By: Dawn Thompson
When Dylan was 18 months old, we were horrified to learn that he needed to have an MRI of his brain. He was just a little kid, why did we have to think about such things? We didn’t understand…and neither did he.
Nine years have passed since then and he is now turning into a rather healthy young man. By healthy, I do not mean typical. Nor do I mean nothing bad has happened or that he hasn’t experienced significant losses, because he has. Besides a combination hearing/vision loss on one side, he has needed help with nutrition and had a feeding tube placed. He has trouble with his right leg and has a tumor in the lower part of it. He also has migraine headaches which are fairly new.
So by HEALTHY I mean that MOST days are good days (for the most part of them, that is). Not because everything is going well, but because Dylan has learned how to accept his struggles and extraordinary obstacles and compensate the best he can with what he has to work with.
Dylan’s neurologist recently scheduled another MRI of Dylan’s brain. This will be his fifth one. Because he has Neurofibromatosis and tumors can grow anywhere at any time, he is never out of the woods. Because of his neurological hearing/vision loss, they monitor him closely. Because of his new migraine diagnosis they arranged for the test sooner, rather than later.
When I asked Dylan if he had any questions, he said, “No.” I asked if he knew what he would be getting done in a few weeks he said (in his pre-teen upbeat voice), “Yeah, a scan to look for NF stuff…like tumors or something.” And….that was the end of that!
It reminded me of the time the Doctor told Dylan he possibly had a sneaky tumor in his leg. Dylan said, “That’s normal right?” and added with a chuckle, “Well, normal for NF.”
One of the most important things Dylan has taught us is not to worry about all the “what ifs” because if you do, “what is” will become “what could have been.” Yesterday Dylan asked me if I knew what YOLO meant. At the same time we both said, “You only live once.” He smiled a BIG smile. That kid! He is such a smarty pants 
