A Year of Missing You - Part 2

This year has been nothing short of an emotional mess. I realized early on that I would never be the same person again. That isn’t a woe is me statement, it’s just the truth. I could either wallow in that realization, or I could move forward and embrace the road ahead.

The days following Maddie’s death were a blur. I’m thankful that I had my faith to rely on. I drew on the realization that I would one day see my daughter again. I also knew that I would never know the answer as to why my daughter passed away. I could pray about it, I could complain, but I would never know the answer on this earth. Once I leave this earth and I’m reunited with my daughter in heaven, the question of why won’t matter anymore.

After the funeral, Nicole and I flew out to Arizona for a few days. This was one of the best early decisions that we made. We got out of our comfort zone and our everyday surroundings. Being alone with my wife, gave us the opportunity to grieve together. We communicated in a way that probably wouldn’t be possible on our couch at home.

Communication has been the key to this past year. When Maddie was diagnosed with Angelman Syndrome, we forced ourselves to communicate better. With the realization that 80 plus percent of parents with a special needs child end up divorcing, we didn’t want this to be us. Then to add the heaviness of the loss of our daughter, we knew we needed outside help.

Nicole found Gilda’s Club in Grand Rapids. As soon as we returned from Arizona, we began attending their weekly grief group for parents who have lost a child. This group has helped us learn more about each other. There might be a mother who is feeling a certain way, and I can ask Nicole on the drive home if she is feeling similar. The same is true when a father says something. Our 40 minute drive to the weekly meeting and the 40 minute drive on the way back is a great way for us to reconnect during our busy week.

Nicole and I do not grieve the same way. You wouldn’t expect us to. The way we express our emotions, what emotions we are feeling at a certain time, and our general mood can be polar opposite. We know enough about each other to give each other support and grace. We are both coming from the same place. We both have a hole in our hearts. We are both missing our beautiful angel.

I remember feeling very uncomfortable in our house. The playroom that was once filled with Maddie’s toys, was strangely empty. The nightly bath time, medicine time, and bed time routine was over. I felt sad, I felt empty, I felt alone.

I found myself with a very short fuse in the beginning. I would curse out every bad driver on the road. I didn’t have the patience for anyone but my wife. I didn’t feel at home in my own house and I felt lost out in a public space. I was sad, I was angry, I was tired.

No one warned me about the immense fatigue that grief brings on. I still do not have the engergy today that I had in the past. Another strange thing is the brain fog that grief brings on. There are times when I arrive at a place and I don’t remember how I got there. There are things that I once knew that I easily forget. There are daily chores and routines that were ingrained in my day to day that I forget. The brain fog has gotten better, but it still persists.

In the beginning it was all about small goals. Getting out of bed some days was an accomplishment. I knew I couldn’t wallow in my grief. I had to some how move forward in life. This doesn’t mean moving on, it just means I am walking forward in life with my daughter’s memory still with me.

If you read last week’s post, you know how I felt in the beginning. I felt immense guilt. While attending grief group, I noticed most of the fathers in the group felt the same way. It didn’t matter how their child passed away, or at what age, there was an overwhelming sense of guilt. I remember listening to these fathers and thinking that there was no way that they could have prevented their child’s death. Then I realized that I needed to give myself as much grace as I was giving to them. I guess that’s some what of a breakthrough.

The only holiday that Nicole and I celebrated this past year was Thanksgiving. Thanksgiving is my mother in law’s big holiday. We honored Maddie’s memory during our Thanksgiving dinner. Maddie’s high chair was set up at the table with her picture, and Nicole and I lit a candle in her memory. She was at the table in spirit.

The rest of the holidays we treated as just any other day. We didn’t put up a Christmas tree, we didn’t hang any lights. We tried to treat those days just as any other day, but we knew that there was one big hole missing in our family.

In April, Nicole and I found out that we are pregnant. While this is a joyous addition, it brought with it a wave of guilt and fear. There is a certain sadness that Maddie would never meet her little sister or brother. There is guilt that we are excited for our second child. There is fear that something could happen to this child. The world isn’t the same.

This is the weird thing about grief. It morphs everything. It plays into everything we do. One of the most profound things that a mother said in our group was, “It’s okay to be okay.” Meaning that it’s okay to let yourself have a little bit of fun. Even though we might have a good day, when we get home, there is still a sadness that our child isn’t here anymore.

Nicole and I are both being proactive in our own grief journey. Ontop of attending weekly grief group, we both see a therapist seperately. This way we can express our own feelings and work through them.

I am locked into my faith more than ever. I’m by no means the perfect Catholic. There is still a lot to learn, and a long way to go. I just know that I want to see my daughter again. The only way I can get there is by becoming the best version of myself that I can become.

We continue to honor our daughter’s legacy by continuing to advocate for the Angelman Syndrome Community. At times this year, we might have pushed ourselves a little too hard in that area. We’re still trying to find a balance. The one thing we know, is that we have made lifelong friends in the community and we will not stop honoring our daughter’s legacy.

This year has been a year of ups and downs. I appreciate each and every single one of you. The love that has been shown to us has been unbelievable. Please continue to pray for us. As for my wife, this year has just reinforced what an incredible human being she is. She has been my rock throughout this grief journey. I’m lucky that she chose me.

Written by Adam Birchmeier