The Night We Almost Lost David

Can we talk more about anxiety? How real it is? How exhausting it is?! How eventually I found myself living a shadow of life instead of really enjoying life?

In March 2020 {right at the start of covid}. David {our son who was born with a rare syndrome} had spinal fusion surgery at UCLA. We’d been preparing for months for the surgery, and we were nervous, but we knew it was necessary. The surgery went well, and he came out of anesthesia fine—but later that night things took a dark turn. I had been up for 24 hours, and I’d taken a sleeping pill. I was sleeping next to David in his hospital room when his O2 seemed to start dropping {his breathing was shallow, and he wasn’t getting enough oxygen}. The nurse woke me up and we looked at David together. We sat him up in bed and his numbers popped back up—so we thought he was fine. I went back to sleep. About 20 minutes later the nurse woke me up again. David’s O2 levels were getting too low. She wanted to put him on oxygen. I tried to discourage her saying he needed rest and he gets agitated when he’s on oxygen. He looked fine to me, and I wanted to give him a little more time. She switched out the O2 monitor, waited a few minutes, and determined he had to have oxygen.

I was so tired. All I wanted to do was sleep. Over the next hour, even on oxygen David’s O2 levels continued to drop. The brought in the crash cart just to be prepared. Then all of a sudden things started happening fast. The hospital staff asked me to leave the room and from the hallway I heard them call a ‘code blue’. All available doctors and nurses ran into David’s room to help intubate and stabilize him. I was standing in the hallway feeling numb. Was tonight the night we would lose David? Finally, they let me back into the room. David was stable. He was intubated and getting enough oxygen with the help of a machine. I tried to catch my breath. I tried to process what had just happened. The whole thing felt surreal.

This situation was different than so many emergencies in the past. Before, I had been the one to identify the problem and advocate for David. I had been the one making sure he was getting the help he needed. This time I was actively working against the nurse—discouraging her from putting him on oxygen. And then the thought hit me like a ton of bricks—I didn’t save David AND HE WAS STILL OKAY. God provided someone else. This incredible nurse followed protocol and didn’t listen to me. She did all the right things and she saved David’s life. Maybe, just maybe the whole world didn’t rest on my shoulders?

David’s near-death experience after his spinal fusion also showed me something else. While I was standing in the hallway outside his hospital room when the called the code blue, I felt how BIG David’s life is and how uncontrollable his death would be. Did I think that I would be able to stop death? I could feel how small I was in comparison to the God of Universe. And to my surprise it felt comforting. I didn’t want to be responsible for David’s life or death. Yes, I wanted to be his mom, love him, advocate for him, but I didn’t want to carry the weight of the world any more.

It took David over a week to get strong enough to come home after his spinal surgery and code blue. Once we were home, he started to recover more quickly. We were just beginning lockdown with the pandemic. Every day I was so grateful we were all together. All I wanted was for the four of us to be home together after that scary experience. There were so many hard things about the pandemic {and I know so many are still experiencing hard things} but I was incredibly grateful for those first weeks of lockdown when we got to be home as a family TOGETHER.

Although I had done therapy before I decided to reach out to a new therapist. I wanted to focus specifically on my anxiety around David’s death. I wanted to learn how to let go of all the weight I was carrying. I wanted to live with less stress and anxiety. I wanted to stop trying to be the person in charge of things way to be for me to handle. I wanted to let go–but how?

My therapy experience has been fascinating and healing. I thought I would sob and cry from deep deep grief in my sessions but what quickly came up was a lot of anger and rage. I had no idea I felt so much anger. We talked about David’s death and I wanted my therapist to comfort me and tell me not to worry–but she didn’t. She acknowledged the reality of David’s death–that his life will likely be shorter {most people with CdLS don’t live beyond their 40s}. It was hard to look at these truths head on. I wanted to make them go away. I wanted to change the situation. I had been trying for decades to somehow make these truths go away–that was why I was trying to control everything. I found looking at these truths, facing them head on and feeling the anger and grief around them was a huge part of letting go of control. It was painful and it was wonderful to work through those heavy emotions and feel them leave my body.

I feel lighter. I feel freer. I still see my therapist and I still have work to do. One thing I’m practicing every day is letting go of trying to control all the things. I trust David’s caregivers to take care of him and I try not to worry about little details. I am curious about my own emotions and I don’t try to make them disappear. I try not to worry about what other people are feeling. I can manage my feelings and they can manage their feelings. It’s not my job to manage someone else’s emotions. I try to rest more, play more, laugh more, be in the moment more. When fear comes up, I feel it. I feel it as much as I can. And usually I am able to move through it.

And I know that one day we will lose David. My anxiety was not irrational—the fear of losing David is real and valid. But I’m learning to accept that I can’t control it. When it happens, I don’t know how I’ll feel and what my grief process will be—but for now DAVID IS HERE and we get to enjoy him. I can feel my feelings in real time. I can focus on the feeling I am feeling right now and now worry about what I might feel someday when something happens that I can’t control.

Friends, I would love to hear some of your story. Please share! What are you facing. How are you managing your anxiety?