Helping families find the critical information and support they need
December 11, 2019
Report from Rare Disease Week in D.C.
March 2, 2017
2019 - The Year in Review
December 31, 2019
Reflections on the Profound Isolation of Having a Catastrophically Disabled Grandchild
March 31, 2014
Every child we see seems better off than Elliott.
Frequent visits to the hospital often present children who may have profound challenges but each of whom seem to have some or many capabilities, all of which Elliott lacks: They see. They speak. They can sit. They talk. They hold things. They kiss. They hug. They laugh. They walk. They even suck their thumbs.
The isolation stems from both a pull and a push.
The pull is the enormity of his needs and the almost compulsive draw to supporting Elliott – and his devoted but overwhelmed parents – with every bit of energy and capacity I have. So I have found myself working with Elliott 5 -7 days a week. I do his PT, OT and vision therapy in almost every awake hour, handle feedings and administer medications, and attend all his medical and therapy appointments (a rabid note-taker documenting what is always too much to absorb in the moment). Absolutely nothing in the world rivals the reward of doing everything possible to support Elliott, give him the support and love he deserves, and provide hopefully not too obtrusive support for Gabi and John.
So with the magnetism of this “pull” it has been difficult to reconnect with all the activities and interests I had set up for my retirement. It took over six months before I even ventured back to any activity.
And then there’s the “push” side of the isolation. As I tried to venture back out in the world and my communities of interest, conversations nearly always turn to the latest accomplishments, adventures, or even challenges of peoples’ children or grandchildren. It helps a little when you can open up and share the extraordinary challenges facing Elliott, his parents, and caretakers rather than hold it in. But the chasm of experiences are so deep that the profound sadness and sense of isolation just gets reinforced.
Amazingly there aren’t many support groups for parents or caregivers of children with disabilities, but I was thrilled when I found one miles away and dragged Gabi and John there. The one other parent at the meeting was sharing her frustration and challenge with her son managing his ADD during his first semester in college! This young man and his Mom’s issues are real, but the experience served to deepen the isolation and hopelessness of finding a community where I – and more importantly, Gabi and John - felt we fit in and find compassion and understanding for our situation.
We’ve also ventured out on a couple of big family getaways for a break, but reality always intrudes and underscores how there is no “getting away” from the grave limitations for Elliott’s life and experiences. For each trip we flew and were inundated with how airports seem full of active, joyous or even frustrated children. They’re running around, talking, playing, hugging, excited. And at the same time we’re busy connecting or disconnecting Elliott’s feeding tube – or even more awkwardly “venting” him to release gas in his stomach by attaching a large syringe to his tube and releasing stomach fluids, hopefully along with gas bubbles or even audible “burps”.
Then we might finally get to a beach or pool, but Elliott then experiences a seizure or other symptoms that get in the way of him experiencing something different, pleasurable or maybe even fun. Or there’s an emergency that takes over a planned celebration, dinner or outing.
It’s been a challenging process to reach out beyond the tiniest circle of folks you can talk with about what’s happening and spend time together.
In taking the step to support research that has some potential to help Elliott and certain benefit for children in the future, we are breaking through our isolation to connect with people we all know. It has already reestablished or enhanced connections for all of us since so many people want to better understand and find a way to help. And the outlet of this Caretaker Corner to channel the intensity of emotions is itself a constructive breakthrough moving beyond the tears in solitude and breaking the sense of isolation.
So Elliott is in fact more challenged than most children. But some connections are bringing us into contact with older children with similarly devastating conditions. I’ve met beautiful Abby, who at 11, has nearly all the same limitations as Elliott. (You can see her website here). Making this connection was another step in breaking the isolation.
The stark reality is that Elliott is very different than most children and the lives of all those around him are forever changed. But just as importantly, we are learning that we are not alone. And Elliott is not alone.
Thank you for taking the time to learn more about Elliott’s challenges and various ways to support promising research and his family in making his life as rich, stimulating, and full of love as it can be.