All Times Are Central. Estimated times may change based on weather and Matthew's progression through race. Watch LIVE GPS Tracking for accurate location and refer to predicted time chart that will be updated throughout the race.
Regardless if you have followed this journey for one day or the last 3 years, I wanted to take this time to say, THANK YOU!
When I first started this blog, it was really just a way for me to keep a diary of my training that lead up to my attempt to become my son's Ironman triathlete in honor of his recovery from three life threatening surgeries. Little did I know at the time that it would become a blog that gets nearly 10,000 hits a month. None of this would have happened without you typing in or clicking on the link to navigate to www.shawnsironman.com.
I am not a writer, celebrity, or public relations guru. I am just a simple dad that wanted to do what I could to prevent another family from feeling that hopeless and alone feeling that my family did when we found out that our child was born with life threatening birth defects.
Shawn's Anomaly Awareness Run
Tomorrow I will start my journey to complete my second Ironman triathlon (2.4 mile swim, 112 mile bike ride, and 26.2 mile run), but I could not have gotten this far without all of the support from sponsors and fellow athletes. You have confirmed to me that this journey is worth it. Thank you specifically to Shauna Hall, Rich Wilkins, Karrie Bellard, and Ron Stitt for being my training partners leading up to the Ironman Florida. There were several times that I just did not want to get up do the long runs and bike rides, but I knew that you would be waiting for me and wonder where I was if I did not show up.
Family H.O.P.E. Flag Signing At Cook Children's Hospital
I want to thank all of the families that have placed their loved one's name on the H.O.P.E. Flag and allowing me to represent your family. I hope that you find the inspiration to keep pressing on one day at a time and know that you are only given what you can handle. You may bend, but you will never break.
Thank you to all of you that have donated or plan to donate this weekend to our mission to the birth defect research and care package project at Texas Children's Hospital.
I want to thank my family for putting up with me while I was absent during the weekend mornings training and being my "Ironman Support Crew".
I don't know what tomorrow event results will be, but regardless where, when, or if I cross the finish line tomorrow of the Ironman Florida, I plan to take it one stroke, one pedal, and one step at a time...
We are only a week away from flying the H.O.P.E. Flag for the first time, so I felt that it was important to provide a timeline blog to let everyone know about the origin of the flag.
In the early start of 2013, I was still flying high on emotion after my successful completion to become, "Shawn's Ironman" at the Ironman Texas, and I knew my journey was not over. I was trying to figure out the best way to carry on the legacy and include other families in my training and journey since birth defects affect 1 in 30 children.
In all of the 30 races that I have completed, I have always carried Shawn across the finish line or if it was a event like Ironman that did not let me do so, I would carry something of Shawn's (Shawn's Pacifier, Favorite Toy, Etc). I decided to do that for every child I could get in touch with for the Ironman World Championship if invited.
By rule, Ironman does not allow family members run across the finish line like most other events. Even if they did, I would not have been able to carry so many people, or could I?
After being inspired by BethAnn Telford's finish at the Ironman World Championship, I decided to design a flag that I could carry across the finish line with me if I made it to the Ironman World Championship through the Kona Inspired program. The plan was to cover the flag with names of those that were born or lost their lives from birth defects. There is also a lot of symbolism about each part of the flag that you can read more about if you go to the H.O.P.E. Flag tab at the top of the page.
After discussion with some close friends and my wife, we decided that we did not want the H.O.P.E. Flag (Helping Others; Providing Education) to just be a digitally produced flag. We wanted the flag to be one of a kind and represent the journey of humanity bonding together as one voice to provide hope and awareness for the prevention and treatment of birth defects. I reached out to the founders of the Museum of Cultural Arts Houston (M.O.C.A.H) to see if they would help hand paint the flag. Rhonda Adams did something even better, by creating a workshop where volunteers & families affected by birth defects could personally paint the flag. It was an amazing experience:
After the initial creation of the flag, we started to place the names on it, and had the opportunity to take the flag to Texas Children's Hospital. Of course each name has a story. All are different in each way, had the same feeling and being the only family having to deal with birth defects because there was not information and the question that Rachel and I did: "Why did this happen?" Each time of placing the name on the flag or watching a family member or child place a name is special beyond words.
CiCi & Shawn (Shawn's Nanny)
This has made the H.O.P.E. Flag develop a life of it's own that grows and changes all the time. I get emails all the time from family members that want their loved one's name placed on the flag. We have also had a lot of help along the way including the angel that Shawn's called "CiCi" for nearly 3 years of life as his nanny. CiCi helped by sewing the two sides of the flag together. It was a special moment for her too.
Unfortunately, I did not receive the invitation to the Ironman World Championship, but that will not stop me. I will continue to enter the "Kona Inspired" program every year until we receive the invitation. I also plan to do at least one Ironman event a year. The Ironman Florida is my event this year, so I decided to give the families represented by the flag an option of watching the H.O.P.E. Flag be carry across the finish line with me at these events.
Not only was their a resounding request of carrying the flag with me at each Ironman event that I compete in, but any other major event and for the duration of the running portion of the event. This means, that I will carry the flag for the whole 26.2 mile run of the Ironman Florida barring that it is not raining (I don't want to damage the flag) and the Houston Marathon in January.
This will be tough, but I will thrive on the strength that I get from each name. I also have the advantage of having a custom running flag pole being constructed of carbon fiber that will help reduce the weight of the finished flag thanks to Adam Weeks of Carbon Fiber Tube Shop.
I am not sure what will happen on November 2nd. I hope for the the perfect situation of crossing the finish as the H.O.P.E. Flag proudly waves in the air, but I also have to be realistic. By the time I grab the flag for the first time, I would have already completed approximately 8 hours of strenuous exercise and covering 114.4 miles. I will need you as a follower and supporter of this journey to push me along.
On the days leading up to the race and race day, please send your messages via Twitter and Facebook using the hastag #HOPEflagchallenge. During the run, my wife will read your messages to me as I pass by. If you are at the event, please provide me with "MORE COWBELL"! This is not just my journey or Shawn's journey. You as a supporter are a part of the success of this journey. It depends on you sharing with all your friends and family. Each person that become aware is accomplishing Shawn's Anomaly mission of providing education, hope, and help to families affected by congenital anomalies.
To donate to the mission to fund research and provide families in the hospital with care packages, pleas to to www.hopeflagchallenge.com.
The 2013 endurance racing season is coming to a close, and I have spent all year training and getting ready for my big race, the Ironman Florida (2.4 mile run, 112 mile bike, & 26.2 mile run) which will be held on November 2, 2013. At that event, I plan to carry the H.O.P.E. Flag.
The H.O.P.E. Flag (Helping Others; Provide Education) was created and hand painted through a workshop at the Museum of Cultural Arts of Houston (M.O.C.A.H). Since that that we have allowed family members to place the names of children either currently affected or lost due to birth defects. Names continue to be place on the flag every day. In effort to provide them HOPE, I promised those families that I would train and get ready to carry the flag with me across the 2013 Ironman Florida finish line. You can find out more about the symbolism of the flag and creation by going to H.O.P.E. Flag Page.
It is amazing what we have learned about birth defects since the beginning of our journey in 2011. Although Shawn's specific conditions were rare, 1-in-33 children are born with some sort of birth defect. Birth defects are also the leading cause of infant mortality. We have also found that there is very little funding that goes to research, education, and awareness. This leaves parents like Rachel and I feeling hopeless and alone while our children are being treated. Rachel and I decided that we would do whatever it took to prevent another family from going through what we did with Shawn alone.
Thank you in advance for your support of this effort. This could not be done without you.
In 2012, Rachel and I committed to raise the first $25,000 of the Shawn's Anomaly "Parent Packages" are just a small gesture but it has proven to have a huge impact for the families that receive it. Other than just providing them with basic toiletries, the parent packages provide the parents with a sense of hope and the assurance that they are not alone during this tough time.
port Fund at Texas Children's Hospital. The money is used to help fund congenital anomaly research projects and provide care packages to families that are currently in the hospital with their children that are undergoing treatment and surgeries to repair their birth defects. These "
I was amazed and honored to be joined by several other every day and professional endurance athletes that chose to pick one of their events this year to help raise money towards the $25,000 goal. Together we have raised approximately $10,400 in a little over a year. I never would have imagined that we would be this successful in such a short time, and we could not have done it without your help. Once again, it has proven that "Anything is Possible" and convinced me to consider this next challenge.
I thought it was very interesting that we have $14,600 left of our goal, so to help finish the season with a huge bang, I think it is possible that with your help we can raise the remaining $14,600 in the 14.6 days that lead up to the finish of the 2013 Ironman Florida by donating to my Ironman Florida "Your Journey, Your Cause" page.
On race day, I will carry the H.O.P.E. Flag for the duration of the 26.2 mile marathon of the race while wearing a donation bag. If you are at the race and you see me coming, I ask you to please contribute $1, $5, $10, $20, or $100 donations to the bag as I run by. You can also go online and donate to my fundraising page by clicking the donate button above. Remember that no donation is too big or small. Every dollar counts. You can follow my progress live on race day by going to www.hopeflagchallenge.com and please share the link on Facebook and Twitterusing the hash-tag #HOPEflagchallenge so all your friends and family can help as well and send messages of support that will be read to me during the race.
After the Bridgeland Triathlon and after a good month of training, I felt very confident going into the Houston Triathlon that I may see some great results. I also wanted to dedicate this race to one of the bravest little girls I have ever had the chance to meet: Amaya Hope.
Amaya was born with Hypoplastic left heart syndrome and has had many surgeries in her first of year of life. I first met her and her mother when I made a trip to Dallas where Amaya was in the PICU at Children's Hospital of Dallas awaiting for a heart transplant. I brought the H.O.P.E. flag to the hospital so her mother could put her name on it. I did not realize at the time that her name was going to be placed on my heart as well. She just did not have the normal pink color that most babies have, but she was strong!
I wrote her name on my forearm so I could see it while on the bike and run. I am so glad I did, because I know that seeing it gave me added strength to keep going and push harder.
I am happy to say that Amaya did indeed receive a heart transplant and so far the surgery has been a success. She now has established that pink color that we see in all children and was released to go HOME the day after the triathlon! What a miracle and inspiration!
The race was changed slightly since the last time I raced it in 2011. The swim use to be a 2 loop swim, 2 loop bike, and run through the Towne Lake neighborhood. This year the swim was redesigned to be all one loop. This was exciting to me, because I knew that I would be able to keep focus on my rhythm. For the first time in a very, very, long time, I felt comfortable in water. I have had anxiety in the water for a long time since the Kemah Triathlon in 2011 when I was kicked in the head by a much slower swimmer and nearly knocked unconscious. I have not been able to feel comfortable in the water since that day and especially when I was around other people. I have been working on it a lot, however, I saw a huge difference at the Houston Tri.
If there was one complaint that most people have about the Houston Triathlon is that the distance between transition and the swim exit. It is over 1/4 mile that you have to run to get to your bike. Most say they hate it, but I have a complete opposite opinion about the issue. First of all, this distance is the same for everyone, and second, it gives me a chance to let my heart rate go down before I have to get on to the bike. This proved to be very beneficial. I wish all of the transitions were that long.
The nearly 24 mile bike ride was my first test in race conditions since my master bike fit with Tad Hughes. I knew that I would learn a lot about how I would feel about saddle pressure and upper body fatigue. Unfortunately that has been a huge issue for me in the past, and that is was one of the main reasons that I chose to go to the Tad Hughes Custom Fit Studio to have my bike set up for "long course" racing. The fact of the matter is that the bike portion of the race has always been the part that I disliked the most, but since it is the longest distance and time in most races, I wanted to do what I could to make it more enjoyable. Little did I realize that comfortability would also correlate into being faster and for the first time ever in a olympic distance race I averaged over 20 mph for the bike portion for the first time ever in a race regardless of distance. I have to give all credit to Tad for this. I know that being more comfortable helped not only my speed in the race, but the training leading up to the race. I can't believe that I neglected this part of preparation before now. If you don't get fit by Tad, then you are just settling for second best! Thanks Tad for all your help.
I finally made it to the run feeling more refreshed than I ever have felt before, so I decided to take
advantage of that. It was pretty hot out there and most of the course was out in the sun without much shade, so it took a little longer than I expected to be my "run legs" going. Finally after about 1 1/2 miles into the run, I found my groove and just in time to receive a ice cold sponge from the amazing volunteers at the race. This is just one of many reasons why I think that OnUrMark is the one of the best race production companies out there. They put a strong emphasis on not only making a race first class, but raising the bar of what to expect. I am so lucky to live in the same city that these races are held. If you are planning your 2014 race, I highly recommend you go to www.onurmark.net and see if any of their events match your race schedule. You will not regret it.
I finally made the last turn and could see the finish line. I was worried when I had not seen Shawn and Rachel yet, so I was hoping that they made it to the race in time. About that time, I saw Shawn running to me. I was so excited to see them both. I grabbed him up and gave him a big hug. This was a huge accomplishment for me considering that the last two time that I did this race, I could barely hold up my arms, but now, I was fresh and feeling great. I looked at Shawn and said, "You ready to finish this?" He smiled and said, "YES DADDY! Let's Do It!" And we ran our way towards the finish line.
Total: 2:58:05.7 PERSONAL RECORD- THANKS AMAYA. WELCOME HOME!
This may be my last race before Ironman Florida. It all really depends on certain things working out and timing. We are now less than 50 days away from race day, and I hope to keep everyone up to date the steps towards becoming a 2 time Ironman and my training. Most importantly, I hope to share some stories about some of the families along the way. Thank you all for your support. You may never know how much it motivates me to keep going.
August was a time to finally start getting back into the groove of racing. I had finally started to get back to training after a long time off because of my foot injury. I knew that if I was going to get ready for Ironman Florida, I knew that I had to start training regardless of the pain.
Jackson Wyers, Shawn, Matthew, & Karrie Bellard
My first attempt at racing is where all of it started three years ago: the Bridgeland Triathlon in Cypress, TX. This arguably is the best sprint triathlon in the south mainly because the course is fast and the attention to detail by the promoter OnUrMark Productions. I give a lot of credit to me continuing in triathlon because this was my first ever triathlon 3 years ago. The atmosphere is just electric.
I was fortunate to be joined with two of the Team Shawn's Anomaly iDO! 5: Karrie B
ellard and Jackson Wyers. I as also joined by our honorary team member Brittany Breaux whom was fundraising for the medical research goal at Texas Children's Hospital. I am proud to say that she raised $150.00 for the cause. She actually passed me on the run and looked in top shape. Thank Brittany for your generous heart and choosing Shawn's Anomaly as your Reason2Race. To check our her fundraising page, CLICK HERE!
After Swim
I arrived to the swim start feeling a lot of butterflies. It had been over a year since I lined up "between the buoy's to start a race, and I was just not sure how my body would react. I had dedicated my race to little Patrick whom was born with Gastroschisis. I knew just thinking of him would get me through the tough times. The horn sounded and took off swimming. Even though the swim was 500 meters, the water was hot from the Houston summer, so I was focusing on saving my energy for the bike and swim. Sadly, I can't say that I ever got into a good groove while swimming. I felt like I was struggling a lot, but every time I spotted the swim exit, I could see my great friend, Shauna Hall, waiting and pulling out some of the swimmers. It was great to see her after the swim.
Not Actually Me, but very similar!
The transition (T1) seem to go pretty smoothly. I do remember thinking before the race, "Should I put clip my shoes onto the bike, or should I wear them to the bike mount line?" I decided to lock them into the bike since the transition was on grass and I did not dirt and grass get into my cleats. This ended up being a bad idea, and I made what w
as pretty much a "rookie mistake".
There are several ways that triathletes will mount their bikes. Some will stop at the mount line and get on to the bike while others will have a little more flashier and faster mount by running next to the bike and jumping over the top bar and landing on the saddle. The "Flying Mount" has always worked for me pretty well, but this day, well, not so much. As I swung my leg over my bike, it got caught on my water bottle cage and I lost my balance. It all resulted in me crashing. Fortunately, I the only thing that was broken was my pride, and I kept going. Fortunately the remainder of the bike and my dismount was much better.
As I entered the run, the outside temperature had elevated over 90 degrees. It was going to be a hot run on a mostly open to the sun run course. It was tough to get my legs to start working, but finally after about a mile, I started to get into rhythm. Shortly after, the finish line was in sight.
One of the best parts of OUM events is that Aaron wants them to be a family friendly environment. In the past, I have grabbed Shawn and crossed with him across the finish line. Now that Shawn has gotten older, he has become a pretty good runner, so I initially grabbed him, but right before the finish line, I decided to set him down and let him run across the finish with me. This became a very special moment for both of us that was captured by a friend of mine. Thank you, Donna Ahrendt, for capturing this special moment.
This past Sunday marked the 1 year anniversary of the last time I competed in triathlon or any endurance event for that matter. I was forced to take some time off due to a lingering injury that would just seem not to go away. Once I received the "Green Light" to start training again, I started a training plan, that really did not have a clear destination until we heard the recent news about "Kona Inspired". I have to admit that it was hard to keep motivated because I just did not know where the finish line was. Now that I know that Ironman Florida is my final destination of 2013, it was time to do some planning.
For me, finishing an Ironman is not just one journey. It is a series of journeys and goals that have to be finished step by step. When I first started my journey in 2010 to become "Shawn's Ironman" I had to strategically plan out each step to stay inspired. I planned a sprint triathlon, Olympic distance triathlon, 1/2 Ironman, and then eventually the Ironman Texas. I have no doubt in my mind that if I had a bad experience with my first race, that I would have never made it through all the training.
Regardless of how far you want to go in your triathlon journey, I am pretty sure there is not a better place to start than where I started: The Bridgeland Triathlon in Cypress Texas presented by Onurmark Productions. I knew that if I wanted my Ironman Florida journey to be successful, I would have to include as many OUM races in my steps as I could. No matter how many times I you do these races, theyl never get old.
Onurmark Productions is Houston’s largest event production company. For the past five years they have set the standard in quality and safety in endurance sports in and around the Bayou City. Their goal is to supply Houstonians and visiting out-of-town athletes with a unique experience of the highest caliber.
I got to see the behind the scenes of how the race was put on last year when I was one of the OUM race coordinators for the Kemah and Bridgeland races. It takes tons and tons of work to put on a race. Planning a preparing takes months and nearly non-stop work of several the days leading up to the event date. It was very hard work for all those involved. Aaron demands excellence from all of those that surround him and no detail is overlooked.
I can't say enough about the owner, Aaron Palaian, as a person either. I have gotten to know him very well over the past three years, and I consider him one of my closest friends. He has been extremely generous with his time and money not only towards Shawn's Anomaly, but several local charities. Regardless how busy he gets, he always finds time to provide a word of encouragement or make me laugh. Some people may have a different opinion about him than I do, but that is because they have never taken the time to get to know him. The Houston triathlon community would not be where it is today without his contributions.
I very much enjoyed working the races, but what upset me the most about that experience was the fact that I could not race the best events. It also was big demand on my time during race day that took me away from hanging out with the other athletes that are racing for Shawn's Anomaly. I am so excited that I am going to be able to race both Bridgeland and Houston Triathlon this year.
There are still a few spots left, but I know they will fill up fast. I encourage you to sign up for the race, volunteer, or just come out and cheer on the athletes for free. Who knows, maybe you will get to see Shawn and I cross the finish line together!
Since my last post just after finding out that we did not receive enough votes to advance in our group and we would have to await another two weeks to find out if we would receive a wildcard spot, I got what I am calling "Kona Inspired Hangover". I was really exhausted from all the campaigning to get votes. I have spend the last two weeks celebrating my son's 4th birthday, hanging out with my in-laws and watching a cousin get married.
There has been several trips to the Texas Gulf Coast fishing or going to the beach. Several days of swimming, biking, and running but not knowing if the ultimate destination would be Kona, HI. All of that hope and anticipation came to an end today at 11:00AM CST when Ironman announced the wild card winner, and it was not me.
I have to admit, I was initially heartbroken, and I even left my office on my lunch break today to just shed a few tears. A lot of you may think that I am crazy for being so emotional about this, but that may be because you don't understand why I wanted to do this so bad. It is not about me, or trying to attempt something that is impossible to so many. The fact of the matter is, I KNOW it is not impossible. I know it can be done, and I just wanted the opportunity to prove and inspire others.
The Ironman World Championship is just a race, but to anyone who has ever heard of it know that it is the hardest one day endurance race for an individual. This "race" however is not the toughest test of endurance. Any mother or father that has watched their child cling on to life because they are suffering from a birth defect can attest to that. It takes every ounce of strength to get through every hour of every day. Eventually the days start to run together and you are not sure even what day of the week it is. The feel of exhaustion both physically and emotionally just starts to feel natural after a while. You constantly look to anything that you can cling to that will give you hope.
I remember the day that I was sitting in my back yard smoking a cigarette after completing my first 5K race when I decided to attempt to become an Ironman. I knew that if I was going to do it that I could not do if for myself, I had to do it for a bigger and greater purpose. At that time I did not even know that there was other Ironman events all around the world. All I knew was Kona, and I was going to do what I could to get there.
I have changed a lot since that day in the back yard. I am a seasoned non-smoking age group athlete now. My desire to complete the "Ironman in Hawaii" has now changed, but not in the way that you may think. It is STRONGER! It is an incorrigible fire that can only be suppressed in Kona, HI.
The finish line of this journey may be Kona, but it does not determine victory. Victory is achieved every time a someone gets off the couch and becomes active. Victory is achieved every time our children see our activeness or when we use it to provide inspiration and assistance to the Shawn's Anomaly mission. Victory is watching Team Shawn's Anomaly grow one athlete at a time and seeing them achieve personal records because they chose the SA mission as their Reason 2 Race. Victory is watching a family be provided HOPE because they see that other people care and understand what they are going through.
On October 29, 1941, U.K. Prime Minister Winston Churchill visited Harrow School to hear the traditional songs he had sung there as a youth, as well as to speak to the students. When he was invited to give a speech, Churchill stood before the students and said, "The pessimist sees the problems in every opportunity. Whereas the optimist sees the opportunity in every problem. Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never ever, ever, ever, give up. Never give up. Never give up. Never give up."
This journey is not about me and it never will be. It is about providing hope through the strength of others. It is about helping families tell their stories as method of therapy and a way to educate others. It is about inspiring others to attempt what they may once considered impossible. For that and much more is the reason that I will never, ever, ever, ever give up.
To all those families that I have been honored to represent, I will not give up. You deserve that. Your loved one's name will cross the finish line of the Ironman World Championship. I don't care how long it takes for me to get there. In the mean time I will plan to run at least one Ironman event per year around the world to help continue the awareness and educate others. If you give me the permission, I will carry the HOPE flag with me across every Ironman finish line starting with Ironman Florida in this November.
Thank you all for your continued support. Kona Inspired 2014 campaign starts in 5...4...3...2...1...
Today was a very busy day for my family. It was the final day of the Kona Inspired voting, but most importantly, it was the day that Shawn and I got up and got ready to go the hospital where it all started to reveal the H.O.P.E. Flag. It became a family affair since my mom and Shawn's "YaYa" was in town and Rachel was able to pull away for a few minutes from her hospital to come over. We were excited to see several well deserving kids that are at the hospital currently place their name on the flag. We also were able to meet up with Houston's Buzz Lady, Roseann Rogers, so she could bring her son Nikhil to come put his name on the flag. Nikhil is the first child to actually place his name on the flag by himself, and I was really honored to watch that happen. He was born with a congenital heart defect that took several months to treat.
We were very fortunate to get coverage from KPRC Local 2 News in Houston and NPR KUHF Radio. Here are the stories:
As I watched the coverage and even listened to the story on NPR, I kept seeing the same pattern. All of the stories are somehow centered around me instead of what this is all about. It is about the 1 in 33 children born with the birth defects. It is about the parents that use every ounce of strength to get through the day. It is about the collected effort of athletes and volunteers that are doing the best to make a difference in these family's life.
Today I saw that more than ever. It took all my strength not to shed tears in front of the children that came in to sign the flag at the reveal. One specific child and I had an amazing conversation. He was not able to walk and had to be wheeled to me so we could chat. He was a little shy at first but later told me that he had a severely tethered spinal chord that prevented him from walking. Shawn's third surgery was for the same thing, but his chord was not as bad as this child's He looked at me and said, "What is the Ironman?" I started to tell him and then his head dropped, but then he looked up at me with tears in his eyes and said, "Thank you!" I started to tell him that he was welcome, but before I could, he grabbed my knee and said, "Thank you for being my strong legs!" I sat in silence for what I felt was an eternity. He help remind me about what all this is about.
This journey, this flag, is not about me... If you felt that it was, then I don't blame you for not wanting to support my Kona Inspired campaign. It is a little confusing, but it is all over today. I can go back into my cave and continue to focus on the stories of children, parents, and the great athletes that are helping Shawn's Anomaly raise awareness for the mission. One specifically is Yvonne Hawley who will be racing at the Ironman 70.3 Buffalo Springs this weekend. Please take the time to show her your support and sponsor her fundraising page: https://my.reason2race.com/YVONNEGUTIERREZHAWLEY
To all of you that understood that Kona Inspired was not about me, but about the 1 in 33, I thank you for the support and votes. The great news is that we reached over 3,500 in the 11 days of voting. 70% of those that came to the site were new visitors from over 62 nations in the world:
We still have the "Wild Card" spot that we may receive through Kona Inspired, but even if we don't make it to the Ironman World Championship the Shawn's Anomaly mission is making it to the WORLD. Thanks again for all of your hard work in voting and sharing. WE WON!
Yesterday was very busy day for our "Beautiful Boy" Shawn. It is hard to believe that today that he is turning 4 years old at 1:06 pm CST. These past 4 years have flown by.
Of course every one of Shawn's birthday comes with a little bit of anticipation and nervousness for Rachel and I. Shawn has to do his annual follow up to make sure that his "miracle surgeries" can still be considered a success. Unfortunately, because of my new job, I was not able to go with Rachel and Shawn, so that added another level of tension for Rachel and I.
The check up started with an ultrasound where the put the gel, or as Shawn calls it, the "Goopy Goop" on his belly and back so they could look at his repaired urethra and area where his second kidney would have been. The ultrasound had several colors and Shawn love that. He said that his good kidney was on fire since it was red and orange.
After that, Shawn and Rachel went up to the urology department floor they checked in to see our new doctor. Since the surgeon that did Shawn's surgery, Dr. Lawrence Cisek, has moved to the University of Minnesota, all of his patients were transferred to the other doctors in the hospital. Because of the complications of Shawn's case, his new doctor is the Director of Surgery, Dr. Edmond Gonzales. We feel that we are in good hands. Check out the intro video of Dr. Gonzales:
I was able to FaceTime in when Dr. Gonzales came in to talk about Shawn, and I was really impressed on his ability to communicate with us on a level that we can understand and relate to. He also told us that Shawn's surgery is still classified as a success and he is very happy to see that the ultrasound did not identify any issues of concern. Of course, Rachel and I both had a sigh of relief after that statement, and our next check up will be on Shawn's 5th birthday.
I got home to find that Shawn's was trying to take a nap since he missed his afternoon nap yesterday, and I started to go to work on assembly of Shawn's "Big Boy" bed. The bed was originally mine when I was growing up, but the box spring and old mattress was left to be desired, so we purchased a new mattress that somehow came in a 2'x2'x2' box (Don't Ask Me How). I had stopped by the home improvement store to pick up some wood that I could use to build a platform box that would replace the box springs. I set up my table saw, mitre saw, compressor, and various nail guns (insert manly grunt here) and started to go to work when all of a sudden Shawn came out wiping his eyes and telling me, "Daddy, you woke me up with all that noise!"
After he figured out what I was doing, the sleepiness was exchanged with excitement, and he was ready to set up his new bed. He got out his plastic tools and started banging and screwing various places on the bed to help daddy, and before you know it, we were done. He jumped on it for the first time and I could barely see the the excitement on his face through the tears in my eyes.
As we started our nightly routine of reading a book and then singing, Shawn stopped me right before we started singing Beautiful Boy by John Lennon to say, "Daddy, I am don't want to sing that song anymore." I looked at him and said, "Why not?" He then went to tell me how that was a baby song and I should sing something else.
I knew that is was time and he was old enough to understand why we sing the song, so I decided to tell him this story:
Shawn was in the hospital about to have his first surgery. Even though he was just a baby and 10 days old, he knew that something was wrong. He would cry and cry in the hospital bed. Nothing could stop the crying. It was stressful on all of us. All of a Beautiful Boy. The words just seemed to be perfect:
sudden, I picked him up and started to sing the first song that popped in my head,
Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Out on the ocean sailing away
I can hardly wait to see you come of age
But I guess, we'll both just have to be patient
'Cause it's a long way to go, a hard row to hoe
Yes, it's a long way to go but in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling Sean
Written by: JOHN LENNON
As soon as I started singing those lyrics to Shawn in the hospital, he immediately stopped crying, look at me, then slowly closed his eyes and went to sleep. Since that day, I have sang that song to him every since until one day he decided that he wanted to sing it to me. Since I had my iPhone with me, I recorded it for the first time and he has been singing it to me every since:
After I finished telling him the story, Shawn looked at me and said, "I like that story Daddy. Can you sing me Beautiful Boy"? I looked at him and said, "With pleasure my "Beautiful Boy"!"
We are so happy to see his 4th birthday come around considering we were not sure he would live past 4 months. He is truly our miracle and I will always feel that I owe my life in some way to help others see as many of their children's birthdays as I can. Whether it be through the Shawn's Anomaly mission or my own personal mission to inspire others to exercise and make healthier choices, I feel honored to be live the life I do. Thank you all for your continued support in all the endeavors that I seem to take on. I hope I you don't feel pestered along the way.
Here are the results of today's Kona Inspired Views:
Views
Daily Views
1
Jacob Fuka_Kona Inspired
29878
20275
2
Kona for the Kids
20271
7113
3
Clarissa Alba
17964
11791
4
For Mari
13975
9485
5
Persistence, P.E. & Pushing Your Limits
7482
4277
6
Failure Is Not An Option!
5954
3021
7
A Grizzly Ironman
4389
2794
8
Cancer-Baby-Bone Marrow
3238
1670
9
The Quadfather (Nick Tieney)
3142
1416
10
Starting to Tri-Special Olympics
2163
822
11
Shawn's Ironman
2037
1079
12
Mariya Hristo~Kona Inspired
1239
573
13
Lisa Hallett wears blue at Kona
1227
481
14
The iron will to Win
991
529
15
Submarine Tri-Training
845
408
Kona may not be in the plans this year, but I am not giving up. I have seen plenty of miracles in my life and a comeback or a "Wild Card" select would just be another one. Thank you again for your support and keep up the great work of voting daily and sharing www.sendshawnsironmantokona.com till midnight tomorrow night. Remember, if we don't make it, we still won. We helped educate others about birth defects, prevention, and our continued effort to provide HOPE!
DALLAS (CBSDFW.COM) - At first glance, Shawn Murphy looks like any other 4 year old. But the little boy has overcome some very big odds. Shawn was born with two urethras — a rare congenital anomaly. The toddler underwent three life threatening surgeries to pull through to the healthy side of life. On top of the stress of seeing their son in pain, Murphy’s family couldn’t find much support or information about his condition. That reality was a catalyst for the Murphy family, who used their experience to start “Shawn’s Anomaly,” an organization that helps families facing congenital anomalies.
“Someone cares and that goes a long way when trying to make it to another day,” according to Shawn’s father, Matthew Murphy. His son’s ordeal has inspired him to lose weight, get in shape and begin competing in Ironman challenges. Matthew Murphy is pounding the pavement, crisscrossing the state with what he calls his flag of hope.
He’s meeting other families with children fighting for their lives on his journey.
One of those children is 7-month-old Amaya Guerrero, born with a severe congenital heart defect. She has never left the hospital and is in dire need of a heart transplant.
“I told myself I would give her every chance that I could possibly give her I’d fight for her until there was nothing left,” said the infant’s mother, Serina Guerrero.
Matthew Murphy visited Children’s Hospital of Dallas on Sunday to offer support and encouragement to families just like the Guerreros’.
He collected signatures on his ‘flag of hope’ that he plans to carry with him in an upcoming Ironman competition.
“I want to carry as many families as I can across the finish line with me.”
Murphy knows first hand what it feels like to have a child face death but he also knows what it feels like to beat those odds. He said he wants other families to one day have that feeling too.
Click on sendshawnsironmantokona.com to vote for Matthew Murphy to become a competitor in the 35th IRONMAN World Championship.
Several families have expressed interest in placing their loved one's name on the Shawn's Anomaly H.O.P.E. Flag. Although I can't travel all across the world to let them do it (I wish I could) I have decided to go on a "Texas Tour" this weekend with the H.O.P.E. Flag to allow families place their loved one's name on it personally in four of the major cities, San Antonio, Austin, Fort Worth, and Dallas.
If you would like more information about the H.O.P.E. Flag, please go to watch the following video:
Here is the schedule:
SATURDAY
12:00 PM-Children's Hospital of San Antonio 3:00 PM- Dell Children’s Medical Center of Central Texas, Austin TX
SUNDAY
12:00 PM- Cook Children's Health Care System, Fort Worth, Texas 3:00 PM -University of Texas Southwestern Medical Center/Children's Hospital of Dallas, Dallas, TX
If you would like to meet at one of these locations please call or text me at 713-791-4403. Please help me by spreading the word to the parents in these cities and contact the news channels in that area about what we are doing to help spread the word. Thank you in advance for your help.
Also please remember that you can vote daily at www.sendshawnsironmantokona.com to make sure that the flag will fly across the Ironman World Championship finish line.
As some of you may have already noticed on Facebook if you try to plug www.shawnsanomaly.org, www.shawnsanomaly.com, or www.congenitalanomaly.org into any comment or status update you get a horrible pop up box from the social media sight that says:I hit the "let us know" and tried
to explain to Facebook that this is a non-profit similar to other non-profits
such as LIVESTRONG, American Red Cross, March of Dimes...etc. and we follow all Facebook guidelines. I have submitted several request to retract
the block. After submission, another pop up states “Thanks for taking the time
to submit a report. While we don't reply to every report, we may contact you
for more details as we investigate. You should receive an email response
shortly.” Guess what...I have never received an email!
After doing a little research about the issue I have found out that some people have been dealing with this for over 6 months without getting a resolve. Of course Facebook does not offer any way to contact them via phone, email, or even snail mail. So this pretty much leave us not being able to get it fixed.
This is just another hurdle and confirmation that we are doing something right. I say that because as a man of Christian faith, my belief is if I do something that blesses and honors God then I will be attacked by the enemy harder. Honoring these deserving families that have children with birth defects is also honoring and blessing God in my eyes. I will not be swayed. I will just keep pressing on. Thank you all so much for your support. I have read your comments today and I can't tell you how much they inspired me to press on. Thank you for lifting me up in a time that I could have easily gotten down. You are awesome. Here are the daily views today:
Views
Daily Views
1
Kona for the Kids
15390
2232
2
Jacob Fuka_Kona Inspired
14853
5250
3
Clarissa Alba
7772
1599
4
For Mari
5789
1299
5
Persistence, P.E. & Pushing Your Limits
4517
1312
6
Failure Is Not An Option!
4120
1187
7
A Grizzly Ironman
2440
845
8
The Quadfather (Nick Tieney)
2156
430
9
Cancer-Baby-Bone Marrow
2076
508
10
Starting to Tri-Special Olympics
1558
217
11
Shawn's Ironman
1318
360
12
Lisa Hallett wears blue at Kona
864
118
13
Mariya Hristo~Kona Inspired
840
174
14
The iron will to Win
622
160
15
Submarine Tri-Training
535
98
I don't want you to ever get discouraged by these results. Some may see that we are really behind, but we need to look at it as we have 1,318 times that a person was educated on birth defects. We also know that 1,318 times we did it the RIGHT way and did not vote...refresh...vote. No matter how you look at it, that is against the rules and cheating.
The families that are represented on the H.O.P.E. deserve to be represented by a person that is willing to do it the right way without trying to cut corners. I am trying my best to keep that integrity in this Kona Inspired campaign and I appreciate all of you for obviously doing the same. Keep up the great work.
Click To Enlarge
Finally if you look closely, we are starting to put some of the names on the flag. I am also touring the the great state of Texas going to San Antonio, Austin, Fort Worth, and Dallas and allowing families to place their child's name on the flag personally. If you know of anyone in these towns that have a child or has personally been affected by congenital anomalies, please have them contact me at 713-791-4403 to schedule a time to get together to sign the flag.
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