It’s Complicated (Mitochondrial Awareness Week)

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.



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