Wednesday, June 12, 2013

Seth's 7th Birthday: Another Milestone

Seth's 7th Birthday Party (one happy boy)

Seth turned 7.  It is so amazing to see the progress he has made.  2 years ago, he had no idea what a birthday was.  He had no idea why he was opening presents and blowing out candles on a cake decorated with cars and animals.  We had no idea if this would ever change.  We had no idea if he would live to see his next birthday.

For the past few years, I have made an effort to write a post specifically related to his birthday.  This year, we will be in Atlanta, Georgia visiting Dr. Shoffner, our mitochondrial disease specialist, and his birthday will be when we are on the road, so we decided to celebrate his birthday before we left.

Atlanta Hartsfield International Airport

As I reminisce about his life and the highlights and low lights, I thought I would express some of these.  The progress he has made over the past year has been unbelievable.  Seth completed kindergarten for the second time and has the most amazing team of teachers and therapists at his school.  This year, he went from not knowing his colors, letters, and numbers to knowing all the letters, colors, and can count from 1 to 10.  He can now write his full name: Seth Parley Belnap.  He still has not learned to read, but he can say some of the sounds of the letters.  I can't thank his teachers, bus drivers, therapists enough.  They all have seemed to take a special interest in Seth, (it's hard not to do this).

Sky Harbor Airport

This is our 5th or 6th trip back to Atlanta to see Dr. Shoffner.  I will never forget that first trip and our first appointment when we heard the devastating news that Seth had Leigh's Syndrome, a fatal form of mitochondrial disease.  Dr. Shoffner told me and Becky something no parent wants to hear:  Seth could live 6 months or 6 years.  Then even more devastating news:  there was no effective treatment and no cure.  I will never forget how I felt that day.  I was overcome with sorrow for what would come.  I had no idea what would come.  If I did, I'd probably have been committed to a psychiatric hospital.  I could go on and on and lament about this and the injustices of life.  I have learned from my good wife who says: "I'm not going to be in mourning when Seth is sitting here right in front of me."  She lives this!  She is amazing!  That was 2.5 years ago.  Seth has made incredible progress.  Are the doctors wrong about his prognosis?  I don't know.  I hope so, but the truth is, Becky is right.  We need to live in the moment.  We need to enjoy each day, hour, minute we have with our children and the ones we love because we will never know when they will go home to the God who gave them life.

So a little more about this amazing child who has a gift to love those around him.  He has a gift to make you feel that love.  Seth is always happy.  He wakes up happy and goes to bed happy.  Seth seems to takes every opportunity to get to know people around him.  Sometimes, this can be very embarrassing and other times, it is very cute.  For example, on this trip as we were waiting in line at the airport in Phoenix to check in our luggage, there was a gentleman near us and Seth said:  "Why you have so dark skin?"  Becky and I were hoping this man did not hear Seth.  He was asking an honest question in an effort to get to know this man.  Seth has no guile, only love.  Seth loves to go to Walmart.  He did not get this genetic trait from me.  I hate going there.  I think he enjoys it because he can talk to so many people.

On the flight to Atlanta, as soon as we took off, Seth told me he had to go to the bathroom.  This is just my luck.  Usually, we know Seth has to pee when he starts to perform what we have called, "the pee dance".   This is a dance Seth does to essentially temporarily prevent him from peeing his pants.  He usually does this while he is standing.  He was performing a modified version of this dance while he is sitting with his seatbelt on.  This dance seems to be an involuntary dance and must be controlled by some aspect of the central nervous system.  This dance starts with lateral movements of his hips, followed my lifting his feet up and down as if he were marching in place.  Then, the hand goes toward the urethra to manually block the forceful evacuation of his bladder.  We have learned, when this dance starts, we usually have less than a minute to get him to a toilet, a tree, or a...well, I'd better not list all the places we have had to do emergency evacuations of his bladder.  

Well, he didn't pee his pants, and we didn't need to use the vomit bags (which Seth made sure all of us and the passengers near us had before we took off) as a urine container.  The sitting position must have helped pinch the urethra preventing him from peeing his pants.  I don't know what Seth drank at Unce Kevin's and Aunt Catherine's house that morning, but he had to pee 4 times on that flight.  He must have snuck several swigs from my diet Mountain Dew that morning.  On one of those bathroom trips, Seth also had to go number 2.  We were sitting in the row ahead of Becky, Sydney and Sierra.  After this event, Seth stood up in his seat and turned to his mommy and announced: "Mom, I'm a super pooper duper".

When we were getting into the elevator of our hotel, Seth said to another man riding in the elevator and a complete stranger: "I think that I forgot your name.  What's your name?"  The man, completely caught off gaurd, said: "Well, I think I forgot your name too?"  "What's your name again?"  Seth replied:  "My name is Seff."  All of us are used to him interviewing strangers, especially men with facial hair and cowboy hats.

We will be done with doctor's appointments, testing, and labs today.  From our appointments this trip, a lot of new information has been revealed about the genetic basis of his disease.  I will post about this in the future.  After our appointments are over, we are off to Washington D.C. and New York to play for a few days.  Seth, here's to another year.  What a great year it has been.  I love you.  You have taught me how to live and to love.  You have taught me to never give up the fight.

Seth riding his new present

Seth with his new cowboy hat


  1. Has he grown a lot in the last six months? He looks a lot bigger than when we saw you guys at Christmas time. Keep us updated on when you think you'll arrive. Karl took tomorrow off, but if you won't get here till tomorrow afternoon, he'll go in to work anyway so that he doesn't burn a leave day unnecessarily. Can't wait for you to get here!

  2. Happy Birthday buddy! May you continue to grow in strength, wisdom and courage! You are already amazing at all three!! ♥

  3. Thanks for such a sweet post...and the never ending reminder I need to live in the moment!! Have a super fun vacation! We would love to have your family over the next time you are in Utah. Big hugs to your sweet wife...she is amazing!!