Mourning Maddie
Putting my fingers to the keyboard to write a blog post has terrified me over these past few months. I’m not sure what emotions will come out. Our brains are an amazing thing. We’ve developed the ability to thirst when our bodies need water. We feel hunger, when our body needs food. We yearn when we need to be with our loved ones. What happens when we cannot be with the one we yearn for?
This has been our reality since the passing of Madelynn. I think the biggest surprise through my grief journey so far, is just how tired I am. I wake up tired. I stumble through the day, but then sleep doesn’t come easy. I thought there was no touching the fatigue of being an Angelman parent, but this is so much more intense.
Again, it all comes down to the brain. I’ve been reading a lot on how the brain performs after losing a loved one. Your brain tries to protect itself from the unbelievable pain. It actively shuts down parts of itself to shield you from the worst of it. There is actually a measurable cognitive decline when individuals go through intense grief. Many times the brain mimics signs of a severe concussion, they call it a grief concussion. Through the brain fog, you try your best to muddle through.
To all of you who have reached out, Nicole and I truly do appreciate each and every single one of you. I do have to apologize. At times I do not have the mental capacity to respond. If you could do me a favor, please continue to reach out. It’s just that some days getting out of bed is a daunting task, let alone going to work and trying to be productive. When I get home, I just cannot handle another task.
We are being proactive in our grief. Every Wednesday night we attend a grief group for parents who have lost a child. This has been immensely helpful for Nicole and I. There are times when a mother might say something, and I can store that away in my brain to see if Nicole is feeling that exact same thing. It has helped us communicate as a couple.
On top of grief group, Nicole and I are regularly attending church as well as doing weekly date nights. Nicole has been there for me when I’m at my lowest. She has cried with me, laughed with me, she has been angry with me, most of all she has loved me. Nicole has showed unbelievable grace during this difficult time, I hope I’m the rock for her like she is for me.
No matter how proactive we are, the grieving process still needs to run it’s course. There are many firsts that we are experiencing without our daughter. The holidays are a big one. For Thanksgiving, Maddie’s highchair was at the table with us. We had her picture on the tray, alongside a candle that we lit. Christmas is another story for us. We adopted two children from our church’s giving tree. One was a 15 year old female. Another was a 3 year old little girl, just like our Maddie.
We’ve tried to be as giving as possible through this process. Our family, friends, and coworkers have rallied around us. We feel so lucky and unlucky at the same time. There were definitely times when I felt like I didn’t deserve the love and support that we received. That’s why we have been so passionate in giving to others through our tragedy.
The day before Maddie had her medical emergency, we received 300 bottles of her supplemental formula. A week after we came home, we donated it to a special needs school in Muskegon. This school primarily deals with low income families, so we’re hopeful that this donation helped some families in need.
Another thing that we did was make a donation to the Angelman Syndrome Foundation. This amazing organization was so instrumental in Maddie’s life and was there for our family every step of the way. We were able to donate over $2,000 to the ASF in Maddie’s memory.
One of the hardest donations that we made, was Maddie’s wheelchair. We found an organization that helps low income families with medical equipment. Taking Maddie’s wheelchair out of the back of my car for the last time broke my heart. Wheeling her chair up to the doors, with nobody in it, was a difficult pill to swallow. Maddie should have been there. I should have seen my daughter’s smiling face looking at me.
I still have a relationship with my daughter, it has just changed. I talk to Maddie every day. I tell her I love her every day. She can no longer respond to me, but I hope my message gets to her. If you gave me the choice to do these three year all over again, knowing how it would end, I would choose Maddie every single time.
-Written by Adam Birchmeier
