When I started this blog almost 5 years ago, we were only just beginning our epilepsy journey.
The first few posts were written from his room on the neurology floor of the children’s hospital as I watched the doctors tried to stop his seizures. I wrote as a way to process my thoughts and feelings as I worried about losing my son and learned about words like status epilepticus and refractory.
After we left the hospital, I wrote about how our life changed. I shared stories of how we tried to rebuild my son after those initial waves of seizures took so much from him. I wrote about his therapies and how the exploration and experimentation with different medication led to the same frustrating results or unbearable side effects. I wrote about my fears about VNS surgery and my frustration with the hardship of the ketogenic diet.
For the past year, very little has changed. In spite of having a VNS implanted, adjusting his medication, and continuing the ketogenic diet, my son is still seizing almost every day. I still worry about the risk of SUDEP. I still worry about the long term effects of these seizures as I watch him slowly fall behind his peers at school.
When I would sit down to write, it started to feel like I was always wanting to write the same things and that I had already put my thoughts and feelings down. I wasn’t sure what was left to say, so I didn’t write anything.
Not writing had the additional benefit of not having to look beyond the surface of our lives. I could stop probing how I felt about the challenges my son faced and what it meant for his future. I could just live in the present and deal only with what was in front of me. But that began to feel like I was shirking my responsibility as a father and doing a disservice to myself and to my son.
During the time I stopped writing, I also received a number of messages from the epilepsy community. They reminded me that that others were going through the same challenges. I started this blog for myself but it brought me into a community of people who had already been where I was as well as people who were just starting on this path. The unexpected benefit of putting ourselves out there was that is reminded us that we weren’t alone. When things were dark and scary and uncertain, that gift provided immeasurable comfort.
I was worried that because nothing has changed that I wouldn’t have anything to write about, but that is part of this journey. The ups, downs, and the long stretches in between filled with uncertainty, frustration, accomplishments, and joy are all part of life. They are the things that remind us why we are here and bring us closer together. They are our outstretched hands reaching in to the darkness that are met by the hands of others grasping for connection.
As the new year began, I have started waking up early again. I make my coffee and sit on the couch in a quiet house staring at a blank page. I think about our life, past, present, and future. I think about the people we’ve met along the way, and I start filling the page with words.
It turns out, I might have more to say after all.
The story with your son reminds me so much of what we’re going through with our daughter. We’ve weighed the benefit of a vns because she has failed more than 12 AEDs and the ketogenic diet isn’t working. Struggling to find answers all while trying to maintain a “normal” life for her has become, at times, just all too much. Thank you for your honesty, you’re definitely not alone.
Thank you for the comment, Allison. I really struggled with the VNS…the next post is about that topic, a year after the surgery. It’s a long series of impossible choices trying to find the thing that will help make things “normal” in an impossible situation. I really do feel like we aren’t alone and that really does help. ~Dave
What I have learned in this very long 20+ year journey with our daughter is that even though it seems like nothing is changing, things are, indeed, changing. Your son is growing and maturing in ways you can’t begin to see or acknowledge now. I look back on some of those writings from so long ago, times that were so deep, dark and scary, times when even the specialists were so very concerned about her and realize how far she, and we, have come…as parents, as a family. Times were hard, so very scary. What you have to offer, even though you feel like a broken record at times, is a hand held out to others….someone to be leaned on. I was part of one of the very first health and disease message boards. All us epilepsy/neuro parents had kids with different severity of seizure disorders, developmental delay, learning differences, but we all collaborated, giving strength, support, advice to all.
Writing is necessary, even if only to show how far you have come.
Thank you for the insights, Babs. And you’re right. He’s in a different place than he was 5 years ago. I’m a different person (hopefully better in a lot of ways) because of how I’ve changed in that time, too. And I am very grateful for this community, because it contributed to that change. ~Dave
I’m glad you’ll be writing more again. I miss your voice. Yours is one of a handful of epilepsy blogs I read regularly. I really hope and pray that you’ll find the answers for your son, and that one day soon his seizures will be controlled. Don’t give up hope. The road is just longer for some than for others. Leave no stone unturned.
I too have written less lately, but for somewhat different reasons. Our daughter’s been in an intense pre-surgery process for nearly two years and things were so up in the air–and we so in limbo and so confused at times that it was hard to write because writing meant making statements as if we knew what was what when we didn’t. However, now that that is complete–she’s had 2 surgeries in the past 2 weeks, including an SEEG and a frontal lobe lesionectomy with a partial corpus callosotomy, most recently and we are starting what we hope is perhaps a new life (it’s far too early for us to declare success, though we are hopeful), I hope to also get back to writing. There is much that needs to be said about epilepsy and living with epilepsy. There’s work that needs to be done. And I would love to be a part of that work. I’m glad that you will also continue to be a part of that work. People will never understand epilepsy unless the stories get told in compelling ways that people can identify with and understand. Your blog is a part of that telling. A story that needs told. Understanding that needs communicated.
I miss your voice, too, Desiree. Our thoughts are with your daughter and your family. I hope the surgeries help and that the new life is around the corner, and I hope to read all about it. ~Dave