The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.
When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.
Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.
It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.
We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.
But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.
From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.
Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.
I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.
I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.
But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.
I’m on my way.
I am so incredibly moved by your ability to set your feelings down for evaluation and sharing to help others on a similar journey. Incredibly powerful and therapeutic. You three are often in my thoughts.
Thank you, Nicole, and thank you for thinking of us. We’re lucky to have our village. ~Dave
This. I feel every bit of this with my daughter. VNS has be suggested, suggested again, now pushed at us and I feel absolutely hopeless. I hope this is the miracle your son needs and I’ll watch for updates to help us on our journey.
Thank you, Allison. A few more weeks and we turn it on, then a few more months at least to figure out if it’s doing anything. The waiting is the worst part right now. But we’re still trying to be hopeful, esp. since nothing else has worked. Please reach out if I can help answer any questions directly. ~Dave
Dave my prayers for your boy and your family. I regularly read your blog and my son who is 10 soon has epilepsy. You are very inspiring and reflective of the emotional struggle we go through as parents.
My sons doctor suggests epilepsy surgery and we are scared. You expressed very good on the thoughts run in my mind as a father. Did you consider surgery to remove part of brain area that triggers seizures?
My sincere wishes and prayers for your son to get well soon.
Unfortunately, my son isn’t a surgical candidate. His seizures are generalized, so there’s no single place that the seizures are originating from that they can remove. The VNS surgery went well, though, so we’re hoping for some relief once it has time to do its thing. Thanks for reading, the kind words, and the comment. ~Dave
Hello.dave !
Just read your post and felt exactly the same when my daughter had VNS 2 weeks ago… the device hasnt been turned on yet.. but we are very hopefull its gonna help her.. how are you going with your boy..please do share..
Hi, Bijay! Thanks for commenting. Still no change for my son with the VNS that we can tell, but I suppose it’s impossible to know where we would be seizure-wise without it. But at least it doesn’t bother him, his body and vocal cords adjusted, so that’s good. I hope the surgery went well for your daughter and hopefully she’ll be one of the people who it works miracles for! ~Dave
Thank you for sharing your story. My son had his surgery last week and I have felt the same way. Although I was all for it, I remember just watching him sleep in his most peaceful state wondering if we were making a mistake. The thought of cutting into my baby was overwhelming. I am now looking at the scars, hearing his cough after surgery and my heart is breaking. He is doing well and it’s like nothing happened but I pray this works. Hope all is going well with your baby.
I hope he is doing well! The surgery helps so many people and I hope you find that it helps him! Please reach out if you have any questions! ~Dave