This is a post I put off for a few days. I needed to think about it some more before I wrote.
To start with, we need to turn the Wayback Machine to just over a year ago, July 31, 2009. Nina and the kids returned yesterday from a day trip to see her parents in Cupertino (near San Jose, and Sean is acting oddly — no energy, not hungry, just not himself. We’re thinking he might just have a case of heatstroke; it had been a warm day …
Well, if you’ve been in this space for any time, you know it wasn’t heatstroke. Or a cold. Or a viral infection. Or West Nile. Or epilepsy. Those were all thrown out as possible diagnoses before tests came back almost forty days later with a clear answer: Leigh’s disease. What he had, in short, was a death sentence.
Except he didn’t die. Still hasn’t, actually. I can only attribute it to the hundreds, possibly thousands of people worldwide who are praying for his healing (and if you’re one of them, THANK YOU!), but he’s become the outlier, someone who’s actually slowly recovering from Leigh’s. All the doctors and therapists are thrilled and amazed. The Supermodel and I would be, if we had the energy — taking care of him and helping him in his recovery has been a stressful, exhausting business. But it’s the war we’ve been called to fight, and we’re willing.
Besides, not everyone gets to fight the war. And sometimes, people pray and God has other plans …
Some of you will recall that a few weeks ago, I got a reply on one of my posts about Sean from a mom who’d just found out that her 11-month-old daughter had been diagnosed with Leigh’s. Needless to say, we’ve been in contact ever since, and I passed a prayer request for Annika on to the people who’ve been interceding for Sean all this time. I didn’t know what would happen next, any more than I do with Sean, but I knew God was in control.
Annika’s funeral was earlier today. She passed away last Tuesday, less than three weeks after I first heard about her — and before her first birthday.
I’m trying not to tear up right now, mostly because I sight-type and if I start crying I won’t be able to see the keyboard. But it’s … my emotions are in a stir. I guess being a dude I’m supposed to say something like “it’s getting dusty in here” or “someone’s cutting onions” but we both know better. I’ve been through a lot the last year, but I didn’t have to face what Annika’s parents and siblings are facing, and I don’t know how well I could’ve. Annika didn’t get to spend a full year on Earth; Sean has already spent a year after he fell ill. The time they got to get used to her diagnosis was shorter than Sean’s hospital stay alone.
I’m shaking my head. For all I’ve dealt with, for all that at one point I expected to be where they are, I haven’t been there. I can’t imagine what it’s like.
But there’s a flip side, isn’t there? For all they’ve dealt with, and will deal with, they’ll never have to be where we are.
The letter from Annika’s mom announcing her passing even touched on it:
She won’t have any more doctor visits, hospitalizations, needle-sticks, or tests. With her Leigh’s disease, it was pretty certain that she would have faced much more of all of that.
It’s true — in Heaven there is no more mourning, or crying, or pain, and presumably no more doctor’s appointments or diagnostics either. Whereas Sean is still facing all that stuff. He has a doctor’s visit tomorrow afternoon, in fact, and another physical therapy session on Thursday. He still has daily doses of the “mitochondrial cocktail,” and exercises assisted by his insensitive and determined daddy morning and afternoon. He still has to be hoisted in his wheelchair every day, and propped up in bed with pillows and stuffed animals every night. And his dad and mom and sister have the burden of all the stress that comes with caring for someone who can’t care for themselves. His battle is ongoing; his suffering — and by extension, ours — is far from over.
Meanwhile, in my mind, Annika is crawling down golden streets with a big grin on her face. I probably sound a little jealous. Heck, I probably am.
And yet maybe Annika’s parents are too, of us. For all the work, all the heartache, we still get the reward of his company. We get to see him every day; they won’t get to see Annika again for maybe decades. If they’re anything like us, they’d take on all the hardships we bear for the chance to see one more smile, hear one more coo. I know I would. That’s just part of being a mommy or daddy; it starts kicking in the second you see the plus sign on that plastic applicator. To quote Burlap to Cashmere, “it comes with the gig.”
I don’t know why God had one plan for that little girl, and another one for our boy. I can’t tell you which one is a blessing and which isn’t. I suspect that they both are blessings — that the same Lord who promised He will not give us more than we are able (1 Corinthians 10:13) knows what we, and our kids, can handle and dealt with each of us accordingly. And so I do my best to trust Him with the outcomes, and with the future. Because if I can’t do that, there’s no point in facing the future at all except pure cussed stubbornness. I’m stubborn, but even I’m not that stubborn.
So Annika’s parents grieve with the loss, even as they’re gratefull that their little one isn’t suffering anymore. And Sean’s parents groan under the weight of his suffering, even as they’re grateful he’s still around. We cry, and we give thanks, and we repeat the cycle — in the Supermodel’s and my case, going into Year #2. Life in a fallen world, folks.
(Postscript: I was almost finished with this entry when Charlotte busted into the office to tell me that Sean had managed to fall out of his wheelchair. At least he was able to summon up enough movement to pull it off — but it looks like we’ll need to start using the seat belt again, even when he’s stationary. It’s a blessing, but like all blessings down here, it’s a mixed one. The struggle continues …)