5 Years Old and Counting

Jadon “The BUG” Burks
June 25th, 2009

Where do you see yourself in five years?

A common interview question many companies have used for a long time.

If we would have been asked this question five years ago on this day, the day Jadon was born, our answer would have been wrong.  Surely we would have forecasted higher salaries, a new house, nice cars, and oh yeah, Jadon being all boy running around like crazy and starting Kindergarten in the fall.

Had we been asked this question just two short months later, our answer would have been drastically different and thankfully, that too would have been wrong.  We would have forecasted that on this day we would be visiting Jadon’s gravesite.  Probably releasing balloons, honoring our son, crying a lot and wondering why our precious little boy had to leave us so soon.  At two months we were also prepared for the worst financially as well…but we didn’t care about that.

We are not even sure exactly where our reality falls within these two forecasts…and truthfully it doesn’t even matter.

Shortly after we were told that Jadon would be lucky to live past his first birthday we met our “face of hope.”  Hope can come from anywhere or anyone.  For us it was the face of a 5 year old boy who also has SMA Type 1.  Charlie Sykora and his family were the first members of our new SMA family that we met.  Every child is different, Charlie’s mom Kim told us several times and we soon came to realize this statement and understand how much stronger Charlie was than Jadon.  However, we were told only 50% of kids live to be one and only 10% live to be two.  Here was Charlie – happy, healthy, and an optimistic future of a five year old.  Suddenly we had hope.  We began to look beyond the statistics and what the doctors initially told us.  We armed ourselves for the battle ahead – to give Jadon the best quality of life we could.  To help him live and help him thrive. As the months went on, we were introduced to even more amazing kiddos like Charlie who were drastically beating the odds.  Kids like Veronica, Lizzy, Madison, Danielle, Aubrey, Kaige, Cashel, Allie, and MJ (who is now 26 years old).

The road has been anything but easy, but it has been rewarding.  So many things we gave up on have actually come to pass.  Jadon has:

Hung out with Charlie, and Emma (Charlie’s sister) Jadon’s 2nd Birthday (Huge Milestone)

Become a BIG BROTHER

Gone to school

Been on a baseball team

Gone to Disney

We have been inspired by so many and now we suddenly find ourselves looking at our five year old son truly understanding that Hope Endures.  We wonder whose inspiration Jadon is.  If a family has a weak type 1 and they need an example to follow, our little hero has conquered some huge obstacles.  Don’t get us wrong, there have been many very dark scary days where it seemed impossible we would see tomorrow.  But Hope Endured and tomorrow came.  Then another tomorrow, and then another, then another, until we now find ourselves celebrating his 1,826^th day of changing our lives for the good.

SMA BUDDIES

To put this into perspective, Jadon and his friends who have surpassed the 5 year mark have done something most of us don’t have a chance of doing.  At 5 years old they have lived 2.5 times longer than their life expectancy.  If the average life expectancy in America is 80 years, we would all have to live to 200 years old to do what these amazing kids are doing.

Happy 5^th Birthday Jadon!!!  We love you so incredibly much and are immensely proud of you.  You are our light, our inspiration and our hope.