How Do We Survive When Grief Barges In?

NOTE: This is a reprint of the first column I wrote for the Madison County Ohio Board of Developmental Disabilities monthly newsletter in February 2022. I have made a few edits for it to make sense in this space.

Grief is something we don’t talk about much. But we who have family members with disabilities know how to deal with it. We’ve been handling grief since our family member was first diagnosed with whatever it is they face and deal with every day.

When your baby was born too soon, when the doctor finally confirmed that elusive diagnosis, when we supported our family member after a serious accident, knowing he or she would never get back to the life they once had.

Grief hits our families a little bit every day.

But what about those times when grief runs us over? When the worst happens? When we find ourselves standing in a bedroom wondering what to do with all the stuff we’ve accumulated throughout the years. Stuff that had a purpose once but doesn’t anymore.

That’s exactly where I was when I walked into my house on the afternoon of June 18, 2021.

My husband and I had watched our oldest son die at Nationwide Children’s Hospital just a few hours before. And on that summer afternoon (my husband’s and my 38^th wedding anniversary) I stood in our son’s room and looked at the hospital bed, cases of liquid nutrition, piles of adult diapers, and his wheelchair and wondered “What will we do with all this stuff?”

And then we just cried … again.

Our house had never looked like a “normal” house, what with the medication bottles, syringes, IV pole, and communication devices stored in plain sight. After Evan’s death, I wasted no time donating everything, even the track system we used to move him from his bed to the bathtub for his weekly showers.

Without all of Evan’s things, our house looked “normal.” It didn’t feel right. Another punch of grief.

One of my husband’s and my biggest concerns was, and still is, that Evan is remembered by more than just our family. He had a place in this world. He filled a hole no one else could fill. There was a reason for his existence.

As family members, we forget the impact our kids have on so many people—the staff at MCBDD, doctors, caregivers. Along with Evan’s death came the sudden loss of one of my best friends, his nurse and caregiver. This person had been a part of my life for 16 years and suddenly, she was gone.

She is dealing with her own form of grief. So is Evan’s SSA, former teachers at the Ohio State School for the Blind, the nurses and technicians in the Nationwide Children’s Hospital ICU, even the doctor who performed the surgery from which Evan never recovered.

We think we’re alone, but we’re not.

Families who lose a loved one go through the same types of grief. Our situations are different and unique, but our feelings tend to be the same.

One thing is for sure: All our kids deserve to be remembered.

One of the most difficult things for me was continuing to show up. I just wanted (honestly, I still do) to stay curled up in bed and sleep all day. But I couldn’t. I had to make dinner for the rest of the family, do laundry, feed the pets. All that mundane stuff that I didn’t want to do, but still had to.

How are you coping? How are you making it through each day?

Really. I want to know.

I hope that we all step up and try to support each other as we go through something no family should experience—the death of a loved one.

Together, we will remember our loved ones and ensure their lives had purpose and meaning.