365 on Love and Child Loss
Well...despite barely making out of bed every day for the past 3.5 months....here it is, the New Year. And I have committed to writing a blog post every day of 2020. Wanting time to stand still is a core function of grief. If the days don’t go by, then there is no distance placed between the dead and living. Holding on to that life as long as possible is a necessity, especially when you are grieving your child.
We had some friends over last night for New Years Eve. They brought their three kiddos and Aspen had a blast. While telling them about the project and the bracelet, I said something I felt was profound about grief. At least for me.
Grief is very complex. I know you are thinking to yourself “no shit.” When grieving we lose perspective on so many things. And the magnitude of that complexity is one of the things we lose sight of. Plus, that grief is unique to the individual. So unique it’s like your DNA. My husband and I both lost our daughter. The same child. On the same day, in the same traumatic way. Yet, our experiences of those last moments of Vail’s life and the days and weeks that followed vary greatly.
For me, my grief is evolving every day. The complex part of it is wrapped around the guilt, the feelings of failure, and the unknown. The guilt. I feel guilty for all the time I spent working from home, time I spent basically ignoring my children as they ran around the house playing. That is time I will never get back. I feel guilt for not recognizing Vail as a miracle each and every day. When Aspen was born, we took pictures every day, we were so grateful every moment. When Vail was born we were no less grateful or awestruck by her, but in the way of the second child, we got busy with parenting and we didn’t stop every day to acknowledge what a blessing she was. I feel guilty that I was making special snacks for Aspens preschool class while my baby was dying in her bed 15 feet away. Unlike so many of my friends, I had all of the protection devices in place, but I didn’t check them that night. I made the fun snacks with the googley eyes, instead of turning on the camera to check on Vail. I glued on butterfly antenna instead of checking the owlet vitals monitor to make sure Vail hasn’t messed with it. It never went off, it never alerted us. Because it wasn’t on right. And I didn’t check it. Because I was busy making fucking snacks. So yeah, I feel guilty. I feel like I failed her. Both Steve and I feel that way...for different reasons. It’s not my place to share his feelings here, but for me, I know I failed. My only job, my only real job was to protect my children and keep them safe, happy and alive. And I failed. I think that this feeling of failure mostly comes from the fact that her death has no known cause. If Vail had cancer and we had done everything we could and she still hasn’t survived, this feeling of failure might not be so intense. That loss had a cause..a shitty one that no parent should have to endure, but there is something to point the blame to. With SUDC, there is no evil culprit to pin my pain on. She was perfectly healthy and happy. And then she was dead. An hour later. Maybe, someday, if there can be enough research and we find a cause, that feeling of failure will release me. The unknown is the worst part of the grief. Because it is truly a life sentence. We, who have lost our children this way, have to put our surviving children to bed every night and hope they don’t die too. Which leads me to faith. How do you have faith through this loss? We have to believe in heaven, because that is the only way we will ever hold our baby again. But how do you believe in a god who would take our child? I’m not saying this so people can respond with their arguments about faith and belief. Just add it to the list of reasons child loss grief is so complex. I’m sure there are many posts coming this year in which I will focus on faith and loss.
Steve said that every night he goes to bed and tells himself it will be just a little easier tomorrow. The pain will be just a little less. And then he wakes up and it isn‘t easier and the pain isn’t a little less. Accepting that is so hard. I read others posts on the SUDC family support group, the ones posted by those who are much further down the road in the grief than I am. And what I find the most simultaneously horrifying and comforting is the fact that these mothers and fathers who have put 2 or 3 or 15 years between them and their loss...these parents still feel exactly the same way that I do right now. I’m terrified of feeling this pain and her absence in this way every day for the rest of my life. But, I know that I will. And I’m grateful for it because it helps me remember that she was real and her memory is all I have left. What will change over time is how I manage it. Let me repeat that for those of you who have never experienced the loss of your child. The pain of her loss and the void that her absence has left will never dissipate. So please don’t wait for me to go back to the person I was before. She no longer exists. I have apologized a few times to Steve for this. I told him he deserves a wife who doesn’t have a permanent hole in her heart. Then he reminded me that he has the same, Vail shaped hole in his heart as well.
We walk into the new year with no expectations of what life will give us or take away. Just an awareness and respect for how small we are and how little control we have. We hope to be able to find small moments of joy this year and be good parents to our living child. I don’t think we can ask for or promise more than that.