I hate to admit it, but I've been putting off the calls to the other health care teams regarding the kids.
We've been "stable" in the house for about a year and a half now, with the exception of our normal 4-6 hospital stays per year for various reasons connected to their immunosuppressed selves. It's been so nice to not deal with The Next Big Thing, or even the dentist recently, for that matter.
After dialysis, 2 kidney transplants (one for each kid), a mental illness hospitalization, and two years getting our family put back together to have some normalcy I've enjoyed the break from the trauma of it all. We've kept the appointments we've had to and that is it; we didn't offer up the kids for any extra specialists.
But today I had to make an appointment with the liver team. It's time to talk about The Next Big Thing. While they are not going to need liver transplants anytime soon, they are on the horizon and it's time we start to talk about when.
There is no real down time because it is not as though I can magically forget these things exist. The appointments that need to be handled are always in the back of my mind, ready for the sliver of time to fit them in between walking through the world in our normal.
So next Tuesday, the kids will miss the morning of school and we'll get up early to be the first ones at clinic after we stop for a bagel. And we'll talk about another organ that both of my kids need. There is something so familiar about this conversation...
Julia Roberts blogs at Kidneys and Eyes and co-founded Support for Special Needs, a social network for families of kids with special needs. A lover of Vintage Photos, she also owns Slice of Crazy Pie, which sells fun and cool stuff in support of special needs.