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September 29, 2017 / tgexp

Demijohn Adventure

Thanks to funds donated to The Gleason Initiative Foundation, Team Gleason was able to send the Demijohn Family on an Adventure they will never forget!IMG954500.

pALS Todd Demijohn reached out to Team Gleason for an Adventure his family will never forget. He explains his travels as such:

“Our adventure was to provide my wife and teenage daughters a lasting image of being with their husband and father.  A man that is willing to try to enjoy a wonderful trip as opposed to the person that they have seen lately.  A person that rarely goes outside because of the perceived embarrassment and hardships brought on by this horrible and unforgiving disease.  So off to Kauai we went.

I was very apprehensive about traveling because how would we get to and around the airport, how would I get to my seat on the airplane, how would I use the lavatory, etc.  Just the thought of these hurdles terrified me and I have never been terrified of anything.   

My legs are at a point where I should be using a wheelchair and only a walker when needed in small areas.  But I tried to use the walker at the airport against my wife’s wishes.  That turned out to be a mistake because I fell while just standing in the check-in line and it took two security guards and my daughter to get me up off of the floor and into a wheelchair.  Plus my body went into shock or something because I sweated profusely for several hours and felt nauseous.  So luck would have it that our airplane was delayed for 4 hours and it gave my body a chance to calm down.  Ironic but it worked.

With my legs cramped in an airline seat for almost 6 hour, landing at the Lihue airport was such a blessing and relief.  And the beauty of Kauai hit me right away.  With the warm air and gentle breeze blowing the endless rows of palm trees, instantly this island felt like paradise.

My wife and I had planned for our teenage daughters to zipline, canoe, and paddle board during the trip to keep them entertained and/or give them something to remember. However, by magic or twist-of-fate, they were more than content hanging with their parents on the lanai and by the pool most of the time.  This was not the plan but was more than welcomed for it allowed us to spend more time as a family.  Something that is lacking a bit with our oldest now in college and away all summer working out with the soccer team and our little one practicing soccer most days with her academy soccer team.  So we forced ourselves to swim in the resort pool. Or for me, to sit in the pool and sip Mai Tai.  Darn…

For the first time in my life, I could not swim.  My legs just wanted to float and I could not control them.  This was a very strange phenomenon for me since we have spent countless days swimming in our pool over the last 15 years.  But with the help of my family and the pool lift, I tried to get in the pool every day for the buoyancy of my body in the water is the closest feeling of being “normal” for me in at least a year.

During the research and planning for this adventure, I read that the north end of the island held one of the highest rated beaches in the entire country. Hanalei Bay.  And it didn’t disappoint.  Plush green mountains to the west, jungle to the south, and perfectly blue ocean to the north, it was a gem.  I could not walk in or near the sand but sat in the shade and watched as my wife and daughters played in the water like little kids and soaked up the sun.  I probably enjoyed watching them as much as they did playing.

And after several hours of enjoying this spectacular beach, I suggested that we stop and get sushi for a late lunch.  The drive to the sushi hut took us further west and over three one lane bridges which was very interesting and allowed us to see parts of Kauai that not everyone gets to see.  Plus, the sushi hut was right next to another wonderful beach where we parked and indulged in the beauty and fresh ahi.

On another day, we were determined to go to a beach where we could try to use the beach wheelchair that Team Gleason was generous enough to rent for us.  After some research, we found a recommended ADA accessible beach about 30 minutes from the resort that looked like it should accommodate the wheelchair.  My wife was able to get me to the water but the wheels got stuck in the wet sand, so I got really nervous trying to think about how we would get back on solid ground.  This is where humans can be human and can surprise you when least expected for several people came to offer help to my wife.  With the help from three men, they were able to carry the wheelchair, with me in it, up a small embankment and into a shady area to relax.  Several other people offered their shady spots for me to use.  Just amazing kindness showed to me/us that day.  And in the end, I was able to relax and enjoy the beauty of Poipu Beach.

Other than spending time with my family, and seeing the generosity and kindness of others, I think that seeing the island from a helicopter was the piece-de-resistance.  Not many things affect me like this helicopter tour did.  From the spectacular scenery, to seeing the past lava flows, and a now extinct volcano, I was touched knowing that my girls got to experience this with me.  For the helicopter tour was our last day on the island and capped off an experience of family, beauty, majesty, generosity, and kindness while forgetting a little about the hard realities that we face now.

But what we have discovered through this adventure is how many wonderful people exist in this world.  People that didn’t even know us or our circumstances continuously offered to help.   From those people that helped me get up from a fall at the airport, to making room for me to pass with a wheelchair, to offering to get food and/or drinks for us, to helping carry me in a beach wheelchair that was stuck in the sand, etc. and on and on.  People that had absolutely nothing to gain, stepped up at every instance of this adventure to help.  Just incredible!

I have always wanted for them to see and feel the beautiful things that this world has to offer.  I believe that this trip will be remembered by all.  

Thank you!!!”

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