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I’m With the Band: A Backstage Pass to Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. Seven years ago, we were completely surprised when Nella was born with Down syndrome. Her diagnosis came with a lot of questions, fear and, yes, sadness because fear begets a gamut of overwhelming emotions that get reined in when we open ourselves up to A: understanding more and changing the way we view things, and B: LOVE.

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It took me all of two seconds to fall in love with my almond-eyed girl, and if we’re talking poker hands here, love is the royal flush, sweeping fear and sadness out for a triumphant win.

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Nella is pretty much like any other kid, and her extra chromosome is hardly recognizable in the activities that overall define our life–making family memories, learning about our world, traveling, planning adventures, exploring nature, progressing at school, creating new things and celebrating people and music and art and love. Nella’s extra chromosome presents a few challenges that we are continually finding ways to support and overcome, but it does not limit her from leading a meaningful, happy life filled with numerous milestones in which she contributes her strengths, talents, ideas and vivacious spirit to the world around her.

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I thought I’d answer a few questions about Nella and Down syndrome right now and use this opportunity to share some of my favorite photos of Nella in these seven precious years.

Down syndrome is the most commonly occurring chromosomal condition, and about 6,000 babies are born with Down syndrome in the United States every year.

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While a woman’s chance of having a child with Down syndrome does increase with age, 80% of children with Down syndrome are born to moms who are 35 and under (due to higher fertility rates). I was 31 when I had Nella, and we did not have prenatal blood work done to determine genetic abnormalities (we didn’t have it done three years earlier with Lainey either) nor did any other developmental concerns come up throughout prenatal visits and ultrasounds. Nella was born healthy and thankfully has had no major health concerns since birth. As with other kids with Down syndrome (and many without as well), we have monitored a few things more diligently with Nella throughout the years such as her eyesight, annual blood work and therapies to support her progression, but for the most part raising Nella is no different than raising our other two children.

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We pay attention to all the unique ways our children grow and need support, and we attend to areas where we recognize additional support is needed–tutors when they are struggling, one-on-one dates when they need a little extra attention, doctor visits when they’re sick, training wheels when they want to ride a bike but don’t quite know how, piano lessons when they’ve sparked an interest in music, teacher meetings when we’re noticing educational progress needs some attention, and all the efforts of arranging play dates and sleepovers when we feel they’re craving friendship and socialization. These needs and responses are universal to all children, and we’ve dealt with variations of them with Lainey and Dash just as much as we’ve dealt with them with Nella. That said, here are some of the things that feel important right now.

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The Value of Life

While we didn’t have prenatal testing for Nella, a prenatal diagnosis would not have changed the outcome for us (we wouldn’t have terminated) even though the news of that diagnosis was initially hard to accept.

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But prenatal testing has presented a lot of ethical dilemmas regarding Down syndrome, especially given the fact that modern prenatal blood testing is covered by many insurances, is safer and more accurate now and can determine genetic abnormalities much earlier in a pregnancy than previously offered testing. This has prompted a lot of discussion in Down syndrome circles regarding the future of our kids and our community as many have wondered if easier access to testing and earlier diagnoses would change abortion statistics. Separate from political stances on this (I vote for government to stay out of issues related to a woman’s body), I advocate for personal choices that recognize the value of life, especially when it comes to the value of life for a child with Down syndrome because I feel the focus is needed right now and because, hello, I have a child with Down syndrome and can speak with authority on the issue of her value and what she contributes to our world and those around her (how much time do you have?).

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While archaic stereotypes about Down syndrome are finally being replaced with a more normalized representation of it (thanks to a number of things including parents who’ve advocated, schools who integrate and include, television shows and advertising that represents people with disabilities, and social media that allows families to advocate and share their stories), there are still headlines (some debatable in accuracy such as the Iceland reports a few months back) that suggest the ways, as the Relevant so eloquently put it, “the sinister evil of ableism has crept into public policy.” How I wish I could talk to every parent on this planet who receives the news “Your test was positive.” How I hope our story plays a role, however small, in the days that follow that news and in the steps that come next in planning for that sweet baby’s arrival and anticipating what lies ahead. “Everything you’ve looked forward to from the moment you saw the plus sign on that pregnancy test?” I’d tell a waiting mom, “You still get it. Throw none of those dreams away.” Everything I want for my girl, from a supportive community and opportunities for education and employment to more parents who say “yes” to this journey no matter how afraid they are, is rooted in the belief that every life holds great value, and that people with Down syndrome contribute to society in so many important ways.

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That belief is one of the biggest reasons we continue to share our story. Peek into a little window of our lives, moms. See our joy, watch our kid learn to read, witness her friendships and her humor and the way we overcome obstacles like life intended for us to do. We look a lot like other families…just a little bit different. We need more stories shared of the joys and contributions of people with Down syndrome; more videos, more headlines, more positive information pulling up in Down syndrome Google searches and landing in people’s Facebook feeds. We need more doctors delivering news without a pitiful slant, more accurate up-to-date information about Down syndrome and the joys of families raising children with an extra chromosome placed in the hands of expecting parents. We need to continue to fight and advocate and share what we know to be true…that we are the lucky few.

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Why Inclusion?

If there’s one thing we know about the world, it’s that it is colorful, diverse and that we are all interdependent on each other, regardless of our differences. We flourish when we work together. Because our world is highly diverse, we believe our learning environments should model this. Providing and maintaining support resources for diverse styles of learning in an inclusive setting is not a gift–it’s a right and a civic responsibility. And countless studies support the idea that inclusion not only benefits students with disabilities as they learn best when they are pushed by their peers, but it benefits all learners.

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So many parents have told me how much they value having their children in Nella’s class and how much they are witnessing their child grow in interpersonal skills. What I tell all my kids is that their classrooms, their sports teams, their college dorms and the work environments for every job they’ll ever have in life are all going to be made up of a bunch of people that are different–they won’t all look like you, think like you, learn like you or respond to things like you. You’re going to need to learn to adapt, stretch, listen, help and recognize others’ contributions in order to truly succeed in life, so you better start looking for those opportunities now to practice.

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While inclusion drives our overall approach to education for Nella, ultimately, we tweak our beliefs and passion into appropriate variations based on our daughter and what she needs. The bulk of Nella’s learning experience is spent in an inclusive environment, but she does get pulled out for some individualized attention and spends a small amount of time with some other students who learn at a similar pace as her because we feel she needs space for this too.  We continually reassess all of this as a team based on her progress as well as her attitude, but overall, we strive for the most inclusive experience as possible because we know it works and because we want her prepared for the real world where we know she will do great things.

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What’s Our Biggest Challenge Right Now?

Each of our kids has various challenges they’re tackling at different times in their lives, and Nella’s aren’t any more important than her siblings’ challenges. That said, if you’re a parent of a child with Down syndrome, you might be curious as to what’s currently on our plate for challenges and how we’re dealing with them. There are, of course, specific learning goals like reading and sounding out more words, writing letters with legibility and performing math problems independently.

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More generally speaking, I’d say our greatest challenge right now is finding the sweet spot in combining what we expect of Nella, holding her accountable for those expectations, praising her for what she accomplishes and providing the right environment for her to succeed and feel proud of herself. She can be stubborn sometimes, and I find myself often questioning, “Is she being stubborn because she doesn’t want to try or is it because she truly doesn’t understand? Do we implement consequences? Expect more of her? Or does she feel defeated, frustrated that she doesn’t understand something when others seem to to grasp it?” (or reverts to being silly to divert you from noticing she doesn’t understand–stealthy tactic, smart girl :o) In these situations, we do three things:

1) continue our constant affirmations with her, reminding her that she is loved, she is safe, she is smart and that we believe in her and have seen her prove to us over and over that she can learn new things.
2) get creative in our instructional approach–if one approach isn’t working with her, we need to try a different way of introducing it.
3) stay patient and never give up. Milestones may take more time with Nella…but they always come with great celebration and appreciation.

Also, I just reread that paragraph, and that challenge and response also work for Lainey and Dash. This isn’t some unique secret struggle language for parents of kids with special needs. This is parenting.

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What’s the Biggest Challenge We Foresee in the Future?

For me personally, looking at the future of Down syndrome and what our kids will face, I am most concerned about job opportunities. While I am hopefully realistic about her ability to financially support herself, what I really want for Nella is the great satisfaction that comes from contributing her talents, ideas, time and skills to dignified work that fulfills her. Humans find meaning in work and validation in recognition for our work. I dream of this for Nella and her friends and commit to advocating for more employment opportunities. This is why I support and sing the praises of organizations like Ruby’s Rainbow and Project Search because they’re bridging a critical gap between high school and the overwhelming question of “What’s Next?” for so many families and chiseling some notable chunks in the wall of limitations that’s been present for so many individuals with Down syndrome. With more education and experience comes more opportunities, and I hope with more awareness comes the invitation for business owners and companies to explore and identify more jobs that can be filled by people with disabilities who will bring great value to their workforce, their businesses and their customers. And I own my responsibility of raising Nella to prepare her for independent work and these meaningful contributions.

Get it, girl.

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What Are Our Best Resources?

Good Lord, what did people do without the Internet? Navigating the world of special needs with a community of online friends has been the most incredible blessing to us, reminding us we are not alone but also giving us ALL THE TIPS from people who’ve done this before. Our biggest resource has been the network of friends we’ve met through online and mutual connections, and I now have a mental Roladex of moms I can call at any time for advice. When I recently traveled to Minneapolis with Ruby’s Rainbow to be a part of Kirsta’s launch to college, I had the added blessing of getting to know her mom. As she shared more about raising Kirsta when she was little and all the little things she did, tears rolled down my cheeks. “I’m YOU!” I said as I hugged her, “You’re describing my life right now!” She even pulled out a little trick for me to use with helping Nella’s wand obsession because Kirsta had the exact obsession when she was little.

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Now I have her number in my phone and converse regularly with her, a gift I feel so lucky to have. Build your community. Find parents you admire, reach out to Down syndrome networks and local chapters if you need help finding them, program their numbers in your phone, don’t hesitate to reach out. Read blogs that make you feel less alone, find people on the Internet, connect, connect, connect.

Best Advice for Raising a Child with Down Syndrome?

Remember that you are not raising a child with Down syndrome; you are raising a CHILD. What all of our kids need more than anything is US–to see them, guide them, challenge them, support them, fight for them and let them fly. Take one day at a time. Who is your child right now and how can you best be her mom today? Set high standards and make sure your doubts about what she might not be able to do never get in the way of what she’s capable of. Prepare to bowled over by new surprises and unexpected accomplishments. Think about the remarkable progress individuals with Down syndrome have made in the past 30 years–we are rewriting text books with new statistics every year–and be part of how we’ll do it again in another 30 years. You are not alone.

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Favorite Things About Nella Right Now

She’s so proud to write her name clearly, so she writes it all the time. I find “N e l l a” written in purple crayon on papers in my office, chalk-drawn Nellas all over the driveway, Nella, Nella, Nella on coloring sheets and homework papers reused to “play school”. Her sense of humor is sharpening, and she has a repertoire of funny shenanigans and phrases she pulls out, knowing they will make us laugh. She controls our Amazon Echo like a micromanaging boss: “Alexa! Play Look What You Made Me Do. Alexa! Skip this song! Alexa! Turn it up! Alexa, play it again!” Her body language has learned a little teenage sass–hip juts, head cocks and shoulder shrugs, appropriately manifested with an impish smile. She likes to “get cozy” in pajamas and would choose curling up on the couch with us, as close as she can get, to watch “Sing” any Friday night. Her imagination soars best when she’s playing Barbies, and her articulate speech and understanding of tone shines in the conversations she makes them have. We hear her making one Barbie say things to another Barbie like “Oh my God, you’re so funny!” or “Why did you do that? You hurt my feelings!” followed by “Okaaaaaay. I’m sorry. Let’s go to Target” (the savior of all things).  She’s attentive to directions and expectations of her and follows through on routines and tasks we give her like picking up her room, taking the dog out or putting laundry where it belongs. She can dance. Sweet Lord, can she dance, and when she’s dancing, her happiness is palpable. Her awareness of others’ feelings and her compassionate response to make people feel better is remarkable–beyond what I’ve seen for her age. “Mom, Dash is crying, come here,” she’ll tell me as she leads me to him. No one’s allowed to be sad in our house without Nella next to them, patting a back, hugging, whispering “It’s okay. It’s okay.” She’s eager to show us her accomplishments, pulling papers out of her bag, singing songs she’s learned, telling us about her day and her teachers and proudly exclaiming three of her favorite words: “I did it.” She gives love selflessly and freely and happiness comes easy for her because she is so receptive to the beautiful things around her.

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I am forever grateful for the gift this child is in our lives. What a privilege it is to celebrate Down Syndrome Awareness Month with a backstage pass to the show. That band member? She’s ours, and I couldn’t be prouder of the music she’s making.

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To see some other families who are sharing their journeys with Down syndrome, check out these Instagram accounts (blogs in their profiles): Hannah Seadschlag, Amanda Booth, Lisa Eicher, Heather Avis, Nothing Down About It, That Dad Blog, Ruby’s Rainbow, Changing the Face of Beauty, The House of Wheeler, In Case You’re Down, and Rafi Grows in Brooklyn. There are so many more I follow and love–if you want to add yours or have an account you love, leave it in the comments!

Comments

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  1. Shannon Tucker says:

    Kelle, Love this, as always!

  2. Katie leroy says:

    Kelle, I used to be a job coach with a non-profit called Community Integrated Services in Pennsylvania. We supported people with special needs at their jobs by shadowing them and helping them navigate the environment. I worked with many adults with Down’s syndrome at several different kinds of jobs. I just want to reassure you that most of them were able to become completely independent at work! There are so many organizations out there that will partner with Nella and your family when the time comes to ensure her success in the workplace! I have no doubt she will find a job that makes her feel happy and fulfilled ❤

  3. Sara Cook says:

    Love this and couldn’t agree more! I have followed along since the beginning of my journey almost 6 years ago. I don’t have a blog but I do share my boys on Instagram. @sstreettcook

  4. Kelle, I’ve read your lovely blog since before Nella was born … Thank you, once again, for writing so lovingly and honestly about your lives … As a woman living with permanent physical disability (from a brain tumor several years ago), and primarily homebound, it is far too easy to feel invisible in our society. Thank you for shining your light :-) so that we can all see a little better.

  5. you are an inspiration to me and other mother with babies with down syndrome. Thank you!

  6. Love this and the beautiful photos of NELLA.

  7. My account is @aworldwithray Sharing snippets from my life with our 2 1/2 year old son who has Down syndrome. :)

  8. Thanks again for sharing your story! It’s been 5 weeks now since we received word that my blood test for the new little girl I am carrying came back 99% positive for Down Syndrome. I still have days where I hope this is a bad dream I will wake up from, but they are getting fewer and farther between. Most days I am getting more and more excited to meet her! I’ve always wanted to be a glass half-full person, but I get weighed down by all the sadness in the world and feel that truthfully I am more of a glass half-empty person. I think this new little girl will help me experience joy more fully and I just hope and pray that I can bless her life as much as she is going to bless mine.

  9. thanks for great article

  10. I have loved following along on your journey with Nella! Like you, we did not know that our son Elliot had Down syndrome until his arrival this past May. He has brought so much love and happiness to our family and – just by being his beautiful self – he has already changed my entire outlook on the future. I share our journey with Elliot on Instagram, @larageragi.

  11. Amy in mn says:

    Great post. I’m dying to know more about Nella’s (and Kirsta’s) wand twirling obsession. Our little guy has twirling thing, too. He uses a bib with a long strap. It sounds like this is more common than I thought.

  12. My son Elijah and I attended the National Down Syndrome Society’s Leadership Summit in Washington, DC earlier this week. We were able to visit with members of Congress and encourage them to support legislation that will provide more opportunities for individuals with Down syndrome to obtain meaningful employment and ultimately live and thrive independently. You can learn more about Elijah and his successes here: http://elijah.net instagram/elijahmayfield5 and facebook.com/elijah5

  13. I wish you knew how much your book helped me after my baby was born a year ago. It was a complete shock and a difficult first few days. You are changing the way the world sees people with Down syndrome and I am so fortunate that moms like you are paving the way for me and my child. Every time a new mom posts in a Facebook group that they just received a diagnosis, I always recommend Bloom. I can’t thank you enough!

  14. Dear Kelle,
    I’ve been meaning to comment on here. I wanted to let you know that you’ve at least changed one heart here on the other side of the screen. I’m a little embarrassed to admit that I was probably one of those moms who would’ve seriously thought about terminating a pregnancy had I learned that my child had Down syndrome. It was ignorance, really. I didn’t know anything about Down syndrome – and then I stumbled across your blog a few years ago through Pinterest and I saw the meaningful, beautiful life you and your family lead and it changed something in me. Now I see what a gift a child with Down syndrome is – just like any other child is!

    Even through the screen Nella radiates beauty, charm, compassion and a smart brain. As does Lainey and Dash. I cannot wait to follow all three of them.

    Just a little reminder that what you’re doing? It’s working. Real good!
    I’ve become a little advocate myself too, whenever the subject lands on Down syndrome at dinner parties or wine nights with my girlfriends. I’m so much more educated because of your blog, and for that I thank you.

    Thank you for this beautiful little space on the internet. And thank you for letting us come along on the journey.

    Much love from a loyal reader

  15. Wow! This is so beautiful and perfect. You’ve so eloquently summed up the gift and challenge of parenting…any child, but also given us a unique look at one way of raising a child with a different challenge. I love the way you share your life in a way that helps normalize the difference that is Down syndrome. I’ve read your blog since before Nella was born and I have stopped noticing her Down syndrome in your pictures/insta stories/writings unless it’s something you specifically point out. And I think that is a great gift to all of us: to be able to know her–or any other child–as a child/person first and foremost and not as a diagnosis or an illness. When someone is more familiar it’s easier to see the beauty and joy that they are; thanks so much for letting your daughter (and Down syndrome) be familiar to us.

  16. Thank you for sharing this. Two weeks ago we learned the little girl I am carrying has a Down Syndrome. She also has a serious & rare heart defect, which gives her a pretty rotten prognosis for making it to delivery & then surviving the first couple of weeks of life. My husband & I are praying we get the opportunity to experience life with our little Maggie. As I looked at these pictures of Nella I tried to imagine what our little one is going to look like & how bright her own smile will be. Thank you for making this journey we have barely just started seem a little less scary.

  17. Longtime reader here – I really appreciated your section on being pro-choice, while hoping to crush scary narratives around parenting a child with Down Syndrome. That being said – I wish you could recognize your privilege a little more. It is easier to raise a child with Down Syndrome when you are financially stable and have resources. If somebody has multiple jobs and limited means, it can be really hard to support your kid as much as you would like to. I’m sure these moms know children with Down Syndrome are just as magic as all children are, but they don’t have the means to give the extra support to make sure they have the same opportunities as a child without Downs. Your children are so, so lucky to have a mom who can stay home with them and make sure every part of their life is spectacular, but for a lot of moms, that is impossible even when your child does not need extra support. It might be patronizing to think that these moms just aren’t imagining the bright side, when so many American moms are over-worked and struggling to lift up their children.

    • Thank you. It is not easy. It is not all dance parties, sleepovers, easy. It is multiple IEP meetings. It is specialists-cardiac, gastro, ENT. It is speech, physical, and occupational therapy. Kids are friendly in those early years, then they grow and pass in intellect and develop new hobbies and new friends. I’ve seen this happen because I have a relative with a daughter with DS. Her parents, siblings and other family have worked tirelessly to make sure that she is getting every thing that she can. At the physical age of 13, but the mental age of 4-5, it is a different landscape.
      Doctors should always be honest with their patients. Families should have information about options that work well for them, their financial and their environment.
      You are blessed to be able to provide, as many families do not have that option. Continue to be an advocate for your child

  18. elijah_s_momma on instagram

    Hi Kelle,

    I am a mom to a 3 year old little boy with Down syndrome. The craziest thing is that I followed you and your story of Nella from the beginning. I have to say when I read your stories, I always thought to myself, I could do that. I could be a mom to a child with Down syndrome. You made it look so amazing. I did have the prenatal testing after being pressured by a doctor due to my advanced maternal age…..( I was 35). When I got the results I was devastated. Like you said, our family did the same and now we can’t imagine life without our precious little boy. We are now entering preschool age and have put him in a private inclusive setting because our school district did not have that same vision for him. So glad that we could be part of this amazing thing with you!

    Ivy

  19. I’ve have loved having the privilege of following along on your journey with Nella. My husband and I have 2 amazing individuals in our lives with Down Syndrome. One is a relative who is about 8/9 years old and the older belongs to a family we are close with – he is 42 years old. Because of this when I was pregnant with my son, we weren’t scared when told that his twin could possibly have it. We embraced it. The dr was amazed at our reaction. We’ve seen it first hand and knew we could handle it. We ended up losing that baby but truly feel *lucky* to see the world through their eyes.

  20. A beautiful post on a most beautiful girl. What a blessing Nella is, not just to you but to the wider world who you allow to see a glimpse of her. She is definitely changing the world for the better. And, baby Nella? Oh my!!

  21. Tina Ronders says:

    Kelle – Thank you for sharing not only your eloquent writing talent but the photography is exquisite as well. There is something about loving a child especially knowing their love is unconditional. There are no boundaries. There is no limit. Again I say; unconditional. Thank you for sharing the beauty of loving what God has made and sharing that with the rest of the world to appreciate and be blessed.

  22. Hi Kelle, as usual beautiful post. Loved following Your journey as a mom and you showing how life can be beautiful. But that’s said dont some kids with Down syndrome have a lot more challenges than Nella- like feeding issues and more medical issues that need a LOt more doctor appointments? I understand that it’s nice to see that side but Nella the norm of how Down syndrome manifests or is the average actually worse and she s one of the luckier few? I genuinely dunno and am asking. Thanks!

    • There are definitely some that have more medical issues (just as there are typical kids who have more medical issues), but I’m going to go out on a limb and assume for these other parents that those issues don’t put them in some kind of downgraded level of lucky or that the joy and contribution they make to the world is any less than Nella’s because of those issues.

  23. You have made such a difference in my world and in our journey. I remember after getting our diagnosis I found your blog and read your book and it was only then i truly believed everything would be ok. You gave me the hope that I needed in such a dark time. Thank you will never be enough.
    Our little boy has just turned one and is the biggest joy and blessing to our family. Thank you for continuing to be such a light xxxx

  24. Kelle, you are amazing! This post is so well-written and interesting, and I think you deserve the lion’s share of the credit for how well Nella’s doing today. I’m so happy to read about all her accomplishments and am so proud of her. But she couldn’t have done all that she’s done without your constant involvement and encouragement. She is so lucky to have you for a mom. Love the pictures, too!

  25. It’s incredibly disheartening to read that you advocate for abortion. In an instant you vacillate between praising your DS daughter while suggesting that other DS children can be killed because their Mom doesn’t want them. I pray that all the other unborn Nella’s get to live, too.

    • I’m sorry, but voting against a bunch of men making rules about what a woman can do with her body IS NOT “advocating for abortion.”

      • And there it is. Those darn men! They’re always meddling!
        Women deserve better than abortion. Peddling the “men can’t tell me what to do line” is ignorant and antiquated.
        What is telling about your post is the regard you have for “wanted” babies and your ultimate disregard for babies with DS who aren’t. So, protect and love DS kids AS LONG AS I WANT ONE. But how unfortunate to be an unwanted Nella…a terminated Nella.

        • That is slightly unfair. If you read her post she clearly advocates pro life , she just feels that moms/families should make the decision for themselves and not someone else. But she has always advocated so well for kids with DS.

          • I’m with Rachel- every Nella deserves the dignity of her own life & her own choices. Your love for her, wonderful as it is, did not make Nella special – that uniqueness is inate to her.

            On the “bunch of men” issue unfortunately statistics say otherwise- the reality is that abortion is most supported & most ardently advocated by *men*. Men who want to exploit women. Men who want evade responsibility. Men who coerce women.

            Case in point- my good friend J was 3 mo pregnant when she learned that her baby was positive for DS. She had to fight her husband & even his extended family who were putting immense pressure on her to abort. By chance her husband connected with a colleague who had a child w/ DS & finally relented to have the baby but give it up for adoption (a wonderful alternative for people who feel they can’t “handle” a child with a disability.).

            So J had her baby. Her husband discovered how much joy that little girl brought & then that they couldn’t give her up. She, “Baby P” is now the “light of their lives” but she was perilously close to have her beautiful smile & all of her own choices brutally stripped away.

  26. This is so beautifully written. I already feel I know and “love” your children through your father’s loving eyes of his beloved “Littles”. Thank you for explaining Down’s so well, and letting everyone know that your Nella is a BLESSING…never a mistake. God bless you all.

  27. Wow, that was a damn great post. I am a maternal-fetal medicine specialist, and I am going to be sharing this post with parents expecting a baby with Down syndrome.

  28. Ruth Ann Myers says:

    Thank you, Kelle, for sharing so beautifully and passionately your journey with Nella, Lainey and Dash. Many similarities as experienced with Sophia (FiFi) in my nephew’s family, and we were so privileged to spend a day with them. I’ll never forget the welcome FiFi gave us on our first visit. She led us into each room of her house, and to her attic where she had me sit on the floor with her to see her shoes. Loved every minute of this joyful visit! Perhaps you have heard or read about “FiFi’s Forest” in Michigan.

  29. Thank you – your blog and book helped me immensely when we first learned of Baker’s diagnosis. We’re just getting started and already can’t imagine life without this boy!

    Instagram: @babybyoakley 💙

  30. Becky Pair says:

    Beautiful

  31. favourite blog:

    http://www.adeyesalem.com/

    Adeye and her husband adopted, in addition to their own three kids, some more, two of them with Down Syndrome.

  32. Cher Laske says:

    Kelle! Another friend… Of Nella, Dash,and Lainey’s POPPA RIK…!!!!!
    Thank you! Thank you! For settin’ the World Stage, for the WONDERFUL WORLD of Down’Syndrome! Nella’s world of acceptance, learning, love,and continunity,is becoming increasingly ARTICULATED WORLD-WIDE! Due,in part because of all of your quests,for expanded knowledge! And, knowledge is POWER! Power,for ALL, of these babies born with this special extra chromosome ! Nella, along with all the other Down Syndrome children, WILL GO ON to a HIGHER WAY OF LIFE! Due to the DILENGENCE ! Of all the others, ENCOURAGED! By, the knowledge seeking Wisdom! Of those who have come alongside you…. And, continued, to improve beyond, what GOOD, you have SERVED UP TO OTHERS! So very much LOVE, and PRIDE,in ALL OF your efforts! Cher Laske!

  33. Thank you for an excellent article, well-written. The world needs to see these children and understand. People do not accept because they do not know. Keep educating them. All children are special. Ella is lucky to have a special mother like you. God bless you, your family, and Ella.

  34. Jessica P says:

    I find it odd that you would argue for the government to “stay out of women’s bodies” while advocating for the life of DS babies. You know that the government is ALWAYS involved with our bodies, don’t you? The government says that we must put clothes on our body when out in public. It says we can’t put illicit drugs into our bodies, we must wear helmets when driving a motorcycle or bicycle, we must use our bodies to care for our born children, and that we can’t use our bodies to harm or murder other people. The body INSIDE the woman’s body when she is pregnant does not belong to her. It belongs to her baby. No woman has four eyes, four legs, four arms, two heads, etc. The baby has its own DNA from conception. You are stating that the government should allow a mother to murder her unborn child and it is beyond wicked.

  35. My insta (@kimberlymtaylor67) is not primarily about down syndrome but I do like to show what our life is like with our daughter (now 18 and adult she will tell you) when she lets me, because anyone who has A teenager knows how elusive they can be when it comes to mom’s camera 😉

  36. Thankyou for this lovely post. I find your journey with Nella so encouraging, and it has been wonderful to watch her grow and flourish. I love how you advocate for people with Down Syndrome and you really have made a difference, showing how precious their lives are. Carry on. =)

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