Day 366

So much has changed since I started writing. My very first blog post was actually just a journal entry, four days after Maddie’s diagnosis. You can look back at it here. As I sit here and write this post, we just wrapped up taking some family holiday pictures, our first in two years. I don’t even remember the holidays last year. We were just trying to get through our day to day. We were in shock, we were grieving.

Yesterday was the one year anniversary of Maddie’s diagnosis date. I have learned so much about Angelman Syndrome, yet there is so much left to learn. Thankfully we have a consistent rhythm to Maddie’s appointments. She seems to be on the right path. Tomorrow she starts a round of intensive physical therapy. This will be her first time doing an intensive therapy round, we have no idea how she’ll respond.

I find myself getting angry at times. I’m angry that this is happening to my daughter. She is such a sweet and beautiful soul, I hate that she has to go through all of these appointments each and every week. I hate that she gets poked and prodded, all to make sure that she’s safe and healthy.

I was asked the other day if I wished Maddie was neurotypical. I think this is a question that a lot of people want to ask me, but they shy away from the question. I could not imagine my life without Maddie in it. She has a personality that is uniquely hers. She has her own way of communicating with us. I do wish life was easier for her but I wouldn’t change anything about my daughter.

She has taught me so much over this past year. In many ways I look up to my daughter. She trusts Nicole and I blindly. She loves us unconditionally. She knows that whatever happens, we will be right there. I catch her from time to time staring at me when she plays in her playroom. As soon as we lock eyes, she flashes a huge smile and then goes about playing again. She teaches me each and everyday that I don’t need to know all the answers, all I need to do is show up for her.

Maddie now goes to daycare four days a week. Nicole drops Maddie off at daycare, I pick her up. The absolute best part of my day is picking up Maddie. As soon as I walk into daycare she sees me. Her face lights up and she automatically reaches for me. Maddie shows me each and everyday that she loves me unconditionally.

Over this past year we’ve traveled the country to connect with other Angelman families as well as to seek the best treatment for our daughter. We’ve flown to Austin Texas, we’ve flown to Denver Colorado. We will always fight for the best for our daughter.

We will spare no expense for our daughter. Over the past year we’ve actually hit our out of pocket maximum on two insurance plans. The first was when Nicole was in her previous position, our insurance plan started in January, and we had hit our out of pocket maximum in March. Then when Nicole got her promotion, our new insurance plan started in August and by October we hit our new out of pocket maximum.

I feel like we have more medical equipment than we know what to do with. We have a safety sleeper that is currently pending with insurance. We have to buy specialty shoes, we have to put ankle braces on Maddie everyday, we have to make sure that we follow a strict routine. We have to fight every month with insurance because one thing or another will be denied. We have to fight every month with the billing department because something will be coded wrong.

At times I want to just rip out what’s left of my hair but then I see my daughter. I see her flash a smile and laugh. When she’s not feeling well I’ll pick her up, hold her close, and rub her back. My favorite feeling in the world is when my daughter gives me a hug, and then starts to rub my back. It’s her way of telling me she loves me.

This past year has been difficult but it has also been one of the most fulfilling years of my life. There is nothing that I would change about my daughter. I wish she didn’t have to work so hard, I wish she didn’t have to go through so much. However, Maddie is the strongest person that I know. She teaches me day in and day out that the only important thing in this life is the love of our family. The rest will sort itself out.

-Written by Adam Birchmeier