I am so naïve. Why in the world did I think that last blog post was going to work? A subconscious pep talk of the way that I wanted to feel, not the way I really did feel. It was a nice try on my part, but I think I have to mark it a fail.
This week I was supposed to be relieved. I was supposed to feel better with these answers. I was supposed to have a sense of order. I do not.
I am rethinking every medicine change. Every dose. Every move we have made in the past 9 months. I went back to December of 2015 and read every email I sent to Cincinnati.
His brain waves when he was not seizing were normal except for one area and now all parts of his brain are misfiring even between seizures.
He was having 4 seizures a week and now he is having 4 by lunchtime.
He could stack 10 blocks in a magnificent tower and now just putting one down is a challenge.
What did we do? How did this happen?
Was this inevitable? Was this an example of TS being a force to be reckoned with? Is this the chaotic sabotage that this disease provokes?
Did we do this to him? Did we miss something? Was there something that was helping that we need to revisit?
I went back in the records and picked up as many details as possible.
Sam sometimes wanders the house and brings me a sock or a piece of cat food or a big piece of fuzz. Thank you sir. What would you like me to do with these random items?
I did the same thing to Cincinnati. I collected every random piece of information from the trip, from the past, from his behaviors at that very moment and I dumped them all into the lap of Gail and Dr. Franz, our team in Cincinnati. Please just figure out what to do with this mess. Where do these random items go?
I am so scared of what the next few months will hold. Will he continue to regress the way that he has? He has little development left to lose. Should I fight to get the surgery moved up, a surgery that may not work for more than a year and possibly leave him paralyzed? Should we try to go back on everything we were doing in December or is the momentum of this tuber snowballed beyond the capabilities of medicine?
So, I am a bit all over the place right now trying to figure out where this questioning will take us and what path is being prepared for us. I feel sad and scared and then I get a gift like this weekend…
A wedding. A normal wedding is like stinkin’ Mary Poppins and her spoon full of sugar. This wedding was like some kind of super potent Stevia. The weather. The location. The couple. The guests.
It reminded me of where I am from and who I am.
Who we are.
We are a crazy, dysfunctional, loyal, overly affectionate, family. Blood or no blood, this weird jacked-up family that we have created in our small Southern Indiana community is something to be proud of. We have hated each other, loved each other, dated each other, dumped each other, danced with each other, cried with each other, and laughed with each other. We never miss an opportunity to tell each other that we love each other or when to go reapply lipstick. We do without apologies, explanations, and boundaries. We grab anyone who is closest on the dance floor. Because if they are out on the dance floor carrying the party like it is a responsibility to bring the fun, chances are they are one of us.
I missed my family.
And now, to have you back and feel you with me, makes this whole chaotic mess a little more organized. The Red Cross has been called in and delegation is beginning. I know you are ready to board up with windows and grab the sandbags when the storm starts to roll in. And when the storm hits, our basement will be crowded. All of us packed in together, holding each other, holding our breath, waiting for the impact. We are scared until we remember what we do. We don’t cower. We don’t hide. We dance.
*Below is a video of the last two days of the trip. We were tired so mom isn't reality TV caliber. Disappointing, I know. Don't worry, she brings it on the daily...
Mother of two amazing little boys, one who just happens to be a TS warrior.