The One About Tourette's...
Hey friends! LOOK, I'm actually writing another post. I knew when I started this that I would be slow going with it at first. But you know what? I'm okay with that. :) I'm learning to be okay with a lot of things in life now. There are things to fight for and there are things that need to be let go of. Finding the balance of both in life is not easy.... but I'm doing my best to work on it.
I wanted to take some time to share with you a bit about one of our boys. We have three amazing and handsome boys who I homeschool. But the journey we have walked through with our middle child, who just turned 9, has been an interesting one. Two years ago, he was diagnosed with Tourette Syndrome. Sharing what I went through during that time and since is a huge weight being lifted off my shoulders.
Here is the medical definition of what Tourette's is, in case you didn't already know:
Gilles de la Tourette syndrome is a condition that causes a person to make repeated, quick movements or sounds that they cannot control. These movements or sounds are called tics. With it comes a concoction of other things our son has to deal with, like ADD and OCD, and we think he may have Aspergers as well. Some people with Tourette's may only have the tics, and for others, the list can go on and on.
When we first suspected that something very not normal was going on, I googled the heck out of our sons symptoms, and everything always pointed to this disorder called Tourette's. The only thing I had previously known about it was what I had seen on TV, or heard people joke about, and that it was a "cursing" disorder.
I didn't want to believe that this was what our son had. A year later and after several doctors visits, we finally had official diagnosis from a neurologist that our son did in fact have TS. I can't even begin to tell you how hard it was for me to work through that diagnosis, that our son was different and that he couldn't make his body stop doing the things it was doing. My heart hurt for him. (It still does.)
I don't know why, but having that official diagnosis threw me into a dark pit of despair. I was scared. I was confused. I questioned God so much during that first year.... and then some. I wondered why God would allow our sweet child to have to go through this. And his future, oh gosh, I would just cry thinking about the challenges he will have to face as he gets older. I was broken inside and grieving at the loss of the normal life I thought our son would have.
The only things I could focus on during that time were all the questions that ran through my mind and that every dream I had of a normal life for my child was shattered. What if it got worse? What if it gets him in trouble? (I heard and read so many stories about kids and even adults getting in trouble because of their vocal tics.) What if it prevents him from having a happy life and getting married one day?
I finally had to make myself reach out and find some kind of help. I needed something. So I joined an online community of parents with kids with TS that homeschooled too. I can not tell you how much that group helped me! Especially the encouragement from the mom who started it. The group itself isn't a "Christian" group, but this particular mom was, and she really helped restore my faith. The more we learned about it, and the more I saw that I wasn't alone in how it made me feel, helped tremendously. That, and A LOT of prayer.
In all that I walked through emotionally with it all, and praying that God would just take this away and heal my son, I finally realized that I needed to start praying for me too. Especially that my heart would trust that Jesus has our boy in His hands...Tourette's or not. I desperately needed to start fighting for my faith to come back. And it has, in so many ways. [Thanks for never leaving my side, Jesus.]
I wouldn't have been able to walk through all we have gone through on this journey if it wasn't for Christ walking beside us. It's still tough, but I have to let go of my own plans, dreams, and hopes for his future and just trust that God knows exactly what He's doing.
Photo credits go to our awesome friend David Laws!
God has some big plans to prosper this boy. I know this because He's already made him such an awesome kid. Even through all the waxing and waning, the challenges we face at home, and the challenges he will face outside in the world one day on his own - I can say with courage that I know he will be okay. God's got this. :)
Here is the medical definition of what Tourette's is, in case you didn't already know:
Gilles de la Tourette syndrome is a condition that causes a person to make repeated, quick movements or sounds that they cannot control. These movements or sounds are called tics. With it comes a concoction of other things our son has to deal with, like ADD and OCD, and we think he may have Aspergers as well. Some people with Tourette's may only have the tics, and for others, the list can go on and on.
When we first suspected that something very not normal was going on, I googled the heck out of our sons symptoms, and everything always pointed to this disorder called Tourette's. The only thing I had previously known about it was what I had seen on TV, or heard people joke about, and that it was a "cursing" disorder.
I didn't want to believe that this was what our son had. A year later and after several doctors visits, we finally had official diagnosis from a neurologist that our son did in fact have TS. I can't even begin to tell you how hard it was for me to work through that diagnosis, that our son was different and that he couldn't make his body stop doing the things it was doing. My heart hurt for him. (It still does.)
I don't know why, but having that official diagnosis threw me into a dark pit of despair. I was scared. I was confused. I questioned God so much during that first year.... and then some. I wondered why God would allow our sweet child to have to go through this. And his future, oh gosh, I would just cry thinking about the challenges he will have to face as he gets older. I was broken inside and grieving at the loss of the normal life I thought our son would have.
The only things I could focus on during that time were all the questions that ran through my mind and that every dream I had of a normal life for my child was shattered. What if it got worse? What if it gets him in trouble? (I heard and read so many stories about kids and even adults getting in trouble because of their vocal tics.) What if it prevents him from having a happy life and getting married one day?
I finally had to make myself reach out and find some kind of help. I needed something. So I joined an online community of parents with kids with TS that homeschooled too. I can not tell you how much that group helped me! Especially the encouragement from the mom who started it. The group itself isn't a "Christian" group, but this particular mom was, and she really helped restore my faith. The more we learned about it, and the more I saw that I wasn't alone in how it made me feel, helped tremendously. That, and A LOT of prayer.
In all that I walked through emotionally with it all, and praying that God would just take this away and heal my son, I finally realized that I needed to start praying for me too. Especially that my heart would trust that Jesus has our boy in His hands...Tourette's or not. I desperately needed to start fighting for my faith to come back. And it has, in so many ways. [Thanks for never leaving my side, Jesus.]
I wouldn't have been able to walk through all we have gone through on this journey if it wasn't for Christ walking beside us. It's still tough, but I have to let go of my own plans, dreams, and hopes for his future and just trust that God knows exactly what He's doing.
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