One thing is a given in our world and that is change. It can be for the better or for the worse, but change will come. We will either welcome it, as we did with our son's mental health stability, or we will tolerate it because we have to; as we did with the symptoms that came along with our daughter's kidney failure five years ago.
It's helpful as parents if we learn to change with our circumstances. It's helpful as a mom and it's helpful as a couple because doing so brings us some sense of peace in the knowing Things. Will. Change. The thing is; they change for everyone. What's makes us so different from everyone else?
The change, a lot of times, can be big, life-altering change. That's true of learning your baby or child has an incurable disease, it's true of learning there are certain dreams you had for your child that will go unfulfilled and it's true of a new symptom or treatment. Change is inevitable, but when life-altering change happens in the world of parenting a child (or two) with special needs it somehow seems easier to think of the ever-present change as normal.
Change is always present. We've grown so accustomed to it that it's become a sort of cloak of armor that we use to sure ourselves up for whatever is coming next because whatever it is might mean life-altering change.
Change is our one constant.
In March we'll be celebrating seven years of my son's new kidney (can I call it new anymore?); his so far, successful kidney transplant. For about nearly five years we'd asked to reduce or stop the steroids he was on and for five years the answer was "no." They said, "He's hardly on any, and it's probably not impacting him at all." or "It's not done. Not a good idea." The thing is, 60% of the people on prednisone after transplant do not need to be on it and the only problem with this is that you don't know what 60% so many centers put all of transplant patients on it. Luckily, our daughter was part of a study and received drug infusions eight weeks after transplant and at over four yeas since her transplant, she's not needed steroids. Since they are genetically similar, we decided it was a good risk to advocate for our son stopping the steroids.
Two years ago we asked again, and after five years of asking, our care team finally relented.
We're not 100% sure of what kind of impact steroids had on our son, but we're fairly certain it has had some impact because no one can tell me they've had a good experience being on steroids. People have told me they rage, they're angry, mean, emotional. Those are just about all the things that our son felt, amplified, the year (and next couple) after transplant. It was no small change for him, for us; the contemplation of him being steroid free.
The team performed a biopsy to get a baseline and watched his labs, weekly, for six months. The biopsy, the wait, the removal of the drug and the waiting and testing and waiting and testing. And waiting. Waiting for change is normal for us and over those next weeks (months?) it was important for me to remember that this is one of those things I couldn't control. It'll either work or it won't but I couldn't control it.
He successfully came off of steroids but at the time I wouldn't have been surprised if he had to go back on them because either outcome would not have surprised us, because rarely does something surprise us anymore.It's safer to know that things will always change. We just never know if it will be for the better.
Julia Roberts co-founded Support for Special Needs in 2010 for families touched by special needs. Married to Julian and living in Atlanta, Georgia, they own a small business. They are raising two kids who survived kidney transplants at age eight and require liver transplants in the future as a result of ARPKD/CHF, they also both have vision disorders and learning disabilities.