Back to the Beginning
A Reminder: February 15th is Angelman Syndrome Awareness Day. On this day, we wear blue in recognition of those individuals and families that have been affected by Angelman Syndrome. I never thought I was the type of person who took comfort in symbolic gestures until we had our Maddie. Seeing my friends, family, and coworkers wearing blue reminded me that Nicole and I weren’t alone in the fight. We definitely aren’t out of the fight either. Please join us in wearing blue to help raise awareness and show our support to those families. Wear blue to honor Maddie and her legacy.
It has been a whirlwind past few months in our household. We welcomed our second born, Jackson, on December 9th. It has been fun to cuddle up with him and tell him all about his big sister Maddie. Having him at home has brought back memories of when Maddie was a baby. Remembering these stories is a double edged sword. These stories can bring a smile to our faces, but they also cut deep. We are reminded of what we have lost.
A well of emotions has been brought up to the surface these past couple of weeks. It started with a phone call from Maddie’s funeral director, Chris. He called me out of the blue and informed me that Maddie’s casket will be used for another child here in the area who has passed away. When Maddie passed, Nicole and I decided that we wanted to cremate our child. We didn’t know what the future held for us. We didn’t know where our grief journey would take us. We didn’t want to bury Maddie and end up moving away, leaving her alone.
We did however want to hold a viewing and a funeral before she was cremated. So Nicole and I special ordered a casket. The funeral home that we used didn’t have any child sized caskets in stock. After Maddie was cremated, Nicole and I donated the casket back to the funeral home. We understood that the cost of a funeral can be steep and we didn’t want another family to have to bear the financial burden along with their grief. We asked that the casket be donated to a family in need, if the time ever arose. Unfortunately, that time happened a couple of weeks ago.
Another piece of bad news arrived shortly after the funeral director called. A special needs family that we had met in Austin shared the news that their child was going to be placed in hospice care. This child doesn’t have Angelman Syndrome but does have Rhett Syndrome. Our heart breaks for the family and this child. We have been praying daily for them.
These two events have weighed on my heart. I know exactly what these parents are going through. It placed me back to when Maddie passed away. I feel the pain, I feel the hopelessness, I feel the grief. I know their lives will never be the same. Even though their journey might be different, it is also the same. Losing a child changes you, the grief can consume you. It is an unimaginable pain.
I am trying to shake this feeling I’ve had these past few days. It is part of the grief journey. I understand and I empathize with these families. Please keep them in your thoughts and prayers.
-Written by Adam Birchmeier
