This is how illness is supposed to go: Get sick, go to doctor, buy medication, be slightly inconvenienced for awhile, and complain about how "bad things always happen to you." But, what happens when the "bad thing" becomes a way of life? Let me tell you, LOTS of things happen, but all aspects are not necessarily negative. Obviously I've encountered this life changing event. I think we're all on the same page there, but the incredible part of it is that with all of the scary, awful, stomach-turning pain, positive things have been creeping into my life right alongside them.
I'm my son's primary caregiver, which probably isn't that surprising given the fact that I'm a stay-at-home-mom for the time being. However, my role has sort of been shifted from it's original position and now I'm also my son't primary physician. Of course we all have our own ideas about what's best for our kids as far as their health goes. We encourage exercise and eating right, and we generally seek the help of pediatricians and friends alike for certain childhood illnesses. Sometimes we decide to treat as the doc orders and sometimes we just let it run it's course. But, in a "serious" situation (i.e.-anything that cannot be cured with a band-aid and a kiss) we take our children to the doctor and follow orders. Even in the scariest of situations, in the back of our minds, we KNOW that someone will help us. Someone will have the answer. It might be tough for awhile, and might even mean a few nights in a hospital running some tests, but ultimately the answer will come and life will again return to status quo.
This is no longer the case for me and many parents like myself. I no longer expect answers. In fact, I doubt their existence. And, admitting that can be very scary. My husband and I are in this together, but even he will admit that my perspective is different because I'm with Easton all day long, and I make most of the medical decisions. And honestly, I wouldn't want it any other way. The physicians we work with are all amazing, but who has more of a vested interest in this child's life than me? No one. So, I get the job. And, I'll take it, but that doesn't mean that it doesn't get difficult. I tried describing my life to my husband today. I told him that it's sort of like running on a hamster wheel, and just out of reach is a projected image of a glorious finish line. People are cheering and everything you ever hoped would come true is right there in front of you. Beautiful, glowing words like, "progress", "promise", "future", and "hope" dance before you and urge you on as long as you can just keep going. Unfortunately, you can never get there while you're on the wheel. You think about just stopping sometimes. Just giving up, and saying that enough is enough. But, if you do, the picture of the finish line is gone. The words disappear and it's dark and scary and you have nothing lighting your way.
As exhausting and depressing as that sounds there is a part that you may have missed. Despite the fear, I recently decided to wean my son's seizure medication. That probably sounds like a good thing, but it's one of the most gut-twisting, awful decisions I have to make because the doctors don't agree with me. They believe in the medication and it's abilities. I don't fault them for that at all. They've seen it work. The problem is that it isn't working for us. My son has been through all kinds of medications and the truth of the matter is that this beautiful child has been seizing hundreds to THOUSANDS of times a day since April 30, 2011. So far we've failed him on all attempts to stop them. This fact has encouraged my decision to go another route, and it shakes me to my core to think that what I'm doing may be dead wrong. But, this is where the good stuff gets illuminated. Not in the result, but in the decision-making. By making the decision, I've chosen to keep fighting, to keep running on the wheel and I've never understood where that mindset originated. Where is this renewed strength (or maybe even blind stupidity) coming from? People call you "strong", but you honestly BECOME this way because of your circumstances. I'm only stronger than before because I have to be. But how?
I've never been able to articulate that feeling of "strength." However, today a stranger did it for me. I decided to bike to the grocery store between my son's therapy sessions. He was whining and complaining on the back of the bike, and the kid who couldn't possibly be called upon to perform any sort of fine motor skill during occupational therapy, had removed his own helmet and thrown it on the street three times during the ride! As I walked the bike to the rack at the store, a woman looked over at my attempts to wrestle my squirming child from his seat and said, "You must have a lot of life power to be biking to the grocery store." I smiled and acknowledged her, but as I walked past I thought about that term, "life power." THAT'S IT! It's LIFE POWER. We ALL have it. The great news is that it can be distributed from person to person. Sometimes we have a little more, and sometimes we have a little less, but we can lean on each other during those times. My situation isn't different from anyone else's. We all have our own crosses to bear, and we each use our own "life power" to get us through. Some will have to call upon it more than others, but I assure you that those are the people who will have more of it to share in the long run.