So, you’re mad. I get it. You just had a baby, people are crying, and this isn’t exactly what you had planned for the first moments of her life, let alone for her whole entire future. John just told you that he won’t ever get to walk her down the aisle, a friend is worried that you won’t be a fun person anymore and for goodness sake, what is with all the questions about where she will live when she is an adult? She’s like 26 minutes old and people want to talk about the next 60 years??
Look at that sweet button nose and those pudgy little fingers, and know this:
That baby in your arms just lit a fire in your soul that you didn’t even know existed. You are now fierce. Your life has been catapulted in a direction that you didn’t quite plan for but it is good. It is also not as different as you might expect. Don’t believe me? Guess what? Today, this conversation happened:
You: Let’s go to church Tessa! (Yes, you still do that.)
Her: No. I want hot dog. (Yes, she eats big girl food all on her own.)
You: No. It’s time for church. Get in the car. (Yes, she can walk. And climb into her car seat.)
Her: How ‘bout…. brownies? (Yes, she tries to manipulate you, just like her big sister does now.)
You: No. (As cute as she is… and she is really cute… you still know how to say no.)
Her: Dang it. (Thank Big Sister for that one.)
You need to know that along the way, you are going to meet a whole lot of new people. Your NICU social worker is right, not everyone will be your friend, and everyone will do things in their own way. However, as your husband will put it so eloquently in a speech a couple years from now, your huddle has now expanded. You will find cheerleaders in the most random of places. You will have lots of new friends.
Yes, you will still be fun.
Yes, she might even walk down the aisle someday.
The anger will die down and crop up. The sadness will too. But most of the time, it is just pure joy at this beautiful girl and all that she has to teach you. You will learn radical acceptance, humility, confidence, and how to live in the moment, at peace with whatever is coming next. Your Type A will become more like an A minus. It’s easier to function that way. Your marriage will be stronger, your home, happier. You will work really, really hard to keep everything together and sometimes things will fall apart.
Mostly though, you and she will soar.
Tonight when you are alone, crying in the shower over the baby that is so far away, know that in three years, eight months, and some odd days, there will be no more mourning. Your life feels like it is breaking apart, but when the pieces come together again, Girl, it will be beautiful. Congratulations on the birth of your sweet little miss Tessa.
Maggie Lay is a Chicago-area Rockin’ Mom to three girls. Her middle child, Tessa, is almost four and has Down syndrome. Maggie blogs about family chaos life at yosoylalay.com. She writes for her girls, but will take anyone along for the ride who wants to join in.
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.