This was a big week in the history of our family: a momentous week, a milestone week, a historical week. This is the week we took a giant step toward getting our family back, healthy and whole. While I know all of that, I’ve struggled mightily to see it that way.
In the sixty days since Megan’s diagnosis of HLH, a rare disease where the immune system overactivates and attacks healthy cells and organs, we’ve known that a bone marrow transplant (BMT) was likely in addition to the chemotherapy which saved her life. Chemo is pretty life-impacting, but pales in comparison to BMT. We’re shifting from a two month hospital stay and weekly drives for chemo a few hours from home, to a minimum six month hospital stay 700 miles away. Minimum six months. I’ve been totally overwhelmed since I’ve known that was a possibility. Two weeks ago that possibility upgraded to arrival in Cincinnati this week. It was nearly impossible not to become gloomy thinking of every “last” as we went through them before we left: last dinner together as a family. Last game night. Last belly laugh with all four of us. I know I robbed myself of some of the joy of these moments by thinking about them that way, but I didn’t have the strength to stop myself. My grief at their loss was too great.
As we drove the ten hours toward the adventure none of us chose to have, I tried to use the time to reframe my thinking. I’m going to go crazy if I focus on the losses…I simply have to learn to focus on the gains. And they are there, if I but pay attention to them. As I alternate between home and hospital in different cities, I will get a lot of quality time with each daughter, at an age where that can be difficult to carve out. When it’s just the two of you, more quality interaction happens because you depend on each other more. I can even thank our first hospital “practice run” for teaching me how to maintain a positive long-distance relationship with my husband. An experience like this makes it incredibly easy to ignore the small crap we unfortunately too often get after each other for. And though I can’t wrap my arms around him when he needs it, I can avoid his stressors and be supportive from afar. But most importantly, and the only reason to endure this horrific ordeal at all, we are going for a cure for our beloved daughter. We have known from the beginning that we really would go to hell and back for that.
I’ve learned that many BMT patients celebrate their “re-birthday” as the day their life started again. Because she’s adopted, we missed Megan’s original birthday. We’ll be right there with her for this one, as she gets this new start on the rest of her wonderful, healthy life ahead. That’s truly something to look forward to.
“Faith is taking the first step even when you don’t see the whole staircase.” –Martin Luther King Jr.