Denial

Denial... something I seem to be getting good at here lately. Over the last few months life with tuberous sclerosis has been pretty rough. Since October of last year Maddie has not had any control with her seizures, despite many increases and the addition of new medication. Its been a struggle to not allow ourselves to get defeated in this season of life. Somehow over these few months I have become really good at staying in my happy place, keeping TSC as far away from my mind as possible. I think I've been in a mode of if we don't talk about it, it's not really here.

Unfortunately, my fort made of denial was crushed into a million peices on Monday. I knew that these seizures needed to be controlled but I didn't realize how close we were to the words, brain surgery. You see, back when Maddie was first diagnosed we were told by her local neurologist it would be good to see a TSC clinic so that if/when she needed surgery she would already be somewhere that could take her. I remember wanting to laugh and slap that doctor at the same time. Did he not see how well she was doing? Did he not remember that her IS was controlled within 2 weeks, and that the tumors on her heart were in "good areas"?

I just knew that we would never be faced with that type of treatment because she was good, we were good, everything was good.

What I'm learning now is that although our hearts and minds want to think and live like this disease doesn't affect us, it does. Maddie may look and smile like nothing is wrong, but her body is riddled with tumors, she has seizures on a very frequent basis, she takes enough medication to put a horse to sleep and many other things that I just can't type, because deep down inside I'm hoping they aren't really there. 

We are coming to you all asking that you would lift us up in prayers. Not only for Maddie's health, but for us as her parents. Having to make decisions like we are making is painful and having to be prepared for the possibilities that lie ahead of us is frightening. Our hearts and minds are needing comfort and although we know where that comfort can be found, our hearts are still breaking.

We truly appreciate your prayers and the love that has been shown to our family time and time again. We wouldn't know what to do without all of you.

Love always,

Heather