How much heartache can a heart take before it breaks?

I need to blog about this. It’s been stirring inside of me for weeks.

After 8 years as a typically developing easy going, happy, caring, patient and sweet kid, Kaleb is now also a pediatric neurology patient. My gift from God, my “easy” child, the one who I believed that God gave me to balance out the difficulties and challenges that Autism brings into my world, has been showing significant symptoms of a challenging, stigmatizing, life changing disorder for which there is no cure.

A little over three months ago, during what may have been a period of increased stress for him, Kaleb suddenly began to display obvious motor tics. These have been primarily eye flipping, rolling and blinking type tics. For many months prior to this, I had also noted that he was doing a great deal of muttering to himself and seemed almost unable to be silent during awake hours. I didn’t worry too much about the noises until the eye tics started. So I brought him to the pediatrician and after a mini neuro exam she concluded that these were definite tics. She stated that a recent stressful life change/ event may have provoked this and that if we just ignore it, perhaps it would go away. If it was still around after a couple of months then referral to neurology and psych was the next step.

Well, it has been a couple of months and the tics are still here. Some days much worse than others and there has not been a day without them since they began. I’ve done a lot of reading about Tourette’s as well as talking to other parents of children who have it. They say it is an outward sign of an inner struggle, a way the child copes with anxiety. They say trying to control a tic is like trying to not sneeze or scratch an unbearably itchy itch.

Today I watched a piece of a documentary on Tourette’s that convinced me without doubt that a diagnosis is probably inevitable. And then it hit me. Here’s one more thing, another neurological disorder that has no known cause or cure, that I’m going to have to accept as a part of my life, and I feel like I have been kicked in the gut AGAIN. It’s not that I can’t handle it. I will 'handle' it, because I must. Life isn’t fair, and I expect it will always be hard. The only thing I’ve come to expect is for life to get harder and for for people to let me down. And when things happen to the contrary, I welcome these as unexpected gifts. So I will be fine. It’s my son that my heart breaks for. As though his life isn’t already challenging enough. As an adoptee myself I know some of the inner demons he will face as he grows up. There is insecurity and a strong fear of not being good enough, and fears of being abandoned. Gosh, compared to my adoption story, his includes so much more loss: Loss of many caregivers from his baby/early toddler years, many moves, loss of birth parents and birth culture. Add to that becoming a child of divorce, and then add the racial identity issues he will face for the rest of his life being a black child raised in an all white family. Not to mention the profound challenges being a sibling to a severely autistic sister brings into his world. So excuse me for being TOTALLY PISSED OFF that I now have to watch my son struggle with a stigmatizing disorder that will get him picked on, impact his self esteem, and that he will have to fight himself to control on a daily basis. He’s got enough shit to deal with that this just really seems so FUCKING UNFAIR!!!!!!

And while I’m at it, I also want to say that I’m really sick of that stupid line people say that God doesn’t give anyone more than they can handle. That’s a big pile of crap. People tell me how they admire me and say things like “I don’t know how you do all that you do, I could never handle it”, etc. See, I don’t really feel stronger than anybody else. I just think I have learned to lower my expectations and honed my coping skills. I’m no super mom. I always wish I had the energy to do more for my kids. Most of the time it is all I can do to keep my sink and hamper empty and my kids well fed and clean. I work, I pay the bills. I go to the gym a lot so that I don’t drink too much beer to cope. There’s nothing extraordinary about that. God didn’t give my kids these disorders because I could handle it. Life is just unfair - plain and simple.