He has started to realize that he’s “different.”
And it sucks.
This morning he asked me why the other kids don’t have vests. And cried when I sat everyone down this morning for his treatment time. He yelled, “I am MAD at my vest!”
Ugh. It was all I could do not to break down.
This is just another aspect that we’ll have to work through. He knows he has Cystic Fibrosis, but it’s just starting to occur to him that not everyone else does – well at least that his other little daycare friends don’t have it. That they don’t have to wear a vest. That they don’t have to use a nebulizer. That they don’t have to take pills every time they eat.
Beyond his daily treatments, he is just like every other kid – healthier than most other typical two year olds I know. And as hard as we put our emphasis on the “normal stuff,” the abnormal parts of his life are becoming more apparent to him.
The hardest part is having a kid smart enough to realize that he’s different, but not yet able to comprehend the whys or hows. But heck, neither do I half the time.
I don't get it either, little dude. If I could take it all away from you I would. Just be who you are and the real people...the genuine people...will be by your side forever. I've had my best friend for almost 20 years and he loves me for me.
ReplyDeleteYou'll find that too.
Love,
Josh
Oh my heart.. and that beautiful face... i have to admit this post gave me tears... I don't have words, other than i watched my little brother go through it. he didn't understand why he had to get his back pounded and we didn't when all he wanted to do was play...
ReplyDeleteAmen Josh, g-man, you are the most precious baby boy.
Thinking of you Jen.. thanks so much for sharing this...
Jen,
ReplyDeleteI don't usually comment here but have enjoyed following Gavin since he was a baby - he reminds me a lot of my son when he was a baby. He is now 11, with cystic fibrosis, and I just sent him off to boy scout camp for the first time!
You are such a sensitive, fun, creative, caring Mom that I know you will guide Gavin through this! You've probably thought of this but I want to pass on a few ideas that I know have worked for us or others in the same situation. If he has a favorite, or new, computer game that could be used only during treatments it might help take the anger away. Another thought would be that he gets to be in control and pick a favorite TV show to watch during the treatment. Our clinic always told us to offer up choices when ever possible. Maybe 10 minutes ahead of your schedule treatment time offer the choice of "do you want to do your treatment now or in 10 minutes when the timmer goes off?" or "do you want to sit in your chair on on the floor to do your treatment?", etc. Anyway, Love and Logic has tons of ideas along those lines.
Wishing you the best - hang in there as you are doing a great job!
Jen, Wondered if you had seen this article about a study out of Munich. It shed some light on previously unknown aspects of MS.
ReplyDeletehttp://www.dailyrx.com/news-article/nerve-damage-ms-patients-12569.html