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.
I’m in tears. Beautiful.
“If a five-year-old can do it- overlook the different- maybe others can also.” What an amazing thing to say. Thank you for being so brave. Your words will touch many people.
Thank you, Jessica!
I hope it’s OK if I share a story with you. A very dear friend of mine and my husband has Spina Bifida. We all met in college when my husband and our friend were on our university’s Division 1 crew team. Even more impressive, our friend made the US National team and competed internationally. He has not had use of his legs since he was a child, but he was able to become a very talented coxswain and benefited greatly from being involved in team sports from the time he was in high school. Since graduating college he has testified before Congress, gotten married, and is expecting his first child later this year. Our friend is also a very talented musician. Your daughter will be successful as well because she is blessed with supportive parents who see her as a capable child…which she is! Allowing her to be independent and nurturing her talents and interests will not only help her flourish, but it will help others to see her for the amazing, capable person she is. You’re doing a great job!
Thank you for sharing that with me! I often think about all the opportunities Charlotte will have in the future and look forward to exploring her talents and interests!
Thank you for this. I am 30 years old and was born with spina bifida. I was unaware that October was awareness for spina it also happens to be my birthday month :). I am a testament to show that your daughter can be whoever she wants to be with your encouragement. I was blessed with a family and great that never treated me any different. I have graduated and have two bachelor degrees I’m also a mother of a soon to be 3 year old. Many blessings to you and your beautiful daughter!
I have loved getting to meet your daughter and your family. She has such an amazing spirit and always taught me more than I felt I could teach her!