Updated: Aug 2
First, let me give you a virtual hug. You must be so scared right now.
When I found out my son had Down syndrome, I was in shock. It felt like the whole world went dark and my life was over. I felt almost like I was outside of my body, watching some other woman deal with soul-crushing news. I wept for the good life I’d just robbed our older children from having. I wept for how humiliated I felt. My shame stung hard fiery red spots on my cheeks as I struggled to catch my breath.
ME??? My family???
How could You allow this, God? Surely You wouldn’t. They must be wrong.
If you’re feeling anything like that today, I’d like to pull up a chair and hold your hand while you grieve. I’d like to sit with you while the storm rages. But if you’re anything like me, you don’t want me there. You don’t want to hear anything about Down syndrome.
It’s okay. Be alone for a while. Think. Breathe. Yell and rage at God. It’s not fair. It’s really not fair.
Why does life have to be harder for some people than others? Why do some people get handed a perfectly healthy and functional body while others suffer with bones that break too easily or blood disorders or chronic pain? Why do some people have mental illness or end up paralyzed? I wish I understood it.
What I wish I’d known back then is just how very sweet, sassy, and spunky my son would be. I wish I’d known that he’d have a wicked sense of humor, able to tell when someone didn’t expect much of him and totally delighted by pretending like he’s confused. (Really, he’s totally amused by his own shenanigans.)
I wish I’d known that medical specialists can become good friends. I wish I’d known that Redmond would be the sweetest and dreamiest baby ever, sleeping through the night when his big brother and sister weren’t even doing so.
I wish I’d known how much support I’d have in the form of new friends and resources. I wish I’d realized that my unique little boy would draw people closer to us, rather than alienate us. I wish I’d known the sweetness I would find in my other children as they embrace their brother and adore him, totally delighted.
I wish I’d known that the health and intellectual difficulties he might face were just a new part of everyday life. We celebrate his milestones like crazy and we help him when things come hard, just like we do with our other kids.
Life with Down syndrome isn’t all happy smiles and loving hugs. There are days when it means holding him down for an IV or trying one more time to teach him a skill that should be mastered already. There are days when my husband and I look at each other like we’re strangers, deciding all over again to work together even harder than before to save our marriage. There are definitely some really hard days.
But here’s the thing: you’re stronger than you know. You’ve never been tested like you’re about to be, but you can do hard things. You really can.
A baby with Down syndrome is just a baby. He needs to be nursed and changed. She needs hugs and kisses and snuggles. He needs your undivided attention sometimes, and sometimes he just sleeps and sleeps.
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You’re going to be just fine. You’re going to be better than fine! Just you wait… Your heart is about to explode with more love and joy than you ever thought possible. Your family is about to be driven closer together than you imagined possible – the strength of those who’ve been through the fire together and survived.
You’ve got this. And if you join me in the Down Syndrome Diagnosis Network, we’ve got you. We’ll teach you and encourage you. We’ll cry with you and celebrate too. Welcome to a new normal. One day, you may even understand why we say we wouldn’t change a thing and we’re thankful to be part of the lucky few. ♥️
If you’d like to talk more, I welcome private messages.