This week is Mitochondrial Disease Awareness week, and it’s also Grayson’s birthday week (the irony that they fall on the same week in September never escapes me). Grayson will be 8 (EIGHT!) on Saturday.

I have such conflicting thoughts about Mitochondrial Disease. Mito has robbed Grayson of so much; his childhood is devoid of any semblance of normalcy. Mito grips every cell of his body- his muscles stiffen and betray his will to relax, and he still violently retches multiple times a day. An X-ray on Monday at a routine follow up with his orthopedic surgeon revealed Grayson’s hip, which was 25% dislocated in March, is now more than 60% dislocated. He will again need major hip surgery sometime in the next year. I suppose I should be used to these awful surprises at “routine” appointments, but they always shake me.

So yeah, there are times when I hate Mito. But, I can’t separate Grayson from Mitochondrial Disease. He is who he is because of the genetic lottery- without the defect on his 5th chromosome, he would be an entirely different person. But because of that defect, he is Grayson, and I love Grayson. Wishing his disease away completely would wish away him, and I won’t do that. If I could, of course I would fix the stiffness, the pain, the joints that won’t stay put. I would do anything if he could wrestle on the floor with his siblings, adding even more to the chaos and noise in our house. I wish he could read, or even just hold a book in his hands for me to read to him. But I would never wish away the pure love and contentment in his eyes when I hold him, the softness of his hands and feet, and his innocent just happy to be here personality.

So I hate Mito, but my son is who is he because of Mito. It’s complicated.