We went with some of the other little leaguers that play with Aden to the Rough Riders game last night. It was a late night. We parked in handicap to save Daxman some walking, and he did great. This morning, a pic from a year ago (same stadium, same event) popped up on my phone. What the difference a year can make! He is almost unrecognizable.
The difference? …
An Ehlers-Danlos diagnosis and discovery of common co-morbidities (MCAD, POTS). Appropriate meds! A LOT of lifestyle changes. Understanding. Acceptance.
Dax was so sick this time a year ago.. and for years before that. You can tell people how sick he was (is), but pictures say 1,000 words. He has come a long way, and although it is still very hard, we have so much to be grateful for.
A year ago, I remember being so worried to take him out late, worried he would worsen, worried about the heat, worried about what his underlying condition could be. I knew he had something, but what?
I didn't know what he should or shouldn't do? I had no idea how to treat him. I pushed through doctor after doctor, losing a little bit of hope each time. I didn't have the resources or support that he so desperately needed.
It would be about 4mos after the pic on the left that his diagnosis of Ehlers-Danlos Syndrome was given. The co-morbidities are being found and treated in the most knowledge forms possible. It was only 6mos ago that his DNA results came back to confirm. It has only been 8mos, and yet it feels like a lifetime. We live in a different world. What he had didn't change, we just have a name for it now.
Is Dax sick every day? Absolutely. But, he has a greater quality of life, simply by altering how we do things daily. It isn't always easy or convenient, but we figure it out.
It's pretty remarkable.