In Kelly’s Words – Getting Offroad!

 

For someone in a wheelchair there is nothing more liberating than getting off the pavement and into the woods, fields, or mountains.

 

About a week ago I got an offroad handcycle, the equivalent of a mountain bike. These machines have become a lot more popular in the last 5 or so years. What was once something that people would just weld themselves in their garage has turned into a pretty hot market. At the KBF we have been getting more and more requests for funding for these bikes because they are both really expensive ($7,500 as a base price) and really fun!

 

For me, there are 2 reasons that this has been an incredible new experience. First, it allows me to get off the pavement. Sure I’m really active with road handcycling and play tennis sometimes, but these are on solid surfaces. Even golf is on a manicured surface (not exactly nature!). This is a sentiment we get from a lot of applicants to our Adaptive Sports Equipment Grant program (see a new KBF blog here about Anna, a girl about my age in the Pacific Northwest who just took delivery of her new offroad handcycle!). It’s about identity, freedom, nature. Everything we think of when we say we want to “get outside” (more on this below).

 

Second, getting this bike has allowed me to reflect on and appreciative what my Middlebury Ski Team teammates did for me right after my injury back in 2006. The very first Kelly Brush Ride was planned by my teammates on the Middlebury Ski Team to raise money so I could buy a monoski and get back on the hill with them. With a goal of around $10,000, they ended up raising over $60,000! I’ve continued to be able to use that money over the last 11+ years to buy adaptive sports equipment. We just used the last $8,000 to buy this offroad handcycle. When I read grant applications for the KBF a common sentiment is that people want to get back to doing what they love, exploring the world actively, and being an athlete. I feel like the Middlebury Ski Team made all of this possible for me because I’ve had the ability to participate in so many adaptive activities. I forever feel indebted to the people who raised money for me that year. That’s what we at the KBF try to do for anyone else with a spinal cord injury.

 

But back to my experiences getting out on the handcycle these last couple of weeks:

 

For my second ride on the new whip this past weekend I went to Snake Mountain here in Vermont. This is a mountain that we used to hike when I was in college but (obviously) haven’t done in years. Zeke has hiked it a few times over the years and thought it would be a good place for the offroad handcycle. The trail is wide and without any technical rock sections that would be hard to navigate. What we didn’t account for was the mud. Mud, mud, mud. It has rained a TON in Vermont this summer. Which made it harder than we expected. Zeke helped (with Dylan on his back) and we made it to the top! It was so much fun and such an amazing adventure to be out in the woods! I can’t wait to see where we can explore.

 

The few times that I’ve been out on my bike Zeke has been hiking with Dylan in a backpack. I go about his speed uphill but obviously a lot faster downhill. It has been a great compromise so far though; I love that we are out in the woods with Dylan! Our dog, Lexi, has also been on these adventures, it’s been so fun to have the whole family out in the woods! I know I have a lot to learn (I’ve been told, and now understand, that there is a lot of technique to mountain biking), but I’m so excited about this new activity that I can share with my whole family!

Meet the #KBFamily – Anna from Oregon

 

“By far, more than anything else I may have lost with my injury, I miss the ability and the freedom to get out into the wilds under my own power the most.”

 

That line was from Anna Soens’ grant application to the KBF for a new off-road handcycle. When Anna applied in the fall of 2016, it was less than a year after she sustained an SCI while rock climbing in the Pacific Northwest just before Christmas in 2015. Active, in her late 20s, and with a career in wildlife research in the Nevada backcountry, her injury struck her livelihood and identity particularly hard.

In October of 2016, the KBF awarded her $2,500 to help her get her life, identity, and freedom back.

Her new offroad handcycle was delivered and assembled a few weeks ago, and she checked in last week with an update:

“Thank you so much for the grant that allowed me to add this awesome piece of equipment to my life. The arrival of this cycle has instantly opened up so much opportunity to me and I’m currently intoxicated by the newfound freedom. It’s so much more than just a bike to me and my head is spinning with all of the adventures I see for the future: easier access to crags for more climbing adventures, the freedom to “backpack” with my dog into Idaho’s vast wilderness, and lots of roadtrips around the country!”

Congratulations Anna and we couldn’t be more excited to have you as a member of the #KBFamily and are proud to be part of your story! Stay adventurous!

 

 

Some more pictures of her with her new offroad handcycle (and her dogs). Photo credit to her buddy John Chapman.

Announcing the POC 5×5 – Kelly Brush Ride

 

Kelly wearing her POC helmet at the start of the 2016 Kelly Brush Ride

We’re teaming up with the awesome people at POC again to give 15 Kelly Brush Riders the opportunity to win a POC helmet for themselves AND for a KBF Grant Recipient. That means POC is giving away 30 helmets to riders in the #KellyBrushRide and members of the #KBFamily this summer!

Here’s how it works:

  • The top 5 fundraisers (by number of donations received) for the Kelly Brush Ride in the last 5 days of each of June, July, and August win BOTH a helmet for themselves AND for a KBF Grant Recipient that received equipment in a sport that requires a helmet (handcycle, monoski, racing chair, etc.).

The contest dates are:

  • June 26 – 30
  • July 27 – 31
  • Aug. 27 – 31

To start fundraising, register here, get some fundraising tips here, and start fundraising! If you’re one of the 5 people that receive the most number of donations in those 5 days periods, we’ll email you!

In Kelly’s Words – All about Dylan, my daughter

 

So Zeke, Dylan and I took a trip to California. Being out of our normal location and routine allowed me to appreciate Dylan’s changes and development in ways that I don’t always recognize when we are at home.

[Scroll to the bottom for recent photo album!]

Generally, Dylan is an amazing sleeper. Zeke and I have always counted our blessings with this! By about 6 months we were waking up only once a night,. We would give her a bottle and she would go right back to sleep. By 8 months we decided to let her cry (the famous “Cry-It-Out” or “Ferberizing” technique) to try to get rid of the overnight wake up. It took 4 nights of crying (shorter lengths each night) and since then she has slept through the night. Now, she sleeps from about 7pm – 6:30am! It’s awesome!

 

On our way to California, we had a direct flight that left at 6:30pm (around her bedtime…), so we were a little nervous about how the 6 hour flight would go.

 

She did great! She got about an hour of sleep then just started playing. She was as happy as ever crawling around our seats. When she got a bit fussy at the end, we put her back to sleep and she slept for the last hour of the flight. Like I said, she’s a great sleeper!

 

Eating has been a different story… Since she was born she wasn’t a great eater. We struggled with breast feeding for 4 months before I switched to all bottles full time. This was a really hard decision for me but it was the right one. She started growing much better and was a much happier kid. Introducing solid foods was a hysterical process as she tried to figure out what was going into her mouth. For many months she wouldn’t do anything except a purée. We tried it all—small pieces of fruit, vegetable, egg, meat, baby food puff things that just dissolve in their mouth—and she wouldn’t do it. Then one day, right before she turned 1, she just started eating! I don’t think it was anything Zeke or I did or didn’t do, she just needed to do it on her own time.

 

These days she’s eating better, meaning she will eat solid (normal) foods, but she is still VERY picky. I have offered her a fruit or vegetable with almost every meal since we started solids and she doesn’t eat any of them. For the first time ever a few weeks ago she put a pea in her mouth and chewed down on it before promptly spitting it out. But, hey, I thought it was progress! She definitely has staples that she’ll always eat, like a peanut butter sandwich, pasta with pesto on it, and eggs. We continue to offer her new foods often, but she’s not great at trying them. On the plane ride to CA, the key was to have some of her favorite foods but also a lot of snacks and different foods to keep her entertained.

 

Her eating tribulations have been a really good lesson for me both personally as a parent and professionally as a pediatric nurse practitioner.

 

Dylan’s physical development is also a bit behind but still fine (as Zeke always makes sure to remind me!). She started crawling at about 10 months and hasn’t started walking yet. She is pulling up to stand and cruising a bit (taking steps while holding on to furniture). As one friend pointed out to me recently, this may be a blessing in disguise as I know a baby who can walk and run away from me will add an extra challenge! Walking any time between 9 and 18 months is considered normal so we are well within that.

 

While we were on the plane it was very clear that Dylan has become much more agile with her crawling and climbing. Even though she hasn’t started walking she is definitely continuing to progress. Her most common words are mama and dada. She will sometimes use them in reference to Zeke and me, but sometimes it’s random too. She also says “hi”, but other than that she doesn’t have any words that we have been able to identify. She loves playing pee-a-boo, waving hi and bye, clapping, and giving high fives (though she does it best with me and not as great with other people so far). She is incredibly social and will smile at anyone who walks by (whether or not they look at her). We saw this a lot on the plane ride, she was waving to and smiling at people who were asleep or not looking!

 

Overall Dylan did really well on our trip to California! She slept well everywhere we went, ate well (and even ate some variations on her staples), was happy pretty much the whole time, and gave everyone we saw lots of smiles and engagement. Zeke and I remark frequently, particularly on this trip, that we feel lucky that Dylan is such a good kid!

 

Announcing Path2Active Partnership – National Ability Center

 

The Kelly Brush Foundation and the National Ability Center are teaming up to help people with paralysis try, learn, and own adaptive sports equipment.

The National Ability Center is a world-class adaptive sports program in Park City, UT. They provide people with any disability the opportunity to get active, have fun, and even master a sport.

We help people with paralysis purchase and own adaptive sports equipment. Our grant program has helped over 475 people in 47 states get their own equipment.

Now we’re teaming up! Together, the National Ability Center and the Kelly Brush Foundation are helping people:

  • TRY adaptive sports at the National Ability Center,
  • LEARN and receive personalized instruction on a certain piece of equipment at the National Ability Center, and
  • OWN and take that equipment home.

 

HOW IT WORKS

  • The Kelly Brush Foundation purchased 4 handcycles for the National Ability Center to use in its programming.
  • People with paralysis can go to the National Ability Center and use that equipment.
  • Program participants can then apply to the Kelly Brush Foundation—demonstrating the desire and skill to use it independently—to make it theirs!

 

ELIGIBILITY

  • Attend programming at the National Ability Center.
  • Have paralysis caused by spinal cord injury or spina bifida.
  • Demonstrate financial need.

 

WHY

Without a disability, someone can get active by going out and buying the equipment they need to do that sport or activity (for example, a pair of running shoes, a bike, or a tennis racket). There are generally cheap options where someone can start. For more involved sports like skiing, you can rent equipment until you’re ready to buy.

But for the disabled community, equipment can be prohibitively expense and access can be very challenging. An entry-level handcycle starts around $1,500, which is the equivalent of a $200 bike at a local bike shop. And this is for people that generally already have a higher cost of living.

This is where adaptive sports programs, like the National Ability Center, play an extremely important role. They provide the opportunity to try sports and recreation, the instruction to learn how to do it, adaptive rental equipment, and the community in which to do it effectively. But the ability to live an independent, active lifestyle often hinges on the transition from trying to owning equipment, which can be difficult and prohibitively expensive.

That’s where our grant programs and others like it come in. But it takes time. While we’ve fine-tuned our application over many cycles, it can still be a challenge to really get to know the applicant and their abilities. There are two particular things we’d like to know more about:

  • Is this the right piece of equipment for an applicant’s skill and ability, and
  • Does the applicant have the desire to use the equipment regularly and make it a part of their lifestyle.

This is the promise of the Path2Active partnership. Together, we can improve how people with paralysis develop independent active lifestyles, scale our collective impact, and spend our grant funding more efficiently.

We hope that this is just the first of many successful Path2Active partnerships. If you want to learn more information about Path2Active, contact Zeke at [email protected].

For more information, CLICK HERE.