The worn-out shoes have paid nice dividends. Yesterday in therapy Megan’s PT effectively took away the support of the Carebike Strider’s seat and chest rest. She’s holding herself up with only her arms and making some significant progress.
A longer version of this was recently seen quite a bit on Facebook. Megan’s reaction to riding out front was the reason this whole thing got started.
The tires have been pumped up and the chain thoroughly greased. Time to take another run.
First step has to be a business card. My crazy-talented nephew-in-law, Chris Seaman (chrisseamanart.com) captured Megan and I on the bike. That’s a sun that Holly drew in elementary school. And the rest came after a whole lotta computer work on my part to create something that would digitally work and be something I would enjoy. (think of a room full of monkeys trying to randomly bang out Shakespeare)
One of the first things I learned about adaptive cycling is that the Europeans seem to take it much more seriously. A good number of us over here had a chance recently to met one of the area’s goodwill ambassadors, when Wendy Hawkins circumnavigated most of Canada and the US in conjunction with her duties with Great Britain’s Special Olympic World Games cycling team. Last Friday night, near the end of her herculean bit of driving, she stopped for dinner at our house. Thanks for all the inspiration, Wendy!
One of the upsides to aging is the opportunity to observe how this crazy world changes. I find the gradual acceptance of marijuana fascinating. Sunday night, I eagerly watched Dr. Sanjay Gupta’s CNN program “Weed”. At the center of the story is a Colorado family dealing with one of their twin daughters suffering from a severe seizure disorder. Some additional reading brought to light that the little girl seizures stem from a mutation in the SCN1A gene. My daughter’s seizures are caused by the same mutation.
Dr. Gupta’s report goes on to illustrate how the parents, with no other options, tried medical marijuana with miraculous results. 300 seizures a week were reduced to one seizure every seven days. There are no side-effects. The little girl is gaining ground on every level. It is a tremendous story that everyone should know.
But I can’t shake the stupefying irony to all this. I keep thinking that all the hell that Megan as endured, all the nightmares Betsy and I have shared, might have been avoided if we had been just a bit more laid back. Rather than relying so heavily on the best possible medical care and devoting a large part of our lives to searching for answers, we might have been further ahead by establishing a good connection with the neighborhood pot dealer and teaching Megan how to do bong hits.
As a kid, most of my exposure to my father and his family involved weekend stays at my grandparents’ home. Whenever we made those trips during football season, our group activities always centered around listening to the Buckeye games on Saturday.
My grandmother was the one with the biggest heart in that house that sat back off Pierce Avenue in North Canton. She was constantly fussing over me and my little brother. We never missed all the attention we were used to with Mom whenever we were with Grandma Holl.
But on those fall Saturday afternoons, Grandma always became a bit distracted once the Philco radio got snapped on. Greg and I learned very early that Grandma was crazy for Ohio State football. Grandpa, Dad and Uncle Phil were huge fans but Grandma lived and died with the Buckeyes. Once, every game, Grandpa would offer some sort of explanation for his wife’s behavior by telling us, “not only does your Grandma love football, but she understands football!”
Grandma or Coach Woody Hayes lit the spark sometime early but late in 1969 I began to feel an intense dislike for anything colored maize and blue. Over the next years that animosity only seemed to grow deeper and spread wider as each season Ohio State vs. Michigan always ended up as the most important game. By the end of the 70’s, it had gotten so bad there was nothing pleasant I could say about anything to do with ‘that state up north’.
Grandma passed. Then so did Coach Hayes. My wife’s best friend moved to Lansing and we had to make a couple of trips up there. All the green and white in that part of the state kept my mind off the fact that we were behind enemy lines. You could buy anything at Meijer’s Thrifty Acres. Going up and coming back I always took the long way around Ann Arbor.
There was one remaining CAREBIKE in the shop. A mom near Detroit began a calling to see if the bike was right for her son and their family. We were talking back and forth, moving toward completing the sale, when she added that her son saw doctors and therapists at the U of M medical center. An instinctive shudder went through me when I heard those words. I don’t think Mom detected any change in my voice or manner.
I loaded the CAREBIKE in the back of my van and headed up north to make the delivery. Crossing the northeast border of Ohio, I noticed the interstate signs took on an odd shape. Near Detroit, exit signs spelled out ‘Eight Mile Road’, ‘Six Mile Road’ and I chuckled and wondered who was in charge with coming up with such clever street names.
I got to the house and backed the van in the driveway. Dad was in my rearview mirror directing me up the drive all decked out in his Wolverine sweater. I got out of the van and introduced myself never once looking directly at the sweater.
I opened the back of the van and rolled the CAREBIKE out. Mom and Dad were in the garage tending to their son Michael. I watched as they started into their long practiced routine of getting him ready for the weather. Betsy and I have a very similar type of cooperative, working in unison, thing that developed in caring of Megan. It looks and feels like some kind of dance. Right away I felt connected to these people.
They live in a perfect setting for CAREBIKE. The driveway is directly level with the street and the street has no crown in the center. It is nice and perfectly flat; easy pedaling. Mom and Dad each took Mike for a short spin out the drive and down into the neighborhood and back. I’m out there with them checking them out on the bike. Training came as I either jogged along side or, unable to keep up, hollered out instructions between large gulps of air.
Inside, where it was warm, I immediately felt right at home in a very pleasant house, accented by scattered pieces of the required medical equipment. We talked some more about the bike. We talked even more about life and our similar trials. So much of what Betsy and I went through in raising Megan made us feel like we were all by ourselves. It truly validates our experience to talk with other folks who has been through the same physical and emotional wringer. There is a great deal of comfort in being around with those of your own kind.
As I was making my way toward the door to leave, I happened to catch a full-on, locked-in view of Dad’s Wolverine sweater. And forty years of stupid football rivalry nonsense went right out the window. In that spot, I understood that I was more connected to that family of Michiganders than anyone in a packed house at the Horseshoe on the banks of the Olentangy.
I know Grandma and Woody would understand.
Headed home from a road trip is always something of a letdown. To work against that, I decided to take a different route back to Florida to get a glimpse of some places and things I hadn’t seen before. There was also those crazy couple of hours from the previous afternoon’s “Make-A-Wish” presentation ceremony that I could play back in my head between the newly planned roadside highlights.
About the time Nebraska turned into Kansas, I recalled a bit of conversation from the day before that the family was looking
forward to using my CAREBIKEs (a bicycle designed to carry a wheelchair) in the spring to take the boys to local baseball games. That was the cherry that topped the whole thing off. With all the thought that went into making CAREBIKE and all the windshield time spent thinking about my bikes in York, Nebraska, for my money, the bikes could serve no higher purpose than enabling the whole family to catch a baseball game.
Back in Florida, there were a handful of days when all was right with the world. The trip had gone better than I could have ever imagined. The new career path was starting to gain some traction. It felt like my passion was beginning to make a difference.
I was in the middle of Lowe’s getting some hardware for the next CAREBIKE. An email came through on my cell phone. What started out seemingly as a pleasant note from a woman I met in York turned suddenly into news that Peyton had passed away.
I only met Peyton and his brother, Parker, the day they got their CAREBIKEs. I spent a couple of hours around the boys, their Mom and Dad, Chad and Julie, the “Make-A-Wish” folks and half the town of York getting everyone all checked out on the new bikes. With all that was going on there wasn’t much of a chance to really connect with either one of the boys. And here I was, virtually a stranger, half-the-country away but so immediately devastated that it took me quite some time to find my next few steps.
Again, with all the thought that went into making CAREBIKE, it was always about fun. It was always about everybody having a chance to get outside and move. Heartbreak had never entered the thought process. But Peyton never got a chance to experience a fraction of the joy that I’d built into his bike. The four them never got the chance to ride down to the ball field to catch a bit of the action. Life constantly reminds you that very little of life is fair. Rarely do things work out just as they should. This little boy’s life ended way too early. As a Dad, I wouldn’t allow myself to remotely imagine the nightmare that Chad and
Julie were so suddenly living.
Still in the hardware aisle, as things began to clear, I caught myself going through a mental list of possible reactions. Obviously, there was nothing I can do to change anything. Very little in my control would allow any of Peyton’s family and friends to feel the slightest bit better. The brief brush with his family, along with the 1500 mile separation prohibits me from making the slightest bit of difference to those in and around York. Then it came to came to me.
CAREBIKE is a direct result of my own family’s story. With all we’ve been through, I’ve learned above all else that when life hands you lemons, you make lemonade. So in this dark moment I took the same approach. I decided, in that same spot, to take the energy within this pain and redirect it toward working harder, smarter and more creatively to get more bikes to kids like Peyton. I will use this sense of loss to push myself to move my project into a higher gear so more kids will have the opportunity to fully understand the joy built into each CAREBIKE.
Into the wind
By Kate Burke
Peyton, 11, and his brother Parker, 10, both like speed, said their parents, Chad and Julie Hoffman. Both boys are confined to wheelchairs as a result of a genetic neurotransmitter disorder.
Until now, walking speed was about the fastest they could go in the open air. They loved rides on the family’s pontoon boat on local sandpits, but that couldn’t be an everyday activity.
Then Julie spotted a short article in “Exceptional Parent” magazine. It described a bicycle modified with a platform for wheelchairs. Cycling could be a family activity.
The need for two of the “Carebikes” pressed the family budget, so the Hoffmans turned to Make-a-Wish Foundation of Nebraska.
The foundation and volunteer Wish Granter Ric Horton were able to act swiftly on the Hoffmans’ wish, and on Saturday, Feb. 27, Carebike inventor Rob Holl personally delivered the matched set to the family at the Holthus Field House on the York College campus.
Holl, based in Florida, takes a personal interest in every aspect of his product. He developed the Carebike to facilitate healthy exercise with his own daughter, Megan.
Holl knew from personal experience how confined a family’s world can become as the primary caregivers for a disabled loved one. When Megan reached her early twenties, the family reluctantly placed her in a group home.
Holl said he was advised by a well-meaning social worker that the move would allow his own life to become “larger.”
Holl said, “So I was out praying and walking and looking for my larger life,” when he saw a German-made wheelchair bike in the park.
A big sports fan and an active man himself, Holl knew at once how he could stay close with Megan and help other families “out of that confined place.”
On Holl’s Carebike, the front wheel fork of a 21-speed bike is removed and retrofitted with an anodized aluminum platform large enough to accommodate most wheelchairs.
With bike wheels on the left and right sides and a flip-down ramp on the front, a wheelchair can be backed onto the platform and secured.
A caregiver or companion pedals the bike and steers. Disc brakes give the bike extra stopping power.
Holl made adjustments to two, Husker-red Carebikes and gave a few riding and maintenance tips to the Hoffmans before the family set off for a test ride around the large, open floor of the field house.
Peyton’s grin grew wider as his dad zoomed about. Parker relaxed and closed his eyes into the rush of air.
Back at their starting point, Chad Hoffman stopped alongside Holl and said, “They’re awesome.”
A small crowd, including the brothers’ older sister, Paige, and some of their classmates and teachers from York Elementary and Middle Schools, took turns trying out the Carebikes.
Julie Hoffman repeated her thanks to Holl and Horton.
“This is another good reason for us to get in shape,” she said with a smile.
For more information about Carebikes, visit www.carebikes.com.