Choose Brave.
I took this picture in Prouty Garden, the garden at Boston Children's Hospital. Ethan and I spent many, many special hours together in this garden.
This piece is a guest blog piece I did for Make a Wish America. You can find it here.
Last week after school pick up, my three boys and I went to Target for our weekly trip. Each week the drill is the same. My 18 month-old son, Bodey, was recently diagnosed with Muscular Dystrophy. He can’t sit up in a cart, so I pull his stroller out of my car. My other two boys, ages 7 and 4, walk by my side. We step inside the store and grab a shopping basket. Between the large storage space under my stroller, the shopping basket, and what we can carry we make our way through the store.
This simple task of going to Target is not effortless, but we manage and get most of what’s on my list. Up at the check out, my boys help unload our purchases so we can pay. I ask the woman at the check out to please be judicious in the way she packs the items in bags. I explain that I have some room under my stroller, and that I’ll have to carry the rest. This trip, the cashier looked and me and said, “You should use a cart! Why don’t you use the cart?” I don’t think she meant to be unkind. She was just making the obvious statement that a cart would be easier. I looked up at her and said matter-of-factly, “My son can’t sit in a cart. He can’t sit up by himself”. She stared back at me and didn’t say a word. The women in the check out lanes to the right and the left looked at me. They all looked at Bodey. It was easy to tell they were all wondering what was wrong with him. It was one of those moments when the music stopped and you could have heard a pin drop.
As we walked out of the store, the mom in the check out lane to my left looked again at Bodey. I smiled at her. I got to my car, loaded everyone up and sat for a minute taking a big deep breath. I reminded myself that having a son like Bodey requires me to be brave…in many moments. I know this might not sound like a big deal or a brave moment, but it is. Vulnerably telling strangers the pain of your heart, that your son cannot sit up, is hard.
This isn’t the first time I’ve cared for a child with special needs. My oldest son Ethan was born in 2005 with Congenital Heart Disease. His Hypoplastic Left Heart Syndrome kept us in the hospital for collectively 2 of his 7 years. We faced 8 open- heart surgeries, a g-tube, feeding therapy, physical, occupational, vision therapy and many developmental delays. He didn’t walk until he was 3. And when he finally walked, he struggled with balance. He was one of those kids that looked really normal, but there were little things people would pick up on. Strangers looked at him and tried to figure out what made him just a bit different.
I will never forget the time when I was grocery shopping with Ethan. He was in intensive feeding therapy for his gagging and vomitting. He requested a snack in store. I obliged. We were at the check out and he vomitted. Not a little bit, but everywhere! People around me stared. The little old lady behind me gasped and said something about how it was so gross. I felt one inch tall. I tried to explain that he was not sick, but that he had a heart defect and was learning to eat. Who knows what came out of my mouth. I helped clean up the puke, paid for my groceries and ran to my car. As soon as my car door closed, I sobbed. Just doing something normal like going to the grocery store felt so hard. I just wanted to feel normal, like every other mom.
Ethan died in June of 2012 after a long and courageous battle with his heart disease. Ethan was brave. He was never ashamed of his scars. He candidly told people about his special heart, his g-tube scar, his SMO’s he wore to support his ankles, and anything else he felt he needed to share. I learned so much about being brave from Ethan.
I’ve struggled with the loneliness that comes from having special needs kids. If I’m honest, I desire to feel normal. To be able to do normal things, like other moms. To be able to put my kids in kid care at the gym so I can work out in waking hours (vs. going at 5 AM). To be able to go out with my husband or go away for a few days without having to find a special babysitter equipped for my children’s needs. I struggle with feeling like “that woman, that mom, that person”. This second time around I’ve struggled with just wanting to hide. With feeling defeated. With feeling tired of the challenges that life has asked me to face.
But instead of crying in my car after loading up my Target purchases, I sat there and took a deep breath. I smiled at my kids then headed for Starbucks to treat myself for begin a brave mamma. Sometimes just the little, normal things require us to be brave. I’m so thankful that my Ethan taught me how to be brave. This time around I’m challenging myself to see more gifts, and less limitations. I’m leaning into my role as a teacher. Instead of feeling defeated, I’m reminding myself of all the incredible ways Ethan touched our family and our community. Bodey will be no different. He will shine. He will teach and I will help him be the best Bodey he can be, just like I helped Ethan. I’m reminding myself to hold my head high, and to be proud of the life I have, instead of the life I planned for. Not easy, but worth the challenge. I’ve come to know that I’m here to learn, grow and teach. Some days I’m brave, some days I am not. And both are okay.
