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.
Driving fast down an old dirt road, I kept glancing in the mirror at my kids in the backseat. Their eyes told me their discomfort was rising. My husband’s tension was evident by his firm grip on the wheel. The low tire pressure alert lit up on the dashboard. We just wanted to get to where we were going. We had too many things to do. We kept going.
Scattered heavy raindrops began to fall from the sky as I played in a nearby tennis court with my friends during our brothers baseball game. Slowly, the sporadic rain turned into a steady rainfall. My friends and I lifted our arms high and tilted our heads back as we allowed the rain to land in our open mouths. I remember the laughter that flowed from us and the glances that bonded us in that moment. Time slowed and we were nothing else but free.
The last year and a half has been rough on me. I haven’t wanted to fully admit it (even to myself) and I especially haven’t felt like discussing it. I don’t want to go into all the particulars that has caused this. Life is life and it isn’t always pleasant. For someone like myself, there is nothing harder than to watch bad things or bad times fall upon people I care about. I’m not saying this to prove I’m a good person, but I’d much rather have bad things happen to myself than to my peeps. That is the good and bad of the gift of mercy. I presume every gift has a weakness and Satan uses that weakness to try to tear us down.
I focused in on the pink ones. Romans 8:28 reminds me of my grandparents, it reminds me of my grandma’s death. Since the verse keeps popping up I have been thinking of her. Pink carnations were her favorite. They’ve been here in my house and yet it slipped my mind until that moment. As if that were not enough, I went to sit on my couch. My phone was in my hand because I was getting ready to clean and was going to put music on. (Who likes to clean without music?) I sat, thought about my grandma, pulled myself together, and then put Pandora on. I began to stand up when the song Homesick came on. It was the song they played at her funeral.
Matthew,
Through the Stillness 