I haven’t written here in the longest time. Not because I didn’t think about it, but because I didn’t want to. Our lives were borderline routine (I know!) and we were just….being. I graduated in June and Sebi got a promotion. J was doing her 4-H/bird sanctuary thing, and Jack was…Jack.
In July, the kids saw the pediatrician for their yearly appointments. The doctor and I had a lengthy discussion about some things that were unusually unusual about Jack, and he made a phone call to one of his doctor friends. The friend turns out to be a metabolic specialist who agreed to see Jack the next day. We were seen and he ordered a battery of tests that were completed at the children’s hospital a few weeks ago.
Yesterday, our world was turned upside down, inside out, and backward.
Jack has mitochondrial disease.
**Before we go any further there are ground rules here. Do not tell me about a friend of a friend, whose child went to this hospital and saw that doctor and it’s a miracle. I don’t want to hear it. Don’t tell me how God knew Jack needed us. I don’t want to hear it. Don’t tell us how strong or brave we are. We’re not. And I don’t want to hear it. There are things better left unsaid. Please. Thank you.
What I do want:
1. Prayers. We covet them. But I don’t want prayers for miracles and things like that. I want you to pray that God’s will be done.
2. And with that, please pray that Sebi, J, and I can wrap our heads and hearts around that.
Nothing is really changing in our lives right now. We are not pursuing further testing, because, quite frankly, there’s no difference in the plan of care (mostly because he’s adopted). It doesn’t matter if it’s primary or secondary. The outcome is always the same, and the treatment is the same. He begins the “mito cocktail” later today. Next week, we see an immunologist to find out if maybe there’s something we can do to boost his immunity a bit to help him fight the fight a bit stronger.
He is currently swinging a sword around the bedroom fighting imaginary Star Wars guys. There’s lots of “pew-pew”-ing and the occasional explosion noise.
See, nothing’s changed.