It has been 5 months since Tryp's diagnoses and he has a new selection of shoes that come with enough room for him to rub his toes together.
It all turned towards the sun when we met the specialist at Cincinnati Children's Hospital. She was wonderful, so wonderful that she changed our lives. We talked to her and voiced our concerns and she was able to give a new perspective on what we were looking at through, what felt like, a very dark room. She was the optimist when we told her that we did not want to treat him with medication. She was the optimist when we told her that we wanted to do things the right way and address the issue and not mask it. She suggested an organization called Fernside. It is grief counseling for families, it eases his anxieties about death and it is working wonders. Since my last post we have managed to ween Tryp off of meds and he is finally back to the boy I remember, only now he has some added bonuses. He is still developing new tics and shedding old ones on a regular basis but he is healthy.
I was reading back through some old posts and came across one line that really caused me to acknowledge the person I was just a few short months ago. I said "He has heard us use the term "Tic" but I know in his mind, he pictures
the bug but he knows nothing of Tourette Syndrome and I shall keep it
that way as to not hand him a crutch. With great hope and fingers
crossed, this too shall pass."
Hindsight can make the old you look really ignorant. Since I said that I learned ways of explaining Tourette Syndrome to Tryp, to myself and our family. I have learned how it works and I have learned that it is not something you get to explain once. New tics happen and new explanations have to be explored. Questions from a 7 yr old are much harder to answer than those of a 6 yr old. I am learning and educating every single day. TS is not a crutch at all... it is simply a shove in a new direction.
Also, I can keep my fingers crossed until they are blue and "this" is not going to pass. This is life and it doesn't change anything but it does change everything. Having a child diagnosed with any sort of life altering issue throws the heart through the same 5 steps as grieving. I sat in denial for a long time, I played with anger for a minute, I was bargaining away all of the nothingness that I had to offer and depression caused many sleepless, tear filled nights. Only recently did I have an epiphany, the only way to truly be happy for my son and to help him be truly happy with himself is to accept this hurdle and jump it 500 times a day if I have to, the race is much more fun if he is with me though. So that brings me to acceptance. Here I am, good to be here. I brought Tryp with me and we were setting out on an endeavour that feels much bigger than us. Our first stop, organizing a Party in the Park for Tourette Syndrome. Wish us luck!
