After the time change last week, my morning commute now begins in the dark. I don’t much like it…my drive is on curvy country roads, and I have to concentrate more in the dark. But as the sky began to brighten one morning this week, I remember feeling grateful, not just for that day’s daybreak, but that we can count on them coming every day.
When I was younger, I took the cycles of life for granted. As I’ve gotten older, I appreciate these repetitive rituals which come like clockwork. It’s actually pretty amazing if you think about it: the cycles of our world are so predictable that ancient peoples could learn them and pass them down to future generations with only the tools of observation and language.
I’m specifically grateful that the Earth’s daily rotation on its axis–a trait not every planet in our solar system possesses–gives us the gift of daily rest. I’m grateful for the cheer of watching the world reawaken from its annual slumber. The daffodils, now fading by the thousands in ditches along my daily commute, were the first bright sign amidst the brown grass of the hope of spring. They have been replaced by the exploding purple of the red bud trees and the majestic white of the Bradford pears, the new stars of this Great Show. I find myself spontaneously smiling as I drive…anybody who spots me, driving alone to work and grinning like a Cheshire Cat might be suspicious of my mental state. But the rhythms of life make me happy, they make me smile. And they make life reassuring and comforting, reminding me that Someone great and good has always been in charge.
“There was never a night or a problem that could defeat sunrise or hope.” –Bernard Williams
Most people remember where they were when they heard about JFK’s assassination or the Challenger explosion or 9/11. But for us parents whose children were diagnosed with HLH, we’ll never forget the date of diagnosis for our children. The diagnosis was so life-altering that it’s seared into our consciousness, forming the beginning of our shared experience.
A parent on the HLH Facebook support page confirmed this recently when she asked if anyone else remembered their diagnosis date; post after post of dates provided her answer. I’ve written about our diagnosis day before, along with all of the important dates leading up to and following it. We’ve already begun anniversarying them, causing me repeated pause as I think about what our lives were like one year ago. At this point last year, we knew Megan was sick, but still didn’t know the upheaval that was coming. That same Facebook page also reminds me how profoundly blessed we are for her remission, as other parents celebrate anniversaries of very different outcomes. I offer them my sincere condolences and then feel terribly guilty, knowing that there is no way we can ever understand why our stories ended so differently.
These sobering reminders leave me feeling both blessed and sad…blessed for our happy ending, sad for others not as fortunate. Guilt won’t accomplish anything, I tell myself. These are the kinds of inequities which pose the big fundamental ‘why’ questions. All I can do is say a prayer for those who have lost and a prayer of thanks for our family. And keep going, determined to never forget how grateful and blessed we are.
“In three words I can sum up everything that I’ve learned about life: it goes on.” –Robert Frost
There’s an old joke about a man on his roof in a flood, who prays for God to save him. Soon, some people come by in a boat and offer him a seat, but he refuses, saying God will save him. A little later, rescue workers in a hydroplane attempt to pick him up. Again he refuses, firm in his belief that God will save him, even as the waters rise. Finally a rescue helicopter arrives, again turned away, though the water is now nearly over his roof. A short time later, the man drowns. When he gets to heaven, he exasperatedly says to God, “I prayed to You, and I had faith that You would save me. Why didn’t You?” God simply responded, “Well, I sent you a boat, a hydroplane, and a helicopter…”
I got a visit this week from a helicopter.
A friend sent me a note which…somehow, from hundreds of miles away…hit the bullseye on a struggle I’m having. Her aim was so dead on that it took my breath away. How did she know, from such a distance, what I was going through and just what I needed to hear? Wondrously, that note was followed the very next day by a note from another distant friend on the same subject. The first note was uncanny; two must be a sign.
It remains to be seen if I can muster the courage to allow these caring nudges to be enough to take the step forward that I’ve known that I need to for awhile. We spend much of our lives wishing for signs to tell us what we should be doing. On the rare occasions that I’m blessed enough to get them, I’d be crazy not to listen. Yet the status quo is a powerful thing. I once read that we only make a change when we’re uncomfortable, whether that’s shifting in our seat or changing our lives. But I got a visit from a helicopter…I’d better hop aboard.
“Chance is perhaps the pseudonym of God when He did not want to sign.” –Anatole France
Our family is celebrating a miracle this Christmas: our beloved daughter’s beat-the-odds recovery from a rare and life-threatening blood disorder. This is sure a good one to have as my first miracle.
When I think about where we were three months ago, where we are today is truly unbelievable. Three months ago, Megan was undergoing chemo. Three months ago, she was in the hospital, immune compromised and being treated for an unidentified fever. Three months ago, her oncologists recommended a bone marrow transplant, after her disease markers began shooting back up. We started mentally and physically preparing to spend the next six months, including this Christmas, in Cincinnati. Now…suddenly…we’re home and together, and for the moment, transplant is off the table.
Her recovery is truly a miracle, as only ~10% of HLH patients avoid transplant. It’s a miracle because even though they told her that she would, she didn’t lose all of her hair. It’s a miracle because I know that not all parents of HLH children leave the hospital with their child, the only thing which mars my otherwise overwhelming joy. At one point, we knew that over a thousand people were praying for her: family, friends, strangers, church groups, members of our new Histio support family. People of many religions on multiple continents were all praying for one 15-year old girl, born on the other side of the world from the family and community who have adopted her with our whole hearts. This one child brought together so many, all unified toward a single purpose. But that shouldn’t surprise me. After all, we’ve heard that story before. It is the true miracle of this season.
“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” –Albert Einstein