Thursday, August 23, 2012

Working on the Ride

Yesterday I loaded up both boys, the double stroller, and the Freedom Concepts bike and made the drive to Golden to Peak Cycle to see if they could help me fix up Noah's bike in time for the race. They were amazing. Even though they had two bikes they were already working on, they took a break to immediately start on Noah's bike - something they certainly didn't have to do. Eric, was the technician who fixed Noah's bike and he was simply a pleasure to talk to. He has a family member that also has cerebral palsy and so he understood our journey and offered Noah tremendous kindness. He did a lot to Noah's bike. He of course fixed the cosmetic stuff - which was putting on a new handle bar foam with an alcohol solution so it would dry fast for Noah's hands; and attached the rear bumper piece for one of the rear tires. He couldn't find any hardware to match, but it didn't matter to us, we were just thankful for bolt that worked. He also added brake fluid; fixed the rear tire brake so that the bike wouldn't move forward on us while we were loading Noah, fixed the front break contacts on the front wheel, lubricated both sides of the handles to prevent further rusting, and adjusted the handle bar center - and cleaned off the entire bike seat with an alcohol solution. He of course said there wasn't anything he could do about the rust on the bike, but thought it was safe for Noah to ride.

The Peak Cycle sales team also helped Noah try on many different types of helmets. Noah was really having none of it. I am surprised that he allows a helmet on his head for hippotherapy, but he really wasn't feeling any bike helmet yesterday. But his grandma took her lunch break to come over and purchase it for him just in case it was a requirement for Saturday's race. We at least have one - eventhough he's not a big fan of the helmet. Peak Cycle didn't charge us for any of their services to work on the bike, they said it was their contribution to his race. They have tremendous hearts, and I highly recommend them because in addition to their kindness they were very detailed in their assessment and repairs. They were proud that this little boy was getting a chance to ride a bike in the USA Pro Challenge and it was the very first time they had even met Noah.

Representatives at Freedom Concepts have been corresponding with us since we explained the condition that the bike arrived in. I think they genuinely didn't know the condition of bike they were sending us, as they were going off one picture that the person who had the bike sent them, which clearly didn't show the true condition of the bike. To get a new bike for Noah the total cost would be approximately $4,300. We of course could pay the difference between $4,300 and the $2,500 that the two foundations gave us, but there is only so much help out there and we're still trying to fundraise the remaining balance of Noah's service dog. And I know everyone out there must be so exhausted from us continually asking for help - as we recognize that there are so many people out there struggling in many ways - not just us.

So the only solution really is that Freedom Concepts will exchange this bike for another demo model bike that is in better condition. And we are thankful that they agree that this bike isn't in the shape it should be for the donated $2,500. However it will take about 6-8 weeks for them to find Noah a bike, so we're going to have to punt with this one for a little while which is okay - if we can get it to work for Noah temporarily....

Noah had trouble reaching the pedals yesterday so we lowered the seat and will try it again, the foot straps rubbed his left ankle a little raw so we'll have to try thicker socks I guess, and one foot just slipped out of the shoe altogether. So he of course was frustrated and I really don't want him to associate this bike with a bad experience so we quit trying last night and will regroup and try again tonight. Saturday's race really depends on Noah and if we think he can handle this, we don't want to push him into something just for the sake of doing it. We're hoping that this is all just new for him and that with a few more trials that he'll be good to go. He did pretty good on it at the bike shop - but we didn't strap in his legs then, and that maybe something we have to consider doing on Saturday is not attaching his legs if we can't find a way to properly adjust it for him.

It's been an emotionally exhausting few days. With ups and downs, hopes and dreams, and I think a lot of feelings that Chris and I are experiencing, although fueled by the bike situation, are just an extension of our continuous struggles on this special needs journey. We just continue to try so hard and many times we just fall short - flat on our faces despite all our efforts to give Noah all that we can, to help him in all ways possible. It is very difficult to have a child that can't do things like other children, and you want to find ways to help him do all the things others can. People challenge me all the time saying does Noah even know the difference? Well yes - yes he does. He is cognitively intact. Cerebral palsy has taken his physical abilities away but not his intelligence. Noah is in there - locked in a body that doesn't work for him. So yes he very much knows that his brother can ride a bike and he can't, he knows that his brother can climb on furniture and he can't, he knows that others can walk and talk and he can't. And yes Noah gets frustrated because of it, and so we try to find as many ways as we can to make him apart of things. We must be his legs, his voice, his arms, his access to the world. This is a hard job, harder than just being a regular parent. It requires like they say the strength and stamina of a draft horse. There are no breaks, there are no timeouts, no time to let grass grow between your feet because every minute of the day we're trying to make Noah's life the best than it can be.

Thank you so much for your continued thoughts and prayers, we still very much hope to report that Noah's USA Pro Challenge Race was a complete success despite the bumps in the road.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.