I Get To

Late in the night I saw a post that an Angelman mom shared. It was pretty simple, and yet it was profound. It was three words, written three times. “I get to. I get to. I get to.”

I was just awakened for the second time by Maddie. She had vomited yet again in her bed. Nicole had her in the bath tub and I had just thrown a second set of bedding into the wash. I could hear Maddie sobbing in the tub. This was the third time in a month and a half that Maddie had been sick.

This is the side of Angelman Syndrome that I do not like. Maddie has been bound up, leading to a fever. This fever leads to Maddie vomiting. Maddie being constipated can lead to seizures, so can a fever. I understand that all children get sick, but not all children get sick like Maddie. Not all illnesses that children get can lead down a terrible path like Maddie.

After Maddie was diagnosed with Angelman Syndrome, I often thought why me. I often thought why our family. It was hard to see the trees from the forest. I often thought about the diagnosis, and not the child that I had. Thankfully as I pulled out of my grief I was able to see the blessing I was given.

I get to see an amazing girl grow up. I get to celebrate all of the wins alongside my little girl. I get to be a part of an amazing community of parents and caregivers that are putting one foot in front of the other.

We got to sit down and have lunch with a family in our area the day after Maddie’s horrible night. It probably wasn’t the best idea. Maddie was pretty tired, and cried pretty much the whole time. It was still great to be around people who cared. It was great to be with a family, that quite honestly we might never have crossed paths with if it wasn’t for Angelman Syndrome.

That’s the great part of this path Maddie has taken us down. We get to meet families and amazing people that we probably wouldn’t have met if it wasn’t for this diagnosis. This diagnosis is helping us grow into advocates of not only Angelman Syndrome, but of all special needs communities.

We recently received a medical stroller from a local nonprofit here in Muskegon. We got the stroller as a backup plan, in case Maddie’s wheelchair isn’t approved in time for school. As I was signing some paperwork, I was talking to an older man. He was telling me about how he had a son who was special needs. His son was now in his 30s, his son is blind, and his son is about 6 months old cognitively. This man described to me that he wouldn’t change his son for the world. He said it is hard, but he has found a lot of joy and purpose in caring for his son.

This is how I feel about Maddie. I am forced to be the best version of myself. I am forced to grow, to change, to think outside of myself. I have been forced to grow in so many ways so I can be the best father and husband possible. I get to be the best version of me.

I may never know why God entrusted us with an Angelman child. It has it’s ups and downs. I know that this diagnosis has forced me to grow into the best version of myself. I get to grow and fight for my daughter. I get to celebrate her wins and I am blessed with her smiling face daily. I get to. I get to. I get to.

-Written by Adam Birchmeier