I took AJ to see his surgeon this morning because the site where his G-tube used to be is not healing on its own. I took the tube out at the end of October (shhhh...we told them it fell out) and it has closed down to a pindot, but still leaks just enough to irritate the skin and require pretty heavy bandaging. AJ has sensitive skin like his daddy, and the bandages do almost as much damage as the leaking stomach acid. He has a 3" square area of totally wrecked skin on his abdomen and while he is not very verbal, he can clearly say "itchy, ma! itchy!"
The surgeon says he'll have to operate on my son to remove the scar tissue tunnel formed by the original tube placement, stitch the stomach, the muscles, and the skin, which will leave my sweet boy with just a little 1 cm scar on his belly. But it means another torturous day in the hospital for us.
When the surgeon told me this, I smiled and joked with him and nodded a lot; very agreeable I was. We scheduled the surgery, smiling smiling, and said happy holidays, smiling smiling. We bundled up in hats and coats and mittens, smiling all the while. And when we got to the car my body just collapsed into itself. I sat in the driver's seat as all my muscles assumed their "stressed" position, which my body now knows so well. Within moments I ached all over and my head buzzed.
It's not even that big a deal - none of his surgeries since the first have been big deals. But this will be, I think, the 6th time in the OR for my boy. The 6th time a nurse will take him away down a long hallway, away from us, put a mask on his face, and hook him to a machine that will breathe for him. It will be the 6th time we've sat waiting, fidgeting, drinking coffee, watching the clock, wondering what's happening to our boy. The 6th time I will be brought back to recovery to see him as he wakes up, the 6th time the tears will flow as I see his tiny body in the big bed, tethered to monitors and IVs.
One at a time these are no big deal, these operations. Ear tubes, a small hernia, more ear tubes, this next minor repair...
But collectively, over 2 years time, they are really hard to bear. And I know, we are SO LUCKY because so many people have it so much worse. SO, SO MUCH WORSE. But I've decided that just because other people are suffering more, that does not reduce my own pain. I am allowed to hate this, and I really, really do. Even while I am thankful for the wonderful doctors we have helping our son, even while I am so happy with the wonderful progress my son has made...all the while I still seethe inside when we have to take him back and hand him over for yet another procedure.
It feels quite unfair. Quite unfair, indeed.
