11-19-14
Tonight, after almost 3 Years med free.. E will start meds again. I am so heart-sick for him.. sad and scared.. and more worried and unsure of what to do than ever before. His tics are out of control most days at school - before and after lunch anyway, Very frequent and Very loud.
This morning I asked my child, who can not help it, to try not to tic at school. It was completely unfair of me to even ask.. but I did.
This evening, while trying to help him study for a test, I broke down. I broke down in front of him.. I Broke. in front of my child. I told him I was sorry for the struggles he was facing and that I would take it on myself if I was able.. through tears.. I Broke.
And I'm struggling to hold it together.. I've been struggling for the last several days. I feel defeated by going back to meds. I feel like the tics won.. like the pressure won. I feel like I gave in to what I thought everyone else was thinking we should do..
SO. Here I sit. A ball of anxiety and uncertainty and worry.. and guilt.. because I broke in front of him. He's got enough to deal with besides my mental state. I've got so many options and ideas bouncing around in my head.. Do this.. No, That.. Try this?. What if it makes things worse?.. I don't know how to help him best. I don't know what is the Right thing to do. I don't know.
And I Want to know.
I'm worrying too much probably.. I need to let go and breathe.. Let God handle it.. but It's So Hard. I want to take this burden from him. I want to lessen his load. I just need to figure out how.
This afternoon, after three weeks on a slightly lower dose, I called the neurology center to make a plan for stopping this med.. maybe trying something else.. maybe not.. but we are finished with this one.
I miss my boy. I miss the parts of him that disappear when he's got this prescription in his system. I desperately miss his infectious smile and his contagious laugh.. I miss the shine in his eyes when he's thinking some funny, goofy thought or remembering something entertaining from his day. I miss his jokes and general goofiness.. I miss his more carefree and helpful nature that was beginning to shine before November rolled around..The parts of him that I have lost this past three months is not worth the reduction in tics this prescription has brought. I would So much rather have a very noisy, very tic-y happy goofball than this muted version of my boy.
For those on the outside of our tic-y life.. I imagine that the "problem" is pretty easily solved with medication.. after all, that's what prescriptions are for, right?. to "fix" what is wrong with people. For those who are on the outside looking in, it's probably a pretty easy decision.. But, it's Not.
My son has Tourette Syndrome. My son isn't broken. My son isn't unruly or ill-behaved. My son isn't trying to get attention drawn to him, and he isn't trying to distract anyone. My son doesn't need "fixing" so that other people can be more comfortable around him. What my son needs is for others to understand.. to Truly understand.
