One Day at a Time
If you’ve ever flown in a plane before, you might remember some of the safety instructions. One specific instruction sticks in my mind. If the cabin loses pressure, you’re supposed to put on your oxygen mask first, before helping anyone else. The reason for this, is because you cannot help anyone else, if you’re not okay. I have to remind myself of this constantly.
When Maddie was diagnosed and even her previous health issues, my mindset was that I had to be strong for my family. Sure, emotionally I was a wreck, but I could compartmentalize my feelings and put them in a box. I felt like I had to rush to my daughter’s side and be there for my wife before I could tend to my needs. I thought this method would work. I was wrong.
The first time I remember not being able to contain my emotions was when our daughter was rushed to Helen DeVos Children’s Hospital. Nicole, my wife, rode with Maddie in the back of the ambulance from Muskegon to Grand Rapids. I followed shortly behind in our vehicle. Madelynn had six violent seizures in front of us that day. Each time she had a seizure, my body tensed up. I wanted to take away any pain or confusion away from my daughter. I was so desperate to stop whatever was going on with her, but I couldn’t do anything.
I walked into the children’s hospital at 1 am. When I got into the room, Maddie was sleeping. My wife was laying on a pull out couch. I laid down next to my wife, but I couldn’t sleep. Five minutes later an EEG Tech walked in. I told my wife to try to get some sleep. I spent 45 minutes talking to this tech while she carefully hooked Maddie up to the machine. I was on autopilot at this point, but all I could do to help was to tell her everything I witnessed.
This set of seizures happened about a month before Maddie’s Angelman diagnosis. First thing the next morning, the room was full of doctors and nurses. If I had to guess, there was about 15 to 20 individuals in the room. Some were observing Maddie. Some were talking to my wife. Some were talking to me. I overheard a doctor tell my wife that Maddie had another seizure in her sleep. My eyes welled up with tears. As the group shuffled out of the room. I hustled to the bathroom. I knew I couldn’t contain my emotions. Before I could even shut the door, I was bent over the sink sobbing. I felt the embrace of my wife behind me.
I noticed that she was crying too. I had to keep it together. I took some deep breaths and I was able to stop my emotions from pouring out. I held my wife in that bathroom as she broke down. I had to be strong. I had to be the tough one for my family.
A month after that stay in the hospital, we got the confirmation that Maddie had Angelman Syndrome. I was on my lunch break, Nicole was at work. The geneticist office told us of this diagnosis over the phone. As I heard my wife sob, I knew I had to get to her. I had to make sure she was okay. Again, I could stuff down what I was feeling, in order to be there for my wife. I picked her up from work and we headed home to be together.
All that I wanted to know was what the next steps were. I had to have a direction. I had to keep my family on track. After Maddie’s seizures, the only thing I knew that I could do was to give Maddie her medicine twice a day. I took it upon myself to make sure she got her Keppra like clockwork. It wasn’t much, but it was what I could do. It was all I could do to keep the seizures at bay.
Over the next two months, everything seemed like a hurry up and wait situation. Maddie was already in therapy and she was set up with her specialists. There were so many things that I had to learn about this diagnosis. A lot of people describe it as drinking out of a fire hose. There’s so much information to cover with a diagnosis like Angelman Syndrome.
It was in this time frame that I started to fall apart. I didn’t know that I was falling apart, but all the tell tale signs were there. I started to be extremely short with my wife and my coworkers. My typical empathy and patience were just about whittled down to zero. I started drinking periodically throughout the week. Typically I enjoy having a couple of drinks on the weekends, but this started bleeding in throughout the week as well.
The biggest thing that I experienced were panic attacks. At the time I had no idea what they were. They would come on suddenly. I would have a hard time focusing. It felt like I wanted to crawl out of my skin. I started to break out into cold sweats. I would have to step away from my work cubicle and splash some water onto my face to try and reset. My breathing became more rapid. At times my chest would start to hurt. All the classic signs of a panic attack.
It was after about a month of panic attacks, that I decided to finally be proactive about my mental health. I talked to my doctor and she prescribed an emergency medication to take when my panic attacks start. I also decided to see a therapist. A life altering diagnosis is a major event in anyone’s life. I needed to speak with a professional to sort out my feelings.
It’s okay to not be okay. What’s not okay, is seeing a problem and ignoring it. I am still that strong person that I wanted to be for my family. Whatever you are going through in your life, take a mental inventory. It’s okay to seek help. I realize now, that in order to help my family, I have to help myself. Is everything perfect now? Well of course not. I do have the tools to handle the emotions now. I’m more present in the day to day.
There are major life questions in regards to my daughter that have not been solved yet. On the medical side of this diagnosis, we’re on a great path. One thing that keeps me up at night, is who will take care of Maddie when we’re gone. It’s the elephant in the room in my mind. However, now I know how to eat an elephant, one bite at a time.
- Written by Adam Birchmeier
