Dalia showed me you don’t need to speak to make the loudest impression in the room. She showed me you can have awesome dance moves even when all you can move is your shoulders. She taught me that sometimes the goal isn’t to find the light at the end of the tunnel but instead to make the tunnel itself as beautiful as possible.

There are other kinds of grief, variations that are even less universally understood or acknowledged. One of these is ambiguous grief, which can feel just as cloudy as its name suggests.Adding insult to injury, the person suffering from ambiguous grief might not even be aware that it’s an actual thing, let alone something they’re struggling with.

When I was young, my father used to tell me that “the principal purpose of the human body is to keep one’s head from rolling around on the ground.” We were not an athletic family. Ping pong was my parents’ sport of choice.

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Inside, I’m still the mother of three children, the mother of a daughter, the mother of a child with a rare disease. But my outsides don’t match my insides. If all these things defined me, who am I now? Have I reverted to who I was before Dalia was born? I barely recognize that carefree person.

We’re supposed to be grateful. Research shows that gratitude can enhance both our physical and emotional health, improve our self-esteem, and make us happier overall. It can help us sleep better, too. Yet how can we give thanks for what we have when we’re in anguish about who we don’t have?

I’m guessing you’ve never heard of my daughter’s illness.I’d never heard of it either, until that snowy day, 12 years ago, when my husband, my father and I squeezed into a geneticist’s tiny office and he broke the news that would forever split our lives into a “before” and “after.”

You make 18 trips to Target to buy all the essentials and clean your house until it's essentially unrecognizable. You consider putting your house on the market because it will never look this good again, but you realize you don't have time...you've got a party to plan. You spend seven hours crafting the perfect playlist, enlisting your 12-year-old to make sure it's cool.  The guests begin to arrive at 3 and the first ones leave at 5. The party that you planned for four months is over in 120 minutes.

The first time I went to a friend’s house for Christmas Eve, I felt like I was visiting a foreign country. The huge Christmas tree in the corner of the living room beckoned to me with its twinkling lights and metallic ornaments. I kept a safe distance, feeling like audience to its majesty rather than participant in its ceremony. 

When I was in high school, the three-year-old sister of a friend of mine died. My friend took a few days off school, which gave me time to obsess about what I’d say to her when she returned. She was my first friend to experience death up close, and I didn’t want to get it wrong.

I was terrified. But instead of living in fear, I started to live with fear. I saw that it was okay to let down my guard for moments or even hours at a time. Fear could be on one side of me; it wasn’t going to leave entirely. But hope or happiness or even laughter could be on the other. If I needed to hover in the corner, I could hang twinkly lights and bring a cozy blanket and a great book and a glass of wine into my corner. I’d make it a beautiful corner.

You hunkered down, you wore your mask, you bathed in hand sanitizer. You were vaccinated. At long last you were promised a summer that would feel normal. You went back to your favorite restaurant and went on the vacation you cancelled last year. And then you found out that one of the vaccinated people you met for dinner tested positive for Covid. You are consumed by confusion.

The third time was supposed to be a charm. After all, if I could plan a bar mitzvah for my son with ADHD and a bat mitzvah for my daughter, who is severely disabled, then surely I’d breeze through my mainstream son’s entrance to manhood with aplomb.

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Shawna was 23 years old when we first met her. She looked like a Kardashian, had a cool and tough veneer like Angelina Jolie mixed with a bit of Ronda Rousey, and possessed the patience, understanding, and commitment of Anne Sullivan. She was a fierce girl with a heart of gold. I never would have thought she’d become my 10-year-old daughter’s best friend.

I hadn’t realized there was a name for what I felt.  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.