I could start off how I am feeling with “it was the best of times, it was the worst of times” and I would arm wrestle Dickens on who has experienced worse. But that’s not all of it. We are living more than one cliche it seems.
I can’t think of any clever way of describing this feeling to you. I hate saying it’s an emotional roller coaster but I can’t help myself. We are literally living every wonderful moment seeing Reese grow and learn something new daily with a constant fear it’s her last coherent moment for a while.
A seizure can start with a flinching of a body part. In Reese’s case it’s normally her right arm and then the left almost at the same time. If you’ve ever held a sleeping child (especially a toddler who’s brain is recording everything they learned by practicing it while they sleep) you can imagine how holding a sleeping child who could seize at any moment is agonizing.
And it’s now that while I bask in the sweetness of cuddling her warm squishy body, her soft curls tickling my cheek; I am paralyzed with fear of our reality. We’ve been in a parent’s purgatory for months now, counting down to this week. The last days of her steroids. The first real days that we can expect to have the sudden need to call 911.
Don’t get me wrong. It’s been so amazing. Every giggle and babble and problem solved by this sweet girl is worth celebrating. All her therapists are so optimistic and pleased with her recent progress. It’s just all so fragile…
I have been the one expecting her to jump start this process on her own… But it means we have to lose her to get her back. It’s terrifying. We have to let go and watch her go into her post-seizure zombie state – spaced out and exhausted. Then we have to watch her fight her way back after two surgeries. We can’t pull her out if it. We just have to watch and cheer her on and hope she knows we are waiting for her to come out of the fog — ideally for the last time — and show everyone just how amazingly strong she is.
So we are down to the wire (there’s another one) and it could be at any moment. I’m afraid to sleep. Afraid to leave her. So very, very scared.
Thank you all for always listening and being supportive. You all have different ways of showing you care and I’m consistently touched and surprised by your generous shows of friendship.
We are prepared as we can be, and we promise to keep living every moment happily until the moment we have to hold our breath and wait for Reese to beat all of this.
You will know more when we know more.
OK With Change 