Weight

Carrying something heavy isn’t in and of itself a painful thing. Really, the pain only comes as the weight is added or lifted, as bone and muscle shift to accommodate the burden or its absence.

Caroline had her first seizure about three and a half years ago. Since that moment, I have carried her condition and all that came with it –hours pulling her in a little red wagon in laps around the seventh floor of Children’s Hospital; combing glue out of her hair after every EEG; watching the anesthesiologist at Mayo carry her, woozy from a sedative, out of the nurses’ station to her surgery; unspeakable anxiety, loneliness, isolation; fighting for her, fighting with her, fighting just to remind myself I still could.

During the time this weight was first being lowered onto me, my heart registered each additional brick, reshaped itself to take the new pressure  –I’m sure all four of its chambers back then were small rectangular hospital rooms with IV poles and call buttons.

But now she’s doing well –extremely well, actually. She still has developmental delays and may never completely catch up to her peers, but she’s happy and musical and chirpy and affectionate. She can go to playground camp or school or Grandma’s house without my having to be with her the whole time. She still needs me, but she doesn’t need me so constantly. Good. Of course I say good.

But as this weight is finally being lifted, I’ve become aware of it again for the first time in a long time. My heart is already starting to remember what it once was, its natural shape, and has begun work restoring itself.  The IV poles have been wheeled into the hallway to be taken away, the call buttons are disconnected. One day soon those chambers will be familiar places again –a cabin at Camp Lake Hubert, GramBea’s Cooper Avenue house, my dad’s garden, my first apartment. I look forward to that, but while it’s under construction, it’s a big mess and hurts like hell.

My heart is already starting to remember what it once was, its natural shape, and has begun work restoring itself. 

The thing I worry about, the thing I have been worrying about as I pack to leave this house in a couple of weeks, is that even if this weight is one day completely lifted –even if my Caroline grows up and is able to drive, work, live independently, find love that fulfills her, and friendships that feed her –my heart and mind will not remember how to be without the weight of her illness and need. I worry that when the dust clears in the chambers of my heart, one of them will forever be a small rectangular hospital room with an IV pole and a nurse’s call button nobody ever uses.

As we have been looking at houses to potentially buy, we have seen some bizarre renovations and additions, evidence of people trying to adapt old houses designed for one kind of living to modern families committed to a new kind of living. I applaud the effort, really; I’m all about preserving the beauty and character of the past whenever possible. There’s something rather lovely about people determined to gently tug their old houses into the future with them. I like the idea but it has to be done so carefully, so expertly, to effectively reconcile what’s already there with what you want to build now.

But maybe I could do that as I tear down my hospital rooms. Maybe I could use the old bricks for a fireplace in the cabin, a patio at GramBea’s house, pavers in my dad’s garden, a thick kitchen wall in my old apartment. I would still be carrying them around with me as I have been, but on my terms, beautifully, a reconciliation of what’s already in my heart with what I want to build now. A heavy thing …but not a painful thing.