Last weekend Tim and I attended a regional conference in Portland organized by the Osteogenesis Imperfecta Foundation, an organization that supports those living with brittle bone disease. I didn’t really know what to expect, and to be honest, I can’t say that I learned anything mind-blowing with regard to Jack’s condition. After all, I scoured every corner of the internet to find information on it within the first month after his diagnosis so I feel pretty informed. Still, it was overall an pretty awesome experience for a number of reasons.
First, the presenters were primarily medical professionals who treat individuals with OI, far more OI patients than any of our providers treat. Many of them have a particular passion for this tiny segment of the population and for finding treatments that will improve their quality of life. They’ve also been involved in some of the groundbreaking research that has enabled certain “experimental” treatments to become mainstream. So mainstream that our doctors here in Boise knew precisely which course to take, a course that has enabled Jack to far exceed our expectations for mobility and fracture reduction.
We had several opportunities to sit down with a few of these doctors and just pick their brains on the best course of action to take with Jack in the future, which armed me with significantly more information than our local providers have been able to give. Our providers have been great, to be sure, but having treated a much smaller population lack a breadth of experience that I felt these medical professionals had.
Second, it was fantastic to see other individuals with Osteogenesis Imperfecta with a wide variety of health limitations. Several people did not even appear to have the condition, aside from a bit of stunted growth perhaps. But they could simply pass as short. Others were what I would describe as stereotypical – with pretty much every indicator of the condition. Some were wheelchair-bound, others spend a portion of time in a wheelchair but could also walk, one little girl even sported a pink cast for her most recent fracture. It was heartwarming to see how resilient these awesome people are – their commitment to maximizing their lives and improving it for others with the same condition. Several are faithful attendees of these conferences and have a deep commitment to raise awareness of OI so that this disease does not go ignored by the medical community simply because of its rarity. They are weak in bone but strong in spirit. They are truly inspirational.
A small number of them had a bit of a chip on their shoulders (understandably). They had been treated as guinea pigs in the early days of their disorder, and were weary of participating in studies that may/may not be beneficial to them (or anyone else, for that matter). They’re tired of the pain, tired of doctors who don’t understand, tired of insurance companies and hospitals bickering over who should have to cover the cost of their care. It was sobering to see their struggles and to feel their frustration. It filled me with an enormous sense of compassion for the crummy hand they’ve been dealt and equal admiration for how they weather it all with grace and grit. They are a special group, and they deserve every bit of praise for enduring their condition so resolutely.
Finally, and this was the benefit of attending that most surprised me, I was renewed with a sense of gratitude for the factors in our lives that have made this whole OI experience much easier to bear. We talked with several parents of kids with OI. One family, in particular, approached us and asked us a bit about Jack (who was not with us). They said, “We couldn’t help noticing based on some of the questions you’ve asked during the presentations that you have a son with OI. How old is he?” “Almost two,” we answered. “Wow,” they replied. “How are you doing?”
It was spoken with a tone that implied the heaviness of the diagnosis, an offering of deep empathy and support, and a slight skepticism that one could be doing well under the circumstances. And, to be fair, their son appears to have a more severe type of OI than Jack does, though his initial diagnosis was pretty much the same. When we indicated that we were doing great, and we showed them a video that my sister Jill had sent us the day before (she was helping my mom take care of the kids at home), they were baffled. Not so much at the video of Jack jumping and dancing around our family room, but that we were so okay with the fact that he has brittle bones. It sort of caught me off-guard.
Certainly, those early days and weeks after Jack broke his femur were some of the most difficult of my life. Occasionally, they almost feel like a dream. I can reflect cognitively on how challenging they were – the strangeness of caring for a newborn with a spica cast, the fear of mishandling Jack and wondering whether each prolonged crying session meant he had broken another bone, the foreboding thought about what the future might hold for Jack and how that would change the dynamic in our family. It was tough stuff, to be sure. But even as I think back to those days, I can’t really feel the pain – I feel mostly gratitude.
They say hindsight is 20/20, but even as I was in the thick of my experience breaking Jack’s femur and all that followed, I was surprisingly lucid despite my incredible fatigue (I was, after all, a 38 year-old mother of a fragile newborn and four other kids, to boot. Bone-tired, I tell you.) I had the presence of mind to process all the medical jargon the doctors were throwing at me, to keep my head when they confirmed the worst of my fears, and to put on a happy face for my kids when we had to explain to them what it all meant. I wrote down a list of the “tender mercies” I could see – evidence of the Lord’s love for me and His assurance that all would be all right. There were too many “coincidences” to be coincidences. He was mindful of us and assisted us in viewing this whole experience with an eternal perspective – a gift that I don’t think I fully appreciated until we talked with this couple at the OI conference. I shudder to think of how harrowing their own experience had been, without the perspective a firm belief in God and his eternal plan gave us.
I also could not reflect on those early days without appreciating the overwhelming support we received from our family, friends, neighbors, and church congregation during the weeks after Jack’s first hospitalization (and beyond). One of our next-door neighbors was devastated by the news, reflecting on it again and again, and took the time to bring us meals and shovel our driveway despite the multiple heart attacks he had suffered in previous months. Several sweet friends from church came in and cleaned my house, a service initiated by a mother whose own significant family trials at the time were swallowed up by her selfless desire to lighten my load. A few of my mission buddies, who live from Washington D.C. to Hawaii pitched in for gift cards so that we could buy pizza, which we did for months and months afterward – thanks to the generous sum the cards contained. I did not cook a single dinner for a month thanks to meals brought in, I didn’t have to purchase diapers for four months, my kids got rides to school without my having to lift a finger for who knows how long, people did my laundry, they referred me to medical resources, they fasted for us, they prayed for us. The hours others spent on our behalf by those far and near was innumerable. And it was truly humbling.
So, when this couple asked how we were doing, it was eye-opening for me. It made me wonder at the enormous burden that was eased immeasurably by the service of those around us. And it also reminded me what a gift it is to know that this life is simply a small portion of eternity, that our experiences are opportunities to learn and develop Christlike attributes, and that Christ Himself rose from the grave so that our imperfect bodies may one day be resurrected.
So how are we doing? Thanks to that knowledge, and the many loving individuals who serve us daily, we’re going to be just fine. Mighty fine.
