The Other Side of Grief

We’re back after a week off with something a little different! We’ve started a YouTube channel. This will be linked with the website in the near future. Since we do have deaf and hard of hearing people who read this blog, my notes for the video will be below. That way nobody misses out on this week’s blog, well I guess vlog technically.

So, we are trying something new this week with maddiesjoy.com, welcome to the video blog. Now Sundays will still be reserved for written blog posts, but as I mentioned in last week’s blog there’s some exciting additions, we’ll be adding to the weekly blog series.

Today I’ll be talking about the mourning period of Maddie’s Angelman Diagnosis. It truly felt like a loss. I don’t say that lightly. I can only imagine the feeling of losing a child and I hope that Maddie outlives me. I say it felt like a loss because there were hopes and dreams that will never be realized. What I’ve learned on this journey with Maddie’s diagnosis, is that it’s okay. I’m okay, she’s okay, our family is okay.

When Madelynn Joan Birchmeier entered this world, she did it on her own time. My wife and I walked into the hospital on a Monday to be induced. Maddie finally came into the world on a Wednesday. Not only did she take three days of induction to get here, but she also arrived in the beginning of the pandemic. The country shut down in March, Maddie was born in June.

When we brought Maddie home, she was colicky. The only time when she wasn’t crying was when she was being fed or sleeping. The only way we could get her to sleep was by holding her. I sure do miss those days of snuggling her, but I do not miss those cries. Eventually her symptoms subsided, a whole new set of challenges were ahead.

At five months, Maddie was seemingly hitting all her milestones. In November of 2020 she was rolling, she wouldn’t roll again until May of 2021. Maddie’s next big test came in the form of Covid. At the time, my wife and I both worked in healthcare. We were both very careful when coming home, but we knew it was a matter of time before Covid came to visit our house.

My wife’s symptoms started first. Soon after, Maddie spiked a fever. Now we’re not even a full year into the pandemic yet. I called Maddie’s pediatrician. They wanted us to go to the ER right away. Maddie was sick, but she was breathing normally. We chose to treat her with Motrin and Tylenol. The fever subsided after two days, but then came the cough. Maddie’s cough was the scariest part. It would not go away. We took Maddie into the urgent care twice, finally she was diagnosed with post Covid pneumonia.

The combination of Covid and pneumonia would weaken any adult, let alone a 5- or 6-month-old. Maddie wasn’t really herself for a few months. All she wanted to do is lay there or snuggle. She wasn’t rolling anymore. She was kicking her feet and moving her arms, but that was about it. When we took Maddie back to her pediatrician, she was 4 months behind in her milestone scoring.

So, our pediatrician decided to be proactive. At the time there were stories coming out of Southeast Asia regarding post Covid delays in infants. Most of these stories were coming out of the Philippines. We were all in uncharted waters in terms of what to do.

The only thing that we could do is send Maddie to a pediatric physiatrist. The long grueling sessions of physical therapy and occupational therapy started. Maddie was making incremental gains, but still not progressing like she should. The diagnosis of post covid delay was still at the forefront of everyone’s mind, but due to Maddie’s head size starting to lag behind, new words were being thrown around. Scary words. We started to hear about Rett Syndrome, Angelman Syndrome.

To be sure, we were referred to a geneticist. The genetic testing would take about a month to come back. In that month there was a lot of praying, a lot of worrying, and in that month was Maddie’s first set of seizures.

I came home from work one day. It was like any other day. I put Maddie on my lap while Nicole was cooking dinner. Maddie started to make a jerking motion. This by itself, wasn’t abnormal. However as I looked into Maddie’s eyes, she was there but not there. It’s such a surreal look. I made a decision, I was freaking out inside, but I had to remain calm. I calmly called for Nicole, she came out to the living room and took one look. “That’s a seizure.”

Over the course of the next 7 hours, Maddie would have six violent seizures. She was transported to Helen DeVos Children’s Hospital. I followed closely behind the ambulance, I walked through the doors of the hospital at 1 a.m. They hooked Maddie up to do an EEG. We were there for two more nights. During the day, various doctors and nurses were in and out of her room. Every time Maddie twitched, my heart sank. I remember trying to stay strong for my wife and for Maddie. I remember taking a shower in the bathroom, and just breaking down. This was my baby. This was my child. It all seemed so surreal.

We talked to the neurologist before Maddie was discharged. The neurologist talked about Rett Syndrome and Angelman Syndrome as a possibility for the cause of the seizures. We were told they would be able to tell by her brain waves, if this indeed was Angelman Syndrome. We took our Maddie home, and held our breath.

Two days later the results of her EEG were available online. We read the report. There was no mention of Angelman Syndrome, we had dodged the first bullet.

The date December 3rd 2021 will forever be seared into my brain. I’m not going to say it was a day of infamy, but our whole family dynamic changed that day. I was driving back to work. I was on my lunch break. My phone rang and the caller ID said Spectrum Health. I answered the call and a woman greeted me. She told me my wife was on the line as well.

Again I was about to be blindsided. I figured that if they were calling, it was to tell us nothing was found. I thought we dodged the second bullet, the Rett Syndrome diagnosis. I was still holding out hope that Maddie was neurotypical. Then the woman from Spectrum told us the result, Maddie had Angelman Syndrome.

This was the start of my grieving. With Angelman Syndrome, it affects the whole person. There’s speech difficulties, there’s neurological difficulties, there’s low muscle tone, there’s sleep difficulties, there’s such a wide range of daily life that this syndrome touches. I might never hear my daughter say daddy. I will never walk my daughter down the aisle. I will never see my daughter graduate from college and start a family of her own. I might never have grandchildren.

I will forever be my daughter’s caretaker. I will die one day, and I’m not sure that my daughter will be safe. I don’t know where she will go. I don’t know who will care for her.

During the first 100 days of Maddie’s diagnosis, we found the Angelman Community. Strangers that we had never met reached out to us to see if we were okay. Strangers that we had never met sent us care packages.

Our family and friends rallied around us. There were countless messages, texts, phone calls, date night packages, prayers. All for our Maddie. All for our family.

I watched my daughter grow after the diagnosis. I watched my daughter hit milestone after milestone. I’m greeted with a smile and a giggle every morning from my daughter. She’s safe, she’s happy.

I started to break down what I originally hoped for before Maddie was born. I hoped she was safe, I hoped she was happy, I hoped she was healthy. Maddie’s seizures are thankfully under control at the moment. Her seizure medication is doing wonders.

I’ve started to imagine a new life for Maddie. I’m on the other side of the grief. There are times when I get sad. When I wish she was just running around the backyard and causing trouble. But then I see her gain a new skill, and how proud I am that she’s pushing forward.

I do not know where this diagnosis will take our family. There will be hard times, there will be good times, there will be times where I won’t know where to turn. I do know that my wife and I will be there by Maddie’s side through all of it. We love our little angel, we’re just along for the ride.

Please please please stay tuned for more coming from Maddie’s Joy. Obviously my wife and I both work full time and parenting is a full time job as well. We hope to have some new avenues to connect with our family as well as others in the Angelman community and beyond. I’m excited for this new stage for the website. I could have never imagined that the website would be seen throughout the nation, not to mention in 22 different countries throughout the world. Please like the video, subscribe, share the video if you would like. There’s more coming from maddiesjoy.com. I’ll drop you a little hint, a logo might be on its way, stay tuned!