Today’s been a good day. Luke’s tics are low, his spirits high. He woke up early and read an entire chapter book. He wrote a book report. He aced his Social Studies test. He whipped through Math. He carefully and neatly did his Handwriting. He cooked his own lunch. He cleaned his room. He studied his spelling words with no complaints. I gave him time to do coding and he got off his technology the first time I asked. Days like today, we fit in extra and more thorough work to make up for the days that aren’t so good.
Some days are bad. Yet, we get through and finish his work. It just may take longer. Some days end in tears because it is hard to be a kid whose life is mostly involuntary. Imagine not being able to control your own body. That’s one of the reason’s homeschooling felt like the right choice. It gives us the freedom to follow the ebb and flow of Tourette’s. It gives Luke the freedom to be Luke.
I remember a day right before we had made our final decision to homeschool. We were at a trampoline park with friends. Luke’s tics were bad, so bad. There was this mom who kept staring at him. Luke noticed. He came over to me, bent down, and hid his head between my legs. We left shortly after. That night it all became clear. I thought back to the way he would pull his hood over his head and put his head down at the most random times. Also, times when he would freeze and not answer me or someone else when they tried talking to him. So many times of him trying to hide because he was afraid of his own body’s movements that he couldn’t control and had no clue why.
It isn’t easy to look back on things for what they really were. We didn’t know exactly what was going on, but we knew something was. Slowly the tics got worse and worse. I began thinking, it could be…no it can’t be…oh I know it is what it is…it is most definitely Tourette’s.
I wish people could see what it is really like to live this way. People just don’t get it. I’m not even mentioning the other diagnoses Luke struggles with. Ugh. Don’t get me going. It’s his life though. It is our life and all we can do is embrace it, trust God, and lean on those who have chosen to walk through this life with us.
Therapy helps. A less busy schedule helps. Understanding friends and family helps. For us, homeschooling has been a huge blessing. Also just knowing and understanding what Tourette’s is helps. I remember when Luke first got diagnosed, the doctor looked him in the eye and told him there was nothing wrong with him. It wasn’t his fault, she said. I saw his eyes light up for the first time in a long time. Every day since, more and more of his light has returned.
I feel like the biggest part of my job has become helping him see that he has Tourette’s, but Tourette’s does not have him––God has him. He always has and always will.
A few years back as I was scrolling through Facebook, I came across a video of my grandpa. His church, my childhood church, did a series of interviews from some of their members. They were all focused on connecting their stories with Jesus’ story. My grandpa spoke a lot about my grandma and the life they built together. He mentioned a verse they relied on throughout their life together. “And we know that all things work together for the good to those who love God, to those who are called according to His purpose” (Romans 8:28). His eyes were tear-filled as he recalled their past and his pain of her death. It was powerful. I never imagined though, the twist his story would take after that interview.
As we drove down the snow-covered highway, I watched out my window as the scenery slipped by. Some of the trees had a few brown leaves still hanging on the branches. I wondered how the brittle leaves survived the ice, snow, and wind this winter has inflicted on them. There were large powerful looking trees that lost their fight to the wintry forces. What was helping those brittle leaves hang on? Maybe the leaf stalk? Pure luck? I’m not sure why I found it so amazing and why I spent any time trying to figure it out.
Our entire church is doing a bible study, even the children are doing their own version. It is broken down by week and each week has a challenge. Then every day has a reading and challenge that pertains to the challenge of the week. This week’s challenge is on ‘being’. It is funny and fascinating that the frigid cold weather has forced us into a state of being. It’s as though God chuckled and said, “I’ll see to it that these peeps get the most out of this challenge.” I cannot help but wonder what next week will bring!
Certain people’s voices have a way of calming and carrying away my troubles. It is as though I can feel it on a cellular level. I mean, maybe not that much…or maybe so? Hmm. Yesterday it was my dad’s voice. Somedays it is the last voicemail from my grandma that I cannot seem to erase. I have one of my other grandma from her old work voicemail greeting as well that I cherish. My mom’s voice, my husband’s voice, and my kids voice ignite the same. Last week, my son had to call me from school. The sound of his voice, although I had just seen him a couple hours before, pulled me out of my worries and into a feeling of something I can’t quite describe.
I felt God as I watched Luke, tired and worn, with his head down walking up to me after school. His arm jerked up to his chest and his opposite leg jerked up immediately after. He glanced around with fear in his eyes. The tics growing ever worse and his anxiety over the fear of people noticing sent a twinge of sadness through every part of me. God was still there though. His loving presence reminded me of the hope we carry in the trials of life.