I kept hearing the song The way I am by Ingrid Michaelson in my head as I was reading your blog today. You are a beautiful writer and person, thank you for letting us all be a part of your contagious joy!

    btw Brett’s oldest boy is his mini, they look so much alike!

  266. thank you for this post kelle, and for that matter, thank you for your blog. i’ve learned so much since i started following you last year, and i’m very grateful. i know that down syndrome doesn’t define you–or your family–but you have let it shape you for the better and that is what inspires. i have written my own post today in response to yours. i hope it’s ok that i’ve quoted you and used one of your photos of nella (gave you credit of course). please let me know if that’s not ok and i’ll take it down immediately. much love to you and yours on this special day.
    adriel booker
    http://themommyhoodmemos.blogspot.com/2011/03/do-you-know-about-magic.html

  267. Kelle, i’ve been following your blog for a while. I stumbled across it whilst looking for something else. I just wanted to say I love the love you share of your daughter and your perspective. Ihave a “special needs” child. She has Cerebral Palsy, microcephaly, epilepsy, vision impairment….to name a few. No chromosomal translocations or deletions. I remember thinking at the time she was born, please God not Down Syndrome. I look at your Nella and how much joy she brings you and I wish i could take those words back. I would give anything for a smile and a laugh and a child that could eat properly and crawl and have a semblance of normality. But you know, i love my Lara more than anything and I am glad of her and the lessons she’s taught me. Thanks for continuing to share your story. xo

  268. Oh, Kelle – I can’t get over how much Nella is starting to resemble Lainey. That first B&W picture of Nella – the resemblance made me catch my breath. Beautiful girls, beautiful post. As always.

  269. Your writing always warms my heart and inspires & enriches my spirit. Your little girls and your big guys are absolutely beautiful… They already reflect the beauty that lies within you and your husband. Thank you for this post. Warmest regards to you all.

  270. This comment has been removed by the author.

  271. Kelle Hampton…this is your best blog yet!! If only everyone could see this beautiful world threw your eyes!! Your family is VERY lucky to have you!! Heather Lavigne Saint John, NB

  272. I love you blog and tell anyone who will listen to me to read it. I also teach high school kids and whenever I hear one use the word “retard” I try to enlighten them as to the offensive nature of the word….and I will continue to do so. Thank you for providing me with many, many moments of joy. I just wish I could take pictures of my two grandchildren as lovely as yours.

  273. Beautifully written Kelle, just beautiful. you words brought tears to my eyes. Thank you for your inspiriation

  274. Thank you for this post. :) I am speechless. :)

  275. OH, SUSAN – I just LOVE what you said you wrote on your FB page. How beautiful! KELLE, as always, love your words and photos and your family!! And congrats to the winner of the giveaway – love those giveaways’s! And i love what has been written on the comments here, the new R word – RESPECT!!

  276. Way to pick three songs that made me cry a river. Ugh!

    Today I am so thankful for my Uncle Evan. He lived for 60 years with Down syndrome and loved playing his harmonica along to his record collection. He loved Lawrence Welk and traveled with my grandparents to places like Afghanistan and Turkey and England. He loved his life and he always had a hug for his favorite niece (well, I’d like to think I was his favorite). Thank you for this post and reminding the world that special needs really means special gifts.

  277. Bravo….I can relate on so many levels. Bravo.

  278. Oh Kelle, this post is just so beautiful. From you’re re-telling of that story from your pregnancy, to the stunning pictures of your perfect girl, to the description of what all of us as Mummy’s want for our kids – tears, tears, tears. What an amazing job you are doing of increasing awareness of and empathy for people with special needs. Happy DOWN (I didn’t know that, you taught me something today :) ) syndrome day. While of course we’d all wish Nella all the good health in the world, I believe she came to the world with that extra chromosome because, with her amazing Mummy, she’s going to move mountains! And to help you and her achieve that, I’m passing this blog entry on. Much love xo

  279. Kelle, words fail me. A beautiful post. Between your words, your pictures, the music . . . I think this is my second favorite post you’ve ever written (after Nella’s birth story, which led me to your blog.) This is one I’ll be sharing, re-reading and remembering.

  280. You have such a way with words, Kelle. I love this post! Thanks for the reminder about the “r” word and for putting it out there. You speak the truth in love … something more of us need to do! Hug that sweet Nella for me!

  281. Powerful post Kelle! Thank you for sharing! Gorgeous pictures! The ones of Nella crying make me want to send a whole roll of paper towels.

  282. Just came back from one of my Masters classes at Columbia, where I heard about this campaign…

    http://www.r-word.org/

    Immediately thought of you.

    xxoo

  283. kelle

    thank you. you are changing the lives of many.

    keep up the good work – you are a gem.

  284. Thanks for the great reminder. I think I still want to be accepted but more than anything I want my kids to be who ever they are. I also want them to accept others for who they are and not judge. My Husband has CP and his sister has turners syndrome – they are both so amazing. My Daughter is already so in love with her daddy and thinks he is amazing – hopefully our son – who could be here any day now will feel the same.

    Hope you have a great day – Love the pictures.Children really are all so amazing!

  285. Beautiful words, beautiful pictures and a beautiful family.

  286. Thank you so much for this. My daughter has Turner Syndrome and she is completely perfect and beautiful. Yes, it is sometimes difficult and sad, and sometimes we have bad days… but mostly it’s so so happy. We are so happy. And you explain this balance so well. Thank you.

  287. Happy World Down Syndrome Awareness Day, Kelle. Thank you for enlightening me and inspiring me to be a more understanding, loving mother. Your girls are beautiful. I am a new reader to your blog and look forward to it every day. All the best to you and your family.

  288. 1. you better give that paper towel back to that baby! (hilarious!)

    2. as a long time reader of your blog, i was just reading the other day and i thought, “i barely even see the down syndrome in nella. she just looks like beautiful, little nella.”

  289. Beautiful, absolutely beautiful post. Loved all the educating on Down. It’s SOOOO not the end of the world and Down syndrome needs a MUCH better PR campaign. I’m thinking you are doing an awesome PR job for Down syndrome. Thank you. Love all the pics as usual! Thank you again from the bottom of my heart.

  290. Her overall outfit is SO cute! What an uplifting post :)

  291. Kelle – You seem to not only have an inner baddass, but a way-out-in-the-open one too. Your anecdotes are inspiration for all us mamas! Keep being the amazing mommy you are. And P.S. the piggies are beyond fantastic and the paper towel tears are absolutely priceless. Your photos of that precious girl make my heart happy…..because I see your love her reflecting back out of her eyes.

  292. Hey Kelle. I want u to know that I have no Internet at home tonight and I have u here on my handy cracked iPhone. Anyway, I follow you and love your heart. Thank you. Heather

  293. Fantastic post Kelle! You have such a way with words and I want you know that since reading your blog I have been more mindful to not use the R-word and also speak up when I hear others use it. You’re right about it being from a place of ignorance rather than malicious intent. But it still hurts.

    I also am SO tickled by Nella’s pigtails…especially since Libby just rocked them for the first time this week too! It’s fun to follow Nella since they’re so close in age (Libby was born on 01.25.10).

    Happy Spring and thank you for bringing awareness to 3.21. As always, you rock!

  294. I love love love her in overalls! She’s an angel.

  295. I always forget about the extra chromosome. All I see when I come here is beauty and love and real.

    Thank you.

  296. Thank you so much for writing. It is so hard for me to hear people use the R-word in a thoughtless inappropriate manner. I struggle with how to approach it (same with the use of the word “gay” to describe something unpleasant). I’m so happy that you use this platform to educate about facts and about compassion and love. Thank you.

  297. I just have to say, every time I see a picture of Nella I think, “what a beautiful child.” You are blessed with two beautiful girls :)

  298. oh I am in love with Nella. I have only been reading your blog for a few weeks, but she has totally captured my heart.

    All your children are beautiful….there is definitely something particularly captivating about her though and I pray she has a life of acceptance and people seeing her for all her amazing qualities and not for anything else.

  299. What a beautiful post and a beautiful family. I too am the mother of a daughter with special needs. Our daughter has a brain disorder that still has no name but affects all aspects of her development. One of the many gifts of having our daugter has been the ability to meet wonderful families and wonderful children who also have challenges and yet learn to soar. Thank you again.

  300. this was beautiful to read. I can admit, and do not even feel ashamed to say, that I cried. I can’t being to fully understand how you must love your children, and how accepting you are of Nella and her extra chromosome. Maybe one day I will fully understand when I have a child of my own, but for now all I can do is say that with each day I grow older I become wiser. You have helped me become a little more wiser in the acceptance and tolerance area in my heart.

    We have all said things we shouldn’t. I say “oh my god” too many times, sometimes I curse when it’s not nessasary, and I’ve even been heard to say “the R-word” here or there, but never to demean. We get swept up in ourselves and sometimes it’s easy to overlook that person affected by what we did or said. But I’ve always been extra careful because I use to be the one getting hurt by peoples actions and phrases so I never intentionally EVER hurt anyone. I’m accepting and loving and anyone who is different isn’t DIFFERENT in my eyes, that is just a part of who they are. Sometimes it can be helped, or changed, and most times…it cannot. That’s when you need to love and accept the hardest of all.

    I accept Nella and every beautiful soul like her. While looking at her pictures I see a beautiful baby girl who I can’t believe is so freaking big because I swear she was just a tiny thing on your LAST POST and now she’s smiling and laughing and pulling herself up. She is beautiful and Nella is how she was made to be: Perfect.

  301. Wow! You have me crying. You are so great at writing what I felt and feel. Thank you!
    Thank you also for the beautiful pictures. They are incredible. My favorites (taking away the paper towel!)

  302. You set perfect examples of how much a mam can love her little ones! Thank you for sharing them with us!

  303. Ok. I’m going to be totally honest here. I have tossed around the “r” word in my past. More often than not it was when I had made a mistake or bad decision. I never connected it to a person with disabilities. After reading your birth story a little more than a year ago, I stopped saying the word. Honestly, the MINUTE I read your blog post about Nella’s birth…it changed me. It not only changed the way I speak, but it has changed my heart. Your story has continued to inspire me. To make me want more out of life. To find contentness and happiness in my home. To make me a better mother. Thank you Kelle for writing the words that have forever changed my life. Thank you Nella for teaching me. You are going to change the word, sweet Nella. I know it in my heart.

  304. I love this post. When I think of my son, who has a gross motor delay, I like to remember the line from one of his Thomas the train books: “Sometimes going slowly is the best way to go.” The part you wrote about the tortoise and the hare reminded me of that line and I thought I’d share!

  305. Well said, Kelle! And, my little one looks much like Nella when I take her kleenex away–don’t mess with Paige. Thank you for taking the time to honor World Down Syndrome Awareness Day. I am so proud of our kiddos and who they are and what they are accomplishing.

  306. Kelle, what a beautiful post. I’m going to share it on facebook :) My brother and his wife just had a baby, she was diagnosed with prader willi syndrome when she was 3 weeks old. She is a beautiful, precious, sweet baby girl who happens to have prader willi syndrome. It is part of her but it isn’t who she is. They, like you, are an inspiration to me!

  307. Thank you. Thank you. Thank you. I am an avid reader, first time commenter.
    My little lady (12months) has cystic fibrosis and is fed through a nasal gastic tube and all I want is the world to understand she is still perfect and beautiful and amazing. Acceptance and knowledge are the key to understnading.

  308. Thank you for educating us. I am in love with you and your blog!

  309. Hi Kelle,

    I am a regular reader ever since discovering your blog. You are one special Mama with a beautiful family and I love how you share your life and thoughts with us (and beautiful photography, of course!)

    Today my colleague gave birth to a baby with Down Syndrome (little sister to a 2 1/2 year old girl). It was a surprise to the family, so they are where you were in January 2010.

    I know she will find great comfort in your blog and in this particular “birthday” post one day.

    We work with kids with developmental challenges and I absolutely love having your loving perspective on the lives of both your children.

  310. Bawling here…! Runny nose and all!

    I’ve spent the last 12 of my 27 years working at our county’s sheltered workshop for disabled adults, and oh honey… you are so right in your words: What we are capable of…to be more.

    They give to us in the most genuine, unselfish way imaginable and what do they ask for in return? Absolutely nothing. A smile, a hello. And we make their day? Nella is a special blessing. She will be amazing. She IS amazing.

    xoxo

  311. I think I got three paragraphs in before the tears started to roll down my face, and when I saw Turners mentioned I lost it. We’re starting the last steps of the diagnosis journey for my daughter next week. Unofficially she has Noonan’s which is used to be referred to as the male version of Turners. I am trying very very very hard to not look at her as a medical condition but instead just as my beautiful angel but its hard as we’re unsure what the future will hold not only with the Noonan diagnosis but also from her heart condition.

    And that paper towel face…I get that one too….so funny but so sad at the same time. And those pigtails…ADORABLE!!!

  312. You’re girls are beautiful…that little Nella – I think someone might have a temper, eh? This is a great post…should be read by ignorant people everywhere…I hated the “R” word. Its just ugly.

  313. You are making a difference in this big world. I know in our tiny world, my 13 year old daughter and I don’t see Down Syndrome anymore when we look at pictures of Nella. We see a beautiful, perfect little girl. So thank you for that!

  314. This was a great piece…I have a Down Syndrome uncle who turned 64 on February 14. He is amazing and manipulative. You will see life differently…I don’t do well not saying anything when people talk about someone or something being retarded because usually they have no clue about the true meaning of the word they are using.

  315. Beautiful Post and beautiful pictures.

    You’ve done it, you know.

    You have raised awareness about Down Syndrome and opened up the hearts of so many of your readers. For me personally, you have made me see, really see, that it doesn’t matter whether you child has a disability/special need or whatever else you want to call it. The love is the same and the important parts of your family are the same. Yes, there may be additional worries and issues, but those can easily happen in any family, special needs or not.

    You go girl!

  316. Hi, I’m a NICU RN outside of Chicago and I just wanted to say your blog is beautiful and makes me happy.

  317. As usual, you said it perfectly. As the mother of a child who has special needs, and is a cancer survivor…it has changed my view of things forever. The “R” word was banished from our world the day she was born and I still cringe when I hear it used in the way I had used it in the past, not meant to be offensive, I just never gave it much thought. I sure do now! Thanks for always putting things in words that I have thought many times!
    Caringbridge.org/visit/Chloemalena

  318. It’s amazing how many of us walk in the same shoes. I too had one of those “moments”, one I actually forgot about until I read this. My cousin and I, very good friends since the beginning of our lives…were sitting across the table from each other. Both pregnant and talking about our beautiful children to be. She mentioned how the dr. wanted to do some tests to see her chance of down syndrome. She replied “no, I don’t want it, it would make no difference to me.” and I replied “we don’t have to worry about that anyway, we’re too young.”
    Thank you for sharing your story, your family and your beautiful little girl!

  319. Because of your sweet Nella…my world has changed
    Because you have allowed me to see that those almond shaped eyes are beautiful…my outlook has changed
    Because you have taught me to see similarities rather then differences…I am a better person.

    Today I am celebrating World Down Syndrome Day in honour of Nella, and every other beautiful, unique, gifted individual who shares that extra special chromosome.

    Thank you opening my mind, my heart, my life.

  320. Does “Small Things” count as a bedtime story? My 22-month-old son, Isaac, and I read your blog together after we put his older brother and sister to bed. We talk about our beautiful friend Nella (who’s hair is getting so long!) And on the nights we need a real bedtime story, we often choose ‘Stinky Face’ too. Thanks again for sharing.

  321. God bless Nella, God bless all these little miracles with an extra chromosome, God bless all who are different. When you think about it, isn’t that all of us really? Who amongst us isn’t different?

    Kelle your post today is a reminder to embrace what iddifferent, live for each glorious moment and take nothing for granted. When I look at Nella’s sweet face I never see a child with Down Syndrome, I see possibility. May we all see the possibility that is right in front of us every day.

    This post was a beautiful breath of fresh air after a long hard winter. Thank you Kelle!

    p.s. The pix of Nella with her big brther where they are head to head, eyes closed is one of my favorite pictures of all time…pure, deep, unconditional love of a big brother for his baby sister. Nella is a lucky girl!

  322. Loved your blog today Kelle! I so enjoy reading about your girls and seeing the lovley photos of your family. I am proud of our 5 year old grandson Caedon, who is a special little boy in our family, He just also happens to have Down Syndrome =)

  323. I want to cut out some of these passages and stick em to my fridge. Beautiful just beautiful. And love your pics of the girls! They are just so beautiful!

  324. Goosebumps reading your beautiful writing & how closely your experience mirrored my own. We had our own strange & prophetic moment while I was still pregnant with Quinn. One of those late night whispering moments where husband & I both said we could not imagine raising a child with Down Syndrome & how lucky we were that our scan result gave us odds of 1:856. How lucky indeed. To be the “1” in that equation. Overcoming my own fears of “different” has been the biggest struggle on this journey but looking back along this path I am amazed & proud if where I am today. My heart opens so much wider, so much easier. I pay attention.
    Thank you for this post & for all that you share with the world.
    xo
    Kate

  325. Wow, I loved this post. We adopted our “Chromosomally Enhanced” daughter when she was 2 1/2 years old from the US foster care system. She was our 12th child. I honestly don’t know how we lived before she arrived. :)

    We are now in the process of bringing home 4 more children with Down Syndrome from Eastern Europe. I guess I just believe the world would be a better place if the Reece’s Rainbow way was to be true. “Because every family deserves the blessing of a child with Down Syndrome” What an amazing gift straight from God these amazing children are to each of us who get the blessing of being touched by them. :)

  326. Sometimes, the thing that seems like it might be the end of your world turns out to be the beginning… Happy 1-21 Kelle, HAPPY 1-21!

    And please, please, give a girl a paper towel! You can make it an organic one if it makes you feel better. 😉

  327. Such a beautiful message Kelle. I shared this with many friends today and they are all thanking me for introducing you to them.
    Your message is simple and true. Be kind to all and try for just one day to walk the shoes of a parent with a disabled child.
    My nephew is Autistic and I wish wish wish that people could for one second imagine what it is like to be in my sister’s shoes when my nephew has a bad day.
    Aside from all that, your photos again are stunning. Nella is just so beautiful and Lainey is sweet as ever. I have to say my favourites from this post are the ones of Nella crying after her T.P. was taken from her. So precious.

  328. I love Mary Oliver and read her religiously…just like your blog.

  329. All I can say is – you are amazing.

  330. What an incredibly beautiful post! Both of your daughters are so beautiful and I love the honesty of this post! How lucky Nella is to have you as her mommy!

  331. beautifully written and so clearly from your heart and soul. i have never seen a crying or sad face picture of nella, and i burst into tears myself and wanted to jump through the computer and give her back her paper towel damnit! nella and the hamptons have truly touched my heart and bring so much beauty and light to my life. thank you.

  332. LOVING Nella’s pigtails! I think she looks so much like Lainey with her pigtails!! Beautiful post!!

  333. Kelle, I read this earlier and have been thinking of sweet Nella in a special way all day. What a blessing she has been to all of us.

    Those little girls sure are lucky to have such amazing big brothers. Austyn and Brandyn look SO grown up all of a sudden.

    Also, those pics of crying Nella? May be the sweetest things I’ve ever seen!

    Then the “Oh!” face. Gets me every time!

  334. Beautiful. (Only word needed)

  335. Nella is exquisite. Every time I read, I wanna just scoop her up. She will bring you so much wonder – and what a blessing, to retain so much of the child like-ness that the 46ers lose.
    My mom worked with developmentally disabled adults for years. She made them a part of our lives by having picnics for all her co-workers, the adults she worked with every day. There was a lady with Down Syndrome, her name was Suzy, and she was the happiest person I have ever met. She and another lady named Phyllis made me want to be an early intervention specialist. God Bless your beautiful little Nella – she’s a wonder!

  336. Bravo! Bravo! Bravo!
    Your post is all over in my google reader and Facebook news feed! Girl, you amaze me! You get a big “Amen!” from this girl! Love you!!!
    Xo.

  337. Just beautiful, Kelle. I’ve never met Nella, but I love her. And I love that she has made so many of us better people. I have no doubt her life will continue to impact people in amazing ways. So many beautiful pictures on this post! I love the piggy tails and laughed out loud at the paper towel pictures. My little ones come to the computer and ask for “babies” which means they want to look at the pictures on your blog. :) And I often call my husband over to look at your beautiful photography, so enjoying your blog is a family affair. I look forward to each post and am so blessed to follow along as you enjoy the small things.

  338. I love this post. Thank you sharing your thoughts and feelings. I love my precious Taylor who came into my life 9 months ago. I love the families I have met because of her. I love your blog and the words you write. Nella is a doll. Love the pics after you took the napkin away. She knows how to work her mama!

  339. I love this post. Thank you sharing your thoughts and feelings. I love my precious Taylor who came into my life 9 months ago. I love the families I have met because of her. I love your blog and the words you write. Nella is a doll. Love the pics after you took the napkin away. She knows how to work her mama!

  340. Kelle, Nella looks SO MUCH like Laniey in the pigtail pictures, and she is absolutely getting cuter and cuter every day! And the TP pictures…just precious! Your blog is wonderful!

  341. Thank you for writing this from the heart. My heart bonded with yours as I read it. Thanks for your precious words and sentiments shared across the continents.

    I love your girls, and Nella’s Oh face in this blog entry is just so precious!!! I really want to just cuddle her all day long.

    You have a wonderful family and a fantastic outlook on life!

  342. beautiful post.

    you truly have a beautiful family

  343. I absolutely love your blog. And the way that you write.

    You have a gorgeous family, each and every one of you!!

  344. You get so many comments, I don’t know if anyone will even read this, but in an attempt to ‘tell about it’, I want you to know how your blog has helped me. And thanks for the facts by the way. I had no idea it was Down and not Down’s. Most of the time I’m not thinking about the fact that Nella has that something extra. I just love seeing and reading about your beautiful daughters, and family life. But a few weeks ago, I was visiting a new church, and standing in a line after the service, I happened to be next to a young woman, maybe late teens, early twenties, with Down Syndrome. She was engrossed in the baby being held by a relative next to her, and I said something like, “Do you like babies? (she nods), “I can tell.” That was about it, but immediately I realized that I felt more comfortable than I had in the past in having a, albeit brief, conversation, because of your blog. That made me feel somewhat ashamed to admit, that in the past I might have not said anything, and how much we unintentionally isolate others who are different than ourselves. But i was forced to admit to myself that it was true. It’s just like when we know someone’s primary language is not English, so we’re not sure how well we’ll be able to communicate, so we don’t bother, especially when the encounter is going to be brief. We all like to think we’re so enlightened, until we’re hit in the head by our own ignorance. So I thank you for this. Regarding the language we use, I do think most people are becoming aware of the inappropriateness of using ‘retarded’ as slang. Thank goodness. But when it comes to being sensitive to the discrimination and stigma of those with mental illness, we all need to do be much more careful about throwing around words like ‘crazy’, ‘drives me nuts’, ‘crackpot’, and so many others. Just sayin. These are so insensitive, and painful to a great many people, and unfortunately, most of us are guilty to one degree or another. Thanks for this post. So beautifully said, as usual.

  345. A perfect reminder, consider the “R” word gone and for bringing this to my attention and so much more to my attention that has left my life that little bit, in fact a whole lot better. Laney :)

  346. Thanks for another insightful and beautiful post.

  347. Your blog has really opened my eyes. When I see your photos of Nella I see a beautiful little girl: I don’t even see the Down Syndrome.

    Because of your blog I make a real effort to make proper eye contact, give a big smile & really acknowledge every person I see on the street with Down Syndrome. I want all people with Down Syndrome to feel the love that Nella obviously feels from you & your family & friends.

  348. Kelle, thank you for sharing you life with this blog. I was pointed here, as I would imagine so many others, with your Nella birth story. Being part of such beauty and grace has really changed me. I am more aware of how I resound to others with a challenge. I finally understood that all these kids/parents want is acceptance. I thank you for that understanding.

    OMG…Nella and that paper towel! My heart is in a puddle!

  349. Beautiful.

  350. This is why I love this blog, you mirror back your love for your girls, and you remind me to do the same to my girls. I think they become the potensial we allow them to have by the way we look at them. No matter what they are born with. Our job is to reflect their inner beauty in a way that builds them up… And I belive you catch this beuty with your camera, every day… so thank you! Its inspiering me to be a better mom

  351. I “high five” you on this post!The DS- kids are Gods angels on earth. They bring joy, smiles, music and greatness into our world! Love the way you share, and I’m totaly in love with your girls! :-)
    My uncle was a kid with DS. He died just 13 years old, so I never got to meet him. My grandmother and my mother have told me so many stories and shared memories about him, so I feel like I know him- and I do love him! I’ve shared your blog with everyone I know, because I love your story, and it’s an important one, which should be shared to make awerness. You’re doing a great job Kelle! Love to you and your family!

  352. Kelle,
    I open my computer everyday to your blog. I am 53 and my 25 year old told me about your blog when Nella was born. You have inspired me, made me laugh and cry. I thank you for sharing your family. God bless all of you. I adore your pics and could just kiss Nella,s cheeks all day. Beautiful post and pics.

  353. Ohhh, my heart just broke seeing Nella crying! I just want to schnuggle her til she gives me that gorgeous smile, or Oh face :)

  354. Kelle, this was beyond inspirational. I, for one, have become significantly more aware of Down syndrome and the beautiful children who have it by reading your blog.

    I just did a post on my own blog, Simply B, talking about being “a bit different but mostly just the same” and referenced you numerous times throughout. Thank you so much for sharing your gifts and insight with the world to make a difference.

  355. Beautiful post and much needed. You are a wonderful advocate for Down syndrome and being a momma of one, I am so thankful your blog is reaching out to so many. Happy week to you and your beauties!!

    Amy

  356. A great post for World DS Day. Thanks for informing people in a beautiful way about our beautiful kids. My 13 year old with DS is in a science class and they are studying genetics. Today he took in a copy of his karotype (picture of his chromosomes) that was done to confirm his diagnosis. A perfect fit with the study of genetics. And you know what, on our journey it is not that big of a deal anymore. Yeah, there is the extra chromosome on the 21st pair but oh the things my boy can do! susan

  357. You have such a wonderful gift when you write Kelle – I thought of you often on Monday when I heard it was Word Down Syndrome Day – you have made my awareness and my knowledge greater – thank you for sharing your life with us – your gorgeous photos with us and helping us to better understand. Hugs to you all. Leanne x

  358. So beautiful. My brother is 34 and has Apraxia and has been called retarded before. I hate, hate, hate, hate that word. Thank you for your inspiring words. And gawsh – Nella’s cry face is ADORABLE.

  359. Beautiful post! And did you realize that if you add the numbers 1-22 and 3-21 you get…..47.

  360. This just might be one of my favorite posts. Thanks for taking the time to reflect on your learnings the past year and putting so eloquently reasons to look past the disability and took to the child, the beautiful soul of the child. The pic of Nella crying is so BEAUTIFUL!! I don’t think I’ve seen a more beautiful picture of a child crying. She’s got quite the soul! And the OH! with the drool! So precious. I could go on and on…one last thanks, for the R word thoughts, right ON!
    Kami

  361. A truly beautiful post, Kelle. It’s funny how we remember the exact conversations during pregnancy about Down syndrome. I had a few very similar, very memorable ones, ones that came back to me instantly when Samantha was born with the extra *something* that changed our lives (for the better).
    Happy World Down Syndrome Day to us all!!

  362. i am always so moved by your writing, your love and your attitude. keep on rockin’!

  363. I am in tears reading this.. Thank you Kelly. I teach kids with almond eyes and this really helps as an educator to hear the words as a mother! Thank you again for your words!

  364. Kelle, you are such a rockstar of a mother. Thank you for sharing and for being a constant reminder to focus on the good even when life doesn’t give you what you expected. It never does. That would be boring! BTW – I love the photo of you with the curls. You’re beautiful inside and out.

  365. OMGoodness your girls are so beautiful, lovely photos and cute little beautiful girls

  366. I am always amazed at how you word things so perfectly. This one left me in tears. God definitely gave you a talent. Your blog following is astounding. I thank God for what you are doing. Every person you touch with your words and pictures showing how normal your life is with Down syndrome helps make the world a better place for every single person with Down syndrome, including my daughter. I really appreciate how to do not focus on Down syndrome but show how it just becomes one piece of many in your life. From the bottom of my heart, thank you for all you do every day.

  367. beautiful, as always. The paper towel pictures made me laugh out loud. Thank you for your kind and loving word to help us all be kinder and more thoughtful humans.

  368. Beautiful… And, yes, I am learning so much from your sharing. New things or being reminded of things I already knew… Your almost-daily posts & pics are Perfect reminders of the Oneness of it all… That loving, laughing, enjoying small things & huge milestones, taking the time to slow down and appreciate each other (whether family, friends, or “strangers”) is all that truly matters in our short time here together.

  369. I love reading certain sentences knowing the careful, loving care you took with crafting it to read, and more importantly be understood, just so. I love knowing you and your family and seeing that you live what you write and you write what you love. Enjoying the Small Things is a way of life and I am so thankful you share yourself and your ethos with the world. Can’t wait to hang on a Florida beach with you soon. (promise me–no bikini shots of me on the blog) xxoo

  370. Some of my most cherished gifts were quite unremarkably wrapped and given serendipitously–with no event or holiday prompting the giving. But oh the wonder I discovered there. Such has been the beauty discovered in this tiny spirit. We had no idea. We braced ourself like those facing tragedy, yet she has opened us to the grandeur that is the purity of life’s greatest treasures. I still wonder, when I look into those eyes that speak of wisdom, if maybe these sweet sojourners know more that we…of God and good and joy and love. Yes, I look at everything differently now. We aren’t defined BY her, but she has certainly helped us to REdefine so many, many things. Happy Down syndrome Awareness Day!

  371. Hi Kelle,
    I can’t go a day without checking for “small things” that will inspire me. And when it comes to the topic of raising awareness I just wanted to let you know how far-reaching your efforts are. I teach college Psychology, Life-Span development, and was astonished at the level of ignorance (which I believe is really just “unawareness”) on the part of students each semester when we touch on DS in our prenatal development chapter. I have been fortunate enough to “meet” Nella, my eyes and my heart have been opened. I realized that I cannot NOT introduce her to these students. Of course each of them will develop their own reaction, but my hope is that your story will help them to connect any variant or “normal” to a real human experience.
    Teaching diversity and acceptance are not part of my teaching outcomes, but you have made me realize that I cannot teach about child development without the goal of inclusion. Most importantly, as you have said “we are all more alike than different”. This IS essentially the underlying theme of Pyshcology and I smile knowing that I have found a wonderful way to illustrate it in “enjoying the small things”. Thank you for continuing to teach and inspire. You are changing perspectives, outlooks, and lives (and of people who may have never heard your story). It appears you have done so just by loving your girls that much. Lucky you…lucky them… lucky us.

  372. Clearly I need to learn how to comment! The above post (and this one I guess) may look sketchy with that screenname but I assure it was heartfelt :) I will work on it!

    Kristin in Ohio

  373. I am guilty of using the R-word on occasion. =/

    But, because of this post and the way it touched my heart today… there will be one less person in the world who uses that demeaning term!

    I vow to never say it again. (Just like I told Oprah that I would no longer text in the car) Lol..

    Your babies are beautiful!

    XOXO

  374. Just wonderful…I have someone in my life with Down Syndrome…and I thank God for her often!! She makes me appreciate even the smallest things in life…best wishes to you and yours….

  375. What a beautiful post Kelle. Thank you for taking us all on this journey with you. I’ve learned so much from enjoying your blog. The word ‘retarded’ is from this day forward, banished from my vocabulary and that of my family’s. Thanks for the insight.

  376. i always love looking into the background of pictures and seeing the people in the back unaware that they are being photoed. the pictures of nella wearing her blue/white striped leggings are so cute but i couldnt help noticing laineys funny face in the picture on the left….so adorable! enjoy your sunny week, alexis

  377. Wow, you are so strong and brave! It is so wonderful and refreshing to read your blog and see how you are making the most our of life! Nella and Lainey are beautiful and inspiring! You are very lucky!

  378. This morning I got up before dawn to take my “new to us” dog out for a walk. It was dark, humid and crisp. A mile into our walk we came across the bus stop. It was still dark, but I saw one girl and one father. I stopped to let the girl pet Buddy, and I realized that she had DS.

    She was beautiful and joyful, and lively at such a dark hour. (me? not so much). I commented that it’s early for the middle school bus, and the father corrected me and said, “no she’s waiting for the high school bus. She’s just a little short in stature.” As I said goodbye to the girl, I said to the father in passing, “she’s not short. She’s perfect. And she’s simply beautiful.” I never looked back as we wandered away.

    I have a daughter. I understand what it’s like to want the world to embrace her and to love her – regardless if she has 46 or 47 chromosomes, a syndrome or just a bad day. I would love for someone to make such a complement.

    P.S. Love the paper towel shots. Oh, those faces!!!

    -Jennifer from Annapolis

  379. Oh, Kelle ~
    Crying over this post for so many reasons! I’ll just leave it at that for now :)

    And the black and white of you (with bangs braided to the side) and Nella is by far my favorite photo to date. I actually gasped when I saw it. You are both SO BEAUTIFUL!

    Much love on 3.21,
    Kelly and Nora

  380. this is one of my favorite posts ever, you are truly an inspiriation kelle! Enjoy your beautiful little family whose pictures have warmed my heart <3

  381. Kelle,
    I am 22 weeks pregnant with my daughter we are naming Copeland. We found out at our gender ultrasound that she has a echogenic focus on her heart which is a soft marker for Down syndrome. You probably already knew that. The rest of the ultrasound turned out normal, my blood tests were fine, and the doctors all say not to freak out. I’m trying not to. I believe that God made Copeland just the way He wanted her, and either way she will be a blessing to us. But it is hard not knowing what to prepare for on her birth day. Your blog, your attitude, and your daughters make it easier for me. Thank you.

  382. xoxo——-You are amazing Kelle!

  383. My cousin passed away in her late 50’s She had downs. My dear friend is 3 months younger than I and he has downs! He is healthy wonderful and has the best family ever.. Kinda like your Nella :) she is blessed as are you all…

  384. Thank you so much for your messages. I first discovered your blog last summer while pregnant for the first time with my son. And yes you did open my eyes to the “real” side of special needs, the family, the love, and the true joy such innocence can bring to your life. But more importantly, you opened my eyes to my future joy of motherhood, the way your heart swells at each and every smile, each cry, and the oh so peaceful way they sleep. So now as I sit here drinking a perfect cup of coffee and watch my little eight month old nap I am perfectly happy and content. Thank you for sharing your family with me and allowing me the privilege of meeting sweat Nella and watching her grow on her path into a beautiful, strong, and special woman.

  385. thank you

  386. I know this post was about Down’s, but like you said, this blog is about your LIFE. I LOVE that you always have your camera ready-these little moments each day are the ones to remember. Pig tails, chalk bellies, tears. Thank you for sharing your life with us. XO

  387. wow. nella is one lucky girl to have a mommy like you. she is perfect in every way.

  388. Love to you and your family Kelle! My youngest sister is special needs, so the thought of having a special wee one was ever-present in my mind, and we accepted that our child would be born the way God intended and we would give it life. Your blog is so important and I am glad you continue to share…so that other woman who are blessed with a special little one will have a “friend” out there who gives them courage to embrace it with GUSTO!! Blessings to you Kelle!

  389. Kelle your babies are precious. I have been reading your blog since Nella was born and your stories continually inspire me as a mom and a person. I was surprised to see you mention Nadia, She is a very dear friend, her and Bart would love to see your story! They host and commentate the special olympics every year, and huge hearts.

  390. Kelle, I hope that people in the medical community read your blog. When I was pregnant at 39, we knew the increased liklihood of DS. But we had also been hoping, praying, trying for this new little life for so long, that we decided not to do an amnio because of the slight chance of miscarriage, and because we knew we would keep her in the event that she had DS. When I went into labor, before my doctor arrived, I was chastised by a medical student, who glanced through my chart and demanded to know why we hadn’t done the amnio. I will never forget her yelling at me about the odds of the baby having DS — I think I called her a few bad names and had her removed from the room. It was inconceivable to her that we would have welcomed a baby with DS — not without sorrow, not without pain, not without the regret of what might have been — but in spite of it. My baby wasn’t born with DS. But if she had been, I can only imagine the “I told you so” that medical student would have greeted her with. I hope to God she has learned something if she’s still dealing with pregnant women.

  391. What a beautiful post. Your words spoke the heart of many Mama’s out there today…myself included. My little girl has spina bifida. All I want for her is acceptance. I want people to notice her sweet smile and blonde pigtails…not her leg braces and walker. Thank you for aying it so perfectly.

  392. Wow, your baby is so so pretty. Congratulations on all that your family has accomplished!

  393. Kelle,

    The way you put words down on your blog never fails to speak volumes!

    My cousin has Down Syndrome and he turns 40 this week! He is an inspiration to all, as he twenty-something years ago was an advocate himself for mainstreaming kids with DS into the school system. Since then he has traveled around the world, held jobs, and is STILL living all by himself!

    He rocks! And so does Nella. And so do we all!

    Jenna

  394. This is one of my favorite posts of yours. So beautifully done.

    I loved the paper towel pictures, baby sad faces can be darn cute

  395. I know this will sound cheesy and corny but thats not my intent, I have picked my badass name, the name that is going to inspire me when I feel depleted, the name that is going to encourage me on days I feel knocked to the ground and that name is Kelle. I don’t know how you do it but you find the words that we wish so badly we knew how to say. Yesterday I was searching for the right way to express myself and how I felt and I couldn’t seem to find the right words but I knew you would and you did. You are doing great things here with your blog and I thank you for it. You are inspiring so many of us in ways you probably don’t even realize. You’re making all of us step back and ask ourselves, Was I present today? Did I give my girls as much as I could today? Did they feel my love today? And even the somewhat smaller things like going to buy a bucket full of chalk, making sure we grab our cameras not just for the big moments, but every moment we can, taking walks, going to the park, baking and crafting with our children. You are showing all of us it may not always be perfect but if we give it our all it will be memorable. So I thank you for allowing us to ride along this journey with you and always finding the words when they seem to escape us, and now I’m going to go rock out my new badass name…starting with the three boxes of chalk I bought this morning!

  396. I love days that you post! Thank you for all that you say and do!

  397. Tears….so beautiful. Always!

  398. I think Nella is the most beautiful little girl I have ever seen! She is perfect, so wonderfully perfect, and you can tell from that contagious grin and the little twinkles in her eyes! Thanks for sharing your inspirational story…you have made me think the “what if” that I never would have, and you have assured me that no matter what, when there is love, love conquers all. <3

  399. “I don’t see chromosomes, I see kids. And that’s what I want the world to see too.” Beautiful Kelle. Just beautiful, true and all any parent wants.

    Nella is beyond amazing and there is reason to celebrate her and other with Down syndrome every day.

    Love the paper towel pics! Why do kids think paper towels, toilet paper and tissues would taste good? At 20 months my son still tries to eat stuff like this.

  400. Love it. I found your blog when I was pregnant, and it completely changed the way I felt about everything – everyone, anything. Thank you for opening my eyes.

  401. SO much goodness in this post: pigtails, another “oh” face (which my 20 month old makes too), and the paper towel series – priceless! I love what you said about how parents want the world to accept their child – your words were beautiful, thank you.

  402. Ive commented a few times on your posts, but this post as really touched me. Thank You Kelly.

    Oh and I have a HUGE space between my BIG toe and it is truly for those flipflops :)

    You are amazing Kelly!

  403. I love this post. When I came to the blurb concerning “the R word,” I smiled and agreed 100%. Ten years ago my mother was a teacher for a special needs preschool class that a local elementary offered and she would always catch us when we used that word and explain how it is hurtful and even offensive to some people, especially those who have challenged friends or family members. Since that time I have always been mindful of replacing that word with one that is more appropriate and not making a negative reference. I try to remind people of the implications of the word that they are using and urge them to broaden their ability to express their point. Our family does not have any special needs children or adults, but we were taught very early to accept and help those sweet angels of the Lord. These children we speak of are many times more sensitive to others and their spirits and feelings and can tune-in to the needs of others. They have no guile and they do not desire to deceive anyone around them. They have the most pure and simple form of trust and love for all around them. Their ease to love and accept anyone is something that I have always envied. What would the world be like if more people were perpetually filled with the trust, values, and child-like innocence that they have?
    Thank you for your post and sharing your story.

  404. Beautiful :)

  405. having a very “down” day today, my baby just turned 2 (our ambassador was born on WDSD) and the “milestones” are slipping away….. its a little bit of fear, a little bit of grief a lot of self doubt. Your post reminded me to embrace him today because that is all we really have the here and today. Love to your family you are blessed.

  406. Kelle….your writing and photography touches my soul! Thanks for sharing your thoughts and for beautifully bringing the appropriate awareness. I will work on my bad habit of using THAT word….thanks for all your do! I will pray for Nella’s future and for pure bliss! GOD BLESS YOU AND YOUR FAMILY!! XOXO

  407. I loved this post. I have a sister with Down syndrome, and she means the world to my entire family, and we feel blessed to have her. What a beautiful family you have!

  408. Pigtails!!! LOVE!!!

    Another amazng blog… how blessed you are to have your beautiful children. :)

  409. Thank You!! I look forward to each of your posts and especially the way you capture your girls from behind your lens. I am lucky enough to be the mom of 3 little boys. When my 5 year old came up to me and asked who’s pictures I was looking at I was happy to say “A Friend”. Thank you for making us all a little more aware my friend.

  410. I want you to know that your writing has changed how I feel about the idea of having to deal with “what if…”. Since you have shared Nella’s story (with such amazing pictures and candor…) it has helped me realize that the end of the “what if” sentence doesn’t need to be “something is wrong” but “something is different”. How would I handle it if I found out that there was something different about my next (purely hypothetical at this moment) baby? Well, I’d handle it. You’ve laid the path for handling it and shown that it’s not only possible, but it is glorious and beautiful. Thank you, Kelle. XO

  411. Your writing is amazing and your photos inspire me to learn to use my camera properly – you have some very precious memories here. I’ve seen your photos used in UK Down Syndrome Association awareness raising but it’s so lovely to read the context to them. Our 2nd daughter was born on 11th Jan 2010 when her sister had not long turned 4, I can relate so well to what you have put down i words here, on motherhood, on life, on Down Syndrome. Thank you

  412. Really beautiful and touching. So glad little Nella is part of our awesome “extra chromo” club :-)

  413. I had that moment before my son was born with Down syndrome–that “we’re in the clear, thank God” moment. And I think about how foolish we sounded, my husband and I, almost bragging that our tests came back negative. Now, we thank God that we got our boy just as he is. Because first and foremost, he is our son, and second or third or fourth or fifth, he has Down syndrome.

    So happy to hear about Nella’s eval, and I LOVE the pigtails!

  414. Adorable–need I say more about the pigtails?! Having a daughter myself, I think reaching pigtails is a special, fun milestone in a little girls life, dont you think??

  415. BERTHA Goddess of all things with persistence fierce power and RAGE …. or Bertha for short

    I was able to find my inner badass this weekend, which led to HOURS of studying. I am sure to pass the comprehensive exam for my Master’s. Thank you for inspiring me to find BERTHA.***** Another point, Thank you for this post! I hate the “R word” and even as an ECSE teacher I needed to be reminded how trashy that word is

  416. Kelle,
    Such beautiful, thoughtful writing!
    And I love the picture of Nella with her hair in piggy tails!
    Thanks also for the mention of my alter ego’s name Elektra.
    xxoo

  417. A friend of mine who is 4 months pregnant with her second child sent me your blog. I am a new mom myself- I had the honor of giving birth to the most beautiful little girl I have ever seen last August.

    My daughter is 7 months old now and to me, she is the most beautiful creature, the most perfect miracle I have ever laid eyes on. I wanted to let you know that you exemplify what a mother is- someone who is filled with unconditional love, pride, patience, and an undying devotion to your children.

    My daughter Maliya has taught me so many things- more than anything else she has truly taught me how to love- and love with no expectations and love unselfishly. She is my greatest gift and the joy of my life. I am thankful every time I see her smile- she truly takes my breath away.

    I am thrilled for your family- what a beautiful and amazing story.

  418. You said so much that I would say about my son. Beautiful.

  419. Your blog in so many ways is an inspiration to me as a mother. I remember reading about Nella’s birth much around the same time my son was born. I love that you share with us a little piece of your life through words and pictures. If anything you’ve inspired me to seize every moment with my son and enjoy all the small things every day. Carpe Diem!

  420. ok, edwards lullaby? love this song. it made me need to go play it on the piano.
    nothing better than great music, great stories, and great pictures!

  421. This post is just beautiful. And it leaves me almost speachless…in fact I could not even comment until 24 hours after reading it the first time. Your words and your perspective leave me feeling very calm, greatful, and hopeful. My life’s journey is a bit steap and bumping at the moment, but your words remind me that the most amazing thigns in life can be quite unexpected.

  422. My three girls wore the same pink overalls that Nella is wearing in some pix. Adorable piggy tails. We call them sprouts when they are that long 😉
    mostly life is amazing and profound but yes I too fear what the future may hold for my little Carly. Gotta say though her big sisters will always be on her side. I love their closeness.
    Mythreefaeries

  423. Beautiful!!

  424. Kelle – thank you! I have been trying to figure out how to say the way I feel about the use of “retard” and “retarded” for months. You inspired me to go ahead and put it out there. I blogged about it today, please check me out! :)

  425. Thank you. I am drawn to your blog because of your positive view of the world and the way you tell it like it is. I struggle keeping a positive view sometimes when I see my middle son struggle to form his words or get mad that he can’t do what his big brother does. Then I take a deep breath and kiss his insanely chubby cheeks and know that he will do things in his own way, in his own time and that is ok too. We are redefining normal in our house as our way of combatting stereotypes and negative words!

  426. what timing.

    i read this post late last night, and today i found out a friend of mine gave birth to her 4th child. and she found out he has Trisomy 13.

    the “if they had known’s” and “makes you wonder if’s” are flying around among everyone, and my mind is calm because of your words still echoing in my head. because at the end of the day, it doesn’t matter. if that baby is in the statistic that says 80% of babies born with this chromosome abnormality don’t live past one month old, it doesn’t matter. he is loved, he was wanted, and he deserved to meet his mama and daddy today.

    thank you for always challenging us to see beyond our own limits.

  427. I have goosebumps. I hope you don’t mind that I’ll be sharing this. This made my breath stop with the beauty I saw in this post. What a loving amazing woman you are and what an absolute Angel Miss Nella is.

  428. Thank you for sharing. Thank you for teaching. Thank you for all.
    Take care and God Bless!!

  429. Beautiful!!!

    Oh sweet Nella – she even smiles when she’s crying. Does it get any sweeter?

  430. CUTEST. CRYING FACE. EVER. I might like it even better than her “ohh” face. It broke and healed my heart at the same time.

    Thanks for sharing your thoughts and photos with the world!

  431. Absolutely beautiful! My youngest sister, Mary, who is 18, has an extra 21st chromosome, too! My sister & your gorgeous Nella are angels sent by God to make this world a better place :)

  432. This is one of the most eloquent writings on the issues surrounding Down Syndrome that I have ever read! Thank you for writing the words that have been in my heart for over 7 years now! We celebrated Monday as well with our angel as it was such a wonderful reminder of the gift that she is to our family.

    Thank you so much for what you have done for the Down syndrome community and for parents of kids with special needs. from the bottom of my heart!!!

    Love,
    Angela from Dallas

  433. I agree that sometimes it takes getting in the proverbial shoes oneself, whether by accident or design, in order to understand what it is like to be someone else. But I’ll be darned if you are not accomplishing something far more remarkable here, which is to make all of us know “what it’s like” simply by telling your story in the beautiful ways that you do. I don’t comment often, but read diligently, and I want to thank you for being such an inspiration. You rock, mama.

  434. You & Yours make this world a better place.

  435. “A bit different but mostly just the same.” BEAUTIFUL.

    YAY for people-first language and getting rid of that awful r-word. I posted about it a while back: http://www.namastebyday.com/2010/03/last-night-i-read-this-post-by-jen-over.html

  436. Kelle- While the whole post was beautiful, I have to say, the pictures of Nella about to cry after having her paper towel taken away are just about the most precious thing I have seen -that expression on her face is heartbreaking and amusing all at once…

  437. This is my favorite post yet. I love how you talk about Down Syndrome.

  438. i know this is not about down syndrome specifically, but i know sooooo many of you would be touched by this video … it’s about a baby born with trisomy 18 that lived for 99 precious, beautiful days, and how he was loved ferociously by his parents. it completely aligns with what kelle is saying here.

    get the tissues, everyone. i know i did.
    http://www.youtube.com/watch?v=th6Njr-qkq0

  439. I have been reading your blog for a while now and really enjoy it. I am blessed to have a brother-in-law, Nathan, with Down Syndrome. I have only known him as an adult, but have heard lots and lots of stories about him and his brothers (one being my husband :) as they grew up! I love seeing pictures of your little Nella. Your story helps me understand even more the path my in-laws walked as they raised Nathan. He is an amazing person and has made me a better person by knowing him. All that to say, thanks for sharing your story!

  440. Nella’s sad face pictures (after losing the paper towel) might be some of my favorite of her! They made my face squish up and tilt to the side with empathy/love for her. Although her “Oh” face always brings a smile to my face also!

  441. You, your family and your photos are amazing.

    Thank you for letting us into your life, it is beautiful.

    elena

  442. Thank you.

  443. Kelle – you touch my heart with your pictures, and words especially in this post. I really don’t know what to say other than THANK YOU! On behalf of all your blog readers, thank you for so willingly sharing your innermost thoughts, especially when it comes to the mystery and joy of DS.

    Hugs from Jenny in Iowa

  444. Beautiful beautiful beautiful. Loved, “Mostly, the parent of a child with Down syndrome—or autism or Turner’s syndrome or Prader Willi syndrome or, for that matter, no syndrome at all—wants the world to accept their child. To love them, praise them, high five them on the soccer field, compliment their awesome sneakers, invite them to birthday parties, ask them questions and really listen when they reply, pick them for playdates, help them when they’re struggling, teach them when they need it and recognize all the good they have to give the world.”

    The pigtails–just awesome!

  445. great post, girl.

    i am starting to refer your blog to patients and families–you are an amazing resource for many! thank you!

    also, thanks for talking about the “r” word. there are so many words out there like this, such as “gay,” which i thoughtlessly used the other day in a similar context as one would use the r word and then apologized with flushed cheeks to my two friends who prefer same-sex partners. we could all take a page out of ms. oliver’s book, no?

    as always, insanely gorgeous photos of your girls!

  446. Kelle- I love your blog and you know how to say it like it is. Life with an extra chromosome is sweet, Jenna gives us so many reasons to laugh and love her. So many of Nella’s expressions are like Jenna’s, makes me smile. And Nella’s development is amazing, she is doing things that Jenna doesn’t even do yet. (she was 2 in Dec) Like eating a strawberry!! I was totally blown away when I saw that! And using the chalk correctly! Wow!! Jenna spent her first 7 months in the hospital with short stays in between at home, she had her open heart surgery at 5 mo, so she is a bit delayed. But we cheer with every milestone and with every new thing that she learns. Keep up your good writing… you are truly an inspiration…

  447. Beautiful post, I have not been by your blog for a couple of months due to pregnancy problems, but I am lad I came by for this post, its like you are in my head, I am a 1st time Mom to a SN boy. I also site and here the word Retard and rethink life, I cry as I hold my son from time to time thinking how will his life go. You put into words very beautifully what I feel in my heart. Thanks

  448. A lovely story in the beginning…
    And Nella is gorgeous, like her mama! Beautiful family!

    Thank you Kelle!

  449. The pure beauty of your children is simply amazing. I LOVE LOVE LOVE the picture of Nella and her brother…just the two of them all snuggled up and loving each other. Ahhhh, sibling love is a beautiful thing!!!! I also love the picture of Nella playing w/ the chalk…her outfit is just precious and you can tell she loves drawing outside w/ her gorgeous big sister. But my favorite picture out of all of them is the one of her crying after you took away her paper towel!!!! PRICELESS!!! My 3 year old daughter makes that EXACT same face and it cracks me up. Gurl, you are inspirational and I so enjoy reading your blog. I gave up facebook for lent and YOU, my dear, have become my new addiction!!!! Have a blessed and happy day sweet Kelle!!!!

  450. What a beautiful post! Between your words and photos of your family, you really moved me today. What a gift.

  451. This was an absolutely beautiful post!

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  453. Tears of love…..
    I love reading your feelings and love towards your daughters and relating to you. Beautiful post!!!!!
    Xoxo

  454. Thank you for sharing with us the love that lingers in the deepest recesses of your heart for those amazing girls. IT is obvious in every word and nuance.God bless. *HUGS*

  455. I don’t think I’ve ever seen Nella cry before, she even looks so sweet when she crys!!
    I have to laugh. I was laying in bed with my daughter last night trying to get her to sleep and I was getting so cozy, comfy and tired. I tried channeling my inner badass to get up and go on the treadmill. I couldn’t think of a name for her but I kept trying to channel her….instead I channeled my inner fat ass. LOL I got a name for her right away-LARGE MARGE. Me and LARGE MARGE cuddled up with the girl and went right to sleep!

  456. I think it’s been said 455 times already but i love this post. you write so beautifully and i’m glad your blog isn’t all about down syndrome. it’s about nella and her family and nella is so amazing and beautiful both inside and out. i love love love the photos. this post made me laugh, cry, and nod my head. love it! thank you! jimmy says hi to nella by the way. he thinks she’s cute!

  457. loving the wet drooly “o” face! and the paper towel – seriously, you would be so cruel as to take it away?! i think not! :)

    and look at your baby and her mad sidewalk chalk drawing skills! woo hoo!

    ok and LOVE that pic of LL and Brett. too funny.

  458. All so well said. Last night my husband and I talked about how you worded your article. Beautiful. We too have two little ones. They are 5 and 3 years old boys. Justin is our youngest little boy and is living with Down Syndrome. Your stories and emotions resonate with us. Thank you for sharing with your readers. We too advocate in many ways. Come check me out when you can at http://www.specialvillage.ca. This is a new venture that I have partnered on, for our village. It takes a village to raise a child and our’s is special.

  459. I love your take on the word retarded. I think it encompasses your outlook on life, and what a special person you are. You remind me daily that you have a choose with how to view and deal with things. You inspire me greatly. Thank you.

    And Nella is an absolute doll, and I can tell you just from reading your blog about “life” you have changed or enlightened my view of special needs kids…so mission accomplished.

  460. You are an amazing mama, Kelle!!! This post is absolutely beautiful.

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  462. Although it has already been said a million times over…you keep us smiling, inspired, laughing, thinking, sharing and appreciating all the beauty in life!! You are an amazing woman Kelle Hampton!!! An incredibly talented writer, a breath taking photographer and one of the most dedicated, fun-loving, life celebrating Mamas I know (even though we have never met). Your blog is a gift, a precious gift. Thank you!!

    Loving all the photos of Ms. Nella…you capture her beauty so well. Each photo just comes to life. (I so want to pick up that oh so sad face and kiss away the blues and give her her paper towel back)

    Happy days to you and your beautiful family!!
    Monique

  463. Kelle: We have a little girl named Maddie who is now 7! My daughter did a little tribute about Down Syndrome if you get a chance:www.allymullin.blogspot.com I must read you every day for you say all the things that my heart feels Thank-You xxoo

  464. i absolutely love ur blog! :)

    p.s. my little guy has a paper towel/tissue fetish too. 😉

  465. All so well said. Last night my husband and I talked about how you worded your Down Syndrome Day blog. Beautiful. We too have two little ones. They are 5 and 3 years old boys. Justin is our youngest and is living with Down Syndrome. Your stories and emotions resonate with us. My husband wrote an article about the r-word for his company newsletter and it was published to over 6000 yesterday (March 21). The ripple has started. Thank you for sharing the beauty of each of your daughters with your readers. We too advocate in many ways. Come check me out when you can at http://www.specialvillage.ca. This is a new Canadian venture that I have partnered to create for our village. It takes a village to raise a child and our’s is special. We have linked to you on our blog space. Continue advocating for the beauty of family life with any child.

  466. Loved, loved, loved this post! Shared it with my Facebook friends and forwarded it to many of my family members. Hope that in some small way, I could help open other’s eyes as mine have been opened so many times through your blog.

    The pictures this week are absolutely precious. The one of Nella pulling up in Lainey’s bed is so cute. I love how Lainey looks like she is there to catch her just in case! And the photos of Nella losing her paper towel…too much cuteness even in tears! LOL

  467. This entry is beautiful.
    It’s so great to see pictures of your boys too! What a wonderful family.

  468. kudos…great message… I love that you posted about it..
    I can’t wait to see Laineys party pictures.

  469. Ohhhh my, I can’t believe how much Nella is beginning to look like Lainey. They’re both so beautiful and now, the resemblances are impossible to miss! And those pictures of Nella post-paper towel removal are absolutely wonderful, the look on her face adorable, what a sweet girl!

  470. B E A U T I F U L!

    Sending love, lots of it … xoxo ….

    PS- Eli asked “Are those twins?” when he saw the paper towel collage of Nella. Cracking up!

  471. I’ve been meaning to ask… would you have preferred to know Nella had Down Syndrome ahead of time? Or do you think finding out in the delivery room was a part of the healing process? Or did it make it more painful?

  472. I have never commented but I found your blog about 6 months ago and have read every word you’ve written. You impress me so much and I love your inspiration and photography. Your girls are so precious and SO lucky to have you. I have a good friend with Down Syndrome, Abe Cooper, that changed my life. Because I him I went into Special Education and now work in an inclusion Preschool. Abe’s family is all very inspiring as well. I recently posted a speech on Down Syndrome his teen sister wrote for a competition. If you have time I am sure you would love to read it. http://courtneytravis.blogspot.com/2011/03/down-syndrome.html
    Thank you for sharing with us! You are wonderful!
    Love,
    Courtney Mattoon

  473. beau.ti.ful.

    Seriously. So lovely.

  474. I’ve been reading your blog ever since you wrote: Nella Cordelia: A Birth Story. That one I will never forget (as I bet you won’t either). Anyway, I stopped commenting on your posts because you have so many comments, YAY! That I don’t want to overwhelm you with mine, haha. But when I finished reading this one, I knew I had to comment because, I was the opposite of you on that dinner with friends. I was your friend Jen. I was told my boy could have Down Syndrome because on one ultrasound he had a little bright spot in his heart called a Echogenic Focus. I will never forget that moment, the neonatologist who I also called idiotnatologist came in looked at the screen, pointed and said: “Okay you see that bright spot there in his heart?” My husband and I said yes and he said: “That’s a marker for Down Syndrome. Okay get dressed and I’ll talk to you in a little while.”

    Needless to say, I cried and cried and cried while waiting for another hour for him to see us again. He suggested an amnio to check and be sure if it was indeed Down Syndrome but I refused. When I did he said it was better to know in case we wanted to our “options”. I looked him in the eye and told him I didn’t need an amnio because there were no “options” for us except having our baby boy. I told him if he has Down Syndrome there is nothing that can be done so I didn’t need an amnio. I told him my baby was a miracle to us no matter how he came. I’d struggled for 5 years with infertility and ended up having IVF to get pregnant with our little one. So I didn’t care if he did have Down Syndrome or not, he was finally here and we were keeping him.

    I out it in the back of my mind and enjoyed the rest of my pregnancy (I managed pretty well with it).

    19 weeks later Iker Sorén was born via C-Section and he has 2 21 chromosomes. But I wouldn’t have loved him less if he had 3, because for 19 weeks I thought he did and he still held my heart in his little one with the bright spot.

  475. This post made me cry. You are all so lucky to have one another. Beautiful family xo

  476. Not that I love seeing Nella cry, but oh, I love love love the pics of her with the paper towel (don’t take her paper towel away…or else…). That cracked me up! She is so beautiful.
    A wonderful post as always…very well written and thoughtful.
    xo

  477. Beautiful! I have met and seen maybe just a handfull of people/children with Down Syndrome since discovering your blog and my heart has opened up widely to them. The little girl that hugged my then 6 motnh old baby over and over. I noticed the scar on her chest and wanted to reach out to her mom but didn’t know what to say. I didn’t want our chance park meeting to be about her daughter having DS. I just wanted to be “normal” and show her my acceptance by the silence and so while our boys played I welcomed her and her daughter who was sweet and determined to share our blanket and to love on the baby as much as she wanted. That’s just one example but I hope that all those poeple/children are loved as much as your Nella and that her example of what life is about will shine brightly and be spread far and wide.

    Lisa in CA

  478. Thank you for inviting us into your heart and your life… they are truly beautiful places

  479. Thank you for this!! Just what I needed today! God Bless you!!
    -Autumn

  480. As I read your post yesterday, I was recovering from losing twin babies at 12 weeks. This piece reminded me that despite struggles, grief, and the unknown, there is beauty, life, and love. Thank you for sharing your life with all of us.

  481. Oh girlishly thrilled am I that I was a reader who called my inner badass “Natasha”? It’s like being noticed by the handsome boy at school. 😉

    Jennifer

    <a href=”http://boogaboojones.typepad.com/boogaboojones/2011/03/normal-day.html<br>

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  483. I just found your blog today… I’m in love. :)

    You are such an inspiration. Reading your post about your baby girl (and DS Awareness Day) made me stop and count my blessings.

    I realize that what may seem like a hardship to one person may be a blessing to another.

    Blessings in disguise.

    So glad I found you!! I can’t wait to share your story with others.

    http://www.p3rkns.blogspot.com

  484. Since my youngest daughter happened to see Nella, she’s sometimes asking me if we can check your blog. She loves the pictures of her, and of all your girls beautiful clothes (her special interest is clothes and fashion right now).

    Just wanted to tell you you have admirers in Stockholm, Sweden. :)

  485. Hello

    I adore your blog…I love your freshness..your honesty…your photographs….your outlook…
    thank you for making me smile
    Diana

  486. What an amazing post! It broght me to tears yet again. I just love Nella! She makes me smile every time I read a post and see her pictures. And Lainey is such a lucky girl to have Nella as a sister. She is a very awesome big sister. Hugs to you all!!

  487. Thank you so much for sharing. I love this post, it has sooo many facets of beauty and love and thankfulness. I have tears in my eyes just thinking of what a blessing Nella is to you as a family. I am already in love with her and haven’t even met her yet. I hope some day I will. How special she is, this beautiful baby of yours!

  488. i have been teaching 5th grade for 13 years now and at the end of each year i hope that my students have learned from me to not use the “r” word. they have used it out of ignornace and i find it my place to teach them better. i have even taught my own friends how hurtful the word can be. if they would just really look into the eyes of a person with a disability they would never use that word again!

  489. I love this and appreciate your words so much! Your family is an inspiration and pushes us to be better people. Thank you for that.

  490. I just have to tell you how much I enjoy reading about your girls and looking at your pictures, but this post moved me especially. My little sister had cancer growing up, and many of my happiest memories are of us playing in various corners of the hospital, wreaking havoc and having the time of our lives. She passed away a few years ago, when I was twenty and just entering adulthood. When I think of her now it’s usually because I miss her, but when I read posts like this it reminds me of how happy we were despite the obstacles. And that sometimes because of the obstacles. And how often we completely forgot about the whole cancer thing, and just enjoyed our time together.

    I’m beyond grateful I found your blog. Everything you post is great, but posts like this are a gift. Your girls are so lucky to have each other.

  491. aww give that sweet paper her kleenex back!!! lol!!

    and we now have pigtails too :)

    happy 3.21!!

  492. xoxo.
    i read this almost immediately and couldn’t comment because i was so driven to send it to one of the families that i work with.
    you made her cry.
    i told her that you make me cry. all the time.
    i asked if she had read nella’s birth story.
    and she said no. that she wasn’t sure she could.
    i told her that it is beautiful too … and that she might just need a quiet night and a glass of wine. but that it’s worth it.
    thank you. thank you for sharing who you are so that people out here like me can see the vividness of your world. it helps me. more than you will ever know.
    xoxo, friend.

  493. This post was as though you have read my mind. I started following your blog right after Nella was born and so many things you have written – beginning with her birth story and so many thing in between have seemed to be my own thoughts and words. Thank you for being so candid and sharing your family with us. You truly are an inspiration.

    http://www.chargesyndrome.org

  494. I forgot to mention how funny it was to see the photos of Nella with the paper. My little girl also eats paper. Too funny! My girl also has blue eyes and one of them has those golden flecks. So cute.

    Lisa in CA

    I didn’t write my previous post very clearly. Baby was done eating and losing patience. She loves to see pics of your girls. She hears the music form your site and knows. “baby, baby,” she says and wants up to see.

  495. These words are so, so important. Thank you.

  496. Beautiful and very thoughtful post!
    Nella is such a perfect little girl and so very lucky
    to have you as her mother!!!
    Love the brother-sister picture, so much love!! <3

  497. You are an inspiration. And your children are beautiful just the way they are. I am stunned at the beauty of your photography as well.

  498. Once again what an amazing post.

    You have two of the most gorgeous girls ever!

  499. Hi Kellie, I just found your blog through a Facebook post with a link leading me here. I am a mom to two girls. Caitlyn just turned 6 and Hanna is 21 months. Caitlyn was diagnosed about an hour after she was born with Achondroplasia, which is the most common type of dwarfism. She has her own “special needs”. I look forward to following along with your story – I hope that you’ll check out my blog – http://www.jkmurphy.blogspot.com

    Your children are beautiful and I know that Nella holds a special place in the hearts of those that she meets.

  500. Thank you for sharing your heart. As always, I find myself crying, laughing and wanting to love even more when I read your beautiful posts.

  501. Thank you SO much Kelle for all you do!! Not just for the DS community – but for everyone – you are changing so many lives!!!

  502. i am the wife of a soldier currently serving in Iraq and to hear you mention my circumstances among raising a beautiful little girl with down syndrome is just amazing. your story has inspired me so much and made me realize how important it is to grasp each situation given to you. you have two beautiful girls and i hope to be a loving mother like you some day :)

    thank you for sharing your stories here!

  503. I went through one of the ultrasound situations as you spoke about your friend. It was scary because of the unknown. I cried for almost a week straight. I am such a planner and needed to know how the outcome would be. You have proven to me over and over again that I should have never been scared. Nella is absolutely goregeous. I truly mean that. She looks like the light of everyone’s life. Our end turned out differently, but your blog has comforted me over and over again and taught me to open my eyes and almost slap myself in the face that I was once scared of a different outcome for our daugther. Thank you for that.

  504. beautiful.

  505. I started reading your blog a few months ago when amnio revealed my new grandson Eli would have the extra chromosome. It made me feel so good to read about your sweet little Nella and enjoy her growing every day. I cry as often as laugh at your posts but they are mostly happy tears. Thank you for sharing your lives !

  506. I feel so blessed to be able to read your posts, this really moved me today. Your girls are so sweet, 46 or 47, who gives a beep, they are both amazing!

  507. hi, Kelle,i’m brazilian and, my english is terrible,but i’ll try, your blog, is perfect and, no have words for you, your daughters are beautiful, and especially they are THE IMAGE AND LIKENESS OF GOD!!!THANKS, for sharing your life…may God bless you always…kisses and hugs CArol

  508. I was visiting with one of my patients today who has Down Syndrome. She’s in her 20’s and just so lovely. When she comes in with her mom, it’s so wonderful to see their close relationship. I like to think that I always saw her beauty–inside and out. But I definitely think Nella and your blog has helped me to see her–her, in all her radiant personality and goodness– even more clearly. Thanks for changing the way we all look at the world. :)

  509. I love reading your blog because you inspire me. I love all that you present being a mother/previous teacher/photographer/advocate. I am a 21 yr old college student looking to graduate next may and am going to be a special education teacher. I give you two thumbs up. Doing an awesome job and inspiring others by educating them as well.

  510. The Picture of Nella and her brother hugging her is just so precious. There is so much raw emotion in it. It’s beautiful!

  511. this post is awesome. love the oh shot and the overhead chalk one. thank you for this.

  512. do you want to know what a difference you’ve made in mindsets? i found out yesterday that a friend who had her third baby this past week is waiting to hear the results of whether or not he has down syndrome.

    before becoming a reader of your blog, my reaction would have been “that’s devastating” and “oh no, how awful”and lots and lots of pitying and “i can’t imagine”s. now? my honest reaction is “well, if he does, he does. they will get through. their life will take a different direction now, but he’s gonna be just fine.”

    you have CHANGED people, kelle. keep doing what you do!

  513. Kelle, you took my breath away. as we thought since the fourth month of my pregnancy last year that the baby would probably have DS. there was the absent nasal bone, the heart spot, the intestinal spot…then came the summer and there were short femurs…my small belly. we didn’t have the amnio. i waited and waited. ready but in slow motion. and then came the day when the csection was planned and the hospital staff just couldn’t believe we didn’t know boy or girl- so open and kind to whoever was in my belly.
    and out came a little baby girl. and she did not have DS. and we were more shocked we just had a girl than the fact that the baby did not have DS!
    your post brought me back to that pregnancy. lovely lovely blog Kelle.

  514. Everything about your site is beautiful. Your words, your photographs, your children…I couldn’t stop reading. So thank you. Thank you for sharing the shape of your heart.

  515. Absolutely beautiful….

  516. THANK YOU!!! I just discovered this blog and can’t even begin to tell you how this has blessed me and makes my heart sing! My beautiful baby boy “AJ” was born on 1-13-10 and too has an extra chromosome. I feel like I found a home here….a kindred spirit in my journey. I smile inside so many times at the “secret” I feel I carry around now…the secret that has brought me SO MUCH peace and joy and I feel now that I have found someone who shares my “secret”. You have a beautiful amazing family and thank you for sharing it with us all!

  517. Just came across your blog tonight and I just love it. Thanks for sharing your heart. Your family is beautiful and truly a gift from God!

  518. In high school I referred to something as being “gay” when irritated with the task my boss had set before me. He quickly said, “I don’t say this is so straight or girly when I refer to a task that annoys me so please refrain from referring to things as gay.” I then was reminded how our little words of frustration can sting the heart of someone else. It has always been my goal to stop using that phrase and the “R-word”. I’ve been reminded of this again recently as my best friends little girl just got diagnosed with Epilepsy with Mental Retardation in females. She’s struggling to get rid of that awful word that meant little to nothing before…

  519. Your are an inspiration! Thank you so much for sharing!

  520. Thank you so much for sharing your story. I stumbled upon your blog a while back and Bookmarked it — and was doing some computer clean-up and found it again. if I didn’t know why I had Bookmarked it in the first place, I do now. You have a gift with words and pictures, and I am deeply moved by your story. I don’t have children of my own (except the four-legged type) but I am a teacher. In the 16 years that I’ve taught 4th & 5th grades, I’ve had the joy of knowing all different types of kids. One in particular will always stand out to me. Grace was in my class two years ago and she has Down syndrome. She is a feisty, loving, stubborn, and passionate child. Having the opportunity to work with her and get to know her parents was a gift. The way Grace touched other children’s lives, and what we all learned from her presence in our lives is invaluable.

    Again, thanks for being willing to share your family’s journey. I will keep reading!

  521. My daughter– makes me proud. She is a wife of a soldier. He has been gone most of our grandsons life. Fighting three different tours in Iraq. They found out our, precious, and I so mean precious, LIL’ Guy was special needs when he was 2 and our youngest grandson was only 9 months. My daughter, born and raised in, the South…found herself, alone in Seattle, WS. and having no family, friends, or support system to call on…I am proud of her because…She held it all together while having a joyful heart while doing so…HOW? I guess when she worked, in college, her summer year, at Camp ASPA…a Easter Seal Camp…she learned how to open her heart to all. Thank you, Kelle, for your wise words and vision. You are, too, speading good, good, information to others. Keep it up and know you are indeed, like my daugher, a special, special advocate….Life isn’t easy….but love abounds!!!!

  522. I will never ever ever say the “r” word again. Thank you Kelle for raising awareness.

  523. This post was BEAUTIFUL and so are all four of your children. I came across your blog while reading a blog post from adrielbooker.com — so glad I found you! I like that you mentioned eliminating the “r” word. I’ve always had a disliking for the word. I cringe when I hear others say it.

    You are obviously doing a great job at being a mother! You are an inspiration. I’m so glad you wrote this post (even though I’m a bit late at seeing it) 😉

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