To the Mama Who Used To Be Uncomfortable by People With Disabilities
Congratulations! You have a new baby boy, and he’s perfect. I know right now that will make you laugh and roll your eyes and cry all at the same time because you’re not sure what to feel. You want to be happy that you’re finally a mom. You want to celebrate his birthday. And all you can think about is what they’ve just told you — he probably has Down syndrome.
You don’t even know exactly what that means. You’re a nurse, so you’ve had one or two patients with Down syndrome, but you’ve spent little time with them, and, to be honest, you avoided talking to them as much as possible. People with disabilities make you uncomfortable, and you feel rude if you say the wrong thing or can’t understand what they’re trying to tell you. So you avoid them like the plague. You’re not alone, I promise.
What I can tell you is that your life is about to be turned upside down. You’re going to seek out people with disabilities. You’re going to want to read all about them, to read their parents’ blogs, to smile at them in the grocery store with a knowing grin. A year and a half from now, you’ll be the one trying to comfort mamas just like you who are dealing with their own diagnosis demons. It sounds crazy, but it’s true.
You’re going to feel pain. There’s going to be lots of it. It’s going to hurt when your beautiful son gets wheeled away to the NICU because his oxygen sats are low and he’s in distress. It’s going to hurt when you can only hold him every three hours, for 15 minutes at a time because of his jaundice. It’s going to hurt when you have trouble feeding him, and he won’t nurse, and he spends his first 16 days in the hospital gaining no weight. It’s going to hurt when everyone you know starts sending you articles about families of kids with Down syndrome, and you realize that you are that mom. You’re the “special needs” mom everyone knows. And that’s going to bother you for longer than it should.
You’re going to feel scared. Terrified, really. You’re going to be scared when you find out he has a heart defect and might need surgery. When they think he has sepsis. When you first see him with a big IV in his tiny little head. When you take him home, and he’s finally off the monitors and you can’t see on a screen somewhere that he’s breathing or that his little heart is beating, you will be terrified. You will spend 23 hours a day watching for the rise and fall of his chest. Even a year later, you’ll be scared. You’ll worry about what will happen if you go to playgroups and what about when he’s in school? How will kids treat him? Will you struggle with getting him the best education? You’ll always be a little scared. That’s OK.
You’ll experience joy. You’re going to feel joy when you take him to his first paediatrician’s visit and realize he’s gained more by nursing in three days than he did in nearly three weeks; you’re going to feel so triumphant. You’ll feel joy every time he goes to the nutrition follow up clinic and gets a gold star and especially when they discharge you from their services because he’s gotten so chunky. You’ll be elated when the cardiologist tells you, at a month old, they don’t need to see him again for a year. You’ll be even happier when, a year later, they tell you they no longer need to see him. You’ll feel joy every time that little head is resting on your chest and his little arms are wrapped around you, and you realize your entire world is right there in one little rocking chair.
You’ll feel encouraged. You’ll read the stories of others and be amazed at how far society has come and how much opportunity is out there. You’ll know anything is possible, that your son can be whatever he wants to be and that you’ll be proud to be supporting him throughout it. You’ll see what others are doing to promote awareness, and it will absolutely floor you.
You’ll have adventures. More super cool stuff will happen once you’re a mama than you ever thought possible. You’ll be on TV meeting Tara and Pip from Happy Soul Project, a blog you love. You’ll have his photo featured in a video for your favorite cloth diaper company. You’ll walk your first Buddy Walk and raise $1,000 for it. You’ll write a letter that will be featured in your local Down syndrome association’s welcome package. And you’ll help some friends who are having a baby who has health issues, too.
You’ll talk to everyone you know about Down syndrome. You’ll want to educate people and get the word out and introduce them to the possibilities that are so real for your child’s future. People will ask you questions, and instead of crying,or panicking, you’ll want to answer them. You’ll be open to educating people and helping spread awareness about how beautiful life can be, despite a diagnosis. Or maybe even because of one.
Seventeen months out, you’ll still worry about Thatcher’s future because you are a mom and that’s what we do. But you’ll look forward to all the opportunities out there and be proud of how he is and will continue to squash stereotypes (and break hearts in the process!). The thing you’ll worry about most will be how much you’re going to cry when he finally says “mama” or how he will treat his baby sister on the way. You’ll also laugh every time he flirts with a lady (extra points in his book if she’s blonde) and cheer him on as he walks around the living room pushing a chair.
Sometimes you’ll look back at the feelings you’re having today, and you’ll be sad you felt them, but you’ll know that grieving is a process and that you’ve gone through it and come out OK. You’ll know that how you’re feeling now… that’s normal. But it’s not forever. But today? Today you can cry. Today you can be sad because your future is not what you thought it would be. But Mama? It’s so much bigger and better than you ever could have imagined.
All my love,
Follow this journey on The Odyssey // The Incredible Journey of Thatcher Ulysses.
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