Down Syndrome Mom - The North County Moms

I’m pleased to share this post about a mom who is raising a family that includes a child with Down syndrome. Similar to Kelle, I too am a mom of three, and my youngest son is Trisomy-21 diagnosed. As the founder and publisher of The North County Moms, I’m able to bring more awareness around a community of beautiful humans with so much potential.  Please see the links at the end of this post to learn more about my family’s story.

When Kelle Hampton wrote Bloom: Finding Beauty in the Unexpected, she described coming to terms and embracing her daughter Nella’s Down syndrome diagnosis.  Quickly becoming an advocate for the Down syndrome community, she developed a huge following for her writing, which carried over to her popular lifestyle blog, Enjoying the Small Things.

Read our Meet a Mom Interview with Kelle Hampton.

But this past year, Kelle shares with our team at The Local Moms Network that she has had to truly look find the beauty in the unexpected, with the collapse of her marriage, a health crisis for her older daughter Lainey and moving her family from Florida to Michigan. Here’s how this strong mom has weathered what she calls “the hardest year of my life”.

You’ve had some big changes since we spoke to you just a few short years ago – including a big move…
We are now in the whole new world of bigger kids—something that felt so far off five years ago. We also moved to Michigan—where I grew up—to be closer to family. As bad as winter is, it’s been nice to feel the seasons shift again (fall was a dream!) after living in a tropical climate for so long.

Your daughter Nella is now 14 – and we’ve been following your story since she was born.  Can you share what she’s been up to?
This has been a fun year for Nella because she’s really embracing all things teenager. She’s very into fashion (helps having an older sister who is), has an impressive collection of makeup (which she applies flawlessly, might I add) and spends hours getting lost in music. Billie Eilish is her favorite. She dabbled in theater last year (performed in Matilda), is in choir this year and we’re excited to see what passion calls her next.

Amazing! How has the perception of Down syndrome changed in the past decade-and-a-half?
I’m so grateful for this time in society that Nella is young. So many moms and dads ahead of us have paved the road for more acceptance and visibility for people with Down syndrome. In just her fourteen years, we’ve seen so many more people with Down syndrome in advertising, on shows and in movies and countless headlines highlighting their accomplishments. There’s so much more work to be done, but there’s definitely momentum that feels promising. We are raising the bar!

What would you tell yourself now, that Nelle is a teenager, in that delivery room so many years ago?
Stay present always. Do not jump ahead imagining the weight of the future. By the time you get there, you all will be fine. All you have to do is wake up in the morning every day and love the child you’re with, show up for them that day. You can do that, right? Nella has always been Nella—full of joy, smart, capable, an absolute delight. Most of what I’ve had to adjust or work on to change my perception of what I thought life would look like has more to do with me than her.

Recently, your older daughter Lainey has weathered her own diagnosis of a serious neurological condition – how has your experience with Nella prepared you (or has it) for helping Lainey through hers?
Be careful what you subtitle your book. “Finding Beauty in the Unexpected” seems to be a repeated storyline for me, ha! Yes, this year, after going through a couple years of perplexing health issues for Lainey, we found out she has Hereditary Spastic Paraplegia, Type 5–a rare genetic mobility disease. When we received the news, it felt like deja vu—disorienting devastation, realizing life might look different than we expected.

Obviously there are some really tough challenges that make this diagnosis different. But within hours of receiving the diagnosis, Lainey told me, “I’m so lucky Nelly’s my sister. She taught me everything I’m going to need to know.” I know that I once thought Down syndrome would be the hardest thing to deal with in life, and now we forget all the time that Nella even has it. Disability does not define us. We hold on to that truth as we walk through this next challenge.

You also came to the end of your marriage. What has that process been like?
This has definitely been the hardest year of my life and the biggest test of “This isn’t what you thought life would look like, is it?” I had an idea in my mind of what family meant—it meant a home with a mom and a dad together. I remember telling my therapist one day as my marriage was falling apart, “But family is what I do best. It’s everything I am.” I felt like my entire identity was falling apart. She smiled and reminded me that I once had to rewrite a narrative of family before. “Do you know how many other moms out there think that same thing and are feeling like their world is shattered because their marriage is ending?” It felt like an invitation, similar to the one I received when Nella was born.

These hard events in life are story starters. We get to pick up the pen and write what happens next. We get to show the world that a vibrant beautiful family comes in lots of shapes and sizes.


More from The North County Moms & The Local Moms Network:

Meet María Felicia Kelley, Author & Founder — The North County Moms

Meet Morgan Matkovic, Author of the New Book My Sister Lila Lee

Join The North County Moms Network Community

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