It’s Down Syndrome Awareness Month. For weeks I have spent hours trying to come up with the very best ways I can help others understand Down syndrome. I have considered what would be most impactful, what information and statistics would best fit our family and what Down syndrome means to us.
Charlotte Grace is almost nine months old. The day she was born was the most beautifully orchestrated event-one I never could have planned. Very rapidly, though, our girl’s health declined in the hospital and we had no understanding of how or why. Soon, what felt like a two-week eternity, we were informed Charlotte had Down syndrome. Testing and poking and bloodwork were the norm inside NICU- and I prepared myself for a lifetime of doctor’s visits. I knew this because I had a community of families and colleagues from nearly a decade of relationships who had shared with me their stories of those like our family. However, the many hours of medical care is one area of DS life I’m pretty sure most outside this community aren’t aware of.
Our girl has been lucky. Healthy heart. Healthy blood. Many babies born with Down syndrome have weakened immunity, hearts and are more prone to blood cancers. Many babies with Down syndrome and their families struggle with far more appointments and worry than we have thus far but one thing I’d bet we all have in common is that we all spend countless hours in waiting rooms, innumerable minutes coordinating visits to this doctor and that radiologist, this check for cardiology, urology, ENT, audiology, physical therapy, speech therapy, and, coming soon to the Lewises; water therapy. It can be overwhelming at times and very often lonely, simply because we’re too exhausted to give self-care or spend time with loved ones. But here’s why I share. Not for pity. Quite the opposite.
When I consider these things, it may seem like it’s all for a fix- to fix our girl, to repair a damaged body caused by some inexplainable segment of time that inevitably means a lifetime of searching for a “cure”. Why else would we push ourselves to the utmost limits of sanity putting our precious babies in these tough circumstances if not for the hopes of correcting a mistake?
My daughter is not a mistake. Neither is her body. Her body is not made the same as mine or yours but that doesn’t mean it’s wrong. It means her body needs understanding, not correction.
“…she is already made perfect in Him, I just don’t know exactly what that means yet.”
She is already fearfully and wonderfully made. She was created in His image. I am charged, as her mother, to help others understand her in whatever way that takes form. As I spend limitless time researching things like methylation and the intricacies of how synthetic vitamins impact her tiny body, I remind myself she is already made perfect in Him, I just don’t know exactly what that means yet. The world doesn’t know exactly what that means yet.
Down syndrome awareness is not about a cure. It’s about raising funds to provid resources to people who can help the world understand those who have Down syndrome.
“…she is a good and perfect gift and so very fearfully and wonderfully made.”
So today, as I sit in the lobby at Texas Children’s Hospital once again-waiting for Charlotte’s urinalysis and kidney reflux results, I remember that she is a good and perfect gift and so very fearfully and wonderfully made.
Please consider making a donation to our local Down Syndrome Association so the future of our world can know more about our precious Charlotte: The Lewis Pride Team