By Whitney Voigt, Connor’s Mom
Connor the Warrior
I had always heard that children can teach their parents so much, and while I just assumed that it was true, I could have never imagined to experience that within my first days as a mother. Connor was born with complex medical issues and as new parents we were thrust into a world of medical jargon and special needs resources on Day 1. It was completely overwhelming and somewhat heartbreaking at the loss of “normal” start to parenthood, but this sweet baby boy needed our support and I was not going to let him down.
Over the 7.5 months we had him on this earth, it was my mission to make his life as joyful as possible. We did not let oxygen monitors or feeding tubes hold us back from attending community events, talking walks in the park and going on vacation. We were a new family and those experiences were important to me – regardless of any medical complications.
We took life one day at a time, not ever dwelling on the fact that we knew his life could be shortened due to his diagnosis with Walker-Warburg syndrome. Maybe it’s because I didn’t want to accept that as a reality, but I believe focusing on the present helped bond our mother-son relationship. We had our daily routine of feedings, therapies and snuggles which I believe helped him to thrive before the disease took over his sweet body.
Although I very much understood his diagnosis, nothing could have prepared me for the day he passed away. It was like someone ripped my heart out of my chest and all I could do was scream as doctors and nurses worked as hard as they could to revive him in that ER. It was an hour of pure hell because there was nothing I could do to help my child that I worked so hard to keep safe and happy. When they announced his death, my husband and I sat in a tiny room and held him for hours as we could not bear the thought of walking away from him. Saying those goodbyes was nearly breathtaking.
Anger and sadness consumed me in the first week after we lost him. I put every baby item out of my sight and closed the door to his nursery because I couldn’t imagine standing in it without him. My heart was in 10 million pieces and no one could say anything that would make me feel better. I just wanted him back.
However, as I started my healing process in the month or so after his passing, I shifted my mindset from loss to gratitude. Connor taught me the power of being an advocate for my children and to never take anything for granted. I am a stronger person and mother today because of what that little boy brought to my life. And for that I am grateful.