There's nothing quite like packing for a beach trip with the kids to make me long for simpler days. Days when going to the beach meant throwing a bikini, a toothbrush, and a sundress into a cute little bag and dashing off to lie on the sand, work on my tan, and listen to the waves; occasionally breaking routine by reading a novel or going out dancing.
However, despite having to literally pack everything including the potty seat; I was looking forward to our trip to the beach last week. A change of scenery, time with family, and a chance to break a bit with reality -- namely work, chores, and therapy appointments five times a week. I even imagined that I would be able to mentally relax, simply enjoy the kids, and take a time off from worrying so much about Simon's present and future.
And, it was nice to get away. I needed that whiff of sea air, and I think the kids did, too. It was great to see our big, boisterous family, and I did manage to get a tan. But, my fears followed me to the shore. In truth, I was forced to face some things I'd been dreading wholeheartedly.
One thing I was prepared for. One my nephews is only a few months older than Simon, and watching Olivia play with him in a way so different from the way she interacts with Simon hurt my heart a little, dredging up unwanted "what would life be like if the stroke had never happened...?" thoughts. But, I had known this was coming -- and I was more prepared this time than I have been in the past. I let the thoughts come, and go. I checked myself when making comparisons, reminded myself to be positive. It was a little tough when the five year old cousin started asking questions about Simon's age and ability (and was in complete disbelief when I revealed that he and Simon were both 5); but, no harm meant or done. Simon is doing well, I remembered, he's okay.
Until he wasn't okay. Monday night, after a day full of parades, swimming, parties, and fireworks; Simon fell asleep in his car seat while we were stuck in traffic on the way back to the beach house. Sitting in the front passenger seat I found myself dozing off as well, until I was woken with a jolt by a horribly familiar rhythmic gurgling noise. The last time I'd heard that noise was November -- it was that strange sound that had alerted me to Simon's first seizure, the one that had lasted 2 hours and ended up with him unconscious in the PICU for days. I whipped around in my seat to see my fear confirmed -- Simon was having another seizure.
Though I was completely terrified on the inside, and I know Brian was too, we were -- to our credit (I think); completely calm outwardly. Brian pulled over and started to watch the clock (we've been told to administer Diastat if the seizure lasts more than five minutes), while I climbed into the back seat to unstrap Simon and lean him over so he wouldn't aspirate if he vomited (which he did). I looked into Simon's wide-open, vacant eyes and spoke softly to him, and to Olivia (who was freaking out). I told them what I didn't really believe -- that everything was alright. Then, just as we were getting ready to give Simon the medication and head to the hospital, he stopped. His blank eyes suddenly met mine, and he recognized me. He took a drink of water, and went right back to sleep. We took a collective deep breath. Brian merged back into traffic, and I sat in the backseat all the way home; holding Simon in one arm, and Olivia in the other. No one spoke.
I dialed the Neurologist on call when we got back. She told me not to worry. Kids with epilepsy are going to have seizures and not all of them are a big deal. They increased Simon's medicine a little since he has grown a bit, and they told me to call them if anything else happened. We have an appointment later this month.
So, all is well that ends well. We enjoyed the rest of the trip; swimming, biking, shopping, and playing in the sand. The kids had a blast with their cousins. I did get a great tan.
But, I didn't get away from my fear, I was forced to face it. I didn't get away from worrying about Simon -- especially with the increase in Keppra, which makes his mood swings volatile, something both hard to watch and to mitigate. Instead being relaxed, I was edgy. I had moments where I simply had a hard time keeping it together.
It has been a week since that episode, and I'm coping better. Coming home felt good, safe. I've tried to remind myself to be positive, and strong, and recognize the fact that the medication and the seizures are just a part of our life, they are our normal and I have to accept that. But I also recognize that there is a part of me that doesn't WANT to accept it. I don't want this for Simon. There is still a part of me that longs for a simpler time, and I may always wonder what life would be like without the stroke.