Little Nina was laid to rest today; a very emotional day, but one of those horrid events that we couldn’t stay away from. We don’t know Todd and Rosy well—we might have lived a couple miles away for a lifetime and never met, save for the common struggle of having critically ill children. Despite very little history, the shared battle makes for a unique bond.
This a club of unwilling members and no two struggles are alike, but there is comfort and perspective that we draw from someone else’s struggle—sometimes its just the look of unspoken understanding a guy like Todd could give me over a cup of coffee, other times it’s a specific insight from someone like Rosy processing her struggle. A couple of weeks ago, Rosy spoke of a feeling of numbness that had come over her in the midst of the intensity. That gave words to a lot of what’s set in over the last two years—there are moments of emotion like we never imagined—but also stretches where so much is going on that I find myself shutting down and going numb. Because there are things I don’t want to think about.
I go numb when I find myself at a funeral wondering if that will be us someday.
I go numb when I realize that I can’t readily recall the names of all the kids we’ve known of that have died in the last two years.
I go numb when I find myself wondering about whether my son will survive instead of whether he’ll like soccer more than basketball.
I go numb when I’m holding a ruler—because it might lead to me thinking too much about how a tiny 2.6mm shunt is all that’s providing oxygenated blood to his body.
I go numb because I don’t know whether to be immensely proud or terrified when a doctor tells me that the course of treatment is unclear because most kids with Rudy’s condition and his complications don’t survive anywhere near this long.
I go numb when I’m at UCLA and overhear a stoic bald eleven-year-old telling of the double-bind he’s in: “I can’t stand the taste of the chemo, but I also can’t stand to see my Mommy cry if I don’t take it.”
I go numb when the cashier at Rite-Aid asks if I’m OK because my joy over finding a great bulk deal on children’s aspirin has quickly given way to tears because I’m actually wondering if he’ll live long enough to take all of it.
I go numb when I think of how painful it would be for my kids to have to go through what Teddy’s had to experience in losing his sister.
I go numb when I realize that doing everything “right” gives no assurance of any desired outcome.
As one not given to routines, in maintaining the daily schedule of 11 medications, feeds, care and treatments, I start to picture how great it would be to be free of all this…and then go numb when I realize the heartbreak that would entail.
I go numb when I start to wonder about what the end will look like…will we know far ahead of time or will it come out of nowhere?
Sometimes it’s just too much for the brain and heart to process, so perhaps going numb is a defense mechanism that spares us some agony. But I’m also glad that Rosy also shared her friend’s challenge of: “Don’t go numb; just love.” Because that’s something we can do. It’s something we have been trying to do and will continue. It echoes Dr. Rick’s words on the patio outside the hospital last fall as we grappled with the news that no further medical interventions were possible: “Go home and love ALL your kids.”
There’s so much of this we can’t figure out (and never will). Looking at it too long brings no clarion insight and probably just increases the uncertainty and terror. But we can figure out the love part. So that’s what we aim to do for Wilson, Max, Olivia, Rudy and those we encounter around us. If I think about the other families, like Todd and Rosy, that I’ve drawn inspiration from, it’s the courageous act of loving in the face of the heartache that seems to help them survive.
We were struck by the prayer during today’s service that joy would be restored to the Fredeen family—simply because the tragedy seems so overwhelming. But presuming that God’s grace is even more abundant than this, it must be possible. And I suspect the resolve to love and not go numb in all of these circumstances is what helps one limp through with some semblance of sanity and ultimately, joy.