Not long ago, I received an email from a father of a little boy with epilepsy that caught my eye:
I just discovered your blog. As father of a young boy fighting devastating epilepsy and a brother of an adult sister who has spent her entire life fighting seizures, thank you. I would be interested in writing a blog about taking our son on his first backpacking trip in the Montana wilderness, in spite of his intractable seizure disorder.
I replied to Mr. Long’s email and very soon after received the most touching description of what it’s like to parent a child with epilepsy that I’ve ever read. I hope you will enjoy the following post as much as I did.
A Wilderness for Aidan
By Ben Long
Growing up in Montana should mean growing up out of doors. Instead, too much of our young son’s life has been spent inside, looking out the sealed windows of hospitals.
In 2004, my wife, Karen, and I had a boy, our first child. We took him camping trip at four months. A challenge in those days was changing a diaper by flashlight in a tent when it was below freezing.
Aidan grew up smart and curious and fun loving, with no sign of health problems beyond the hay fever he inherited from me. We camped, hiked, skied and canoed because, in our family, being outdoors is what we do.
I particularly love hiking overnight into the backcountry. When I was growing up, my dad took me backpacking every summer. Even before Aidan was born I started planning his first overnight hike.
But those plans were shattered on Oct. 28, 2008, when Aidan was 4. Aidan tipped off a kitchen stool and slammed into the floor, his lips blue and a trickle of blood from the corner of his mouth. I thought he had choked on something and called 911, but the ER doctor said Aidan had suffered a seizure.
It was the first of many seizures, and many hospitalizations. There are no pediatric neurologists, let alone epileptologists, in Montana. So in search of answers we traveled to Seattle, then to specialists at Denver, Cleveland and Chicago.
Aidan’s epilepsy defies labels as it defies treatments. We’ve failed a dozen medications, have spent three years on the ketogenic diet, and invested in several nontraditional treatments. The disorder seems particularly cruel in that Aidan thrived so in his early years. His smart little brain seems at war with itself.
Aidan has several forms of seizures. They come at different times, different severities, seemingly without pattern. Aidan is also prone to bouts of ‘non-convulsive status epilepticus’ – which essentially means non-stop seizures that are invisible but render him immobile for days, even weeks at a time.
Because of these status events, Aidan has been life-flighted from our Montana town to urban hospitals five times between age 4 and 7. Aidan has spent month after month in intensive care units, scalp wired to EEG electrodes and receiving drugs and fluids intravenously through a PICC line in his armpit.
In one of the last extended hospital stays, the doctors tried to get control of the seizures by dropping Aidan into a medically induced coma. This went poorly. Aidan’s muscles shriveled before our eyes as he lay motionless day after day, fed through a tube up his nose, breathing with hose down his throat. Finally, when he had pneumonia in all four lobes of the lungs, the doctors called the brutal experiment to an end. Seizures, if anything, were worse than ever, as was our sense of helplessness.
The hospital sent us home with the phone number of the local hospice and a pamphlet on “letting go.” We wheeled Aidan out of the hospital in a borrowed wheelchair, and took him home to learn to walk and talk again.
That was two years ago.
The seizures come in waves and have taken a tremendous toll on Aidan, yet he is still the same, remarkable child as a young boy as he was as a toddler. He still loves to listen to books and then act out the parts. He loves Legos, building castles and spaceships. But the seizures and drugs leave him exhausted, blunted, battered and frustrated.
We have lost a tremendous amount, but to me, the worst loss is the sparkle in Aidan’s eyes. That sparkle was once a part of every waking moment; now it’s only there on his better days.
One evening during one of Aidan’s better periods, Karen and I spoke of things we still wanted to do. I said I still wanted to take Aidan backpacking. She insisted we do so.
It was the shortest hike we’ve done, but also carefully planned. We wanted to get away into true wilderness – no cars, machines, cell phones — just a million acres of pristine nature. Yet we had to be cautious. If disaster struck, I wanted to be able to throw Aidan over my shoulder and carry him back to the truck.
We picked a lake two miles from the road in the Great Bear Wilderness. As it turned out, it was in the shadow of Great Northern Mountain, a peak Karen and I had climbed on our first hike together exactly 20 years before.
We pulled our gear out of storage, shook out the dust and stuffed our backpacks full. The night before we departed, I lay awake wondering if the entire idea was a vain, dangerous mistake.
Would the hike stress Aidan’s physiology? Would excitement or lack of sleep trigger another bout of status?
In the morning, we decided to go for it. We loaded our packs (Aidan carrying his lunch, some water and his favorite stuffed monkey) and hiked into the forest.
The packs were heavy and my muscles unused to carrying a load up a mountain trail. But the lake was beautiful and we enjoyed it in solitude, loafing, fishing and watching the shadows give shape and form to Great Northern.
“Dad?” Aidan asked as I pitched the tent, “can I watch Netflix on the iPad?”
“Sorry buddy. I didn’t pack it and it wouldn’t work here anyway.”
Instead, we piled up rocks on shore and caught and released little trout. The evening was long and mild. In the morning, after sleeping snuggled in the little pup tent, Aidan danced the happy camper dance around the campsite.
Part of what I like about backpacking is the physical challenge. It teaches one to endure burden, to walk through pain. The strain can be great, but at the end of the trail you shed the heavy pack and feel lighter than air as you enjoy your destination.
Epilepsy, for our family, isn’t like that. We are learning to bear pain, to carry a burden of broken dreams. But the destination is so far beyond our reach. The best we can do is reach out to family and friends to share the burden, share the rugged path Aidan is on.
We still believe in a day when children like Aidan and families like ours can leave this burden behind and more fully enjoy the beauty of the world around us.
Please pass it on.