Thoughts About Bears with Grief 

Today we talk about difficult things. The emotions and feelings that come with grief.  They are the ones that seem to roll over a person when we least expect them. 

This recently happened to me as I found myself doing that one thing that will cause chaos in my mind, my soul and my spirit. 

Comparing my grief with what I see others going through. 

Or with what I think others are receiving. Oh my, the rampage that happened was as if I was seeing parts that I would never see in my own world. 

Then I was reminded of this article that I wrote in 2019. 

The waves were rolling over me then as I sat with questions.

It’s as if what I was told soon after Dallin passed away is still true. 

Imagine that. 

My friends, what I was told is that the waves of missing will be powerfully incredible in the beginning.

As new grief erupts with a dark sunrise.

As new grief erupts while moments come with a dark sunrise. 

Then the waves will become less intense as some time passes. 

Yet they will return occasionally. 

That is what happened to me this week. 

It’s what I now know.

Here’s what I found to be true for me. 

Even while I am rolling along with the waves, standing in fight and flight responses at the ready, I think about getting stronger by letting the emotions flow all around. 

Consider that with me as we read together. 

I attended a session at the NADD 2018 conference in Seattle titled A Consumer, Parent and Professional Perspective on Anxiety. 

It was presented by three well-spoken and honest people: a daughter, mother and uncle – Emilie Corthell, Sue Gamache, and John Gamche.

One presentation mentioned an article called “Bears in the Park”.

One part of the presentation mentioned an article by Leigh Merryday from August 8, 2014 called “Bears in the Park,” which talks about stress and anxiety felt by parents of children with disabilities. 

This article states, “So we rarely leave that park. And we stand—fight or flight response at the ready—clutching the hands of our children all the time. While trying to live our lives in all the necessary ways.” 

I now find myself still standing, fight or flight at the ready and continue to be pounced on by bears all around. 

The difference is that I now DO NOT have my Dallin’s hand to hold or his eyes to look into to ask, “Are you okay.” 

The bears with Dallin were many. 

Seizures, fall risk, dementia, muscle wasting, doctor appointments that gave us no new information. 

Digging deep to find resources for someone who did not fit in any system. Surviving an unknown illness at two years old? 

Good luck with that… dementia symptoms at age 18? Should not have happened and yet….

Trying to find mental health supports? 

Looks like you need to create your own. 

Dallin passed away and the bears remained.

And then Dallin passed away. 

And the bears remained. 

People who said unbelievable things: 

“You must be happy to be an empty nester,” 

“What a relief to have time,” 

“You don’t know what it’s like to have a child since yours is gone,” 

“Do you remember what it was like to hold an IEP, go to the doctor, do a meeting, talk to another parent?” 

It was like all of my legitimacy was suddenly taken and what remained was the pit of an empty space in our lives. 

The bears are now even more surprising as my work has brought me back to working directly with families who have children/youth with disabilities. 

Recently I found out that some people are surprised that I work where I do because my child is not alive. 

As if my 22 years of experience left with him. 

And my additional 6 years of advocacy and policy work for system change does not count because I do not have Dallin with me at the meetings. 

Do we lose the knowledge we have gained? 

Are other advocates not able to help families because their child is not in the exact moment at that exact time? 

You can’t help a parent of a preschooler if your child is not in preschool? 

The bears do not go away.

Ridiculous and yet…. The bears do not go away. 

They seem to loom even larger. 

At the end of the session in Seattle, the presenter shared the idea that it’s not that our loads are heavy, it’s that we need to lift more weights to learn to tolerate it. 

I am still not sure what I think about that concept and yet …. I am beginning to understand that it may be that it is through continually gaining additional skills that I will get stronger, to be able to come back from the never-ending comments and experiences. 

Which, in turn, will give me the ability to do what is needed next. 

Maybe it is gaining strength by lifting the weights that will get us all through. 

Even now. 

Even while I, with Leigh Merryday, “remain perpetually on watch for bears.” 

Originally published in April-June 2019 Family Corner is an ongoing column in The NADD Bulletin and is published under the auspices of the NADD Family Voices Committee. We welcome your comments, suggestions, and submissions for this column. 

The NADD is an association for people with intellectual and developmental disabilities and co-occurring mental health conditions.