Why does the bad always seem to outweigh the good? Why do the lows of the bad news always seem, well, lower than the highs of the good news?
I'll get right to it...two therapists that saw Sophie Kate on Monday saw her having a seizure. I guess I have been in absolute denial since April/May of this year or I have been trying to pretend that I wasn't seeing clearly, when I should have opened my stinkin' eyes and seen clear as day, SK is having seizures.
She's had I guess 8-10 "episodes" as I would have called them since April/May. I have been trying to describe them to her therapists but no one has seen them but me and Chad and we just didn't know. Monday when we were going to pick up her splints, which I was totally excited about, she had one of these "episodes" in front of two therapists and they both told me that this was a seizure.
And instantly, there it was again...my old friend waiting to envelope me in the deep blackness, waiting to take all my joy and happiness away once again. Waiting to drown out all the strides we've made this summer, waiting to overshadow and eclipse all that my little girl is striving for.
Of course, I let my old friend back in as if with open arms. We have spent so much time together over the past 21 months. We know each other so well. It's a silent kind of pain. I never knew that pain could be silent until Sophie Kate was born. Pain hurts doesn't it? When you are injured badly aren't you supposed to scream?? Then what does it mean when there is no sound?
My silent tears pour into some kind of bottomless vastness that never ever fills up, tears just roll but still there is no sound. It must be the silent pain that no heart should ever have to endure. The kind of pain we have no control over, pain that cannot be fixed with medicine or bandages.
The pain that a parent endures as they watch their child suffer. Her cry is so different after she comes out of a seizure. It's a scared cry, my baby girl is scared, she doesn't know what has just happened to her. All I can do is hold her, I can't make it stop. Oh, I'm sure whatever new medicine they throw at us will make them stop, but that medicine will also run the risk of making my girl's sweet smiles disappear too. How could I not have known what was happening to her??
Did we have too many good months, fill our quota of positive steps forward? So she really is going to be just like "they" said she was going to be. When I watch her sleeping she looks totally normal. She doesn't look like anything is wrong with her at all, it's heartbreaking....and here comes the tears and the everpresent silent pain.
You all think I am so strong, that I am dealing with all this and handling it all so well (or maybe you don't), but that is the "fake me." The "fake me" is who you see when I leave this house, it's who you talk to when I answer the phone.....this is where I really dwell and very few can handle it, deal with it, want to see it or want to be around it.