Good writing, with a strong point and with life oozing out.

Life, Moving On

May 18, 2009

“Hospital for Sick Children” is not only the most obvious and completely genius name for an institution, ever, but also the place where our son spent almost a month between the time when he was recovering from cardiac surgery at the hospital and when he was strong enough to finally come home with us. Indeed, HSC (as it has been recently renamed, in an unfortunate bureaucratic victory) was a home-away-from home for us, since they have a small apartment where families can spend multiple days and nights practicing their care for their special needs infants– to learn about feeding, and schedules, and feeding tubes, and monitors, and alarms, and the strict regimen of tiny doses of critical meds, and to experience the maddening repetition of it all. It was a place to learn about providing something very much like critical care to your baby at home in a compassionate and dispassionate way.

We returned there yesterday for a special ceremony to dedicate a lovely garden, and to honor patients of HSC who have died with the release of as many butterflies. It was the first time we had returned in almost 3 years, and it was nice to be recognized and remembered and to be warmly received. What was less pleasant was to remember how overwhelmingly stressful it was for us to be there the first time. Dealing with sleep deprivation and worry, combined with grave concerns about our child’s health, amplified by the pressure of needing to be a competent and composed caregiver, all stirred together with the paranoid wonderings of just what the staff really thinks of you, was something that made me more than a little crazy at the time (not that I could show it, since I needed to be perceived as completely competent.) So it was a relief to talk to our old social worker and the Medical Director as ourselves, rather than the fragile people painted over with bravado that we used to be.

Without being maudlin or morose, we talk to Ella about her big brother fairly regularly. She knows the name ‘William’, and knows that she has a brother who’s not with us any more. So it felt natural for her to bring a photo of the four of us, and for all of us to have some pieces of cake from the refreshment table as ‘birthday cake for William’. Ella ate some butterfly cookies, made some butterfly crafts, got a (temporary) butterfly tattoo, joined us outside for the (somewhat longish, if you’re 3 years old) ceremony, and helped to plant some flowers. She even joined us as Will’s name was read and we released the beautiful butterfly from its paper envelope.

Yes, it was cheesy, and no, I didn’t become very emotive. Until several minutes later, when Ella was still holding her index finger aloft, looking sad. I asked her what was wrong, and it was clear that the finger was meant as a landing place. “I want the butterfly to come back,” she said with a polite little whine. And I didn’t have anything to say to her, except to shed some tears and sob and say that I’m sorry. I’m sorry, but the butterfly won’t be coming back.

More photos here.

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4 Responses to “Life, Moving On”

  1. MeesheMama says:

    Fly on to beautiful places, butterfly.

  2. Jon says:

    Those last two paragraphs knocked the wind out of me, and I’ve followed the tug to go back to re-read them several times now. Utterly beautiful.

  3. Greta says:

    Oh, my friend.

    Such a beautiful, heart-wrenching post. No words, only virtual hugs, and the promise of a real hug for you and yours very soon.

  4. Adele says:

    Mike,

    I’m taking the time to play catch-up on a few blogs, including yours, and this entry totally has the tears rolling down my face.

    Thank you for continuing to share the journey with us as strangers and friends…

    Adele,
    Pam’s friend in Taiwan

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