Everyone has special dates that stick out in their minds. For me of course those dates include birthdays and anniversaries but a new date was added to my “special dates” and that is February 10th. Feb 10, 2019 was the date of Oscar’s last seizure. I remember everything about that day.
February 10, 2019 was also the date of Olivia’s 4th birthday party. We had been in the hospital with Oscar due to seizures and I was worried that I was going to miss her party. I would have been devastated! (At that time especially, the focus was on Oscar and very little was about Olivia. I desperately wanted to make this day special for her). Fortunately, we had arrived home just in time.
We had booked a small petting zoo to come to our house. All of the kids were sitting in a circle on the basement floor fixated on the animals. I was standing next to my sister who was holding Oscar… then he had a seizure. My sister looked at me. The room was filled with other parents and children. I started timing the seizure and indicated to my sister that we should step out of the room. We quietly went upstairs until it was over and then rejoined the party. That was his last seizure.
It has been 2 years since then and there is so much to celebrate. I have mentioned in previous posts that his diagnosis of Polymicrogyria often results in uncontrolled seizures. This means that even with medication there often isn’t seizure control and many children have multiple, long seizures every day. We have been fortunate so far.
With the celebration there is also trepidation. I am always on guard waiting to see if and when the other shoe will drop. My confidence in my ability to celebrate these milestones is slowly improving as I get more experience under my belt. But I still have the fear of hope. It is hard not to be fearful of hope, especially when you have experienced the pain of having your world fall out from underneath you.
Maybe without the “high” that hope provides, the fall won’t hurt as much?
When we were discharged from the hospital on February 8th 2019, Oscar was still seizing about every 2 hours. I couldn’t understand why we were being discharged if he wasn’t “better”. And that is when we learned that he may not get “better” and that this could be him. They said that there was nothing more they could do and that we just needed to take him home and continue to love him.
Nobody would or could tell us definitively that the new medication would effectively provide seizure control. Nobody gave us hope. Nobody could tell us “things will be fine” (still no one will tell us that everything will be fine). And for many people, things aren’t fine and for some, things are far from fine. Things aren’t fine for me either. But I know that we are so incredibly fortunate to celebrate this milestone, because many won’t. Today I want to celebrate my son. I want to celebrate all of the things he has accomplished in the absence of hope from the medical community. (Although they can’t provide us with hope, we are so lucky that Oscar has the BEST care team). Keep it going buddy!