Living with the guilt
Every parent worries about their child. Those of us living with child-loss are walking talking balls of fear and nerves. We lost our baby, for unknown reasons. Healthy children don't die for no reason, so there must have been one, or Vail would still be here. The unknowns are sanity killers. When you don't know why your child died, how can you protect your surviving children? And the question I struggled with today is: how do I trust my intuition?
Vail was sick a week prior to her passing. She and Aspen both had a viral bug, the kind that kids get a million times a year. There is nothing any doctor can do for them; kids just ride them out. I knew that, and so that's exactly what we did. Both girls had mild fevers, coughs, and runny noses. Those symptoms lasted about 4-5 days and then they were better. Vail was better the night she died. No fever, no cough, perfectly happy and healthy. And yet, something was wrong.
No matter what the facts are, when your child dies, you find ways to blame yourself. Somehow, this happened as result of something I did or failed to do. It doesn't matter that as a rational human being I know that I didn't do anything wrong, I know that I am a good mom and I took care of my baby. None of that knowledge stops the doubts and the guilt from creeping in and eating away at me. Should I have taken her to the doctor? Maybe if I had, they would have found something. Maybe Vail would still be alive. If I had only double checked the owlet monitor to make sure it was working, it would have alerted us when she stopped breathing. If I hadn't been too busy with silly tasks, I would have turned the camera on and seen her in distress, right? What did I miss? I must have missed something? She is gone, and something happened? She didn't die for no reason, right? And so the vicious circle of questions, doubt and self blame continues.
If that wasn't enough to deal with every day then we have to worry about Aspen, our surviving child. Because if Vail can just die, suddenly with no warning, then Aspen can too. While most SUDC deaths happen to children between the ages of 1-4, there are many cases of older children passing unexpectedly as well. There are cases of 6, 10, 14 year old healthy children going to sleep and not waking up. So the fear and paranoia never end. There is never a day when we can take a breath and truly believe that Aspen is safe now. Nope, that isn't the world we live in anymore. The one in which we now dwell is the one where our world can end every single night when we do something as simple as go to sleep. And now you know why we don't sleep, or at least not well. I'd guess that Steve and I average around 5 hours a night now. You are thinking to yourself that 5 hours isn't so bad. Maybe it wouldn't be if we got it in a continuous dose. Instead, we wake up every hour or two, usually in a sweat, and have to go to check on Aspen. To make sure she is breathing. Yep, that is our life now.
On a day like today, when Aspen is sick, everything spirals out of control very quickly. Steve and I are both bundles of stress, nerves and fear, ready to explode at any moment. Aspen has a fever, a hacking cough and a stuffy nose. She is tired and hasn't eaten much the past two days. She just has a virus, we have to wait it out. Or so I keep telling myself, in a failed attempt to reassure my crazy thoughts of finding her, in her bed, not breathing, too. So, to calm my incessant thoughts and fears I took her to the doctor. We arrived and put on a face mask so she didn't cough all over the office. Our regular doctor is wonderful. I'm sure she saw our name on her patient list and knew exactly why we were there. We have seen her twice since Vail died. Once, first thing the very next morning and then again for her 4 year old check up. Aspen has had an EKG, which came back normal. She is perfectly healthy. But so was baby Vail. Or so we thought. What did I miss?
So Aspen got a flu test, which was negative, and checked for strep, also negative. Doctors orders: treat with tylenol for fever and elderberry for her immune system. Come back on Friday if she still has a fever. Yep, that's it. Completely standard response. And yet...it's not enough to even begin to satisfy the demons in my head. So we wait. For the fever to subside and the cough to heal. And in the meantime, both Steve and I will run the guilt gauntlet over and over. Praying that we all wake up in the morning. It's not the best way to live, but it's all we have now.