No, not the book by C.S.Lewis. We've had some bad Mito days here recently. Joseph has been tripping a lot (he fell down the stairs last night in what he called a "mini fall")and experiencing more pain. It has been a while since he's had a day where he couldn't move or get up from his chair. He's been slow going here recently. Hobbling up the stairs, lying on the floor because he's in pain and keeping his head down on his desk because he is exhausted.
Climbing the Sand Dunes in Colorado was difficult for him. He wanted to turn back. Chris and I took turns hanging back with him, pouring water on him and trying to motivate him to make it to the top. He made it. When we all got back down, he thanked us for sticking with him and motivating him not to quit. It brought tears to my eyes.
Yesterday, we were talking about
Currans for a Cure (our team name for the Energy Walk for Life that raises money for Mitochondrial Disease research), and he realized the walk was the same day that he has a football game. He had a small meltdown. He told me that there was no way he could do the walk and then play football. I told him it was a short walk and he said, "You don't understand my pain! If I walk, my feet and legs will hurt so bad I won't be able to play football!"
It is gut wrenching. He experiences pain every single day (doctors believe it is due to the Mitochondrial Disease... (for years his pain (and Sean's) was attributed to Shwachman-Diamond Syndrome, but since the secondary diagnosis of Mitochondrial Disease came along, they now know it is Mito based). It is hard to watch him suffer and not be able to do much of anything about his pain. We can't take it away, we can sometimes make it a little better with medications, but it never REALLY goes away. Joints, knees, hips, legs, back..... chronic pain at the age of 13. Mito also affects many other parts of his and Sean's body, too.
When people see Joseph and interact with him, they would never know how much pain he experiences on a daily basis. They assume he plays football, so he must be okay. Or they assume the pain can't be THAT bad if he plays football. What they don't know is that he has a HUGE desire to play football and motivates himself to play in spite of the pain. Football causes MORE pain. He accepts it, but even I, his mother, have to realize there is a limit-- maybe he can't do the walk AND play football in the same day. *sighs* Those who know him from football will probably have noticed how he tries to keep moving at halftime because if he stops, the pain hits hard.
What he said yesterday was a reminder of the neuromuscular disease he and Sean battle daily. Each one has a different Mito cross to bear. Much alike, but very different, too.
Currans for a Cure is walking on October 15th in hopes to raise money to find a cure for Mitochondrial Disease. Right now, Mito has no cure and no real treatments other than high doses of over the counter supplements (and a few prescription supplements) that help a bit, but are not a cure.
Help us... you can become a virtual walker on our team, a real walker on our team or you can make a donation. Please help support Sean and Joseph along with many others like them. You can also like our Currans for a Cure page on Facebook:
Currans for a Cure on Facebook
