I Met A New Kind Of Grief When My Daughter Was Diagnosed With A Rare Disease

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grieving woman

The first time I met grief I was wholly unprepared. I was at work when my father called to tell me my sister Nomi collapsed while playing with her baby. I’d been on the phone with Nomi just a few hours earlier, debriefing about the wedding she had attended the day before.

She had to get off the phone quickly because she was late for her mommy-and-me playgroup. “She’s been taken by ambulance to the hospital,” my father said.

I’ll never forget that my father used the word “collapsed.” I didn’t know what it meant or why it was such a crisis. Even when we checked in at the ER and were escorted into a private meeting room, it wasn’t until I saw my sister’s husband sobbing that I understood. A doctor followed close behind and explained that Nomi had gone into sudden cardiac arrest and died instantly.

My entire body started to shake. Family and friends materialized at the hospital; I have no idea who called them to share the news. I sat in a chair in the corner of the room shaking. I didn’t sob or reach for a hug or call anyone; I just shook. I don’t know whether we stayed at the hospital for 30 minutes or three hours. All I remember is the shaking.

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The next time I met grief, 11 years later, I was waiting for it. My mother’s breast cancer slowly spread over the course of four years. It spread like poison ivy to her brain, her colon, and her bones. She shrunk all over until she was clanking around inside the body that had always seemed too small to contain her huge personality.

“She’s not eating at all,” the doctor quietly told me just outside the doorway of her hospital room. “That’s a sign she’s nearing the end.”

“Then I’ll get her to eat,” I said, because mind over matter.

I sat by her bedside and tried to spoon-feed her applesauce. It was such an obvious role reversal it felt almost cliché. Then she looked at me with the eyes I knew better than my own and said, “Don’t. Force. Me. To. Eat.” Her mouth was so dry it was a bit hard to understand her, but she said it so slowly and emphatically that I understood. She was done.

My mother died one week later. A hornets’ nest exploded in my stomach. The hornets stung me until I couldn’t stand upright. I learned that being ready for grief doesn’t make it less devastating when it arrives.

Over the next several years, I met both kinds of grief again — the one that came from nowhere and the one that waited quietly in the corner of the room, casting a shadow to make sure I knew it was there.

Then a new kind of grief visited me. This time, it was unrecognizable.

When my now 16-year-old daughter was 5, she was diagnosed with a rare degenerative mitochondrial disease, MERRF Syndrome. “Whatever symptoms she has, and whatever ones are silently brewing, will get worse over time,” the doctor told us. The fact that she had mild hearing loss meant she’d almost certainly lose her hearing altogether. Her wobbly gait would most likely lead to a wheelchair.

What he didn’t predict, or at least he didn’t share with us, was that within the next four years she’d lose other functionality, too. By 9, she could no longer walk, talk, eat, or breathe without a ventilator.

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I had two choices: I could curl up in the fetal position or I could help my daughter navigate each change and provide her a childhood with joy and laughter.

Curling up wasn’t a viable option. There was too much to do caring for my daughter and my other two kids, working full time, and nurturing my marriage. And besides, I refused to grieve for my daughter, who was right there in front of me.

So I pushed the sorrow aside. There will be time to sink later, I figured.

Yet sometimes at night, when I was done being strong, I let the sadness in.

I played videos of my daughter so I could hear her sweet voice again. I listened to the songs we’d listened to together when she was younger — the pop ones and the sappy ones. The lyrics that seemed so hopeful then pierced me now. When we grow up, do you think we’ll see, that I’m still like you and you’re still like me? I might be pretty; you might grow tall. But we don’t have to change at all.

I tried to not let the sadness stick around too long. It felt like a betrayal. My daughter was figuring out how to be happy when so much had been taken away from her. I needed to follow her lead.

But the disease progressed and continued to swallow her up.

I learned everything I could about mitochondrial disease and did what I could to spread awareness about MERRF Syndrome. When I was asked to speak on a panel on “Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression,” I didn’t hesitate. Of course, I would participate.

The only problem was I had no idea what ambiguous grief meant.

That night, after giving my daughter a dozen syringes’ worth of different medications and pouring Pediasure into the food pump; after I changed her trach tie and set up the oximeter, and taped her eyes shut because she could no longer blink, I curled up in the armchair across from her bed and started Googling.

I hadn’t realized there was a name for what I felt. I wasn’t shaking like when Nomi died or feeling as if my insides were on fire like when my mother died, so I didn’t recognize the pain that came and went as grief. But there it was — ambiguous grief is mourning the loss of aspects of a person who is still alive.

Now that I knew there was a name for the sadness, I finally felt like I had permission to feel it. I could miss the parts of my daughter that were gone and grieve the life we might have had without giving in or giving up. I felt lighter.

Naming how I felt helped me understand it. It made me feel less guilty, too.

When I was a little girl, I couldn’t crawl into my bed until I lifted up the bed skirt and checked underneath for monsters. One night, Nomi came into my room while I was down on all fours. I told her what I was doing.

“What’s the monster’s name?” She asked.

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“It doesn’t have a name.”

“Well then let’s give it one. We’ll call it Ishkabubel,” she said.

So we did. From then on she’d ask me how Ishkabubel was doing or what Ishkabubel had for dinner. Monsters aren’t nearly as scary when they have names.

There are no rituals around ambiguous grief, no religious ceremonies, or Hallmark cards. It is more complicated than the other kinds of grief I’ve known. But I know what it is now, and that helps.

The irony is that with a name, it feels much less ambiguous.

Jessica Fein is the mother of three whom she and her husband adopted from Guatemala. Her daughter, Dalia, has the rare mitochondrial disease MERRF Syndrome. Jessica writes about raising a child with a rare disease and staying rooted when life tries to blow you down. Her memoir, BreathTaking: Rare Girl in a World of Love and Loss, is in progress.

This article was originally published at Medium. Reprinted with permission from the author.