Reminiscing about JDM and 3 1/2 years .... pictures now and then.....

The JM Mom's and Caregiver Page on FB has got me thinking today. 

For one I was motivated to post a couple of pictures of Connor. One from when he was first diagnosed and being treated in the Hospital and one from just yesterday. JDM is a life sentence for now until there is a Cure, but for those who are newly diagnosed there is also a view into this life that shows it goes on and even if it is a roller coaster of ups and downs our kids will not always look the way a high steroid treatment makes them look.

Now there was also another post that asked the Question what are our biggest fears or worries since the Juvenile Dermatomyositis Diagnosis. This one is easy to answer but with a painful feeling inside:

My biggest fear is loosing Connor to this Disease. The next worry after this is if he can survive it and fight it all his life then what impact will it have on him throughout his life? 

Will it hold him back to live a 'normal' life? 

Will it stop him to pursue certain dreams or jobs due to this limitation?

Am I doing a good enough job to teach him that while he has JDM it will and should not rule him?

That he can go out and search for things that will full-fill him and make him happy and can he ignore that disease even if the daily medications and weekly shots might be a passenger for him for the duration of his life?

I think we as a family are making a great effort to do just this. We travel, we play and we find the things to do that he is able to do. So while he will never play Football or might never get to go on a Roller Coaster, neither of these are things a human needs to feel great and have fun.

As I tell him daily. His greatest gift and power comes in the form of his brain. It can be his best friend or biggest enemy.

That part goes for all of us. Same for Alexander and his ADHD. Same for me.... I can chose to see the good or focus on the bad.

So easy to type and not always to do....

Hugs,

R A C A