I sit. Waiting for the phone to ring. Waiting to hear from my 5-year-old’s doctor. Waiting to find out if she will undergo yet another surgery. Waiting to hear what our future holds. Like 15 surgeries in 5 years isn’t enough. My heart beats heavier as I mentally run through potential complications of the potential surgery. I watch her play with her birthday presents. Think to myself, “she has no idea what’s about to happen. what could happen.” I have a child with Spina Bifida. I’ve learned to live in the right here, right now, this minute, because things could change in a heartbeat.
Patience. Something I pray for on a daily struggle. Communicating with doctors can be a huge test in patience. Waiting for lab work. Waiting for test results. Waiting for a phone call that could change the future. Minutes seem like hours. Hours feel like days. Joy. Determined to find the joy in our everyday. Even in the middle of fighting over toys, tears, frustrations, there is joy. Joy in their health. Joy in their ability. Joy in what we have.
Before Charlotte, I knew nothing about Spina Bifida. When the doctors told us their suspicions at our 20 week ultrasound, they might as well have been talking a foreign language. Five years later, I’m still learning about it- the new challenges that we’re facing, the ones we haven’t worried about until now, the ones the future may hold. I feel the stares. The curiosity. The elephant in the room (although instead of an elephant, it’s a bright yellow walker with Goofy ribbons and a pink and white basket). The fear of someone being different.
I appreciate the questions. Don’t hesitate to ask. I’m not offended when someone asks what her diagnosis is- whether friends or strangers. I’m open. I’m honest. If no one asks the questions, how can we spread awareness? I am NOT suggesting you run up to a family and ask what’s wrong with their child. (Okay, I laughed when I wrote that- nobody would really do that, would they?!)
There’s nothing WRONG with Charlotte. She has some extra challenges and needs, but she’s perfect. I love talking about her. I love sharing the amazing things she’s doing. How she rocks at using her walker. How she’s so smart and loves preschool. How she has a new friend who doesn’t care that she can’t walk unassisted, who will grow up not caring, maybe not even noticing Charlotte is “different.”
If a five-year-old can do it- overlook the different- maybe others can also. Information helps. A quick Google search. Educate yourself. October is Spina Bifida Awareness Month. Talk to your children. Reach out. Smile. Be somebody’s friend. The phone finally rings. For now, we wait. Wait to see if things get better. Wait for things to get worse before choosing surgery. I didn’t choose the disability. I don’t choose the outcome. I do, however, choose my perspective, my reactions, and my attitudes. My choice today and every day- life can be hard, but life is good.