Nightly Prayer

My prayers these days seem to take the same path. There are several families that I am praying for at the moment. Then my prayer starts to get repetitive. I pray that Maddie remains seizure free, I pray for my wife, and then I pray that I am a good enough husband and father.

Thankfully I found my faith again after a brief hiatus. I was raised in the Catholic faith. I attended Catholic school from preschool through 8th grade. My life was going just as expected and then I experienced a loss of a close friend at 17. It shook me to my core. I stopped attending church. I stopped praying. I started to float through life without direction or a moral compass. Thankfully I found Nicole.

When we moved from Ludington to Muskegon, we made a decision to find a church. We weren’t set on a faith. We visited a few different churches but found our home at St Patrick and St Anthony’s in Grand Haven. Nicole decided to be baptized which included taking weekly classes. I started to attend these weekly sessions with her. To make a long story short, I found my faith again.

Nicole was baptized at that church. We were married at that church. Maddie was baptized at that church. Our family was born again at that church. Little did I know that God guided us to that church to face the trials that we now face.

I don’t think I’m a bad father at all. I’m just worried that I’m not good enough. With a neurotypical child, it’s easier to know if you’re on the right path. There’s a road map of sorts. If you’re a parent of a little one, you know the roadmap that I’m talking about. Before each well child visit, you fill out a questionnaire. They ask about certain developmental milestones. They ask if your child is rolling, if your child is sitting up, they ask if your child is babbling. With Maddie, they don’t even ask anymore.

We have detailed the challenges that Maddie is facing. I’ve set goals for Maddie. I would like her to walk and I would like her to say five words. It’s a worry of mine that these goals are not enough. I’m worried that I have sold my daughter short. I’m also worried that she will not reach these goals.

This road we are venturing down is a complicated road. There are weeks where Maddie develops two or three skills. Then there are periods of times where she doesn’t seem to develop at all. I start to question if I’m the right man to guide her down this path. Am I doing enough? Am I pushing her hard enough or am I pushing her too hard?

We took a webinar for newly diagnosed parents. One thing that the moderators stressed, was giving yourself grace. That you’re not going to be the perfect parent. I try to remind myself of this everyday. I try to tell myself that it’s okay if things aren’t going perfectly, or as fast as I want them to.

Maddie’s treatment plan can be difficult to grasp. There is no rhythm to her appointments. There are periods when we are extremely busy. These weeks consist of multiple specialist appointments on top of her two therapy sessions a week. Even though these weeks are physically and mentally taxing for all involved, it feels like we’re getting something done. Then there are the periods of lulls.

We’re in this pattern right now. We have a referral to an Angelman Syndrome Clinic in North Carolina. We’ve been waiting for two months. This clinic specializes in early childhood development. I can feel the seconds ticking away. It feels like sand going through my fingers. I’m nervous that we won’t get there in time. I also know that this is probably an irrational fear. It’s still a fear all the same.

I’m trying to stick to the script. I am by no means an expert in child care or in Angelman Syndrome. Truth be told, I had never changed a diaper until Maddie was born. I’m trying to be the father that Maddie needs. I cannot help myself from turning towards the future and trying to predict what that future will be like.

I know that Maddie will grow up. Right now, even though she’s almost two, she is still a baby in my eyes. She plays on the ground. This past week she just started to army crawl. Mostly, she just rolls to where she’s going. At some point, she’s going to be 8, she’s going to be 12, she’s going to be 22. What will that look like?

There will come a day when I am no longer here. I know that sounds morbid, but death comes for all of us at some point. I’m fearful of leaving my daughter. Will she understand why I’m no longer around? Will I have set her up to have the best life possible after I’m gone? Will she be safe?

Recently we had a visit with Helen DeVos Neurodevelopmental. The doctor sat with us and talked for over an hour. He talked about the pillars to a good life for Maddie. He brought up how most importantly she needs to be happy. He told us she needed to be a part of the community, she needed to have purpose, and she needed to contribute to society in her own way. I’ve reflected on these very important pillars.

I know that my little girl is very happy. I know that she has a great community around her and that she will be present wherever we go. She will be visible, and she will let her smile brighten up any room that she enters. I’m sure that her purpose in life is going to be educating people who have never been exposed to this syndrome. I know she will contribute in her own way.

I live for my family. To be honest I really never had a clue what I wanted to be when I grew up. The only dream I really had was to work in professional sports and to have a family. Let’s be honest about my first dream, I was too uncoordinated to even come close to becoming a professional athlete. It was the dream of a child. Nicole and Maddie are more than I could ever dream of.

As I lay down tonight, I’ll repeat my prayer again. I’ll pray for the families that I have been praying for. I’ll pray for my wife. I’ll pray for the strength, courage, and wisdom to be a good husband and father. I don’t know if I’m on the right path, I pray that I am.

-Written by Adam Birchmeier