Day Four
Four days ago my phone rang. The caller was Spectrum Health, the phone call would change my family forever. “We got your daughter’s genetic testing back, and we have an answer.” I heard the woman say. “Your daughter unfortunately has Angelman Syndrome. I’m so sorry.” The only sound I heard after that was the crying of my wife. A numbness that I hadn’t experienced in a long time coursed through my body. I sat there listening to my wife cry but I couldn’t reach out to her. She was five miles away at work and I was driving through a dilapidated part of town.
The numbness hasn’t left. I haven’t cried. A few tears have escaped but the numbness is still there. My wife and I reunited shortly after the phone call and I drove her home. Over the past four days we have read countless articles. Two families with children of their own that have been affected by Angelman Syndrome have reached out to us. We’ve signed up to receive newsletters. We’ve done all the things you can possibly do within four days. It’s four days down, a lifetime to go.
This isn’t the path we expected to go down when Maddie came kicking and screaming into this world. That’s how our Madelynn seems to like things. We didn’t expect a pandemic to hit right in the middle of our pregnancy. We didn’t expect Covid to hit our household. We didn’t expect that we would have to take our daughter to countless specialists and spend hours upon hours at therapy sessions. We didn’t expect Maddie to be diagnosed with Angelman Syndrome exactly 18 months after she was born.
These past four days have been strange. I’ve mourned a life that never was, a life that was only in my dreams. I mourn the conversations that I will never have with her. I mourn the fact that I will never walk her down the aisle. Perhaps most simple of all, I mourn the fact I might never hear her say daddy.
This could seem bleak, but I’ve been holding onto the fact that this will open my eyes to a new world. Maddie will teach me things that I didn’t know I needed to learn. I know that I will connect with people that I would have never met if it wasn’t for her. I know that this syndrome will take us across the country in search of the best treatment for her.
I came home today and kissed my wife. The dog was acting like she hadn’t seen me in days. Maddie was in the middle of the living room playing with a toy. She looked at me and had a huge smile on her face. This is enough for now, it will get me through day four.
-Written by Adam Birchmeier
