Little Belle

Today we had an interesting day. I have to start by saying that for a while now, probably the past few years Belle has been showing signs of having a Tic Disorder as well as a slight speech problem (stuttering). I know that some of the actions associated with stuttering and tics is pretty common and normal at young ages and so I let it go, hoping she would grow out of it for her sake! But around the age of 5, it was apparent they were here to stay. I had her evaluated right before she turned 5 and they determined that her speech fluency (meaning how well she can get a word out) was a bit of a concern, but to not worry about it that that time because Belle was completely oblivious to it and it wasn't hampering her ability to do anything. Plus, bringing it to her attention would only make her aware of it and it might be worse. So, again, I let it go.

Fast forward to now. She's almost 7. And while her fluency and stuttering aren't TOO bad, her tics are! She saw a neurologist a few months ago, who said that same thing... yes, she definitely has what is called 'Chronic Tics' (which he described as Tourettes, but without the vocal tics), they weren't bad enough to elicit treatment. He said to come back if they are causing her pain, he sited for example if she were flinging her head back and causing neck pain. Or is they were hampering her ability to concentrate or do everyday things, or if she was becoming increasingly self conscious of them.

That time has come, and today it came to a head. They have been getting worse and worse. They are DEFINITELY hampering her ability to do everyday things. They are also causing her pain (one of the many tics she has is she shrugs really hard to one side, then really hard to the other then shrugs both sides really hard together. Today she was complaining of neck pain and I didn't know why, until I saw her do it for the millionth time and it clicked! She did it so hard she almost made herself cry because it hurt so bad. I gave her a shoulder rub. As she gets more and more she is becoming very self Conscious of them.

After the shoulder rub, we had a 'talk' on her bed. We listed all the tics she currently has so I can bring it back to the neurologist(they change every few months) and until I wrote it down I didn't realize how many there were! After she listed them she said something that really broke my heart! I wrote it down. This is pretty much verbatim what she said:
"Before tics my life was better, I could remember things fun that I did all day. But now my tics make my life foggy. It makes me mad in my head that it happens all day. I wake up and each day is here and then the day is gone really fast and I all I remember are having tics all day long. They get bigger and bigger and bigger and they can't stop." She was fighting back tears through that whole little speech, which was even more sad!
I tried to make her feel better by saying that everybody has things about them that are hard. Some people have harder ones then other, and that's okay. I mentioned a few people she knows and told her things that they had. I told her that I had tics and stuttered as a kid and mine were really bad like hers. Then I made the mistake of telling her (I thought it would be helpful) that I still have them even today as a mom. (She has a friend who stutters and another friend who had tics, and I told Belle that I had BOTH those things as a kid and still today ans SEE, I turned out okay!). I was trying to make the point that even with those things, I'm still a good mom, I can still go do everything I want to do, and that having little problems like that don't curse you into being bad people. We are all just like everyone else... well, as soon as I told her about ME, she actually couldn't hold it in anymore and burst into tears, literally collapsed onto her pillow sobbing and she said "Oh no, I'm just a kid and now I will have them all the way until I'm a grown up and all the way until I die like you do!" That of course broke my heart into a million pieces! She'd acted as if I'd given her a life sentence. Which I guess in a way, I sort of have. But there are worse things to have then tics!

I remember as a kid having them SO bad I wanted to die. And stuttering so bad I wanted to die. Luckily as I grew they got progressively less strong. And today I'm left with small tics that I'm still affected with every day of my life and that are physically exhausting sometimes but are also things that nobody would ever see or if they did see, they aren't too weird that they would be noticed as such. I still stutter a bit, but again, it's not so bad that people would even notice. When I can tell I'll have a 'bad' speech day, I usually keep to myself more to avoid situations where I would have to talk.

If Belle has to endure this throughout her life, I hope that like mine, hers tapers off a bit as she gets older rather having it get worse as she gets older (which is entirely possible!) I wouldn't never tell her that though.
I know as she gets a bit older she'll be faced with alot of teasing like I was and I will fall apart at the seams when that happens. Luckily for now, her friends aren't old enough to recognize it for what it is yet. I'll keep you updated when we get in to see the neurologist again.

On a happier note about Belle, she has been wanting breakfast in bed for a while, so I finally did it today. Of course she loved it! Here are a few pics from that.




Also, some of her and Loki taken yesterday. What a giant dog! He went to the vet yesterday for a check up and he's nearly 60 pounds. The vet said that from this point on, he'll gain about 30-35 pounds of just muscle, they said he has a big frame and he will bulk out!