So, there’s this page I follow called The Mighty. It’s a pretty awesome page that’s committed to raising awareness about disabilities through sharing of stories and blogs. This month, they are focusing on diagnosis; they are specifically asking “if you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?” We know that I’m sometimes uninspired and I miss a lot of blogging opportunities because I get mad writer’s block, but I knew this was a question I wanted to answer and that I wanted to take part in this opportunity. I’m a member of quite a few mama groups, and so I sometimes see mamas getting diagnoses or potential diagnoses of T21; I hope that maybe they can read this blog and understand where I’ve been, and know it’s been a battle to get from there to where I am today, and that they will get there, too.
Congratulations! You have a new baby boy, and he is perfect. I know that 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 mum. You want to celebrate his birth day. 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 have spent a very little amount of 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 are trying to tell you. So you avoid them like the plague. You’re not alone, I promise.
What I can tell you, what this means, is that your life is about to be turned upside down. You are going to seek out people with disabilities. You are going to want to read all about them, to read blogs by their parents, 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 demons regarding a diagnosis. 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 sats are low and he’s in distress. It’s going to hurt when you can only hold him every three hours, for fifteen 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 mum. You’re the “special needs” mum that 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 old 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 and 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 will be scared. You will 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 will always be a little scared. That’s okay.
You will 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 will 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 will be elated when the cardiologist tells you, at a month old, that they don’t need to see you again for a year; and even happier when a year later, they tell you that they no longer need to see you. You will feel joy every time that little head is resting on your chest, and the little arms are wrapped around you, and you realize that your entire world is right there in one little rocking chair.
You will feel encouraged. You will read the stories of others, and be amazed at how far society has come and how much opportunity is out there. You will know that anything is possible, that your son can be whatever he wants to be, and that you will be proud to be supporting him throughout it. You will see what others are doing to promote awareness and it will absolutely floor you.
You will 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 & Pip from Happy Soul Project. You’ll have his photo featured in a video for your favourite 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 DS association’s welcome package. And you’ll help some friends who are having a baby that has health issues, too.
You’ll do so many things that you never imagined. 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 to 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 that are 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 the most will be how much you are going to cry when he finally says mama, or how he will treat his baby sister, on her 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 okay. 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,