I think we have kind of been glad we were able to count Doodlebug’s experience in months. We’ve read about so many stories and met other families whose unknowns lasted for years. So, we don’t revel in this anniversary like you normally would.
It’s been a year today we discovered Doodlebug’s epilepsy and I will always be grateful we have such a strong relationship with Miss Beth (our long-time care giver for her brother and a dear friend) who was with her and handled the situation so perfectly. I cannot imagine how she felt in that moment. Even though I’ll never forget that first night in the hospital, when Bryan left to get stuff from the house, and I witnessed my first seizure alone, amidst the swirling of nurses and beeping monitors.
And here we are facing the frustration that we don’t know anything. Ok so that’s not all true. We know it’s not genetic, or metabolic, and we know now it’s not autoimmune (at least the one kind we tested for), and we know it’s not caused by meningitis or anything bacterial. Great. So what is it? We spent a few months just accepting that some people live with epilepsy and there is no root cause, but the doctors don’t seem to think that fits Doodlebug’s condition. She has all these contrasting things that don’t fit nicely into a category they want her to be in. So we keep searching for an answer. And who knows, the doctor in Chicago may see something new, no one else has considered. This is our focus now, and we will use it to have something positive to think about for a few weeks, at least.
The reality is though, our poor baby is facing a difficult situation no matter which way you look at it now. And we have to wait six months basically to even begin to take on the next challenge. We face a battery of tests again, looking to see what might have developed in the folds of her brain that wasn’t visible in such a tiny brain before. And then, we’ll wait for more results and we will wonder if it’s something we can treat or not. But we have to wait.
And so we are in a holding pattern – which there are times when you get into one of those patterns in the sky and you worry about diverting to another airport because you’re running out of fuel. That thought has crossed my mind for us. We are coasting, and at what point will we have to stop.
We are grateful we have a bit of a reprieve that we can prolong the inevitable. But that’s all it is, prolonging it. I am accepting that she will seize again. Probably not for the next nearly six months that she stays on the steroid. And there is still a chance the steroid will work — magically fixing her seizures completely. But, it’s harder to believe this is the case when nothing else doctors have forecasted has come true, yet.
So we will no doubt have many more milestones to share the rest of this year. And we are going to celebrate and cherish every second of it, because next year will I am certain brings on a new roller coaster we cannot even imagine right now.
OK With Change 