BUG RUN 2015 pics

The 2015 BUG RUN was held on April 11th.  We continue to be amazed at the turnout as well as with the overall atmosphere of the event.  The BUG RUN has become a gathering of the community and the support is nothing short of overwhelming.  From all of our sponsors to all of those who participate, the love for Jadon and the fight against SMA is evident.  Acts of kindness abound and one small example is the fact that all of Jadon’s Kindergarten class registered for the run.  An anonymous donor paid for those who would not otherwise been able to attend.  It is because of gestures like this that we are constantly talking about how blessed we are with those who God has chosen to surround us with.

We are already looking forward to next years run and looking for ways to make it even bigger and better.
SEE YOU NEXT YEAR!!

 

Jadon- “The BUG”

SMA Mommas and their Warriors – Kaden & The BUG

The National Anthem

I Run In Honor Cards
SMA Warrior & Angels

Patrick Fazio from Action 41 News & Rocket from 93.3 The Mix

 

 

 

IT WAS A VERY VERY GOOD DAY

 

Right Where We Need To Be

Kristin and I moved from the Rocky Mountains of Colorado eight years ago today.  I couldn’t have put a good reason for the move onto paper and there certainly is no camera in the world that could justify a move from Breckenridge Colorado to KANsas.  However, I grew up in Kansas (Topeka) and always thought I would return someday, and with Kristin’s sudden onslaught of “Snow Allergies” (Apparently not everyone likes 7 months of snow) the timing seemed right.

We took a week and toured the Kansas City area, on both sides of the state line and looked at over 30 houses.  Before we pulled in front of our current address in Olathe we knew our realtor was not only representing us but he was also selling this particular house (the coveted “double dip”).  What we didn’t know until the van went into park was that the price was going up $5,000 from what he had quoted earlier.  His actions put my temperature on the rise and I was also about to learn that my wife has NEVER played poker in her life.  We walked in the front door and her mind began hanging pictures and placing furniture.  The house was great but on the higher end of our budget and back in the van I suggested we at least offer $5k less (which took it down to the price from earlier in the day) Our realtor simply shook his head no.  Disgusted, I insisted on looking at more houses and wanted to find something different.  I was determined to find something different.

We didn’t find something different.

Today, 8 years later, I FINALLY release the anger I harbored for our realtor.  I now realize that THIS house is where we were meant to be.

Assuming Jadon and SMA were our destiny, I now see that this was “Our House” before we knew it. I don’t typically like to play the “what if” game, but today I indulge.

Our house in Colorado sat at 10,000 feet above sea level and Jadon most likely would not have lived to his diagnosis at 2 months of age.  Lack of oxygen does not mix well with SMA.  We most likely would not even know about SMA, but instead we would have a very short story of unexplained tragedy.

Many of the houses we toured were split level, with bedrooms on the top floor, kitchen half a story down, and the living area on the bottom floor.  Maneuvering Jadon up and down those stairs would have been a challenge.  In this house we can wheel him to the bedrooms, living room, and kitchen.

Schools didn’t weigh into our decision at the time but we knew there was an elementary school across the street.  What we didn’t know is how much that school would impact our lives.  We found an amazing church that continues to stay in contact despite our inability to attend regularly.  Infant toddler services and Jadon’s case worker have been incredibly helpful and we now call them our friends.  Of course being close to so many of my longtime friends and family has been a blessing.

School was something we had given up on for Jadon but this year he completed a full year of pre-school with an amazing teacher and incredible faculty.  They continually said “yes” when it would have been easier, and understandable, for them to say “no”.  When Jadon couldn’t attend class because of cold and flu season he became the first student in the district to Skype into the classroom.  The PTO contacted us and said they would like to do something for the Foundation and the fight against SMA: The 1^st annual Jadon’s Hope BUG RUN was born.

Jadon has been a part of a little league baseball team.  While he is physically unable to participate, to be included is so incredible.  On Tuesday (6-25-13), Jadon’s 4^th birthday, following the game Jadon “ran” the bases and the team sang Happy Birthday to him at home plate.  It was a night never to be forgotten.

This past weekend our church refurbished our neglected landscaping for us with a concentrated work day of 15 people.

Last night our new friends (from that school I mentioned) threw a birthday bash that any 4 year old boy would love.  It was a sports theme with Star Wars characters.  They went all out and would not allow us to do anything.  They said it was a day for us to simply enjoy.  ENJOY we did.  It was both emotional and amazing.

So we may have paid $5,000 more for our home because of greed but I am soooo glad my foolish pride didn’t cause us to live somewhere else.

I certainly believe there are good people around the world but I believe that God has surrounded us with the best people for us.  We continue to be humbled and recognize the blessings surrounding us.

FIRST DAY OF SCHOOL!!!!

Jadon Skyping with his class

BUG RUN

Happy Birthday after rounding the bases

Yard Day

Birthday Party

Happy Birthday BUG

 

 

 

 

Celebration – 4 Year Old Style

While Jadon’s official Birthday Party is not until Sunday the 30th it was important for us to celebrate the day he was born, get out of the house and “Dance in the Rain.”

From the looks of it, we would literally be dancing in the rain.  The morning of June 25, 2013 started off extremely rainy and we wondered how this celebration would go.  The plan was to visit Union Station and Crown Center in the morning, come home to let him rest and then head out for his baseball game later that night… and of course make it a special day for him.  To quote an 80’s icon, “I love it when a plan comes together”.

Let’s get this party STARTED!!!!

At Union station and Crown Center we found trains, pirates, custard, and a waterfall.

“AAaaaarrrrgh”

“Indoor waterfall?”

“That is one tall ceiling.”

“My Daddy helped make this giant cone.”

“While I was sleeping, ALL these presents just SHOWED up!”

Jadon took a REALLY long nap….so long we wondered if we would make it to the game on time.  As soon as he woke up, we hustled through treatments, got his uniform on and raced out the door.  We never cease to be amazed by the wonderful outpouring of generosity and inclusion the team and team parents have shown Jadon – and last night was no exception!  We love kids helping kids and when the boys brought their cards over to give to Jadon we nearly lost it.  When they lined up and ran by Jadon for the postgame tradition of saying “Good Game” there may have been a little water in the corner of the eye.  When Jadon “ran” the bases our gratitude started to run down our faces.  To hear his teammates and the crowd cheering him on – oh my!  To top that off, the opposing team came BACK into the duguout to cheer him on – be still our hearts.  As Jadon crossed home plate, the boys met him there with a “wave” and proceeded to sing happy birthday to him, well as you can imagine, it was all over at that point.
(BE SURE TO CHECK OUT THE VIDEO AT THE BOTTOM)

BUT wait, there was more!  We opened his gift from the team and found Jadon’s own personalized baseball cards and a signed baseball.

AND THEN we came home to find a GIANT balloon bouquet on our front porch with the biggest 4 balloon we have ever seen.

WOW what a night – the perfect ending to an amazingly, awesome birthday celebration….4 year old style!

Video from the game.

Dear Jadon, You are FOUR Years Old Today

2009

2013

Jadon,

Today you are FOUR YEARS OLD.  At times it is truly hard to comprehend.  Some days we wonder where the 4 years have gone and other times we look into your eyes and you seem infinitely older than just 4 years.  We have truly taken one day at a time and ended up right here…4 years later.

Like it was yesterday, we remember the day you were born.  We remember the pride we felt, the dreams we had for you, and the love that consumed us in your presence.  Although our dreams for you have changed direction, our love and pride for you has grown more than we could have ever imagined.

Jadon, you have changed our lives for the better.   You are our light and inspiration.  You have taught us things we would have never learned any other way.  You have led us places we never would have traveled.  You have led us to people (amazingly good people) that we never would have met.  You have taught us perspective, all those things that seemed “important” before you were born are distant to what truly matters the most.  You have taught us the meaning of unconditional love and hope.  Through you we have learned that life is more than what our earthly eyes see.  You have changed us in ways we never would have changed.  We thank God for you and these changes each day.

Our love will never change.  We want you to know that our love for you is eternal and you should never worry.

Don’t worry Jadon that you can’t speak the words “I love you” as we so long to hear…we can see it in your eyes

Don’t worry Jadon that your smile has gone…we can still see that little twitch in the corner of your mouth and that sparkle in your eye.

Don’t worry Jadon that you can’t speak the words “GET my crazy sister off of me before she tears my eyes out and rips off my ear”…we can see it in your scrunched up eyebrows.

Bug, we have done A LOT of coughs, a ton of suctioning, a whole lot of thumping, quite a bit of stretching and much more worrying than any family should – we have also felt and experienced more love than some families feel.  Your gentle attitude and desire to see tomorrow has calmed us and inspired us.

While, The SMA Standard of Care booklet doesn’t ACTUALLY state that we MUST tell you we love you 97 times per day or that we MUST give you 214 kisses per day…. IT REALLY SHOULD.  And here’s the deal … that is not going to change.

Happy Birthday fella, we love you so incredibly much,

Mommy, Daddy, and Sissy

Dreaming of School

I have given up on some dreams in my life.  For instance, I used to dream of being “The Fonz” but it turns out I’m really not all that cool.  I dreamed of being a male super model / international man of mystery but it turns out I’m not good looking and I’m really not all that mysterious.

I have also seen many of my dreams come true.  In June of 2009 one of biggest dreams came true when I held my son for the first time.  On that day all my dreams shifted from dreams OF him to dreams FOR him.  I dreamed big.  I dreamed really big.

Only two months later those big dreams were shattered faster than a window fighting with a little league foul ball.  With an SMA diagnosis our dreams changed from years and decades to minutes and months.  We no longer dreamed of college, heck we couldn’t even dream of PRE-SCHOOL.  (Pre-school is something most take for granted, parents should not have to dream of pre-school.)  We dreamed only of the next day and maybe the next milestone like, Christmas, Easter, or Birthdays.

Last Fall we began discussing the possibility of Jadon going to School.  We hesitantly allowed our minds to wonder if it could really happen.  We allowed ourselves to dream.  Maybe, just maybe,  he could go to school and learn, have friends, and just be a kid.

This week that dream came true.

JADON WENT TO SCHOOL!!!!!!!!

We have now gone two days.  The first was less than stellar as it was all just too much to take in, but our second day was great.  Jadon played, laughed, sang, danced, painted, made a paper dog, listened to a book through some cool headphones and he…..was included.

The excitement of school takes a lot out of the little fella but I can see in The Bug’s eyes that he is loving it.

We can not wait to “Dance in the Rain” at school next week.   While “Dancing in the Rain” with SMA is hard we can “Never Give Up!”  Definitely not on these dreams that mean so much.

FIRST DAY OF SCHOOL!!!!

Now for the big news……

Jadon is going to be a BIG BROTHER

The Baby is unaffected by SMA.

Expected arrival into this world is mid December.

Not sure yet if the room will be blue or pink….

Big Decisions…

When Jadon was first diagnosed with SMA, having trach surgery was not part of our care plan for him.  Looking back, we know that initial reaction was based on fear.  Fear of the unknown.  Fear of having a tube sticking out of his throat.  Fear of not understanding what a trach meant. Just plain FEAR.

As you know, over the past several months Jadon has been having severe respiratory distress episodes causing his heart-rate and oxygen levels to plummet to the point where we are wondering if “this will be the last time.”  A feeling no parent should be faced with.  Not to mention, these episodes are very stressful on Jadon’s little body – something we don’t want to put him through. After much research, speaking with other amazing SMA families and a lot of prayer, we have decided to schedule a tracheostomy surgery for Jadon the last week of July in Madison.  This is a big decision – one we haven’t taken lightly and haven’t come to quickly.  This is what is best for Jadon at this time.  We firmly believe that each parent must make their decisions based on their child and their family.  And this is exactly what we have done.

So what does the rest of our summer look like?

Well, we leave for Minneapolis on Wednesday (June 20^th) for the Families of SMA Conference.  We are extremely excited to meet and connect with so many other SMA families.  They are anticipating over 1,100 attendees from 21 countries – WOW!

On Monday the 25^th our big boy turns three years old.  (How cool is that?)  We will return to Kansas City with a three year old on the 26^th.

Jadon’s surgery is scheduled for the week of July 30^th.  We will be inMadison for at least two weeks (who wants to watch some beagles? :)).

Jadon is scheduled to start pre-school on August 16^th.  Phew…. where did the summer go?

While I don’t consider this blog “bad news,” other than the fact that the disease is progressing, we are holding on to some really GOOD news.

You will have to check back tomorrow for the REALLY GOOD news.  I can barely stand it.

Jadon Got His New Stroller

After nearly 6 weeks of waiting Jadon received his new stroller yesterday.  It is an Easy S (stage 2) and it is really nice.   The best feature that we have used so far is the high/low base.  The seat removes from the stroller base and attaches to another base that we will only use inside the house.  This base literally lowers to the ground or raises to the height of the kitchen counter.

Jadon got to help Mommy get the food ready for book club last night.  It was so great to have him in a different environment than just the living room or his room.  The base is on wheels and therefore we can roll him into any room in the house and even out on the deck.

Now we just need to get a minivan and we will be mobile.  The stroller can actually be anchored in a van and act as the secure seating system.  The plan is that we will have all of the needed equipment on the bottom shelf of the stroller and simply roll him in.

Looking for vans is no fun at all.  I did find a heck of a deal on one but I had to wire the money and the van is in London…..but the shipping is paid for.  RRRRrrrrrrrrrrright!

The search continues for a van but we are very excited to have the stroller.

ONE YEAR

370 days ago our dreams for Jadon were much like every parent with a two month old.  We wanted him to grow up and be someone special.  Not necessarily in the eyes of the world but in the eyes of the people that matter to him.  We wanted him to have experiences like every kid.

We saw him climbing every thing he could, like Kristin did.  I envisioned him jumping his bike into the side of the house and skinning his knee and bruising his head, like I did.  (I know, that explains a lot)  We envisioned ourselves watching from our office window as he dragged his book bag home from the elementary school across the street.  I expected that call from the principal when he snapped some poor girl’s bra strap.  We saw him graduating high school and hopefully going on to college.  We saw a young man that we would be proud of no matter how he turned out.

We are so very proud of him right now.

One year ago today the test results came back confirming that Jadon has SMA type 1.  Our lives were turned upside down and our dreams were shattered.  Our “normal” was gone and replaced by something that we are still trying to figure out.  The one thing that I am certain of is that he has changed our lives forever.  Forever he has changed us for the better.

Things around here are not always smiles and laughter, but the fact that he is able to smile and laugh after everything he has to go through, shows me that I have nothing to complain about.  It is amazing the things that I have complained about in my life that just don’t matter.  We are truly living every single day for the moment.

I truly don’t know how we would have made it without the support we have received from our family, friends and sometimes complete strangers.  We have been continually overwhelmed at everyones generosity.  I still don’t know how to truly say thank you loud enough or strong enough, but I only know to keep on saying it.  Thank you, Thank you, Thank you.

Tony

Reverse Psychology

Today we are trying reverse psychology on Jadon.  Kristin told him to “have a whole bunch of episodes today”.  Every morning she has been telling him to not have any, and he has done just the opposite.  We will see how this works.  He is on his first Bipap nap at 9:00 and we are episode free so far.

We have also decided that I will hang out with him all day.  We have been trying to have the new nurse (nurse Cheryl) do as much as possible.  The intent was that she would be able to do everything with him all day and then I could go back to work for a couple of days a week.  We have given up on this plan for now.

This morning we just hung out and read some books (including the new books from cousin Mark) and listened to the news.  It was much more relaxing than yesterday morning.  He rests peacefully right now.