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.
After voting started yesterday, I promised myself that I would not get my hopes up this year after not getting the invitation after the finals. I nearly fell into the trap of getting upset after I calculated the views for the past 24 hours:
Views
1
Kona for the Kids
6596
2
Jacob Fuka_Kona Inspired
4700
3
Clarissa Alba
4064
4
For Mari
3025
5
Persistence, P.E. & Pushing Your Limits
1803
6
Failure Is Not An Option!
1593
7
A Grizzly Ironman
1052
8
Starting to Tri-Special Olympics
1037
9
Cancer-Baby-Bone Marrow
937
10
The Quadfather (Nick Tieney)
908
11
Shawn's Ironman
554
12
Lisa Hallett wears blue at Kona
500
13
Mariya Hristo~Kona Inspired
433
14
Submarine Tri-Training
297
15
The iron will to Win
287
No matter what the view count says, I will continue to look at it this way. Every time I see a new person going to the website and voting or viewing the video, I know that we are winning. We are able to educate others on birth defects and how they are the leading cause of infant deaths worldwide. I am also very honored to be grouped with a bunch of great stories and athletes.
Thank you all for your support by VOTING & SHARING www.sendshawnsironmantokona.com. You are not only my hero, but a hero to every child and the families that are represented on the Shawn's Anomaly H.O.P.E. Flag.
I love this Kona Inspired program because of what is does for awareness. In fact, I have chosen to only go to Kona through this program instead of trying to qualify, win the lottery, or purchase an ebay slot. All of those ways make it about me and my dream to cross the Ironman World Championship finish line. Kona Inspired makes it about all of you and all of the families that deserve the help and support that we are able to give because of the awareness. It is about educating the public that there is good evidence that taking folic acid before and during pregnancy can reduce the risk of certain birth defects (spina bifida, anencephaly, and some heart defects) and other preventative measures.
It is about getting the opportunity to meet amazing moms, dads and families through this experience and being able to provide them a small ounce of hope and inspiration to pull through.
Finally it is about the opportunity that I WILL carry the Shawn's Anomaly H.O.P.E. Flag regardless if it is this year or whenever.
No matter what the outcome, iDO!, and I will continue until everyone knows about birth defects. I hope this journey means as much to you as it does to me. Let's keep up the great work!
It was a very long and hard three months of begging for votes. Thanks to your support and spreading the word, I was informed by Ironman that our video was one of the finalist of the "Kona Inspired" contest. I can't tell you how overwhelmed I was to receive such great news. Now all we have to do is be the top two in my group of 15 to receive the most votes and we will cross the finish line with me at the toughest one day endurance in the world: The Ironman World Championship in Kona, HI.
I also have some other great news. We finally had the opportunity to create the Shawn's Anomaly H.O.P.E. Flag through our partnership with the Museum of Cultural Arts Houston (M.O.C.A.H.). The experience was simply amazing. It was a chance for volunteers, Team Shawn's Anomaly athletes, and families with children affected by birth defects to come together for one mission. Check out the short documentary about the H.O.P.E. Flag Workshop:
I have decided that I will not touch the flag until I grab it to carry it across the finish line in Kona. It just another way to make this journey "one of a kind" and can never be repeated. If you or someone you has been affected by a birth defect, please CLICK HERE to sign the flag online.
The voting for finals starts today and will end on June 27th. I need your support for the next 11 days bigger than ever before. I ask that you please share DAILY the webpage www.sendshawnsironmantokona.com on your Facebook personal pages, twitter accounts and any other social media website you are use. Let your supporters know that you are personally connected to this journey and what it would mean to the birth defect awareness on a world stage if the journey was highlighted at the Ironman World Championship.
Rachel, Shawn and I thank you so much for your support.
The voting for our group is starting soon, and I am getting anxious. I was honored today to speak with Michael Garfield on his show High-Tech Texan on Houston's 9-5-0. I hope some of you were listening this moring, but in not, here is the interview:
Remember voting starts on Monday. If any of you would like a daily reminder, send me an email and I will put you on the list!
This Saturday, I was able to witness something simply amazing. I got to see volunteer, athlete, and family come together all under one room during the H.O.P.E. Flag Workshop organized by the co-founder of the Museum of Cultural Arts of Houston (M.O.C.A.H.), Rhonda Adams.
Shawn, Rachel, and I arrived to the Museum just in time to see two canvas framed with the outline of the flag design. Team Shawn's Anomaly member Shauna came with us as well and was excited to see that she was going to be able to be a part of the painting as well.
Shortly after the workshop started, Mandy Feltner arrived her three beautiful children including little Patrick who was born with the same thing that Avery of with Avery's Angels was born with: Gastroschisis.
Gastroschisis is a birth defect in which an infant's intestines stick out of the body through a defect on one side of the umbilical cord.
If gastroschisis is found before birth, the mother will need special monitoring to make sure her unborn baby remains healthy. Plans should be made for careful delivery and immediate management of the problem after birth.
Treatment for gastroschisis is surgery to repair the defect. A surgeon will put the bowel back into the abdomen and close the defect, if possible. If the abdominal cavity is too small, a mesh sack is stitched around the borders of the defect and the edges of the defect are pulled up. Over time, the herniated intestine falls back into the abdominal cavity, and the defect can be closed.
Other treatments for the baby include nutrients by IV and antibiotics to prevent infection. The baby's temperature must be carefully controlled, because the exposed intestine allows a lot of body heat to escape.
When I asked Mandy if she would like to paint the "O" of the flag that was the awareness color of Gastroschesis, you see the joy in her face. To see more of Patrick's story: CLICK HERE
The entire day was very special, but the highlight was when Mandy placed Patricks name on the flag personally. This meant a lot to all of us that were in the room. It has somewhat left me speechless. In fact, I am surprised that I was able to write the words that I just wrote.
There was one other thing that only one person that day picked up on: I never touched the flag. I did that on purpose. Something came over me when I started to see the colors of the flag come together that told me that the first time that I would be able to touch the flag was when it was handed to me in Kona at the Ironman World Championship Finish Line. I can't wait to do this or these families, and I now depend on all of you to make this happen.
I want to give a special thanks to Rhonda for organizing this amazing event and Malcolm for coming out and capture everything on video. Once we get done with the final cut we will release on the Facebook and Twitter feeds. Stay tuned.
Well, all it is official. After a long time of patiently waiting, I finally received the following email from Ironman:
Congratulations Matthew!
You have made it to the finals round of the 2013 Kona Inspired Contest!
You have been placed in Round 2. Your video will be available for viewing and voting beginning June 17th through June 27th. The top two (2) Video Entries with the highest score based on Public Evaluation (only with respect to the applicable Final Evaluation Period) in your group will be deemed the winners of Round 2 and will be notified via email. If any tie score occurs in the Public Evaluation the tie will be broken by the Panel judging which of the tied Video Entries best represents, in the opinion of the Panel, the Ironman mantra "Anything is Possible."
Additionally, on July 10th, the IRONMAN panel of judges will announce one wild card entry chosen from the 39 finalist who did not win their round.
For further questions please refer to the Official Rules or email konainspired@ironman.com
Again congratulations on making to the finals and good luck!
WE DID IT! Thank you all for getting me through the first step. I am so happy to know that we are in the second round as well. It is the round I really wanted to be placed in because it gives us a chance to plan our strategy.
I can barely contain myself regarding the excitement! Let's go Team Shawn's Anomaly!
Please remember that voting for Round 2 starts on June 17th and you can vote once per day for 10 days! As we get closer, we will create other ways to remind you and let you get involved!
Well the preliminary voting is now done, and now it is in the panel of judges hands. Regardless of if we make it into the semi-finals, I want to let you know that what you guys did this year with voting was really inspiring to me. Thank you all for your support. Many new people are now aware of Shawn's Anomaly's mission to provide education, hope, and help.
Here is now what is happening based on the rules:
(World Triathlon Corporation) will determine the forty-five
(45) eligible Video Entries with the highest score based on the Judgment
Criteria (the “Top 45”) as determined by the Panel as described above. The Top
45 will be split by the Panel into three (3) groups of 15 and will be made
available via the Kona Inspired Application for final Public Evaluation and
sharing during the applicable time period (the “Final Evaluation Period”) as follows:4
First group of 15 Video Entry finalists or “Finalist Round
1”: Between June 5, 2013 at 12:00 A.M. ET and June 15, 2013 at 11:59 P.M. ET.
Second group of 15 Video Entry finalists or “Finalist Round
2”: Between June 17, 2013 at 12:00 A.M. ET and June 27, 2013 at 11:59 P.M. ET.
Third group of 15 Video Entry finalists or “Finalist Round
3”: Between June 29, 2013 at 12 P.M. ET and July 8, 2013 at 11:59 P.M. ET.
If I do make it to the semifinals, I really hope I am in the second group for logistical reasons. Please keep this process in your prayers and think positive.
Here is the final results of the Kona Inspired Views: