I have a love hate relationship with yo-yos. I think they are super cool! Especially since seeing some incredible tricks involving yo-yos on America's Got Talent. But I cannot seem to get the hang of them and so they frustrate me. A part of our lives the last 5 months has seemed a bit like a yo-yo and there have not been any cool tricks involved!
Our oldest son, Isaiah who is 6, has Tourette's. We began to suspect this Thanksgiving weekend. He saw a Neurologist 3 days before Christmas and our suspicions were confirmed. The one criteria that could have ruled out the diagnosis was that the tics must occur over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months. We past the 1 year mark sometime during the last couple of weeks. And so it is official.
I am not sure how much you know about Tourette's, I knew very little until recent months. My limited experience with it had been what you see on T.V. Sudden outbursts of socially unacceptable words or strange noises. It is not always so extreme. And though this can be a part of it, there is so much more to this disorder.
Most of Isaiah's tics you wouldn't notice unless you just sat and watched him for a while. He had one during the holidays that would turn heads at the grocery store. But the rest have been less obvious and he controls them well in public. His vocal tics he mostly does under his breath... you'd hardly know he was even tic-ing if you were not paying attention.
The frustrating part for us is that Tourette's waxes and wanes. He may go weeks with hardly any symptoms and then it all starts back up again. It is like reliving the onset over and over again. You think you are prepared but there is a small part of you that is thinking. "Maybe that's it, maybe God healed him or maybe this has all just been some strange fluke. Perhaps we all got it wrong and Isaiah does not really have this." And then... here we go again...
Beyond the tics there are a number of other things that go along with Tourette's. OCD, which Isaiah seems to possibly struggle with as well. But most discouraging for us has been his emotional well being. Isaiah has always been our most compliant child, always easy going and even tempered. He kind of just goes with the flow. He is quiet and has, for the most part, been a happy little guy. Now he is like a different kid. He is now suddenly a perfectionist and if things are not "just so" he cannot handle it. I could give you many examples of this. Like the tics his emotions and perfectionism seems to come and go in bouts. A situation will arise that I think is going to cause an emotional break down and he handles it without a problem. The next thing you know a page he is coloring wrinkles and it is as if his whole world has fallen apart. And thus this part of our lives is a constant up and down... a yo-yo effect. We have prayed over him, rebuked Satan and done all we know to do. But Jarrod and I both believe, without any wavering, in God's sovereignty and his perfect plan. I admit my faith is not always where it should be. But if I stop for even a moment to consider whether or not I believe God has his hand right in the very midst of all of this I can say with complete confidence HE DOES!
This past weekend was a particularly bad one with Isaiah. It did not take much to upset him and trying to find a balance between showing him grace and requiring the same amount of self control that we expect of our other kids is difficult. I also love him to ity-bity pieces and seeing him deal with something I do not understand chips off a little piece of my heart every time. Jarrod and I both have said over the months that, at times, we feel like we have lost our Isaiah. He comes back. And then, just like that, without warning... he's gone again.
Sunday morning I was standing next to Isaiah at church. I love me some good Praise and Worship and I was just singing away...
"Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name..."
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name..."
Suddenly, I was singing the words my heart was so not ready for.
"You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name."
You give and take away
My heart will choose to say
Lord, blessed be Your name."
It was so literally where we are. We experience, sometimes daily, what seems like this giving and then taking away. As I posted last week, God has been working on my faith... no doubt he has used Isaiah's Tourette's to do this. I know that I fully believe God can heal him. I also believe God can and will use this to glorify Himself whether He heals Isaiah or not. I suppose now He is working on the choice, and it truly is mine, to say "Blessed Be Your Name. Thank You when I have my Isaiah back and things are 'easy'. But thank you also sweet Jesus when you 'take him away' again. You are still worthy of my praise. You have not changed just because I do not understand you." Is He a good God? Is He a God who changes? Then tomorrow when I do not like my circumstances is He still indeed a good God? Then Blessed Be His Name!
We use to play a game in the car when we were kids. We would put our heads in our laps close our eyes and chant. "We're not there yet, we're not there yet..." Occasionally my dad, who has a great sense of humor (and is a little obnoxious with it from time to time), would stop somewhere that was not our destination and we would excitedly throw our heads up and exclaim, "We're there!" Only to find out we were somewhere in the middle of a street! I feel like that sometimes with whatever God is trying to teach me. "I'm not there yet, I'm not there yet..." I do not believe God is quite the prankster that my daddy is but I do prematurely proclaim "I'm there" sometimes and then I have to bury my head again and start over. In regards to always without fail in the midst of my personal heartache saying to God "Blessed Be Your Name". I can say right now with conviction "I'm not there yet!" But by golly, I AM going to get there eventually.
Blessed Be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
You give and take away
My heart will choose to say
Lord, blessed be Your name
This was beautifully written! I have Tourettes, Generalized Anxiety Disorder, and OCD tendencies myself. I remember when my mother sat me down and told me about my tics as a child after taking me to a child neurologist. I felt like I was broken, like something had gone wrong when God made me, but He didn't care enough to fix me. I prayed night after night (and who has faith like a child?) that God would heal me, but he didn't. Eventually, I began to grudgingly accept that I was different from others, but wanted to discuss it and admit it as little as possible.
ReplyDeleteWhile I was diagnosed with a tic disorder as a child, it worsened into TS when I started college. (Only about 15% of children wtih tic disorders or TS do this; the other 85% seems to see improvement by adulthood.) I also deal with anxiety attacks. God has moved me, however, from seeing myself as broken. Even as a teenager, I always wondered how a man could love every part of me. Who could love my disorders? Would anyone be able to put up with them? God sent me a man, however, who doens't love me in spite of my disorders, but loves me as a whole. I've realized that having my disorders has been God's ways of sculpting me into who I am. For some reason, I wouldn't be able to serve God the way I can without them. Your little guy has quite a journey to go on. He's so blessed to have such supportive parents. By God's grace, he'll learn to see how much God loves him, and how he'll never be alone. Thank you so much for sharing! I'm looking forward to reading more on this blog!