Therapy. Medications. Weighing food. New recipes. New doctors. No answers. No sleep. And through it all...seizures, seizures, seizures. Sometimes more. Sometimes less. This job is exhausting, and if it's possible it's exhausting in a new way nearly every single day. I'm learning new things about my new life all the time. It's not just that my son has seizures of unknown origin, or that we have absolutely no idea what the future holds for him. It's the little things, too. He's extremely susceptible to illness so taking him to any sort of indoor playground/germ cesspool is out of the question. But, we can't go outside because it's too hot and his special diet makes him unable to regulate his temperature. If he gets too hot he gets a fever and has more seizures as a result, which sort of makes "swinging at the park" not really worth it.
When it finally is relatively cool outside, I take him to a park and see a mom giving her child goldfish crackers. He sees it too, and cries for them. I did come up with a recipe for him now so that he can have them too, but it didn't fix the whole problem. You know how a stray kid will walk up to you in a park and look at your child's snack and you look to the mother and make sure it's ok to share one with them? I can't do that. Try explaining to someone else's one-year-old that they can't have any of my son's cookies because they are "medicine." And of course I've gotten that, "well this lady is a bitch" look from other moms who don't know us. I smile, but think silently, "Yes, I'm sure you think your child is adorable and irresistible, but trust me, you don't want me to share." I usually try to explain as much as I can upfront to avoid these awkward situations (a little tip I learned from my mom). Regardless, going to the park is a completely different experience than it was two years ago.
Easton doesn't walk, doesn't say any real words, and has the worst sleeping pattern on the planet. We are exhausted and wonder sometimes where we'll find the strength to keep going. I say all of this, not to throw myself a pity party, but to give you an idea of how incredibly significant my day was today...
It's been a rough week of no sleep and an exhausted boy during therapy. I had just told my husband earlier this week that I was pretty sure Easton would never actually walk, at least not without an assistive device. He just looked at me with the same, "I don't know either," look that we always give each other when we're discussing his progress. The lack of sleep was getting to both of us and I decided to ask my parents if Easton could stay with them for the night, so that we could get some uninterrupted sleep. I'd never initiated this myself, and was a little uneasy about it, but they readily accepted and I took him to their house. When I kissed him good-bye and left for home, I felt awful. Why couldn't I do this? Why couldn't I take care of my own kid? How could I leave him somewhere other than his home for an entire night without me?
Well, I'm glad I did because I slept more than 2 hours straight and felt like a functioning person today. I even had the energy to take him swimming. My dad was there watching us from the eating area above the pool, and Easton and I had brought friends along for the fun. I was talking to one of the lifeguards when Easton looked at the side of the pool and pushed away from me. He then took FOUR UNASSISTED STEPS to the side of the pool. He WALKED. He actually did it. I couldn't believe it. I looked to my friend, Ruby, for confirmation of what I'd just seen. She smiled and congratulated him, so I knew I wasn't imagining it. Then I looked up above the pool and saw my Dad smiling and clapping for him. It was the most incredible moment. If I could have bottled it up, I would have enough elation in that one bottle to last me a lifetime. We've got a long way to go and the road won't always take us forward, but now I know that he can do it. I just have to be strong enough to get both of us there...four steps at a time! :)