30 days and 3 hours.
30 days and 3 hours of no seizures has already put the light back in Luke's eyes. He notices things that he never has before. He interacts differently with toys, food, and people.
These seemingly small connections are being made in his brain that will undoubtably pave the path for huge gains.
2017 has been an unbelievable year for Luke. We've spent more days than not, cozy in our jammies, eating bacon and doughnuts. We have snuggled on the couch and watched Elmo when Sam has been so kind to give us a break from the Choo-Choos, sipping chocolate milk and snacking on Cheerios.
Life is calm and good and beautiful.
I am supposed to put my battle gear away and 'enjoy this time,' but there inlies the problem... I don't think I know how to do that anymore.
For the past three years, I've done nothing but fight. Fighting through pregnancy and hospitalization and insurance and surgeries and more pregnancies and divorce and regression and medications and custody and more surgery.
And now... now what.
We walked out of The wreckage as victors. We came home to a Hero's Welcome. We were shocked and scared when, a week after surgery, Luke's brain pressed pause and sent him back to an infant developmentally, while it healed. He couldn't sit or stand or use his hands. Still... We kept fighting. Then, It was like we were standing in the middle of a medieval battlefield. Blood and sweat and hair flying through the air until Jan. 1, 2017 when the fighting suddenly stop. It was as though the Army stood up, put their weapons down and just walked home. It was amazing and creepy all at the same time.
The fight, all of a sudden, was over.
So, what am I supposed to do now?
The past year has made me in to a maniac of a fighter. The busier and crazier things got, the better, sharper, tougher I became.
And now that fight is over, I don't know what to do with myself. Who am I anymore if I am no longer a fighter?
Sure... this could seem like a perfect example of Munchausen by Proxy syndrome if you look at it from a conspiratorial point of view. But that is not what I am getting at. I don't want to go back to seizures and stitches and neutropenia. I am not a sadist or masochist.
Of course, I'm not disappointed that Luke is ok. I just don't know how to be ok now in the calm.
How do you stay a hungry fighter while still having peace and faith that it will all work out? How do you know where to go and what to do when you have the luxury of options? How to you keep the fire going without any fuel?
I know I should enjoy relaxing. I know I should be grateful to have our health. And I do feel those things, but the drive, the push, the desire to do more, to be more, to have more, the desire to fight won't stop. It is who I am now.
Ya know, I used to apologize for my aggressive and loud and over-the-top self. I pushed Her down for so long, insecure that She would not and could be loved.. But last year I needed Her and She was ripped out of years of hibernation and pushed to the front line.
That person, I liked Her. I missed Her. I was proud of Her.
I finally got to be Her again. I had to.
But She missed a lot of life. She has never been a normal adult. She went from adolescence into a decade of seclusion and now she is the reason I stand here frozen, looking around, trying to figure out what the heck just happened.
She stands there in the empty battlefield, weapon still in hand but no one around.
It is quiet, but I can still hear my story, my song, my chant. The army has gone back to their families, to their lives, to their homes. They rest and heal and try remember who they were before they were a solider. They pray for peace and the mundane. But don't want to go back to that life, to who I was. I don't want to send Her away because I know that this standstill is short-lived. I know that we will never be 'normal'. First because I don't want to be and secondly, because Luke is not 'fixed'. It probably wouldn't hurt to put the sword down for a minute but it's not going in the attic. I need it handy. I will need it again. Although we may be lucky enough to not be fighting seizures, there is no surgery, no cure for TS or developmental delays or autism. It's therapy and medications and threatments and connections. The fight for our children never ends and is not a fight reserved for parents with children with special needs. It is the reason we don't spend our days eating Pizza Rolls in bed and watching The Godfather trilogy.
Yet, still I stand here, holding a sword with no opponent around. No home to return to. No arms to carry me through the door and nurse my wounds. I know I am supposed to move forward and heal but the battlefield seems like an inappropriate place to do that.
I look around this battlefield knowing that it is time to take the first step, but unsure which direction is home.
Mother of two amazing little boys, one who just happens to be a TS warrior.