That old adage is true: There’s nothing worse than losing a child. I discovered this a year ago when we laid our beautiful daughter Rachel to rest after a long illness. She was 28. Having lost parents and in-laws, I thought I understood everything about grief. I was wrong.
Over the past year, I’ve learned things about losing a child that have become touchstones. Though I’m still grappling with my new reality, I feel compelled to share some observations that provide a partial answer to thoughtful friends and family who frequently ask: “So, how are you doing?”
Grief is visceral. Sometimes just seeing a photo of Rachel triggers stabbing chest pain. My already sensitive skin flares up more often. And I get choked up unexpectedly, when something reminds me of Rachel. Most days, my mind and body seem utterly numb. It just doesn’t seem possible that I have outlived my daughter.
There’s no timetable for grief. When I was younger, I thought that people “get over” their grief with time. I’ve since learned that we get through grief—and now realize that it’s an entirely personal process. I know my anguish will never disappear, but this first year has been particularly raw.
I’m not alone. Since Rachel died, I’ve learned of many parents—more than I could have imagined—who have lost children to illness, miscarriage, trauma or suicide. During shiva, one father whose young daughter died from a rare disease uttered three words that I’ll never forget: “It changes you.” My new bond with bereaved parents is at once horrible and a comforting wellspring of empathy.
The capacity for human kindness knows no bounds. We have notebooks and boxes overflowing with reminiscences, sympathy notes and donation cards from friends and family and from people who never met Rachel. A year later, the outpouring continues. I’ve lost track of the number of people who have run marathons and given tributes in Rachel’s name.
I can’t help but be consoled by these gestures. But most of all, it’s the spontaneous hugs and compassionate words that sustain me.
Perpetuating a child’s memory is a full-time job. I used to think it wasn’t polite to discuss someone’s lost child. Now I feel driven to enlighten people about Rachel. I want them to grasp how hard she fought to live a full, exuberant life and inspired others to do the same. That prompts me to write and talk about her and take on projects in her name.
Love can triumph over bitterness. I know I have every right to feel envious of others whose kids marry, start families and build careers. Sometimes I do. But so many people loved Rachel and share their heartfelt empathy. Is it fair to begrudge them their joy? No one can ever take away the profound love we have for our daughter or her love for us. I suspect she’d want her parents to move forward and to celebrate others’ joyful milestones. But surely Rachel would also give us a loving pass when it’s suddenly too painful to party with friends. That’s grief for you. I’ve learned that it’s never static, especially when it comes to losing a child.
Judy F. Minkove is a senior writer at Johns Hopkins Medicine’s office of marketing and communications.