Becoming Maddie

At the time of sitting down and writing this, it has been 127 days since Maddie’s diagnosis. Now some of her symptoms and issues started way before her diagnosis. So it’s really been 127 days since we found an answer to some of Maddie’s symptoms.

I’d like to say it’s been an amazing experience. It has been in some ways. In truth, it’s been different. Don’t get me wrong, I love my child. I couldn’t imagine having any other child. It has been hard though. I’m not sure what brought this to my attention, but I realized I haven’t looked back at Maddie’s baby pictures.

I try to take inventory of my emotions and how I’m feeling. So I reflected on why I haven’t really gone back and looked at pictures from last year. I wondered why I didn’t want to see my beautiful bald headed baby. Then it kind of hit me. My hopes and dreams for my daughter are completely different. Her old pictures are a reflection back on what could have been. At times, it hurts to look back.

I really did not like this realization. Obviously I cannot change my emotions while reflecting on the past. I really needed to take inventory on how I felt in the present. I do feel proud. Our Madelynn views life the way I wish I could. Every morning when she gets up, there’s a smile on her face. Every time when Nicole gets home from work, Maddie lets out a squeal like she hasn’t seen her mom in ages. Madelynn is excited for every single aspect of her life, no matter how mundane the task is.

I’m proud of all of the progress Maddie has made. Since her diagnosis Maddie has learned how to army crawl. Maddie is holding her own water cup. She’s making strides in holding her own bottle. She’s feeding herself with her hands and is hit or miss with her fork. Maddie is progressing further and faster than I could have imagined at the time of her diagnosis. She gets frustrated when she can’t grasp something, but the next day she’s right back at it.

To be honest I try to be more and more like Maddie in my daily life. My daughter has become my role model in some ways. I try to attack each day with the excitement and zeal that my daughter has. I try to take in the moment with my loved ones because each day is special and each moment with them is special. I try to see the world through Maddie’s eyes because her unique perspective highlights the important parts and disregards the aspects that really don’t matter.

I’m trying to become more like my daughter. So what if the future is different from what I envisioned. What matters is that our family is healthy. Each and every moment that we spend with each other is a blessing. Sure there are bad days, but even the bad days aren’t so bad. We’re lucky to experience it all together.

-Written by Adam Birchmeier