Thank You!!!

Yesterday,  I received the most amazing, thoughtful gift.  Becky sent me a photo of this gift while I was at work and I thought it was a cake.  I thought, awesome.  I'll stop by the grocery store on the way home and buy some ice cream.  I forgot the ice cream, but didn't forget about the gift.

Moby Dick

This is Moby Dick.  This is literally Moby Dick and the Pequod made from the pages of Moby Dick.   This is the Great White Whale and the waves of the high seas as he is swimming next to the Pequod.  This gift represents the gift we were given by TGen as I described in my post Moby Dick has been spotted...the chase is on.  The gift of a genetic diagnosis for my family.  This gift from TGen is priceless!  This gift from Karl and Chrysta Richards is priceless!  This gift will go along side our symbolic Pequod Seth made when he was in pre-school.  This was made and gifted by Jodi Harvey-Brown and shipped from Pennsylvania.  Beautiful, amazing, thoughtfull...words cannot describe what this means to me.

Our symbolic Pequod

People have asked me countless times:  "I don't know how you guys do it?"  Well, some times I don't either.  But this much I do know.  There is no way in hell we could do this alone.   Yesterday is only one example of several people who have gone out of their way to share our burden.  It's people like Chrysta who are so thoughtful.  It's people like Sharron who sent my blog to everyone in her contact list and made up flyers of Team Belnap so she can hand them to people.  It's people like my co-worker Lacey who asked me if I would help her write a research paper for her biology class on mitochondria (I am so excited to help her and educate her biology teacher).   It's people like Jodi who donated this gift to us after she read our story.

It's people like my co-workers who are all wearing the Jeans for Genes, Wear that you care ribbons today at work.  It's people like Heidi who have helped us get Team Belnap up and running.  It's people who have donated or shared Team Belnap with others.  It's people who have shared our story.  It's people like my friend Jason who sent me a thoughtful email of encouragement.  It's people who have supported us publicly and privately.

Today is Rare Disease Day and Becky are privileged to go to TGen again for some special, long-awaited events.  Rare Disease Day  will be celebrated all across the country.  Today, in honor of this day, TGen will release a video about our family highlighting the progress they have made with rare diseases and our family.  Today,  we will meet with other parents at TGen.  Becky and I have been asked to be on TGen's Parent's Advisory Council.   Today is a special day.

Today, my heart is full of love and gratitude.  Thank you Chrysta and Karl!  Thank you to everyone!

Team Belnap: We swim, bike, and run because they can't

In the fall of 2010, when Seth's condition started to significantly deteriorate, I was training for the Tour of the White Mountains. This is a mountain bike race that I love and have done several times. I raced the 35 mile course.  I decided I was going to dedicate this race to my son Seth.  I only told my wife my plans. I had the motto: I race, because he can't. There was something different about this race.  There was something special about this race.  This was a race not about me, it was about Seth.  I put on my headphones and road harder than I ever have before.

Exhaustion, muscle cramping, thirst, mental fatigue all were omnipresent and very frequent.  Those of you who have done endurance events have heard about "hitting a wall".  I hit this wall, but rebounded like a racquetball.  As these feelings came, I would think of my sweet little boy Seth and I would ride harder and continue on.  I took no breaks and the only time I got off my bike was when I crashed into a pile of lava rock.  Ouch!  I finished in the top 10 with a time of 03:14:23.86

Me in Tour of White Mountains 2010

The following year, Sydney was officially diagnosed with Mitochondrial Disease and I decided to change my motto from I race because HE can't to I race because THEY can't.  I told Becky and Spencer my motto and they joined me in our silent cause to race for Sydney and Seth.  The motto then became: WE race because THEY can't.   Becky ran the Moab Half Marathon, Phoenix Half Marathon, Ogden Marathon, and the St. George Marathon with this motto.  In 2011, I raced in Ironhorse, Bike the Bluff, and The Tour of the White Mountains.

Becky and her dad after Deseret News 10K

Spencer was involved in soccer and track and was an amazing athlete.  I remember telling Spencer before soccer games and track meets to play this game for your little brother.  Run this race for your sister.  Spencer was an amazing athlete.  He had the endurance of a Tarahumaran and could accelerate like a cheetah.  In 2011, Spencer finished in 3rd place with a podium finish in the 15 mile Tour of the White Mountains race with a time of 01:30:23.  He won many of his track meets in the 800 and 1600 meters.

Spencer 2011 Tour of White Mountains

Me 2011 Tour of White Mountains

Things were going well for us.  Sydney and Seth were stable and Spencer, Becky, and I were all running/racing/playing for our silent cause:  Because they can't.  Then, we were broadsided by Spencer's diagnosis.  Our lives have been chaos and unsettling.  Becky and I have not raced since Spencer's diagnosis.  I've had a hard time even getting on the bike or running on the trails.

One of the worst days on this journey is when I had to tell Spencer he could not race anymore.  I was on my way to his first track meet of the season in Winslow, AZ.  I had just gotten off the phone with Maureen at Dr. Shoffner's office.  They had discussed Spencer's case and recommended he not participate in any competitive sports until he was seen by Dr. Shoffner.  Spencer was suited up for his track meet.  I was about 30 minutes away from the track meet and his event would start in 45 minutes.

I had to tell Spencer that he could not race.  I knew the news would devastate him.  I knew how much he loved to run and compete.  Now, I had to tell him he could not race for his little brother or his big sister anymore.  Tears filled my eyes knowing what Spencer was about to go through.  As I scrambled  to find Spencer at the track meet, I pulled him to the end of the bleachers and with tears in my eyes told him that Dr. Shoffner was highly suspicious of him also having a form of Mitochondrial Disease and it was best if he did not run or compete in any sporting events at this time.  I hope I never have to ever do something like that again.  It was so painful.  Spencer was running for his brother and sister because they can't, and now he was to be included with those who can't.

Seth posing with some of Spencer's awards he received in soccer, track, and mountain biking.  Spencer would race/play in honor of Seth.  

So, for those of you who have joined Team Belnap, you are running because Spencer can't.  You are fulfilling part of his dream.  Run like hell.  Run for him.  I can guarantee you that Spencer would love to run this race because they can't.  Spencer would love to strap on his shin guards and play because they can't.  Spencer would love to clip into his mountain bike pedals and ride because they can't, but Spencer can't!

There is something special about racing for someone else.  There is something special about racing for a cause that makes the race more meaningful.  It's time to change our silent motto to a loud scream that can be heard across the country.  It's time for me to lace up my trail running shoes again.  It's time for me to clip into my mountain or road bike and race because they can't.  Thank you for all who have supported Team Belnap:  We swim, bike, and run because they can't.