I can’t remember a day I cried harder than the day Noah was born.
I wish I could say they were tears of joy. But they weren’t. I was exhausted from the past six days of Katelyn being in the hospital, from the past 7.5 months of our incredibly rocky pregnancy, and from the past four-plus years of infertility.
After everything we’d been through and experienced, to at last have our son here, but in the NICU where we couldn’t hold him, and THEN to be told that it was likely he had Down Syndrome…I broke down. I mean like broke-broke. Physically, emotionally, spiritually.
I remember looking in on him through the reinforced glass of his little NICU bed and whispering through my tears, “Your life is going to be so hard.” I didn’t want that for him, and selfishly, I didn’t want that for myself.
It’s kind of funny how much changes in 15 months.
Las month, I got a week off of work and spent every day with Noah. Katelyn had President’s Day off, and we went to the American Museum of Natural History as a family. The rest of the week it was just me and him - we went swimming, out to lunch, to the library, to the bookstore.
That week, I witnessed what a light Noah is to the world around him. Smiling and waving at strangers, giggling at random things, delighting in a new experience, dancing at any hint of music - as you can see in the video above!
Sure, there are real challenges he’s facing. He’s still not crawling. He gets frustrated when his body won’t move the way he wants. His eyes and his heart are constant worries.
But it’s so clear how much he loves God’s creation. His life is anything but hard. The last thing I need to do is teach him it should be.
There’s a movement for parents of kids with Down Syndrome - they call themselves “The Lucky Few.” When I first heard it, I thought it was a way of trying to make a difficult situation seem better. But now I get it. We’re incredibly lucky to have Noah in our lives. And now, instead of feeling sorry for myself, I hope everyone will get to know a person with Down Syndrome.
These days, whenever I think of him and get teary-eyed, it’s no longer out of sorrow, but love and celebration.
World Down Syndrome Day is NEXT WEEK!
Next Tuesday, March 21, is World Down Syndrome Day (and the one-year anniversary of Noah’s Arc)!
This year’s WDSD theme is “With Us, Not For Us,” a human rights-centered approach that calls for the full participation and humanity of people with disabilities.
To observe WDSD with us, participate in the Lots of Socks campaign! Simply wear a pair of mismatched or colorful, attention-getting socks. When people ask about your socks, tell them they’re to raise awareness and celebrate the worth of people with Down Syndrome!
Then, take a “sock selfie” and share it on social media with the hashtags #WorldDownSyndromeDay and #LotsOfSocks. We’d love to see them! Tag us, or text us at 217-415-1862 (Matt) or 314-308-5201 (Katelyn).
Need some socks? Consider buying some from John’s Crazy Socks!
Prayers and Praises
Praises
A wonderful week together in February
Noah is standing and kneeling much more
He started occupational therapy through Early Intervention
He was approved for a third weekly session of physical therapy through EI
Prayers
Wisdom for us as we decide when to have Noah’s surgery - there’s a consult with the surgeon at the end of the month
A place to move in September
Through World Down Syndrome Day, people around the world will recognize people with Down Syndrome as integral parts of their community
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