A Well of Grief

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Digital Communications Manager for The Arc of Northern Virginia. Rob’s advocacy on behalf of his daughter, Schuyler, who has a rare disorder called polymicrogyria, has guided his personal philosophy for the past twenty years.

A Well of Grief

I was speaking with a group of parents a few weeks ago, and the topic of fear came up. These were all parents like myself who have kids with disabilities who have left school, or will soon, and are stepping into a world where they are no longer children and no longer under the protection of public education. There was some general agreement about what we believed our worst fear was about.

“When I think of what will happen to my child after I’m gone, my blood runs cold,” someone said. “It’s my worst fear, that they’ll be left without the care they need. It keeps me awake at night.”

We all agreed that we also felt that fear, and that it felt like the most daunting outcome we could imagine. Even as we discussed it, however, I knew we weren’t quite right.

There is a worse fear. There’s a possibility that is so frightening and so unfathomable that we don’t speak it out loud. For many of us, I suspect it’s not even something we entertain in our conscious thoughts, although I assure you it is there on some level. It’s the thing that we silently catastrophize about.

We dread the possibility that we will experience a loss that is beyond our capacity. It’s the fear that we will one day experience the loss of our own child.

I follow several groups on Facebook for families of people with polymicrogyria (PMG), the brain malformation that my own daughter was born with over twenty-five years ago. We’re a small group, the parents of our own “polymicrogyrians”, and if it weren’t for online supports, we would likely go our entire lives without ever meeting another person who’d even heard of PMG, much less had a family member like ours. But online is where we know each other, and it’s where we occasionally face that worst fear for us, the one we can barely make ourselves name out loud, much less talk about.

It is in these online support groups where we learn of the death of a PMG child, someone who has become dear to us all and whose life and circumstances are so very much like our own.

I find it very difficult to read those stories. Some are about young people who present very much like my own daughter, except that their luck ran out where hers has not. It’s hard to read about, but I also feel like I have a responsibility to do so. Certainly to these families because their pain deserves to be seen and acknowledged, but also to my daughter, because the worst thing I could ever do for her is to allow myself to forget that every day she lives with her unusual and unreliable brain is a gift.

It was through an online PMG support group that I came to know Julie Polk Hasselberger, founder of the largest of these groups and mother of Daniel. And was in this same group one day in January of last year that we all read the terrible news of Daniel’s death at the age of twenty-six. It hit all of us hard, mostly because we had come to know Daniel through Julie’s writing and her advocacy. Families are often what you make in life, and the PMG family is very real.

But honestly, a small part of our reaction to Daniel’s passing undoubtedly resulted from our fear for our own children, kids who live lives and faced challenges very much like his.

Daniel’s end felt too close, like a next-door neighbor’s house burning to the ground. Daniel and Julie were us.

A little over a year later, Julie is still struggling to find her place in the world without Daniel and the intense level of commitment to his daily life that she had embraced entirely.

“After twenty-six years of advocating, caring, and basically living life for two people, Daniel’s death left me gutted,” she says. “I miss him. And I don’t quite know who I am anymore. The grief is far more intense than I ever could have imagined.”

That pain changed how Julie experienced the world, and also how she thought about advocacy, once the center of her daily life. For an advocate as busy, as experienced and most of all as committed as Julie, losing her son meant reexamining so much of her own identity.

“Not only do you lose a child, but you also lose a world, a purpose, income, satisfaction, the energy of hyper vigilance, and the role of being that person providing a complete life for another person.  Like many other Moms I know, I gave up my career, my advanced degrees, and my desire to have financial independence, in order to step out of that world, and into being Daniel’s everything.

“After he died, everything stopped. Nurses. Therapy. Giving showers. Playing outside with bubbles and wind chimes. Managing the budget for his vocational day program. Paperwork. Doctors. Hospitals. Tests. Repairing equipment. Getting new supplies.  Watching Disney movies.  Doing art together. Going for walks.  Going for drives in the wheelchair van.  Special needs groups and activities in town.

“The house became silent.  Just the ticking of a weird old clock.”

I’ve watched Julie for years, advocating for this community she loves with Daniel by her side. Her loss is both immense and recent, and she’s only just beginning to examine what her role as an advocate for this community could look like in the future.

“So now I am often gently asking myself ‘Who do you want to be now? Who are you now, after all that you have been through?’ And I don’t know. I have deep compassion and love and empathy which is why I stay connected in the PMG group I started in 2008.

“As far as advocating? I am still not sure how much I can handle. But maybe someday. On some level for sure.  My heart is simply too broken to be able to focus there, at this time anyhow.”

I hope she gets there. I suspect she will.

When I first met Betsy Walling Furler, we were presenting together as part of a larger panel on disability and technology at South by Southwest in Austin. Betsy’s son Henry was with her, and together, they presented a powerful advocacy team. Henry was young and dynamic, and his epilepsy presented challenges but he powered through them with determination, even attending college classes and planning for the future. By any measure, Henry was an impressive young man. (My daughter would agree; she followed him around at one of our presentations with stars in her eyes.)

Trained as a speech pathologist, Betsy had been working in advocacy with a focus on technology for a long time. She founded For All Abilities, providing software and consulting solutions to employers in support of their employees with disabilities. She also hosted a podcast focused on technology and disability.

When Henry died unexpectedly in his sleep four years ago, it came as a shock to those of us who had met him and who followed Betsy’s regular online presence. From my perspective, Henry came across as an incredibly vibrant person, both in person and in his online presentation. It was sometimes hard to reconcile with the medical fragility that created obstacles for him his whole life. His passing felt inexplicable, even as I intellectually knew otherwise.

For Betsy, advocating for Henry was at the core of what she did with her life, personally and professionally. When he was gone, she was left with a deep well of grief and an unchanged commitment to advocacy. Henry’s unflagging tenacity during his lifetime kept her going after he passed.

“Henry’s death has definitely pushed me professionally,” she says. “I know he wants me to live a full life and a large part of that is advocacy for people being able to use their strengths rather than constantly pushing through their challenges.”

It hasn’t been an easy path for Betsy. Grief can be a persistent presence for parents in mourning, even as they continue to advocate for the causes that were so deeply personal before.

“It’s been four years so far and I now have my mojo back – on most days,” says Betsy. “I faked it many days between his death and now. That grief combined with my divorce caused me to address the trauma of all the medical stuff during his life and the difficulties in my twenty-eight year marriage. When Henry was alive, I did not have the headspace to even think about recovering from the medical trauma.”

Ultimately, Betsy has found herself in a place where her memories of Henry bring so much more than grief. She has been inspired to move forward, taking the legacy of advocacy that Henry inspired and continuing the work they did together. She has even written an upcoming book on the topic, Grateful Grieving: My journey through the process of grief, detailing the year following Henry’s death.

“Henry is still a daily presence in my life,” she says. “He sends me signs daily. Several people have said ‘Henry died so you could live’ and that is so true. Although I also LIVED while he did. He truly embraced every minute of his life and taught me so much. How lucky I am to be his mom.  I am so grateful for the time I had with him on Earth, and also for the fact that while I know he is ‘gone,’ his spirit is living in all of us who knew him and the many, many people who only know Henry through me.

“Everything I do is powered by Henry Angel!”

If you are experiencing anxiety about the future where a loved one with a disability is concerned, there are steps you can take. As I mentioned in the piece, it is extremely important to fight the feeling of isolation by finding your village. This can be via online supports or in gatherings of families like yours in your community, often sponsored by advocacy organizations like The Arc of Northern Virginia. I certainly hope you’ll seek out Betsy Furler’s book when it is released next month. Perhaps most importantly, if you have experienced a loss or are feeling alone or overwhelmed by the challenges of your situation, please takes steps to connect with a grief counselor. You do not have to go through these challenges alone.