First, I want to make sure anyone who is following our story and/or is new to epilepsy knows something. Millions of people live with this disease. Most likely Reese isn’t the first person you’ve come across. You just didn’t know it. Thousands and thousands of people live with this disease and find ways to manage a mostly normal life. It’s not always as scary as I’m sure we make it out to be. Epilepsy patients may have drug-induced side effects, or have other social anxiety issues, but medically, their status is manageable. That’s what the doctors told us when Reese was first diagnosed. And it makes sense, they don’t automatically assume the worst, so they tell you all the comforting things so you will stay calm and follow their guidance.
It’s just that for Reese it hasn’t been manageable. She has a combination of factors putting her into a much smaller group. Not only is her condition not controllable with drugs (intractable epilepsy), we haven’t been able to pinpoint her issues to a specific spot in her brain. And because it’s not showing up through genetic testing, we can’t just accept that this is who she is. We believe, along with our doctors, she can get better, at least in part, be saved from this terrible place she is in.
The surgery can sound scary though, and we still aren’t clear exactly on which option we are going to choose. It’s a lot to take in. I even created a Pinterest board to store all the things we read, or people send our way. http://www.pinterest.com/redcarrie/understanding-epilepsy/ Thank you to all, and please keep it coming. You never know when something strikes a chord with us or a doctor.
You see us having good days only because we depend on steroids to keep her brain under control. And unless you are a parent who remembers exactly what 18 months looks like, you wouldn’t realize how delayed Reese has become. I think for Bryan and myself, not knowing what her brain can process, what she can and cannot do, and what that means for her whole future is the hardest part. We see her functioning yes, but completely in her own world most of the time. We still aren’t sure she knows her name. And then of course, there is a scenario that the steroids create as much of the fog as they are helping ward off the seizures.
Countdown to surgery
Steroids aren’t a permanent option anyway, so we are close to taking the big step to surgery. We still don’t have every detail of this process ironed out, but we are getting closer.
Tomorrow, Davis will meet with the amazing counselor from the hospital to prep him for what it means for Reese to have brain surgery. Honestly, with Reese being so unaware of what’s going on my fears for her are different. And indescribable. Breathtaking in the worst possible way, actually. But for my son, I feel a worrisome pain because I don’t know what he will feel when he sees her wound and her hair all gone. He is extremely empathetic and protective. As first siblings go, I am familiar with the need to protect at all costs. And I just know it’s in him. So we will learn from an expert how to talk with him and to see if he shares any feelings with the counselor that he hasn’t unveiled to us yet.
And I think just knowing we are getting closer to being prepped is soothing for me. We have been waiting and waiting to know what to decide, so I have put little pieces in place to feel like we are making progress.
And it’s that progress that keeps us going. Tonight Reese intentionally kissed each of us good night (with a little coaxing). She had started doing this months ago and somewhere along the way it dropped. She doesn’t like you to get in her face, and so most of the time we don’t push it. But there was a sweetness in her eyes tonight and I could tell she wanted a little extra show of love.
I think we have kind of gotten used to her not really looking at us or being totally alert. And so it stands out so much more when I see this sparkle in her eyes that tells me she is really in there — talking to me through these amazingly beautiful eyes — and I just can’t tell you how that feels. But that is THE reason we keep going. I live for that look. It’s in my dreams and hopefully after surgery we will get a lot more of it.