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?

11 comments

  1. Dear Lisa,
    Thank you for this post. I read it several weeks ago and had to put it aside before I answered. I have also been that mom in the hospital trying so hard to do everything (anything!) to control the outcome. I have also had the illusion of control. I have never had anyone tell me that, straight up, it’s not in my hands. So hard, so freeing.
    Thank you for your words. 💗

  2. My husband was diagnosed with a braintumor just over a year ago. In the last year we have endured 3 surgeries radiation and chemo .
    I totally relate to your trying to “control” everything its where I have been..managing anticipating planning advocating 24/7 as well as working as an OR RN and running the household. Running on empty too often,
    I too wanted to believe all my ongoing efforts would prevent Jim from being taken by this disease
    God is in charge of that not me…..
    Its been quite a rollercoaster of a year..and where it not for my Episcopal family work colleagues and other friends we would both likely not be here

  3. Dear Lisa, I came to your page just to tell you that I loved my order I received. What I didn’t know was I was going to learn things about you and your family that I did not know. My daughter, too, has a very rare condition. Only 2% if embryos make it to fruition. she has had many scary and serious medical problems all her life. The latest being a stroke. I’ve always known that I have a form of PTSD over her problems. I’ve been scared to death that she would die and have done everything in my power to see that she doesn’t. But its not up to me, is it? And I was so touched by your blog installment. Because I have felt the same way. I have tried to control everything for her education through IEPs and many meetings with school officials, I have tried to control her medical condition through prayer and through the long list of physicians. But I have never really been willing to accept the fact that in Amy and all of our lives, God is truly in charge and not me, her loving Mom. I’m not there yet, but tonight I read your word and I know I’m not alone. I have felt many of your same emotions. Thank you for your blog!

  4. Lisa, I’ve been following your journey for over a decade, and when I looked at my blog feed for the first time in quite awhile, I had to check in on the family again. {Hope that doesn’t sound creepy.} Thanks for sharing what went through your heart and mind as you experienced and processed David’s near-death.
    My husband and I have one adult child who, being born a natal male, concluded in 2018 (and told us in 2019) that he was transgender. In one moment, I went from having a son to having a daughter. It has been quite a process, and it has involved wading through and examining lots of emotions.
    The heaviest thing I’m learning to carry as Kelsey’s mother is the possibility that she may die a violent death because someone may determine her life not worth living because of how she is walking through the world.
    I can’t control that, and she lives over 12 hours away from us in a large city. There has been and continues to be a lot I’ve had to release to the One who loves me, my husband, and her more than I am capable of.
    This is not the journey we ever envisioned. However, it has brought with it a greater degree of choosing to love unconditionally without the certainty I thought I possessed that enabled that loving. This has allowed me to let go in ways I was not able to before. Thanks for asking and listening.

  5. Dearest Lisa – I was so touched by your story about almost losing David….. but I was touched more by how you were strong enough to get help for your obsession of trying to save him all by yourself. I understand how you feel because I care deeply about my husband and worry about losing him to death, how will I be able to handle it, what can I do to prevent it and in the meantime worrying every day instead of just loving him for all the days that I have him. No matter how we feel, God is in control of these things and if and when David goes to be with the Lord, He alone will give you the grace, mercy and ability to cope, just as He alone will help me. You are loved by so many people and the work you do is a deep expression of your love. Where there is deep love, there is deep grief. I am praying for you to entrust David to God and as painful as that will be some day, you will be able to rejoice that God entrusted you to have David in your life for all the years you will have him. I love you Lisa and all the beautiful work you share with us.

  6. Thank you for sharing. My son is an alcoholic and I keep trying to figure out what I did wrong. And how I can control the world so everyone will be okay. I
    started therapy again and it is helping. Thank you for your honesty and bravery

  7. Hi Lisa, I have been following you for quite sometimes and have several pieces of your jewelry, my most favorite being the silver rings with my four children’s names and the bracelet with the four of them as well.

    Your post spoke deeply to me as we lost our only beautiful girl, Gracie, in a car accident July 16th, 2020. She was only 20 and was getting ready to start her senior year of college to be a special education/elementary school teacher. She was simply the most beautiful person inside and out. She was robbed of her future, along with us and the students she would have loved. It’s so unfair. We’ve started a foundation, lovelikegracie.org, for Gracie to give scholarships to local seniors and to provide for special education and inclusion activities…it’s the only way we can survive. Our hearts are broken, but we get up every day for our three boys, they need us more than ever.

    I’m so thankful that David survived that scary night and you have more time with him…I speak from experience when I say don’t let the future rob you of your present.

    Sending your family all my love,

    Brandy Dimit

  8. I’ve been dealing with crippling anxiety for approximately 15 years. My anxiety came out of the blue. I was working on a job that I loved. After my first major anxiety attack I made the decision to quit the job that I did love so much. I sought out therapy. The first thing the therapist asked me was about significant things that of happened in my life. I thought I had stuffed things away far far away but she said our bodies have a way of reacting when we least expect it. Boy did it ever hit me like a ton of bricks. Both of my sons had been dealing with a variety of addictions. Thankfully they are both clean now but I am still suffering through the traumatic events that we went through for years. I’ve been in and out of therapy but nothing really seems to work. I pray someday that this will lift so I can feel the joy that I want so much.Prayers for your family. I love your honesty. I love how do you love your family so deeply. I can so relate to that but can’t seem to let the fear go and the anxiety of the what if’s.

  9. Wonderful! I wish I could get there. I don’t think I can ever relinquish control even though I know ultimately that God IS in charge. I even resist HIS plan, feeling sometimes that HE even isn’t on our son’s side. I am so glad for your progress and you are truly inspiring.

  10. I have a daughter with many emotional issues. She is now in her 30s. Letting go and knowing she has a team of people that love her and will be there for her has been a learning curve. I may not be here for her but I know she will be in good hands.
    Let go and let God.

  11. I already commented on your IG post so I won’t write the whole novel again here😜
    When we lost our 28 year old son suddenly I was in shock for so many reasons but especially because I didn’t get to say goodbye – or see him one last time. Gods grace stepped in and carried me – but trust me it sucked. I can’t imagine living years of “is this the time we lose him”💔 like you have. We had 7 hard years after his motorcycle accident and it really did create a PTSD of sorts in me too.
    I heard a phrase early in the grief process that has stuck with me…..
    God does not call out of us what he has not already placed in us.
    Just like he’s prepared us for the hard in marriage, mothering etc he’s prepared us for all things he has woven into the tapestry of our story!
    I pray for you each time I see you on IG!♥️🙏🏼

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