October is Down Syndrome Awareness Month. I’ve been pondering this since the first of the month. What should people be aware of? What do I wish I had known before Roo was born—or even in those first days and weeks after we found out that Down syndrome would be part of our journey? I realized that I didn’t need more facts and figures. I didn’t need to know about the education system and job options. I just needed to know that I wasn’t alone. And that I would get through this.
So I wrote a little letter to myself—not the me of today, but the me of three years ago, the me who was very suddenly aware of Down syndrome but who hadn’t really figured out what that meant.
My heart is aching for you right now. You are angry. And sad. And confused. It’s OK. Feel those things. You can even be angry at God—He can take it. Keep wrestling through it, because there is light on the other side.
You feel like you should spend every waking moment researching Down Syndrome and the best therapies and the possible illnesses that could come along with it, and future job options and everything else. But you just can’t bring yourself to do it. It’s OK. You’re not a research person, you’re a take-it-as-it-comes person. You have plenty of help from the support agencies around you—the information will be there when you need it. And you’ll have friends on this same path who are really into research. Let them research the protons out of it. They’ll be good sources for you when you have questions.
I know that you are overwhelmed when you think of the future. You can’t picture your family, your life, 5 or 10 or 20 years down the road. It’s OK. You don’t have to worry about that, because you don’t have to live there right now. Live today. And maybe even find a way to enjoy it.
Speaking of enjoying… you will. Right now you think that you will never be happy. You truly believe that you will have to pretend to be happy for the rest of your life, because you don’t ever want your baby to feel bad for making you unhappy. But this pain and sadness will give way to unspeakable joy. I’m not saying there won’t be tear-filled moments. Isn’t that life, though? You’ll have those for all three kids for various reasons at various times. But there will be far more smile-filled moments, I promise.
In the months to come, it will be hard for you to be around other babies. Some Sundays you will dread putting him in the church nursery, because you will be surrounded by babies who are younger than he is and doing things that he cannot do. It’s OK. Just keep him with you on those days. People will fight to hold him and love on him, and it will warm your heart. And when you are ready to let him go, those nursery workers will absolutely adore him. In that first year, he is going to touch more people’s hearts than you can imagine.
I know that you think you will never be the same, and you’re right. But you’re still you. You will grow in compassion, searching for moms who are hurting so that you can comfort them. You will be a more intentional parent, focusing more on things like character and less on things like grades. Your heart for adoption and your heart for children like Roo will combine to give you a fierce desire to rescue children with Down’s from orphanages around the world. You will search for your role in this—and let me tell you, three years later, you still won’t know exactly what that is. But keep praying and giving and telling others. You are an advocate for children with no voice. (You’ll even go to a village in Africa to tell people there why kids with special needs are good and important!) You will take this new journey and the talents and skills and passions that you already have, and you will use them to be a new—and better—you.
Oh, and I know that you are in a day-at-a-time mode, but I just have to tell you that three years down the road, you have an absolutely incredible little boy. He is sweet and funny and can light up an entire room with his smile. He is also unbelievably ornery and will make you crazy with his stubbornness—but deep down, you’ll like that too. (And don’t get too attached to that fuzzy head of hair. When he’s two, he loses every single strand of it. And he totally rocks a bald head.)
I can’t promise you this journey will always be easy. But I can tell you that it will be worth it.
Katy Epling is incredibly thankful for Down syndrome, the gift she never knew she wanted. She loves sharing with other women through writing and speaking, and can be found online at Diary of a Zookeeper and Hello, Darling.