Today’s Been a Good Day

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.

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The Love For Your Family

I was weary for quite some time. I was a heartbroken momma wanting to know how to help my boy. I was impatiently waiting for God to answer my prayers, not wanting to trust what He was doing behind the scenes to prepare us. 

Last Sunday evening as I was lying in bed, I prayed we were making the right decision. I mean, I already knew we made the right decision. God clearly revealed it to us. It’s just, sometimes my humanness makes me second-guess things. Through all my humanness, all my weakness, there’s one thing I never second-guess: the peace only He can give. In my moment of questioning, that lovely peace enveloped me and has carried me through this entire week.

Over Christmas break, Luke was diagnosed with Tourette’s Syndrome. Another diagnosis added to his list. It doesn’t seem right. It definitely isn’t fair. We weren’t surprised by it though. The symptoms described everything we had been noticing.

This year, school became hard. We realized he was spending so much energy trying to suppress his tics that he was unraveling at home. Add that to the energy it takes with his eye disorder and just the normal energy it takes to learn and so on. Plus through all of that, his grades were great. No wonder he was unraveling. On weekends, Luke was worn and anxious thinking about the coming school week. Kids were noticing his tics and were asking him questions. Most were not being mean, but it was pushing him further and further into a shell. He was sad and frustrated at the world. We were trying everything we could and nothing seemed to help him. I was losing my fun-loving bold kid. We had to do something different.

It’s crazy what the love for your family gives you strength to do. Never did I ever think I would homeschool. Yet, here I am. Our first week passed and went great. It felt so natural and right that there is no doubt God’s blessing on all of this. I feel strong and at peace. Thanks to God.

We do have a long road ahead. Luke will be starting a therapy that is known to be the most effective for Tourette’s. Please pray that it is for Luke. I want my boy back.