More than anything, every parent wants their child to be seen for all of their wonderful magic, not their limitations. As Taylor grows, I worry more people see her limitations - her lack of words, the braces on her feet, her head-banging tantrums, the occasional drool - more than they see her beautiful blue eyes, infectious laughter, joyous "HI's!" which contain more emotion than most people's full sentences, and her committed work ethic. This is our Taylor and I so want the world to know her. So, I will try again to re-commit to the blog. Send me some comments so I know people are reading:)
The lull in blog posts can be attributed to most of my lulls - a hard time, a challenging reset, and then both a lack of desire to relive the experience in words and a divine wish that the hard time had never occurred. But, I'm feeling strong today so here we go.
Our Hawaiian vacation was amazing. Full of beautiful scenery, sunshine, laughing kids and pool-time fun. This is the short answer. In reality, David and I were highly stressed because Taylor had a seizure on the plane about 2 hours over the Pacific Ocean on our way there. This had always been our worst case scenario - since she tends to only have seizures once every year or two, we had always thought "what are the chances?" Slim to none, surely. But, we've always traveled with a special shot we could give her that should stop a seizure in case of emergency. I don't think either of us ever thought we'd actually <need> it though. I sure didn't.
We flew out that morning and all seemed fine. Taylor fell asleep in my arms for an early nap around 11am, which was unusual, but I thought she was just over-stimulated from the airport and cozy in my arms. About two hours into her nap, she started convulsing. If you've never seen a seizure, it is hard to describe how frightening it is. The brain is essentially short-circuiting, the body has no control, the face is frightening, and the entire time you have no idea when it will end. The first thing you do is start timing the seizure so I immediately glanced at my watch. Our game plan has always been to call 9-1-1 at the three minute mark, and administer the shot shortly thereafter if needed. Our doctors tell us you should do this at the five minute mark, but I can't even imagine waiting five minutes. Every second is torture. Apparently you aren't in real, long-term, or potentially fatal, danger until the fifteen minute mark, but again, you hope and pray you'll never get close.
This seizure was entirely different because we were on an airplane. Her other seizures we have been near medical help, so while very scary, we knew help was not far away. My first thought when she started seizing on the plane was - "this could kill her." With every shake, I prayed that it would stop and she would live. The reality is epilepsy does kill people and while we've been very fortunate that we've been largely able to control Taylor's, there is no predicting how serious a seizure will be based on prior seizures. So, I held her shaking body and prayed. David was sitting next to me and thankfully the big kids were a row behind us watching a movie together (such a gift, because this never happens!). We watched the clock and after a long minute and 45 seconds the seizure subsided. We tried to make eye contact with Taylor, but she still looked in a haze and her head was turned to the right with her face contorted similar to a stroke victim. Then came a whole other wave of worry. After about a minute, her face relaxed and she settled into a deep nap - which was her body's way of recovering from the seizure. She slept another 1.5 hours or so and I was on pins and needles the entire time. She finally woke up with a smile on her face and she was back.
As soon as we got off of the plane, I called her neurologist. He said it was likely a fluke, increased her medicine slightly and told us to enjoy our vacation. So, we tried to shake it off and embrace this special place that means the world to us. I had a few tears on the plane, but largely, David and I held it together quite well, despite our terror. A friend asked me how. The answer is pretty simple - harkening back to our original blog - you have no choice. I cannot fall apart and take care of my seizing baby. I cannot fall apart and stress out my big kids, making a memory for them that I have fought so hard to avoid. I cannot fall apart and make the situation worse. So, I didn't. Until I went for a long run the next day and then let myself release the stress on my favorite oceanside cliff.
We really tried to enjoy the vacation and while my anxiety began building as we neared the end of the trip, I convinced myself the seizure on the plane was a fluke, just like the doctor said. So, I wasn't worried when Taylor again fell asleep on my lap around 7pm on the flight home - again about 2.5 hours over the Pacific Ocean. About thirty minutes later, again - another seizure. This time was less shocking (although still very scary) and I held her tight for about 45 seconds and then started kicking David's seat in front of me. He came back to us and she stopped after another 30 seconds or so. Poor Lauren was right there, but we again, remained very calm. This one was a bit shorter without the weird facial twitching at the end. She again fell asleep and then I had even more to worry about.
Traveling is a big part of our life. We have family in Seattle, Missouri and Texas and enjoy vacationing in the sun, away from the Seattle grey. Clearly the first seizure wasn't a total fluke. Why did it happen - twice - and how could we prevent this from ever happening again? This gave me great concern and still does. Taylor's neurologist was on vacation when we got home, of course. So we had to wait about two weeks for any answers. And then, like many things, it is not definitive. The party line - she should be fine, it likely won't happen again, her seizures are relatively short and that is good. We have our emergency medicine and she should continue to fly, although we should minimize stressors (late flights, etc) as much as we can.
So, we debated this for a bit. And have decided for now, we will live. We will take safe risks and we will live - for Taylor and the rest of our family. We could give into fear in so many ways with her condition and if we do, it will be bad for all of us and start a dangerous spiral. We are going to Palm Springs in a month for spring break and it will be a big test for us. It is a short flight - and we paid a premium to fly direct and at our optimal times. This is a first step. I hope it's the first of many.
