Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.
I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.
I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.
My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.
I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.
In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.
I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.
I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.
When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”
I stared at the monitor and thought that “never” was not nearly long enough.
Also published on Medium.
Tears again as I read this… your son sounds so precious and I love your heart for him. Our son is at a different stage than yours ( we got our first clear EEG!) but the future still concerns me and we have reached the end of looking for a cause. There are mixed emotions in all of that. I hesitate to celebrate fully and am hopeful this is lasting good news. Trying to love every day with him. So sorry your sweet boy is going through this!! Praying for your family!
Congrats on the EEG! I’m sure you know better than most how to appreciate any piece of good news, even amid the uncertainty. Celebrating it isn’t going to make it go away, so don’t miss out on letting it in. You and your family have been through a lot, and it’s ok to feel good about a win…any win…and to be hopeful for more down the road.
I’m sorry that any of us have to go through this, but I’m grateful to find other people that are going through it, too. The feeling of not being alone is a little bit of light in the dark.
~Dave
I totally understand your feelings of wanting to keep him the age he is. We have come to the world of Epilepsy late. Our son had his first Tonic Clonic in the summer age 14. Thankfully we are making progress with medication, although the process is painfully slow and he still has focal seizures most days. Even at his age though i am trying to tell myself that he has the rest of his life if we can get this under control. I was also diagnosed with epilepsy at 6 months old. I had absences and tonic clonics throughout my childhood and had my last seizure in my mid twenties with nothing at all since then. I’m mid forties now. I still take medication. I know it can be controlled and i am hanging onto that fact . I hope it all works out for your son as it did for me.
I love the sentiment of “he has the rest of his life if we can get this under control”. The future looks much brighter for those with epilepsy than the past when it comes to advances in medicine and technology. I hope that it works out for both of our sons, and thank you for your inspiration and kind words. ~Dave
I sit tearful after reading so much on your site. Zak is 17, and been having Grand Mals for almost 2 years. He has CP from birth, affecting mostly his legs. Zak got his license to drive almost 2 years ago, but has only driven about 4 weeks total. My heart hurts so bad for him everyday. He is oldest of our 8 kids. God blesses us everyday by just keeping him safe and being with great people, if not with us, when he has a seizure. Just had one this morning which made him miss our Easter service, where he is the media guy. It hurts him the most to miss church…it is his life, and I’m proud of it! I’m babbling now, but I need to keep watching your site I know…a great place to share thoughts, fears and celebrations I can see! God bless you! Adam
Thank you so much for reaching out, Adam. I feel the same way, but still try to be grateful for what we do have and hopeful for the future. I appreciate the comment and my best wishes for you and your son! ~Dave