for our sweet Caleb. While I don’t want to keep thinking about the possibility of Tourette Syndrome, it just keeps rearing it’s ugly head in my thoughts. I, too, don’t want to keep posting about it, but I honestly feel as though posting about it can be a form of therapy. So, bare with me as I may use our blog to post about this more frequently.
I find myself having to hold back tears almost daily when I see the tics present themselves in Caleb. While I don’t want to have a pity party, I feel sad for our son. I hate that his body is doing this to him, and he can’t control it. I hate that as his parents that we can’t do anything about it.
Brian and I have noticed that the tics are making their way to Caleb’s lower extremities, and this makes it ever more obvious that something isn’t right. He’s been having arm/leg jerks since this weekend. When we see tics like these, we know that this means it’s only a matter of time before total strangers will start noticing them. That’s something I’m not ready for. Most of our friends tell me that they don’t really notice them; however, others do. It’s honestly a day-by-day situation, as he has good days and bad days.
However, all of this confirms the fact that we need to find out what is going on so we can be advocates for Caleb, and he can be his own advocate. I find myself explaining his tics to the teachers and people he may see on a regular basis. He had to take the ITBS test yesterday and today, and I had to be sure to let his administrator know that she may see his arm/leg jerks. Did I think she’d notice? I don’t know…maybe not. However, I wanted to be sure that if she did, she didn’t think there was anything wrong.
It’s all just so overwhelming to me, and I’m trying my hardest to keep it all together for Caleb’s sake. I don’t want him to see my crying because I don’t want to have to tell him why. We’ve still held off on telling him anything about this. We do ask him if he knows his body is doing it, and he says that he does but cannot stop. If I could make it stop for him, I would in a heartbeat.
I finally ordered some books from Amazon for us and for Caleb. I’m hoping they come in soon so that I can use the ones I ordered for Caleb to help him understand what is going on with his body. The books I ordered for him are:
I ordered these books for us:
Again, I’m sorry that I have to use the blog for these types of posts. However, like I mentioned, I find it a bit therapeutic. So, I hope that you all won’t mind. Thanks for reading, and please continue to lift up our family, especially Caleb, in prayer. We go to the pediatric neurologist on Tuesday, the 30th. That day cannot come fast enough!
Park City Utah
2 years ago
10 comments:
As a mom of a child with 19 brain operations..I so know the worry and the fear. I will be praying for ALL of you..E-mail me if you need to talk..I can honestly say..I know how hard it can be to wait and wonder.
"However, all of this confirms the fact that we need to find out what is going on so we can be advocates for Caleb, and he can be his own advocate"
You have already given yourself the best advice you possibly could! Hang in there Mama, and don't ever feel bad about blogging about it!
The last book was practically my Bible when my son was first diagnosed with TS. Keeping you in my prayers!
I'm glad that you have the blog to express your fears, thoughts, and feelings, Sherrie. I think you will find support here and possibly some information in your quest to help Caleb and yourself.
Don't ever apologize for what you write--we are here for you in good times and bad. That's what friends do!
Hugs, my friend. I pray you have a positive outcome.
Sounds to me like you're doing the best you can do for Caleb at this point in time. It's really essential for you to be his advocate and to keep yourselves and Caleb informed too. For a great inspirational video that shows kids with Tourette's can grow up to something great, look for "Front of the Class" (it's a book too apparently!)
Just remember we'll be around whenever you need to talk! :)
I know what you feel like...to be constantly posting about something like this. Something so life changing, and scary, huge, worrisome....I know because I feel the same way. I find that blogging about what I go through really helps me to 'work' through it. It is indeed therapeutic. I think people would rather you post about something like this and be transparent in who you are and what you are going through than to hide it.
So keep posting, and we'll keep praying for you and your family as you work through this!
Praying you find answers and the knowledge to handle the situation.
I will pray for you as you work through this and try to find out answers and such. I know that Caleb is blessed to have such loving and caring parents and that you will do your absolute best for him. (((hugs)))
This blog is your outlet, so of course you should post these thoughts here.
I think you are doing everything you can right now - I am keeping you all in my thoughts and prayers. :)
Praying for your family.
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