Seven Junes ago,
we moved from the desert to the Pacific northwest. Julianna’s care was getting more and more complicated, so we moved to be closer to family. We left one hundred degree days for sixty degree ones, sand for evergreen, established jobs for uncertainty.
I have moved twelve times since leaving home for college. Moves are always stressful, but when young children are in the mix, they are doubly, maybe triply so. And when one of them is medically fragile, the stress is exponential.
We bought a house with wide halls, because we knew there would be a wheelchair in our future. We installed a power generator, because she depended on a machine to breathe at night. Her medical team was already in place, because I did the research months before.
So many moving parts, because we had to keep Julianna healthy. I didn’t let myself think about the alternative, but it fueled everything I did with a sense of urgency bordering on desperation. I organized and executed because her life — my heart — depended on it.
Six Junes ago,
we were in hell. The thing I didn’t let myself think about was happening: Julianna was dying. I couldn’t face it, but I knew it, deep in my bones and gut and soul. It would have been easier to die myself, but she needed me.
Five Junes ago
was a lovely reprieve. Julianna was dying, but once acknowledged, we lived, with purpose and beauty.
And the next June,
four years ago today, I held her in my arms and told her she could go. Run, jump and play, little one. Go to the place where things are what they were always meant to be. You are free.
If having a child changes everything, losing one changes more.
Something fundamental shifts, and it cannot go back to the way it was before. Grief makes you an alien in your once familiar world. You see, hear and feel everything differently. How could it be that the sun still rises and sets, that gravity still grounds? The seasons continue their relentless march, always onward, indifferent to my split reality.
We’re not supposed to live with one foot in the grave, but is it more acceptable to have a part of your heart there? Love isn’t safe, and she, with her soft pink cheeks and startling, sweet eyes, took a part of me with her. There’s no shame in it, just as there is no rising above or moving on from the death of your child. It just is.
It’s June again,
and time for another move. We’re leaving our comfortable home with its wide halls and pale pink princess room and going back to the desert. It’s a temporary move and much less complicated than the one seven years ago, but it’s been agonizing. It’s hard to leave her last home, the place where she was so happy.
We’re moving so that I can do an HPM (Hospice Palliative Medicine) fellowship. I thought I finished my medical training twelve years ago when I graduated from neurology residency. I didn’t know then that there would be a girl named Julianna, that she’d teach me how to live — and how to die. I couldn’t have imagined surviving the death of my child, and I wouldn’t have believed anyone who told me that hospice would make her last months the happiest of my life.
It happened, though. It all happened, and it has produced and demands change. The second half of my medical career will be spent with families whose lives are upended by serious illness. I know the suffering that comes from fear, and I want to help them face it, in their own time and in their own way. I think it’s what I’m supposed to do.
Four years ago,
my world ended. I mourn it every day, and I take it with me, everywhere and always, for the rest of my life.