I’ve spent my entire mom life raising an extra special child, one with a disability. It’s not been the easiest road, but for me, it’s been one of the single best things I’ve ever done, and it changed me and how I live life.
Madilynn is our first-born and from her very first breath, she has been our special girl. She came into this world a 6 pound 8 ounce sweet little bundle. I remember examining her carefully those first few hours; I couldn’t believe how incredible she was. She was the perfect blend of Jay and I. She had his chin, which was the first thing I looked for, and his feet, but otherwise she was all me. She was amazing.
My life changed forever that October day, not only because I became a mother, but because I also became the parent of a child with a disability.
I had no idea at the time, but the next few years of our life would be filled with doctors, feeding tubes, more doctors (in the form of specialists), and tons and tons of tests. That would be followed by even more doctors, cranial bands, ankle braces, as well as every therapy you can imagine.
As I think back to those early days, I’m not sure how I made it, honestly. There were so many terrifying moments and unknowns. So many doctors. Each day was a little scarier than the next.
No one knew what was going on with my baby.
I remember the morning we had the test for Spinal Muscular Atrophy or SMA (an inherited neuromuscular disease that can be fatal). It was one of the last in a long string of tests we had to have done and I was sure I couldn’t handle another second of doctors and nurses poking and prodding my tiny baby. But I didn’t break. Instead, I talked myself off the ledge, held Mad’s tiny little hand in mine, and managed to keep it together enough to talk quietly (and reassuringly) to her while they completed the test.
I found strength I didn’t know I had.
I did a lot of that actually, finding things within myself that I didn’t know were there. Strength, power, and most importantly, my voice. When doubt or fear would rise up, and they always did, I would dig deep within myself and push back. I would tell myself I could do this. And that I was capable of making these tough choices; I was doing the right thing. I can’t tell you how many times I had that conversation with myself. A hundred maybe…
Always being a shy and quiet one, I had forced myself completely out of my comfort zone in every way possible.
I spent my free time during afternoon naps at the computer learning everything I could about the laws and our rights. I did more research than I probably should have, but I knew that information was power and I wanted to be prepared for whatever came next.
I ended up becoming quite the advocate; fighting countless battles over the years, with the doctors and then with the schools and even the school administration. I fought for what I thought was right for my girl. Email after email, phone call after phone call, meeting after meeting.
I literally had no idea what I was doing most of the time; I didn’t have an instruction manual for this, but I was confident in why I was doing it, and that took me a long way.
I now have an 18-year-old and we are almost through high school. Those early years seem like a distant memory in a lot of ways, but the moments I lived back then and the things I learned, both about myself and about life have stayed with me. In fact, they are me.
I am forever changed. I am stronger, kinder, and not afraid to speak up when I need to. I am driven and dedicated. I am understanding. I am proud – of myself and of Mad. I am courageous, and capable, and so very grateful.
I am Madilynn’s mom.