I’m writing about the wrong subject today, and I’m not fully sure why. I should be writing about “celebration”, following Megan’s sudden discharge from Children’s Hospital in Cincinnati and the wondrous news that they believe her disease is heading into remission without transplant. I should be ecstatic–and I am on one level–but my joy is surprisingly muted. What’s wrong with me?
Our great news was sudden and unexpected. Her oncologist was out of the country last week. When we last saw him two weeks ago, he said he didn’t know which way things would go. That itself was more hope than we’d had, as it had appeared transplant was inevitable for Megan, just as it is for 80-90% of those diagnosed with HLH. I could tell from his body language that he was truly split: the odds of transplant versus no transplant were equal. Things didn’t go totally well the next couple of weeks. An earlier problem flared again, triggering relapse concerns and a visit with a new specialist. Our hopes weren’t high. So we were stunned when the oncologist delivered the good news immediately upon entering the exam room. I had a million questions: about why he was so positive, what did we need to watch for, what were the long-term implications. He seemed happy to linger and answer my questions…I wondered how often he gets to deliver good news. When he eventually left, I was left with the unexpectedly pleasant task of repacking everything I’d unpacked just the day before, as I swapped places with her dad on schedule.
Since we got home and have been resettling into life together as a family again, I’ve wondered why–though I’m very happy–I don’t feel unbridled joy. I know part of it is she’s still not wholly recovered. She’s well enough to be home, but she still takes many medications and will for awhile. She still has an IV line that we have to provide daily care for. A nurse still comes to the house weekly for the many blood tests to monitor whether the doctor’s hunch is right and levels will slowly return to normal, or whether the next virus will cause a relapse, and we will be right back to square one. That is the root of it for me: I’m worried. How am I supposed to feel when she is in between critically ill and healthy? Are we supposed to let her start going to the library and out to get ice cream, or are we supposed to shelter her awhile longer? If not now, when will we be comfortable letting her return to normal activities or school? We don’t want to become paranoid and keep her in a bubble, but damn it, we just about lost her, and it scared us. There is no roadmap for this part of the journey, just as there wasn’t for any of the rest of it.
I don’t want to spend our lives–or hers–in fear, but as her parents, we want to protect her. People don’t understand why I’m not as happy as they expect me to be. I feel like my feelings are in between, too, in exactly the same place as my daughter’s health. We’ll find a path through this as a family, and it will end wherever it’s destined to end. In the meantime, I will give myself permission to feel in between. And I will remember to thank God daily that she is home.
“Life is one big transition.” –Willie Stargell