Five years ago today, I had one of the scariest moments of my life.
Hunter had seizures lasting several hours, with the various initial treatments proving ineffective. I rode with him on two ambulances, and stayed a couple of nights with him at the hospital.
If you haven’t experienced it, there’s not really any way to describe the feeling of seeing your child convulse and shudder endlessly while you watch helplessly, praying and fearing for his life.
I recently ran across a song I wrote when I found out we would be having twins. It’s an incredibly cheesy poem, wherein I fantasize about all the fun adventures I’ll be having with the twins: running around and rough-housing, the projects we’d work on together, the conversation’s we’d have… the fun experiences I’d introduce them to.
Hunter and his twin brother Mason turned eight this year. While his brother is running around and jumping on the trampoline, Hunter is sitting in a chair or laying on a bed, because he can’t move himself anywhere. While his brother is reading novels and writing stories, Hunter is watching TV shows for infants or toddlers, because his brain still thrives more on colors and sounds than on stories and characters. While his brother is helping to make cookies, Hunter needs his food pureed and spoon-fed. While his brother is constructing complex models and creating art, Hunter’s diaper needs to be changed.
Every now and then, I step outside of myself and look at my life, and realize how bizarre it is that I’m spoon-feeding and diaper-changing and putting on baby shows for an 8-year-old. The feeling is surreal.
If you haven’t experienced it, there’s not really any way to describe the realization that all those conversations and experiences you’d envisioned, and that perfect picture of life with twins, isn’t going to happen.
Some people view the existence of pain and loss as a philosophical or even theological problem. Why does God allow these things in life? I’ve never really had that struggle. Maybe that’s because my life has been good, over all. But I think it’s also because, as I’ve gotten older, and have had the opportunity to experience more loss, I’ve come to understand its value.
Pain is valuable.
I’m naturally a self-centered person. I simply would have no concern for the plight of parents with disabled or special needs children if I did not have one of my own. Not that I wouldn’t care or empathize when confronted by it; I would definitely care when I saw it. But I would be able to move on from it, and that would be the end of it. I don’t dwell on things I can’t relate to. The concept of caring for a child with mental or physical disabilities was at one time so foreign to me that I simply would not know WHAT to think of it. It would be like trying to imagine what it was like living in 2,000 BC. I might ponder it briefly, and move on, but it’s so foreign and so removed from my life, that I simply have no way of fully absorbing it.
But God allowed me to experience something I could not have previously imagined. He didn’t cause it, but He allowed it, because good parents understand that if you protect your child from everything, they’ll never truly grow. I would give anything to have Hunter’s brain and body healed, and have him join us on hikes and adventures and deep discussions and tasty foods. And I’ve even cried out to God about it.
But God is good. He knows that without loss, I can’t value what I do have. And without my own pain, I’ll never be able to understand the pain that others feel. He knows that this life is here for a little while, and then gone. And along with it, all the pain and suffering that feels so real and permanent.
The pain will eventually fade, in this life or the next. But right now, we need it. We need it to feel as permanent as it does. We need the empathy it gives us for others. We need the bond it brings to those who share our suffering. We need the fortitude it gives us when we push through it. We need the patience it gives us when it feels endless. We need the perspective it gives us when we see what we’ve taken for granted, and when we see what we’ll always be thankful for. We need the grounding it gives us when it shows us where our priorities should be.
I would never wish pain on others, and I won’t pretend that all pain leads to great joy. I also won’t pretend that my pain is greater than anyone else’s. I have a very good life.
But I know that the person I’m trying to become, and hope to someday be, is a person whose faith, strength, and love could only have been formed through a healthy appreciation for pain and loss. The person I hope to become will understand that sometimes you have to face pain head on in order to get to some amazing things.
For the pain you haven’t experienced, thank God for the protection. For the pain you have experienced, thank God for the growth. Sometimes the pain will feel much greater than the growth. That’s because the greatest growth comes from what would seem like disproportionately great suffering. In that case, thank God for perspective. And if you don’t see it, pray for it.
If I haven’t experienced it, there’s probably not really any way to describe whatever pain you’ve experienced. But I know that our pain connects us and grows us, and I’ve learned to appreciate the value in that.