What if I told you I’m not especially strong? That I am an average woman who plays the cards I’m dealt? That you could do hard things, too, if it was the only choice you had. I certainly did not wake up on Sept. 23, 2012, thinking, “I really want to have a complicated birth.” But that’s what happened.
My daughter came into this world purple and small for a full-term baby. She has a rare heart condition, and we later learned she has Williams syndrome — a rare genetic disorder characterized by growth delays, short stature and developmental differences. The first years of her life were spent in and out of hospitals, at appointments and surgeries, follow-ups and therapies.
We were no strangers to Phoenix Children’s Hospital; it even became a place I felt at home. It was a place where Anya and I could see other children like her, and I could talk to other moms who understood hospital life and the struggles and joys of being a special needs mom.
Outside of the hospital, people didn’t understand. That’s when they’d say, “You’re so strong!” I wonder if they’d think so if they knew about all the nights I’ve stayed up crying — for all the times I’d watch Anya’s therapist teach her to do things other moms can teach their own kids to do. For each time I see Anya’s younger cousins or younger brother pass her up developmentally, and every time I watch Anya next to another 8-year-old. The fact that she’s behind is suddenly so loud. I wonder if they would think I was strong if they knew I wanted to quit, all the time. But I don’t.
I love Anya with everything I have. If you knew her, you’d love her, too. She lights up every room she walks into. She comes with this pure innocence and joy, and you can’t look at her and not smile. She radiates her energy onto everyone she meets. There are far more joys than frustrations in being a special needs mom. While most kids “grow up too fast,” I get the gift of enjoying each of Anya’s stages longer. Each “inchstone” is celebrated.
She is making her own time. We are all along for the ride, and it is truly a beautiful one. However, the next time you want to say, “You’re so strong” to a special needs mom, consider the pressure you may be putting on her. She may be looking for a moment to let her guard down and fall apart a little while confiding in you, her friend. She may not want to be strong, but hearing this phrase so much makes us feel like we have to be. She may be barely holding it together, and your words, while meant to be kind, could push her over the edge.
Instead, say “You’re doing a great job,” or “I’m here if you need help.” These words could be all the comfort we need. The truth is, we’re all strong when we have to be, but if we have to be, it can be very draining. Assuring your friends that they’re doing a great job while letting them know you’re there for them is the best thing you can do. They may even take you up on the help!
Remember mamas, let it out; talk to your friends and loved ones. It’s OK to break down and allow yourself to be built back up again. You are the best thing for your child, and you have to take care of yourself, too.
Britt Seim is an artist and writer. She’s the mother of Anya (8) and Wyatt (3) and is passionate about advocating for the special needs community. Seim lives in Buckeye.
