Saturday, August 25, 2012

Dare To Win

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A miracle happened and Noah raced today. After two very difficult trial sessions on his bike at home, his dad and I decided that Noah's participation was nearly impossible. He was crying and screaming hysterically by being on his Freedom Concept Bike. I likely think we have some adjustment problems to figure out. I think the bike isn't quite as fitted to him as it needs to be. But we were having a terrible time trouble shooting what the root of Noah's problem was. We knew that there was likely no way he'd be able to race. We called the sponsor to give notification of our withdrawal, but they encouraged us to attend - even if Noah didn't want to ride. They suggest that we disconnect the foot pedals to make it less stressful and demanding for him, so we did.

We all got up bright and early and headed to Golden for Noah's big race. We had no idea what to expect. We figured either things would go really well or they'd go super bad. Much to our surprise Noah was full of lots of happiness and wanted to ride today. He got a special team jersey which he looked so handsome in, and you could tell he was glowing with pride. Noah knew that this was his big day. With dad behind him, they went the distance. Noah was presented with a medal on the finish line. The back beautifully engraved with the message "Yesterday I dared to struggle, Today I dare to win" a quote by Bernadette Devlin. That statement couldn't have been more the truth for Noah. Just when I think all is lost... all hope... Noah reminds me to have a little faith, after all he'll do everything in his own time.

The sponsors were truly wonderful and it was great to see old friends and therapists, and other kids that we have the pleasure of seeing from time to time as we pass each other at various therapies. The love was tremendous. And it was so special to have Noah's grandma cheering him on as he reached the finish line. We all got teary as Noah did it! Chris wants to find a way to frame his jersey and his medal and hang it in his room. What an accomplishment for our little Noah. We are just over the moon happy for him.

A day of answered prayers.

You can watch a slideshow of Noah's big day:


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

Thursday, August 23, 2012

Working on the Ride

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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.

Tuesday, August 21, 2012

USA Pro Challenge

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We've been working since the beginning of the year to try to find a way to get Noah a Freedom Concepts Bike. I lost count of the many applications I filled out to foundations seeking help. After many months of hard work and two foundation grants later Noah was gifted with a Freedom Concepts demo/floor model bike - the dream came true. Noah received his bike today. And in a matter of moments like the anticipation of opening the best and biggest Christmas package you've ever received; the dream is shattered just as quickly. We pulled the bike off the truck with a 53ft trailer; it was strapped only to a wall and not attached to a pallet. When the bike was lowered to our street I noticed immediately it was in pretty bad condition. I received a call last week from the vendor that a new bumper for one of the sides and a foam grip was being sent to the house so we could "fix" the bike upon arrival. That caught me off guard as I was led to the believe this bike was in amazing near perfect condition as it after all was a demo/floor model. But the problems were far bigger than just handlebars and a missing bumper. It's severely rusted not to mention tremendously dirty. It also didn't have the included headrest that they said would be included for Noah. One foundation donated $1,000 the other donated $1,500 for a total of $2,500 and I simply can't believe this is what $2,500 buys. The bumper part didn't come with hardware for us to attach it to, and although they tell me I just need to use soap or lubricant to put on the handle bars Chris thinks we'll likely rip or tear it trying. So now I have to have someone to fix it and who knows if I can afford that. I couldn't refuse the bike because ironically Noah was invited to participate in the USA Pro Challenge Bike Race this Saturday, August 25th on the starting line in Golden, Colorado. I don't even know if his participation will even be possible now.

Rust and Damage of the Freedom Concepts Bike

For those of you not familiar with cycling: "USA Pro Cycling Challenge is the most demanding bike race ever held on American soil, with racers experiencing breathless altitudes, day after day. The race brought the high speeds, danger and adrenaline of professional cycling to elevations more than two miles high in some of the most picturesque terrain in the world—the Colorado Rocky Mountains. With altitudes and downhill peaks double what riders usually endure, the Colorado Rocky Mountains presented a course that was as much a part of the race as the riders themselves. For seven consecutive days, from August 22-28, 2011, 135 of the world’s top athletes raced across 518 miles through the majestic Rockies. This inaugural race in Colorado featured the best of the best in professional cycling, competing on a challenging course through some of America’s most beautiful scenery, including cities such as Aspen, Vail, Breckenridge and Steamboat Springs. Nearly 1 million spectators viewed this race from the roadsides along the route while 161 countries and territories broadcasted the race on television, including NBC and Versus. The USA Pro Cycling Challenge was one of the largest cycling events in United States history."

It is quite an honor for Noah to be asked to participate in such an event. And something we were very much looking forward to. I just don't know how safe or feasible using this bike will be. And with less than a week, I can't honestly tell you at this moment if Noah will be racing as planned. And that's a pretty devastating feeling for Chris and I. We had our hearts literally set on this amazing opportunity for Noah; for the world to see our miracle working so hard at riding a bike like other children, and I don't know if that will happen.

Around every corner if feels like I am always fighting an uphill battle when it comes to helping Noah, getting him what he needs. Nothing is simple, nothing is easy, nothing ever goes as planned, and I work endlessly on Noah's behalf. There are days when I stay up late at night after everyone is in bed to fill out applications, cruise the internet for more help; to research therapies and equipment... and after it all I'm no further ahead for my efforts than when I started. I sit here writing with huge tears just flowing down my cheeks and I do not have a plan on how to make this work or what to do. I am going to say a lot of big prayers for some direction and where to go from here.


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

Thursday, August 16, 2012

On the Mend

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Noah' s Shrek Building Kit from Lowe's

Noah has been recovering from a cold. He is coming through it rather well with some antibiotics that made the world of difference in catching it early. Noah of course shared the germ with his little brother. As hard as I tried to keep the two of them apart for germ quarantine, the two of them are simply magnets that find ways to get to each other. If Luke is in the pack-in-play then Noah knows he must roll to get to Luke. Big brother is really smart and knows that he must be near little Luke. The sudden onset of illness (which I think came from a sick hairstylist when they cut Noah's hair and I simply dismissed it as potential allergies), put a big damper on a set of plans that we had over the weekend. Really we rarely, if ever make plans, however this particular weekend we were invited to a wedding which was really wonderful that we were thought of and asked to be included in a couple's special day, we also had hoped to go to the Ice Cream event at the zoo, and build a Shrek dragon at Lowe's with Noah, and Noah also missed his last summer session of hippotherapy due to his illness.

The zoo was so nice and refunded our tickets since Noah was ill; something they didn't have to do but their kindness doesn't go unnoticed or unappreciated. And Lowe's allowed Noah to take home his Shrek kit and Noah and his daddy can build it when he's feeling better. So it all kind of worked out okay, even though at the time we were very bummed that we weren't going to be able to participate in anything we thought we'd be able to. But Noah is on the mend and that is always the most important part is keeping him healthy and happy.

Hopefully Noah will be much better by this next weekend and we can work on him helping me bake zucchini bread in the kitchen. Noah was invited to participate in a therapy calendar of him cooking! And I think he'll be great assisting me with a batch of ingredients it should be lots of messy fun for us. And then maybe his daddy him can get to building this little Shrek dragon from Lowe's! We try to include Noah in as many activities as we possibly can. We don't want him to ever feel left out of anything. It often requires a little bit of extra work and thought, but between Noah's daddy and I, we usually can come up with a way to make it work. It's not like neighborhood kids are going to come knocking on our door asking for play dates, so as mom and dad we have to find ways to make sure Noah has the ability to participate in the world like other children his age. And it's important for Luke too, Luke just can't sit on the sidelines because of his brother's special needs, and Chris and I have the philosophy that we never leave a member of the family behind. We just don't. It is all four of us, always and forever and we'll do everything together. So if someone thinks they'll invite Luke but not Noah think again... we're a package deal. A family in every sense of the word.

Noah also was invited to have his pictures done at his therapy school to be featured in brochures and literature about school events. We were so excited for the invitation and honored that someone would think Noah would be a perfect fit. Noah got his pictures taken in a formal tuxedo, 60's spiral tie-dye and during pool therapy - where he was most certainly all smiles. I can't wait to see how they all turned out. I can't tell you how amazing it feels to be included and surrounded by people who understand - and I mean genuinely understand and care. People that don't look at Noah and think wow what a challenge and inconvenience it will be to try to photograph a child that can't sit and has no trunk control. There are days when you're just so overwhelmed with this journey from battles with SSI and Medicaid, to calling equipment vendors, remembering all of Noah's therapies, schedules days, the amount of time required to load him up for the simplest of adventures. And kindness and understanding along the way well it's like pure gold. We've met some really beautiful people along our journey and they are like jewels that I put in my pocket and know yes, they are keepers and forever friends in our lives. They won't just say they don't have time for coffee or be too busy to invite us to the zoo, or ask us to take a walk at the park with their kids. They mean it - they mean every loving word of "I'll be there for you."

It's been so nice to keep in touch with Noah's foundation photographer with Inspiration Through Art, although we haven't known each other long, she sends me the most loving emails as if we've been friends since childhood. She has three boys and somehow I can picture the two of us one day somewhere with five boys in tow sharing our mommy experiences. God does send people along this road he just knows exactly the people to place, when, why and how. And I am so blessed to have two very amazing neighbors, Tracie and Samantha who in a crisis offer to help grocery shop, or even bring us food knowing we are experiencing some difficult times. It takes a special person to care in those ways. Most people wouldn't even consider does the mom up the street with two sick children need any help today. They are always checking in periodically offering help and comfort. I am truly grateful for those that come into our lives. They leave their footprints in our hearts and we owe them a lot of thanks for making our difficult days a little brighter.

Please say a little prayer that Noah continues to stay on the path of wellness. We've been working really hard to get both boys well.


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