3.21: World Down Syndrome Day

Today is 3-21, a day recognized for celebrating individuals with three copies of the 21st chromosome. On World Down Syndrome Awareness Day, we launch our virtual balloons (they’re yellow), have a cyber pow-wow with friends across the world who celebrate with us, and whisper our bit of gratitude for our daughter, the friends we’ve made in this community and the humble recognition that the introduction of Down syndrome into our lives has become an invitation. The world is rich with so many different kinds of people and millions of stories. The more of these people we meet, the more differences we encounter, the more stories we hear and truly listen to…the more we discover the meaning of life and find our own place amid this very big world that needs our voice, our heart and our hands. Happy World Down Syndrome Awareness Day.

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I became friends with a woman a few months after Nella was born when her husband reached out to me after their own son was born with Down syndrome.  “My wife is struggling,” he wrote to me, “can she talk to you?” Only a few months in myself, I didn’t feel I had much to offer but a listening ear and some pretty good “we’re going to do this” enthusiasm; but I agreed to talk to her, and after an initial tearful phone conversation, we found ourselves writing back and forth, sending pictures and joking that our kids were going to marry each other someday. Just a few months behind me, watching Lisa was like watching my own self evolve. As I knew she would, within a matter of months, Lisa let go of crippling fears and worries, fell more madly in love with her little boy and settled in to the idea that there’s so much of life we can’t control. But we can love. And take one day at a time.

I still e-mail and text regularly with Lisa and her husband, not so much about Down syndrome but about important life stuff—like funny e-cards or pictures of our kids dancing in the kitchen. Sometimes we talk about how we’ve evolved, how life seems so normal now when a while ago, we wondered if it ever would be.

I got a text this week from Lisa: “Lately, thinking of the future scares me to death. Not knowing what category we’ll be in. Our quality of life. It’s terrifying to think about. I think about this so much lately.”

I love this vulnerability.  It’s real, it’s normal, and it’s healthy. It helps keep me in tune with my own vulnerabilities and address them in the company of friends.

I thought about it for a minute and realized, yes, it can be pretty terrifying, can’t it? The Future can keep any one of us awake at night, regardless of whether or not we know what we’ll be dealing with. I always come back to this thought though:

We’ll only ever be required to handle one day at a time. Thinking about all of the future right now—packing years of challenges into this one present moment when we try and force ourselves to deal with every heartache we’ll ever possibly experience in life—is not only overwhelming, but it’s unrealistic. Whatever the case, when we get there, we’ll wake up any given morning and deal with that one day. And amid the challenges of that day, there will also be lots of good things to cushion the hard moments—both for us and our children. People who make us happy, lovely things to make us smile. Coffee and music and walks outside and delicious food and good books and holding hands and kissing cheeks. And then we get to go to bed every night and wake up again and deal with the next day with maybe the same challenges but new good things too. We’ll never have to deal with thirty years of hardship on one given day, so why do we force ourselves to think about all of it right this second?

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I’ve also realized both within this little spectrum of Down syndrome and in the greater world of experiences outside of it, that our worries about intimidating situations are often so much more overwhelming than the situations themselves. Because at least when we’re in the situation, there is the productive energy of doing it, no matter how hard it is, that fulfils us rather than the latent anxiety of not doing it and worrying about how hard it’s going to be, that keeps us up at night.

Take school, for example. These past four years of having Nella at home have incorporated our initial acceptance and understanding of Down syndrome and yet, there’s always been the security of having her here, with us, protected, secure, in our presence so that we feel very much in control. This probably doesn’t have anything to do with Down syndrome and more to do with parenting.  Sometimes, it’s hard to let go. We worry about how our child will adapt to our absence as well as how schools and teachers and kids outside our control will treat our child. Thinking about all of this for Nella has, I admit, given me some good mother anxiety.  I enrolled her a few weeks ago in a fall preschool program—a typical preschool (as opposed to one only serving children with special needs), one I fell in love with a while ago; one that felt like a good, welcoming, happy place for any child to learn.  I knew I wanted a good bridge between home and kindergarten to get Nella acclimated to routines, being away from home and socializing more with other kids her age; and a once-a-week ballet class wasn’t going to cut it.  Brett and I talked about the best case scenario for Nella, her needs and our family, and we decided we wanted an alternating morning schedule at the preschool we had already researched. So I met with the director of the preschool and Nella’s teacher a few weeks ago. When her teacher asked me how I thought this transition would go, I felt the strong, put-together, this-is-business mom who walked into that preschool quickly disappear, replaced without warning by vulnerable, weepy, this-isn’t-what-I-wanted-people-to-see mom.  “I’m anxious,” I told her.  “I don’t know how it’s going to go. I want her to be happy, comfortable, and I want her to be challenged.” My worries were so tenderly acknowledged, and it was suggested that we start coming to some classes just to visit and introduce Nella to routines before the fall. We were overwhelmed by the kindness and sensitivity of our preschool’s staff. “You can stay with her as long as you feel comfortable,” they told me.

So we started three weeks ago—Nella and I popping in together to get to know the teacher and feel comfortable with the classroom. I thought it would take a while and that by the end of the year, we’d feel really good about starting this fall. I had no idea that within a few days, my child would be thriving—running down the hallway to her classroom, dragging her lunchbox, talking to her classmates and sitting quietly on the rug for circle time, listening to Pete the Cat. On Day 3, I left the classroom without Nella even noticing. I walked down to the director’s office. “She’s painting at the table with her friends,” I cried. “She’s fine. I worried for so long how she’d do, and she’s absolutely fine.” The director smiled and stepped away from her desk to hug me. “Kelle, this is just the beginning of a lifetime of her surprising you,” she said.  So she’s in partial-week preschool now, officially enrolled and putting her lunchbox inside the cubby that says “Nella”…like a boss.

I expect that there will be days where Nella doesn’t run down the hallway so happily to her classroom, and that transitions to new experiences won’t always go as well as this one did. But what a waste of perfectly good anxiety—all those times I worried about the challenge of preschool when we both did far better than I imagined.

There are challenges ahead for all of us—both in our own lives and the lives of those we love.  The most productive thing we can do is to face those challenges head on and to accept that life will sometimes be hard. I find more comfort and strength in accepting that fact than in resisting it.  I hate resisting and dreading and pushing against all the ambiguous what-ifs of the future. It’s exhausting mind-consuming work.

As for those random text exchanges like the one Lisa and I shared this week?  There are things we worry about that loom in the future—things about Down syndrome we might not be able to control like health or dependency issues. We’re working as a community to find ways to make life better for individuals with Down syndrome every day, and we are moving forward.  The therapies, scientific research, educational strategies, classroom accommodations and new expectations are changing the future for all of us.  But there’s more.

Some of those imaginary future scenarios we create?  You are that hypothetical situation. You are the parent of the student in our child’s class—the one we hope teaches your child to reach out to ours, invite her over to play, sit next to her at lunch. You are the employer who we pray sees potential in our child and hires her to perform a job she’ll love. You are the teacher in our child’s classroom, the one we want to work hard to meet our child’s needs and accept the challenge of creating a classroom environment that includes him and allows him to thrive. You are the high school student who we fear might not take the time to get to know our child, the coach we hope finds a way to let our kid play, the school board member whose vote matters in terms of decisions regarding our children, the co-worker who might need to practice a little extra patience and compassion in making sure our children settle in to their new jobs and feel welcome. You are the thinkers and doers and world-changers who can help alleviate fears for millions of parents world-wide and make life better for people with disabilities. That’s you.

Special needs is very much a part of every one of our lives because we live in communities that teach, employ, support and benefit from the contributions of individuals with special needs.  Special needs is very much a part of every one of our lives because we all have them—needs.

The world is rich with so many different kinds of people and millions of stories.  The more of these people you meet, the more differences you encounter, the more stories you hear and truly listen to…the more you discover the meaning of life and find your own place amid this very big world that needs your voice,  your heart and your hands. Happy World Down Syndrome Awareness Day.

And remember: we are all on the same team.  

Love someone with Down syndrome?  A child, a sister, a brother, a niece, a friend, a neighbor, a co-worker? Leave a comment writing your pledge and the name of your loved one today.

I’ll start.

I am a thinker, a doer and a world-changer, and I will use the stories I hear and the things I learn to help make the world a more accepting place for all of my children, but today, I celebrate Nella. Nella, I love you, and I will never stop exhausting my energy and using my love to help support you and make the world recognize your incredible gifts.

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And parents sharing “10 Things We’ve Learned” raising a child with Down syndrome…I’m over at BabyZone as well today for World Down Syndrome Awareness Day.


Leave a Comment
  1. Brandon I love you and I have spent the last almost 24 years being your champion and plan to continue until my last breath.

  2. Before having Emma I had never met a person with Down syndrome, a world which passed me by many times without ever noticing it. Now that I am the mother of a little girl with Down syndrome I would like other people’s glances to be different, in the same way that I wish mine had been different when I was younger. Other people turn their eyes away to look somewhere else because diversity is frightening, or because they are embarrassed or because they don’t want to cause embarrassment by staring for too long. Sometimes other people can’t stop staring, sometimes their stare is fixed, full of questions or they pretend not to look and take a peek out of the corner of their eye. Sometimes it is a look full of admiration mixed with false modesty, as if to say “oh, you are so good, I don’t think I could do it”!

    Other people’s glances don’t use words and I miss them, silence builds walls of loneliness and exclusion, silence rots the questions and hardens the heart. Let’s knock those walls down brick by brick, question by question, word by word!

    Together with other Moms, we have decided to pay tribute to World Down Syndrome Day inviting people to move over to this side, even if only to tell us a story. We collect all the stories to create a bridge between US and YOU, hoping that together we can tear down that wall and one day be able to speak only about US.


  3. I am a mother, a wife and a friend. But I pledge to do all that I can to make YOU the best YOU can be, Leah. I love you to the moon and back and I am so PROUD to be your mommy. Leah, Let your light shine!

  4. Patrick, I will hold your hand for as long as I can and our family will take this journey together…hills and valleys.

  5. Dear Tommy,
    When we were younger, I was afraid of you. You were so excited about life, so honest, so open, and that intimidated me. I often felt uncomfortable in your presence. Now that we are both in our twenties and I’ve spent much more time with you, I can say that I envy your attitude. The things I know now are the things I wish I knew when I was younger… And those are the things you ALWAYS knew. You are such a special person, and you are so loved. Also, you’re becoming an amazing slow pitch softball player!

  6. Happy World Down Syndrome Day to you.
    I wish I could be as eloquent as you Kelle. My hopes and dreams for Kayla is that she has a happy and fulfilling life. When she was younger I had expectations of what she would do and what she would become, as any parent has for their child. She has shattered them all. I have stopped that silly practice and have just watched her grow into a beautiful young woman as she takes this world on. I am just along for the ride, happy that her mother and I have given her some of the tools she needs to succeed. She will be fine. Kayla’s Dad

  7. I am a mother of three. Three children that do not have down syndrome. But I am so grateful that through Nella’s stories and your blog, my eyes have been opened to this world. My kids are very young, but they will be taught how to accept everyone-how to invite the child with Down syndrome to come over and play-how to love everyone BECAUSE of their differences.

  8. I am a mother, a gentle soul, a person always trying to seek out the best in everyone around her. I will teach my girls the importance of accepting everyone around them for who they are, to play with all kids, to invite everyone, and to never make fun for qualities they might find different in another… mostly because that’s what my mom taught me too. I celebrate Nella today, also. Thank you Hampton family for letting me learn along the way with you. Your work is truly amazing, and the words you spread are life changing. Thank you.

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  10. Grace, I wish you were here with us now, but your short time in our lives opened up our eyes and our hearts to unexpected beauty, strength and love.

  11. I am a sister to a caring, loving, hard working, strong, funny, gentle, supportive brother with Down Syndrome. Toddy and I grew up together, only 2 years apart, and continue to understand each other perfectly. He is 48 years old and I am so grateful to have him in my life. He continues to teach me patience and understanding and to appreciate life through his eyes. I celebrate Toddy today and all that he has given and taught others. I love you brother!!

  12. Hello, I created an iPhone/iPad app that seems to have attracted the use of a close friend with a son with DS. The app is free. I would like to know if other DS parents see any value in this app? https://itunes.apple.com/us/app/picture-board/id453369022?mt=8 Please let me know what you think. Thank you:-)

  13. Many of the things you worry and obsess over are also things that all parents worry and obsess over, whether their children are special needs or not. Just remember that we all have trouble letting go and worry, yours is just a little more amplified. I have a great-nephew who is so shy he is crippled by it and his parents worry about him fitting in and being accepted. There are all kinds of disabilities. I hope she continues to love new things and that the kids will accept her too. Yes, she’s different but aren’t we all?

  14. I don’t know anyone with Down syndrome but I pledge from this day on that I will explain to my children about other children that God has made a little different from them but still very special in His eyes. I will teach my children to be kind to others. Blessings to you Kelle!

  15. Eme, you have opened our eyes to a love so large we often feel our hearts are going to burst just trying to contain it all! We will never be the same because of you and we will always support and encourage the endless possibilities that lie ahead for you! Love Uncle Monty and Aunt Julie

  16. And now I’m crying. I know what I’m facing is small in comparison, but we are starting to walk down a path with our son to have him diagnosed with a learning disability that will effect him for a very very long time. A label that will define him for years to come. A diagnosis that will forever influence what those around him think of him. It is hard. The worry is deep. The fears are real. In the end it will all be okay. He will continue being the blessing that he is and we just pray that those around him remember that a label doesn’t define him. Thank you for putting many of my worries/fears into words.

  17. Long time reader of your blog. This will be my one and done comment from a Mama of two to a Mama of three. Your family is beautiful and this video is so inspiring that I wanted to share it. Fondly, Susan


  18. To Jimmy. Who’s heart touched us like no other. Who brought so much love and kindness to this world. Thank you for setting the example for my kids. You will always carry a special place in my heart. I love you.

  19. Mitch. I love you more today than I did yesterday. And not as much as I will tomorrow. I’ll hold you hand forever and am proud to be your sister.

  20. What a wonderful post. It brought tears to my eyes. That is all, hugs.

  21. Landon, I love you! I am so thankful that God knew what we didn’t- that you would bring complete love and joy and bless your family in ways innumerable. You have all of our hearts!!! <3

  22. Kelle, this is one of my favorite posts of yours EVER. I am so happy for Nella and so proud of her for rocking those first days at preschool. I can’t wait to read about all of the new and amazing things that she is going to learn, and all the great experiences she will have!

  23. I am a mother, teacher, friend, lover and happiness seeker. I have many friends whom I am celebrating today but I am going to focus on the high school students I teach with Down Syndrome. Until I had children…I was a different type of teacher than I am now. Until I met all of my beautiful friends who rock and extra chromosome I was yet again a different kind of teacher. I went from teacher to student in order to become a better teacher once again. Those in my life who have taught me about happiness are to thank for this education. Those beautiful souls are between the ages of 14-21 and they have taught me more about myself, others, and how to deal with my own son’s diagnosis more than anyone else. For them I am so very thankful. Life is a beautiful place…just allow it to happen. Xox

  24. https://www.youtube.com/watch?feature=player_embedded&v=Ju-q4OnBtNU

    thus video came up in my newsfeed. my first thought was you and Nella.

  25. This is such a beautiful post. Thank you for sharing your heart.
    PS – I have the same red hunter boots on as Nella in the first picture. That girl has some stylish kicks :)

  26. I am a mom with a huge heart that CHOSE to work in Severe/Profound classrooms. My pledge is to Jonathan and Ramon and Clint and Juansie… I promise to help you and lend you a hand and smile back at you and bear hug you tighter!! You boys have changed my world and I work with you to help educate all those who cannot see the beauty in your eyes. XoXo -gael

  27. I pledge to make the world a more accepting place.

  28. This post made me cry, and I don’t even know anyone with Down Syndrome. I so related to your anxiety about Nella’s preschool and subsequent surprised relief over her thriving. I understand the tension between wanting to tuck them close and, at the same time, see them soar.

  29. Beautiful. And how amazing that were abs still are able to help and be there for them. When I found out I was diagnosed with a rare disease I didn’t know what to think, it took a very long time to process. You couldn’t of said it better…we can only take one day at a time.


  30. Working at Special Olympics puts me in a very unique position where my actual job is to make the world a better place for individuals with Down syndrome. But that’s not enough — I need to do it with every fiber of my being and I do it with Nella in mind. She is the one who truly introduced me to this world.

  31. Kate, you are the apple of my eye, the reason I wake up every day. I promise to fight for you in whatever way you need for the rest of your life just like I have for the past 6 years.

  32. Great post! Last night my 8 and 10 year olds were part of a show. This little boy who had Down Syndrome was taking the show dancing away on the bleachers during the songs. I just thought “I wonder how many other kids really just want to boogie down too? ‘

  33. Katie girl, I love you and your smile that can light up any room. Enjoy your Sweet 16 this year. With love, Aunt Stephanie

  34. Caleb, you are my boy! Laughter and tears, good days and bad, we are there for you! We want you to be the strong, independent and caring teen that you are. You lead the way and we have your back all the way. You are teaching all of us each and every day. I love you so much! “Best Mother Ever”, Mom :)

  35. I love a four year old Down syndrome child named Maddie. She’ll be five in June. She isn’t mine, but everyone who belongs to her church feels like she is theirs. She is so full of love and kisses and hugs for everyone. I love what you wrote today…so powerful. YOu are so inpsiring. Thank you for your positive thoughts!!

  36. I love a four year old Down syndrome child named Maddie. She’ll be five in June. She isn’t mine, but everyone who belongs to her church feels like she is theirs. She is so full of love and kisses and hugs for everyone. I love what you wrote today…so powerful. YOu are so inpsiring. Thank you for your positive thoughts!!

  37. Abby, you are the light of my life and I am honored to be your mother. I can’t wait to see what your future holds. xoxo

  38. Kelle, that was beautiful!! I’ve had so many of the same fears that you have and my daughter doesn’t have special needs. I love that Nella got comfortable so quickly! That really touched my heart to hear what an easy transition it was for her. It also helps me not worry so much about our own transition coming up this fall.

    I pledge to teach my daughter and future son how to be compassionate of all people, disabilities or not, and that we are all created equal. I pledge to help make our society, at least the people in my space, more accepting of people with disabilities. And maybe not just more accepting, but treating them as if they are no different than anyone else, because in face that are not. We are the same deep down in our hearts. The outside is just the outside, it’s the inside that matters. I take this pledge for Nella. For all of the stories you have shared and all of the beautiful pictures. May your path and hers be filled with joy more than pain. I hope that as we grow older society as a whole becomes more accepting of everyone and makes the world a better place for our of our children.

    Much love to you on this special day! :)

  39. Dear William, You are 5 and there is so much more to you than that extra chromosome. I promise to always love you unconditionally and to leave plenty of space for you to be a little boy. I may want to push you into behving ‘properly’ but I need to accept that you do have some limits and that is OK.

  40. I love my Aunt Lily… She taught me so much about who I am and how I treat others. I love and miss her every day. I only wish we could all be touched by someone so amazing!

  41. For Faith and for Vivianna, I will always see the potential every person has. I will see the love that every person adds to the world, and I will see the joy in small things (like Shrek & PE) and I will revel in them.
    I also promise to teach my children tolerance, and more than that, acceptance. I will educate them about people with differences, and I will raise them up to be boys (and eventually men) who see everyone for who they are, and what they have to offer.

  42. Henny. Every team needs a hero and every hero needs a team. You are my hero. You continue to show me the meaning of life. You have taught me to laugh a little louder, even when nobody else does. You have shown me how to be compassionate and pay even more attention to the feelings of others. You, buddy, change the lives of all who know you! I am so very happy and lucky to have you as a friend.

  43. Such a beautiful post Kelle!

    The only person I “know” with DS is Nella, but she’s enough to have changed my outlook completely! It’s not just your beautiful words either, Kelle — it’s HER. That smile, that personality… she slays me.

    My daughter is almost exactly the same age as Nella and I’ve been following you since a couple months after they were born. Is it strange that I had a little anxiety over Nella going to school, too? I mean, I wondered about the transition from safe cocoon to big wide world, you know? I’m sitting here crying because your honest words just laid it all bare. You’re a brave mama, Kelle, and I’m grateful that you are letting us in on this journey.

    PS: I think I need to see a picture of Nella holding the aforementioned lunchbox. It would seriously make my week.

  44. I’d like Nella to be my person too. Her story has made me laugh and cry. Reading about Nella has enriched my life.

  45. Emerson, my first grandchild, my heart: I loved you from the moment I saw you. I love you more now. I cannot wait to experience all of life with you. Your five years have changed me and everyone around you for the better.

  46. Happy 3-21!
    We are rooting for you Nella and anyone else who comes into our path. Having a rotten day & this just brightens my perspective :)
    Tejas love,

  47. I am a mother of three who will teach my children that although everyone in the world is different, really, we are all same. In honor of Nella, who has opened my eyes:-)

  48. I am a high school French teacher. I say hello every morning and stop to chat with a junior at our school with down syndrome. Her name is Kaysha. I’ve taught her a few words in French and now she has asked her life skills teacher if she can be in French class next year. My response to her teacher’s e-mail was a resounding, “Yes! I’d love to have her join my class.” While I wonder how I will adapt the intense grammatical structures, she can clearly learn a language, as she is fluent in Spanish and English. I will welcome her into my classroom and look forward to how she will challenge me to grow as a teacher and how my students will be challenged to adapt to having someone who is not the typical student that they find in their college prep and honors classes.

    Today, I honor Kaysha and our adventures on the horizon.

  49. Angela Joy, being your big sister has been one of the greatest privileges of my life. You are truly our “Angel of Joy.” I am your sister, your friend, your advocate, your humble servant, your biggest fan. “Because I knew you, I have been changed for good.”

    Love to you, too, Lincoln. I love your mother like a sister. You could not have been graced and blessed with a more beautiful champion in this life.

  50. Today I pledge to Mitchell that my kids and I will continue to be a friend to you and your mom, forever. I pledge that my kids and I will always greet you with a hug, no matter how old we all get. I pledge that I will continue to talk with my kids to point out what a blessing you are in our lives, just by being our friend.

  51. I am a music therapist, a researcher, a mom to two typical girls and an aunt to several. Jackson, you are an awesome kiddo and I pledge to make sure I do everything in my power to make sure you feel like the super kid we know you are.

  52. I am a Vocational Rehab Counselor who Loves her DS Clients with all her heart.
    Great job, Hampton Family, for giving Nella a powerful springboard for Life! I look forward to seeing what she does for the World. She is smart, confident, and beautiful. And she’s had a great start to what surely will be a blockbuster of a Life. <3 :)

  53. Loved everything about this post Kelle. I love the photo of Nella next to the flowers and I’m so happy for you all that she is settling into pre-school. Exciting times for her and peace of mind for you as you see her settle into a new routine xxxx

  54. I am a friend. A friend blessed beyond anything I could possibly ever deserve. I watch my friends Kayla, Carrie, Amy, Jared, Chris and Julie lead the way. They are forming their own paths and they are doing an amazing job of it. Then I look at all my tiny friends and I get so excited for them. They live in a time when people are opening their eyes to the potential EVERY child has. I get to stand on the sidelines and cheer. I get to love and be loved. I get to be a part of magic.xoxo love you friend,

  55. I learned today that my son has an extra chromosome. Not the same as Nella (something called 17 q duplication i think)…i am strong, I spent 12 weeks waiting for him to come home from the NICU, 8 weeks sleeping on a cot in his room at the hospital last spring and now I will take one day at a time as I head into unchartered waters. I will love you everyday my sweet boy and your father and I will never give up on you.

  56. Emily, You have accomplished more than I ever dreamed possible in your 27 years and I cannot wait to see what comes next. I am so proud of you and love you more than you will know. Keep spreading your love, smiling your smile and bringing sunshine to those around you. I am here for you always. Mom

  57. Kelle, your blog is absolutely amazing. After reading your book a few years ago, I have followed your blog and instagram. Nella’s story is a huge inspiration. I am currently working towards a degree in special education, hoping to work with individuals with Down Syndrome and/or Autism. Your blog gives me so much information towards my future endeavors. You have an amazing children, and are such an inspiration to me. Today I will most definitely be raising awareness for down syndrome because awesome children like Nella deserve it!

  58. No matter if the child is “normal” or had DS, we all worry as parents how our children are going to thrive in this very judgmental society. I am so glad Nella is settling in to her new classroom and that she’s rocking and overcoming all those fears you have. She’s an inspiration to everyone and will continue to surprise you every day just like my kids do to me.

  59. My Mother’s sister was Mary Jane. I am sorry to say I never was able to meet her, but she is part of who I am am. She gives me strength to speak when those around me speak without thinking or sensitivity to others. I am proud to have an aunt that had Downs.
    Thank you for the post. Many blessings to you and your family.

  60. Prior to being an aunt to a beautiful niece with Down Syndrome, I have been a long time advocate and admirer of individuals with Down syndrome. I received a masters in Special Education to help join the forces in making this world a better place for all those with an extra chromosome. Because of you Ava, I will keep fighting. We can do more. We have to. You deserve it, and the world needs to know your voice and your talents are not any less because of that bit of extra that you are blessed to have. Cheers to you and all of your friends. You’ve done more in three years than I’ve done in my life. I pledge to always fight with and for you.

  61. My hair stylist’s son was born with an extra 21st chromosome. Today I celebrate Ethan. Today I am wearing all blue – even down to my shoes, cause his mom requested it in celebration of WDSD. Today and every day I embrace all the different people in my life…my granddaughter hasn’t got that extra chromosome, but she was born with certain challenges. Reading your blog for the past 4 years has given verbiage to my anxiety and I have found hope and relief in your writings. I would not change one hair on my granddaughter’s head. Like the song says, “I love her perfect imperfections!” Viva la difference!!

  62. Braden. My sun and my rain. My light and my dark. My sweet and my sour. But, always, always my heart, my soul and my hope.

  63. “Worrying about the future is like praying for something bad to happen.”
    One of my favorite quotes although I don’t know where it originated from! Thank you for sharing your story and pieces of your life with us all. It has been so inspiring!

  64. Our local grocer employs many young adults with special needs. My five year old daughter and I have developed a neat relationship with one of those employees, Adam. He has taken an interest in Lucy, and they always click when they see each other: “hi Lucy!” “hi Adam!” Sometimes I will stop and talk to Adam about his day, how he is doing, what changes are going on in his life… I pledge to continue to help Lucy to treasure the unique gifts that each individual has, and to model for her how to treat everyone she meets with respect, interest and dignity.

  65. Ainsley, in the 6 years since you were born, I’ve watched you overcome so many obstacles, big and small. You are so brave, so smart, and so very beautiful. It is a privilege to be your mommy. I love you! “Be strong and courageous. Do not be afraid or discouraged. For the Lord your God is with you wherever you go.” Joshua 1:9. And Ainsley, I can’t wait to see where the Lord takes you!!

  66. This beautiful post moved me to tears.
    All parents feel the fear that comes with their child experiencing something new and foreign and challenging, but knowing you can’t control the actions of others, only prepare your child the best that you can, is hard to accept sometimes. Your appeal for classmates and teachers and coaches and coworkers and bosses to help those who might need a little extra patience/kindness/support touched my heart.

    I am a mom to three little ones – none of which have DS. My eldest daughter was born with a cleft lip and palate. So I know a tiny bit about borrowing worry. I worried myself sick while I was pregnant and I still get anxiety when I think of all the surgeries she will face in the future. I can’t control the mean comments she will get in middle school and I can’t prevent the pain from all the surgeries that are medically necessary. Your advice about not worrying today about years worth of hardship is spot on. My situation is nothing compared to yours, but I can emphasize with your worry about the future.

    I don’t personally know the struggles you and Nella and your family face, but through reading your blog my eyes are continually opened. And I always leave with a smile. Your pictures convey her big, beautiful spirit and who can’t help but smile seeing that?? I am so glad she enjoys school. I can just picture her running down the hallway and hanging with her new friends. :)

  67. Thank-you Kelle. Thank-you for your inspirational words. Thank-you for helping me realize that looking into the future only takes away from the present. Although I am not personally affected by anyone with Down Syndrome, your words still have a way of touching me in such a positive way. I am a college student and will be graduating next year and I have no idea what I want to do with the rest of my life. Your comforting words make me realize that sometimes it is best to live each day to the fullest and simply enjoy the little things.

  68. Love your post!!! We celebrate this day with our Little Leah, she brings us so much joy and love.


  69. This was such a beautiful post and even though I don’t nor have ever known anyone with Down Syndrome I do feel that I know Nella through your blog. Me and my four year old, Ava, look at your pictures and ooohh and ahhh over all the fun things you do, the cute outfits, the happiness that shines through. Thank you for reminding us all about acceptance and how we all play a part in making a difference to those with extra challenges. Happy 4-21 to you, Kelle!

  70. Loved your post. We were blessed with David 11 months ago. Oh, how we love this little boy and our expanding world!

    We are on our way to a WDSD picnic wearing the “teach me to soar shirts.”

  71. David, I love you and I pledge to sit back and let you shine when I need to and step up and fight for you when you need it.

  72. David, I love you. I pledge to sit back and let you shine when you need it and step up and fight for you when you need it.

  73. Mark, for 50 years you inspired all of us with such laughter and love. You always had a hug for everyone you met, meeting the world head on at full throttle! You taught more with your life than any book ever could. I will always accept all people, no matter their circumstance, because of you. I am so honored that you were my cousin. I love you.

  74. I am Shelly and I love my son Cavan. He is the light of my life. I will never stop making the best decisions I can for him. Thought they be hard, I will follow my heart.

    Last fall I needed to our Cavan in preschool. All the personnel from the school district wanted Cavan to go to a school where a “special needs” classroom was available and he could move at the pace of people who were “like him.” It DID NOT feel right in my heart. I wanted him to go to the local elementary school with his siblings. I sat through several meetings where I cried til I couldn’t cry any more. I called teachers and principles trying to rally support. At the final meeting, through so many tears I lost count, I boldly said, “I want him at this school. I will accept nothing less.” And Cavan is thriving and has moved so far beyond anyone’s expectations. It’s more than incredible. It’s simply amazing.

    I love you Cavan. I love having a child with Down syndrome. You have enriched my life in more ways than I could have ever imagined. Love, MOM

  75. I don’t know anyone with Down syndrome but it wasn’t long after I started reading your blog that I made a pledge to be help anyone with special needs whenever I can. Your words are so heartfelt and really helped me to emphathize. Thanks for sharing and making this world a better place.

  76. Ellen, I promise to cheer you on from afar and to always be so thankful for your life. You are a sweet, sassy girl and knowing you makes me better.

    Barrett, I promise to parent you in a way that causes your love to grow and spill over for others different from yourself. In fact, I pray you never even see a difference. I pray you only ever see friend, classmate, coworker.

  77. Thank you so much for this. You have encouraged me in a big way, even to tears, to reach out to all who have Down syndrome or any sort of special needs and somehow bless me by entering my life. I don’t specifically know a person with Down syndrome (besides your BEAUTIFUL daughter Nella. seriously, she is just gorgeous and I dream of someday being able to witness her sweet smile in person one day) at the moment who I have the ability to love on a regular basis. I do, however, have an absolutely stunning, dear, sweet cousin with epileppsy who I will from now on love and appreciate in an even bigger way because of you. Again, thank you, thank you, thank you for making a wonderful impact on my life.

    All my love to your wonderful, beautiful, life-changing family.

  78. I am a mother of two chidden who do not have that special extra chromosome. Today, however, I am thankful for those in our life who do have that ‘special extra”…Nella, Lilly, and Nora…who I know only through Instagram and blogs, but my kids love their laughs, dancing, and antics. And, especially thankful for Andy…he works at our local grocery store. I went there today…and there he was smiling, bagging groceries, and helping and older woman get her groceries out to her car. Today, I celebrate Andy!

  79. Charlotte, you died before we had a chance to get to know each other but I see you in every beautiful almond eyed person and when I stop and smile and talk to them and love them, even though they don’t know me, I see you smiling back at me through their beautiful smiles. You have taught your Mummy so much. I wish you could have stayed here on this earth with your brothers and sisters and Mummy and Daddy. We will never forget you xo

  80. I have been reading your blog since 2009/2010 and since then my thinking about people with down syndrome has changed, I didn’t think about it that much before but now I always notice how joyful and happy most of them are. I stumbled upon this video today and thought of you and everything you have done to help scared parents dealing with down syndrome, although maybe you have already seen it. Here is the link: http://www.youtube.com/watch?v=Ju-q4OnBtNU

    All the best to you and your family, Gudny Lara from Iceland.

  81. I don’t know anybody with Down syndrome, but just wanted to let you know I think you’re awesome. You’re so positive and encouraging, and I can see only good things in Nella’s future with you guiding her.

  82. I shared my heart for my Mia today on my blog. Seeing her swim a whole lap in a swim meet still makes me wanna jump up and down! <3

  83. Thanks for all you do Kelle to spread awareness of special needs kids. I am a former special ed teacher, and now have a niece with DS ~ Emma ~ she’s a special 1st grade girl who loves to read and we love her lots.

  84. This is for my friend Joshy, who was always everyone’s secret favourite among our big gang of 10 kids. As kids we used to fight and fall in and out with eachother, but Josh was the beloved peacekeeper. We don’t fight so much anymore, but Josh is still the secret favourite.


  85. My 29 year old sister Lori has Down Syndrome. I have always maintained she made myself and my siblings better people, my children better,more compassionate people, and really everyone she meets leaves a better person! I pledge to work every day to make her world a happy place! She already does that for me

  86. I love you Nella Bean! Auntie Meg is here for you always. I think you’re a city girl. You come stay with me anytime. I’ll take you to Washington Sq Park, to the theater, and Pea misses you. I miss you staying in my apartment…come back, you are always welcome.

  87. Dear Raphael,
    My sweet nephew and godchild. We share the same birthday and that makes it extra special. You bring so much joy to all of us, Brighten our days and show us what unconditional love is all about, make your cousins better people!!! Bring out the best in us and all that in only two years. Soo much more to look forward to having you in our lives!!!!
    We love you!!!

  88. To my Chloe Fern, with the big, blue eyes. Your mama and I had no idea about you when you were born, and now, I can’t imagine life any other way with any other baby. Your light is infectious and I am so thankful to call you daughter. I love you to the moon and back.

  89. Sam, you light up a room with your smile. You are an awesome little brother and (mostly) an awesome big brother. You are a mischievous little creature. You are a spitfire. You are hilarious. You are 4. I will never underestimate you. I will always challenge you. You are beautiful and make me so happy…everyday. Kelle, thank you for your blog. It was an emotional life preserver for me the first couple years of Sam’s life. Sam is 5 weeks younger than Nella so we experienced similar emotions/situations/thoughts at the same time. Sam is doing super and life is pretty normal as you know. I regret how sad I was after Sam was born but I have made peace with that. We’re all good! My husband writes a column for the Times-Picayune in New Orleans called the Paternity Test. He wrote a little reflection about Sam for World Down Syndrome Day. If you get a chance please check out…I really envy you writers:) http://www.nola.com/family/index.ssf/2014/03/the_paternity_test_sam_at_four.html

  90. Joseph. I admire you so much little coconut. Every monday night, for the past 3 years, we’ve worked together : we do puzzles, we put words on stuff, we make our bodies stronger. And even though you’re exhausted from the day you’ve already had, you give it your all, mostly with a smile, always with goofiness. You are my tiny-mighty warrior. Seeing you evolve has been a blessing for me, even though I am the one who’s supposed to be giving. But don’t worry, you pay me back a hundred times everytime you greet me at the door with that fantastic smile of yours (which is you know, always!). Love ya little man :)

  91. Ainsley Jane, we haven’t officially met yet. You’re due 2 weeks from today. And I’ll admit that I was afraid when I first learned about your differences. I thought at first my fear was related to all of the possible obstacles and barriers that you may face; the scary chance of sadness and disappointments; or even the chances of rejection in the world. However, in the past few months I’ve learned that my fear was truly rooted in my own insecurity and worry that I may not be able to be the momma that you needed or even deserved.

    But I’ve grown.

    I’ve started to become open to a world that I never knew existed. With love and support from new friends and mentors, with the compassion of my family and friends and through the beautiful images and authentic experiences shared by other mothers like Kelle Hampton and her readers, I’m finally starting to see the possibilities. I feel excited and determined about our life together. I promise you that I’ll make many mistakes and that I’ll never get it completely right. But I’ll never stop trying to be the very best momma that you need and that you deserve. I’m honored to get to walk out this thing called life together baby girl. I love you and I cannot wait to be able to speak those words to you. And I cannot wait to see you unfold and grow into the amazing and unique person that God designed you to be.

    I’ll see you soon lovey! And next year we can celebrate March 21 together…

  92. This comment is in honor of my Superman, Joshua. There really are no words to tell you what you have brought to my life… More than most people dream of doing in an entire lifetime and yet you are only 2. I want to be just like you. I want to draw people in by a smile and have them stop their busy lives to relish in yours. (It happens every where we go…and as your mom – I could not be more proud…in fact, sometimes, we go do errands so I can show you off. ) I love you. I am honored and so very thankful to be your mama.

    This comment is to other lucky parents of children with Ds… I love sharing smiles with you that only parents of these beautiful children can possibly understand – the one that says, “We are the luckiest people in the world.”

    And to Kelle – Thanks for being you and sharing your God given gifts of being an awesome mom and writer. I wait to read your posts until I am ready for bed so I can end my day on your heart felt words. You rock.

    Happy DSAD!


  93. Kelle, I just cried big proud tears for that little girl and her family :) You all have pushed forward beyond uncertainty and fear and together you are paving a beautiful future. XO

  94. For Auntie Missy :) I grew up with her and have learned so many life lessons by her side. She is hilarious and witty and thoughtful and spunky. What a gem. Thanks for this post!

  95. Joy entered our lives two years ago on April 2nd. She has taught us to love more deeply. We have become more compassionate and considerate because of Joy. She is beautiful and has an absolutely charming personality! Joy has enriched our lives beyond measure! We will strive to ensure ample opportunities to enrich hers!

  96. Oh Keele- Please know how perfect your words are. I am a gen ed teacher with a hear for kids with DS. Please continue trusting and being wary at the same time. Neither kids for teachers are perfect so good for you being so on it. I look forward to checking my Instagram and your blog at the end of each day hopping for a new darling story. The “what the heck?” video made my day! I have a perfect story to end this special day. For 2 years I had a girl with DS in my gen ed classroom just for our “advisory” period at the beginning of the day. I looked forward to her smiles, giggles, and even her stubborn stubborn ways. She used to tell me, “You’re bossy! But my mom says that’s your job so it’s ok but you’re bossy!” Lauren moved on to high school and I missed her terribly. This year we got a new 6th grader with DS who I was drawn to as well. Her name is Claire. I have talked to her all year at lunchtime and we dance once in a while while music plays during lunch. Today we spun in circles till I though I might puke, but Claire looked as happy as could be. Her classroom aide finally came to me today and asked if I would mind having her in my advisory class like I used to have Lauren! I was so delighted to get eh chance to spend time with her. Then I came home to find out it is Awareness Day? I mean, how perfect was that? :)

  97. Although I don’t get to see you as often as I’d like to. I just want to make you happy. Timmy, you have changed my perception on life and how to treat people. I pledge to be as open as you are and to greet strangers with great big bear hugs as freely as you do. I love you Uncle Tim.

  98. I don’t know anyone personally with DS, but Kelle I just want to say THIS is the kind of blog entry of yours I keep coming back for. I love reading about Nella and how she is ding, and how you are really doing with everything – the day to day life, mixed in with the challenges and fears and successes. I’m so glad pre-school sounds like a wonderful new world for Nella. I hope you post more about it. She is my link to Down Syndrome. Thank you for giving me, a mum across the world with 2 girls of my own, a glimpse into other mother’s lives. xxx

  99. Christian…you are my sunshine. You light up every day with your smile & I cannot imagine my life without you. The past 9.5 months have been the most amazing, challenging, emotional times of my life but I wouldn’t change them for anything. God has blessed us beyond words with your presence in our family. I will strive to help you develop the gifts that God gave you, every day of my life & will not care about the dust that is developing in the house because your well-being is far more important. I promise to help you in any way possible but also to challenge you cuz that’s how you will grow into an independent little man!! Mommy loves you, with all her heart!!

  100. Ava, Archie misses you so much at pre-school and he’s so sad that you changed days! We hope to see you soon xx

  101. I pledge to do my part to open blind eyes to the beauty of those with Down syndrome so they can see the strengths, the beauty, the intelligence, the love that they may miss because of communication difficulties. I hope to be a part of making the world, or at least our community, more inclusive for my daughter who has Down syndrome.

  102. Our 4 year old son, Alex, has Down Syndrome and he makes us happy every day!! I am glad Nella is enjoying school! Great post.

  103. Little Jake at the campground where we spend many weekends each summer. You have no idea how happy it makes me each time we run into you, or when you stop over to pet our Roxie pup and let her lick your entire face. Your smiles touches me deep in my soul and makes my day. Every time.

  104. What a wonderful tribute to Nella and all those beautiful souls who bring so much joy. I don’t know if you’ve seen this or not but I found this beautiful video on youtube in honor of this special day:


  105. To my dear wee Pete. Pete you have not had an easy life. Diagnosed with leukaemia at 3 years old, you have been through more pain, trauma and fear than many people in your 10 years. And we still don’t have a cure for you. But you are the bravest, funniest, awesomest, most mischievious little boy ever. I know I am tired and grumpy a lot, but I love you more than anything in the whole wide world. And I will never, ever give up on you. Please don’t ever stop fighting, as you are the centre of my world, and I could not survive without you. You are my little angel and I am grateful every day that I have you.

  106. I’m sure you have seen this precious video for today…but just in case…


    You are a blessed and joyful example of true motherhood!

  107. In the 9 years Hope has been with us I have started to learn what acceptance really means, about patience, and about love in a way I had never experienced. I pledge to to continue to grow with, love and support you Hope. To take time with you, and to make the world better for uou

  108. “There are challenges ahead for all of us—both in our own lives and the lives of those we love. The most productive thing we can do is to face those challenges head on and to accept that life will sometimes be hard. I find more comfort and strength in accepting that fact than in resisting it. I hate resisting and dreading and pushing against all the ambiguous what-ifs of the future. It’s exhausting mind-consuming work.”

    YES! a million times, YES. thank you. xoxo

  109. Love this post, Kelle! I was reading, and my son walks in (he’s almost 3) and he asks me who the little girl is. I tell him her name is Nella and he says “She’s Abbie’s friend” and walks away (Abbie is my four year old). I hope that I teach my kids to be as accepting at 20 as they are at 2…. you have given me the knowledge that I needed to be able to do that – to know that everyone understands loves and kindness. I had always tried to avoid people with DS, just simply because I didn’t understand. I didn’t know how to carry on a conversation with them, so the introvert that I am – just avoided it at all costs. You have changed my way of thinking. I no longer avoid people. I smile and greet them, hoping my children see what you have taught me. Thank you, Kelle. You ARE changing the world. :)

  110. Love this post, Kelle! I was reading, and my son walks in (he’s almost 3) and he asks me who the little girl is. I tell him her name is Nella and he says “She’s Abbie’s friend” and walks away (Abbie is my four year old). I hope that I teach my kids to be as accepting at 20 as they are at 2…. you have given me the knowledge that I needed to be able to do that – to know that everyone understands loves and kindness. I had always tried to avoid people with DS, just simply because I didn’t understand. I didn’t know how to carry on a conversation with them, so the introvert that I am – just avoided it at all costs. You have changed my way of thinking. I no longer avoid people. I smile and greet them, hoping my children see what you have taught me. Thank you, Kelle. You ARE changing the world. :)

  111. HI kelle
    I know those fears well! I revisited those fears recently when my daughter Matilda (now 10) had to change ballet class. She had to leave the security of the small class with kids who knew her and go into the bigger more professional ballet class. Anyway, to cut a long story short, she has shown me that I don’t give her enough credit for what she is capable of. She confidently walked into the class and joined everyone at the bar, and she continues to do so each week. So my pledge is:
    Matilda, you are amazing and beautiful, and I pledge to continue to support you and be here for you 100%, because life is wonderful and we are so lucky to have you in our life xx

  112. Michael, You make me so proud in the little time you have been here and I see nothing but a very bright and promising future for you. Your smile lights up a room and melts everyone’s hearts. You have enhanced so many lives around you- even people you don’t even know. Mommy and Daddy will always be your #1 fans and supporters. The love we have for you is simply out of this world!

  113. I pledge to be there as long as I can with my beautiful little Oliver, walking by his side, advocating for him, and most of all loving HIM, the person he actually is. He doesn’t have DS, but he has some undiscovered genetic difference, and he has special needs. I pledge to keep him confident and finding himself in this world. And I pledge to always be open and supportive of all who have a little something different to them. We are all here in this world together and I want everyone to feel that from me. No one is better than anyone else. Anyone who mocks or puts down those with differences is missing the point of life.

  114. I just want to say thank you to you and your readers who have left such heart warming and beautiful comments about the people they love. In 3 months I will have completed my teaching qualification with a special needs specialism … I read these comments and posts with interest, it’s humbling to read and reminds me of why I am going into this career. I just wanted you all to know that the things you share are helping other families and children in similar situations, as I use them to become the best advocate for my students that I can be.

  115. I am inspired by my son every day and it has been said before but I will say it again a thousand times ; he has taught me so much. He enhances me and the world . When I was pregnant i would say , my child will save the world . He has saved my world . :)

  116. For my girl. My Nora Evelyn. Our Light & Life. You have lived up to your name from day one–a name we gave you before ever knowing the diagnosis. God knew the desires of my heart better than I knew myself, and I thank Him for answering that unknown, unspoken prayer. You are funny and sensitive and sassy and smart. You are beautiful and mischievous and tender and messy. You are helpful and challenging and creative and spunky. You are perfect. You are normal. You are Nora and you are loved. There was a time when I clutched my heart in devastation and cried out to God, “What did I do to deserve this?” It makes me cry to type that, remembering the connotation of that question at the time. But it didn’t take long to ask the same question with a much different meaning, “Wow, what did I do to deserve this? What makes me so special?” Clutching my heart and smiling widely, I rejoice and say, “Gosh, thanks God! I humbly thank you!”

    We’ve got your back, sister girl! Your daddy, your big brothers, your mama and countless others love you fiercely and will march along side you (or behind you…because you race ahead ;), and will protect you and guide you and teach you and learn from you!

    You are the Light & the Life we never knew we always wanted.

  117. This past weekend, on World Down Syndrome Day, I took my four children to a dance recital performed by Company D, a dance troop made up of Jr High and older children with Down Syndrome. It was amazing! I didn’t know any of the children participating but we left there loving everyone of them!

  118. Before meeting Brian I had never met anyone with Down Syndrome. Over the years he has become more of a little brother to me. We live in a community surrounded by alot of Irish musicians and I love how when we are out he isn’t treated any different and is always invited to come up an play his harmonica.


  119. I celebrate a sweet little darling named Cora. She is a dynamic little 6 year old who loves life. Her mama is a friend of mine and shows such love and determination to advocate for Cora, and other children with any type of need. What a joy to have a day to celebrate these wonderful people we love. I think you’re great, Kelle!!

  120. I love your blogs and photo’s so much

    Hugs from the Netherlands

  121. I will celebrate Kaera’s smile and remember her fierce love of life every day of mine.

  122. I don’t know anyone personally with Down syndrome. I have followed yours and Nella’s story for a long time and I feel like everyone who should ever know anyone, should read your family’s story. Kelle, you write in such a way that all people of all needs can relate. Thank you for being such a wonderful, beautifully written voice for so many. Thank you for teaching me what being a mother sounds, looks, and most importantly FEELS like. I’ll keep celebrating all of the wonderful people out there today and everyday, but especially you and Nella today! Thank you. C

  123. I have been away dealing with frozen pipes and a flooded basement (one day at a time), so I missed this post until today. I’m so happy that Nella is loving school and I’m not surprised she’s up for the challenge. All kids have “their days” at school and Nella will be no different. She will survive and she will thrive. She’s had a wonderful start at home. You guys are great parents and she seems very confident in knowing how much she is loved. She’s ready to fly (a little!) ~

  124. To Nella: you are a beautiful soul. You have given my own children their first friend. A friend they have never met but ask every week what you got to experience with your big sister Lainey. To them, you are no different. You are a small happy and curious little girl. I pledge to remind, not teach because they already know, my children as they grow older that just like having a different eye color, you are different yet so much the same. Value each other. Learn from each other. Be kind d to each other. Thank you, little girl for showing my kids how to live the world.
    Thank you Kelly for sharing a little bit of her with all of us.

  125. I am doing a presentation on Down Syndrome for my 7th grade Health class and I was wondering if I could use a picture off of your blog for my presentation.

  126. Sorry, my comment is a bit late, as I have not read you blog in about a week. I cherish our 8 year old grandson, Caedon! I was in the delivery room when he was born and knew immediately he has Down Syndrome. I am a Pediatric nurse and at the time I was working for a special education coop. I worked with may children with DS and loved each of them, never realizing that I might get one in our own family to love. There have been many challenges for this little guy, and lots of times I have consoled his Momma when she is in tears of just really frustrated. Caedon is loved and will go far and this family loves him!!

  127. I just found this and thought of you:

  128. I am mom to a beautiful 4 month old baby girl with Down syndrome. Ivy, I will always be your biggest fan and advocate. I will never stop trying to make the world a better place for you to live in. We are so very lucky to have her.

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