7 YEARS OLD

Jadon’s diagnosis ripped our dreams up into tiny little pieces and tossed them to the wind.  SMA took our dreams and left us to hope for things that were merely expectations prior to those 3 letters entering our lives.

We have dreamed about milestones like living to be six months old, a year, and then two years.  Beyond 2 years was categorized as miracle territory.  Only 10% of kids diagnosed with the #1 genetic killer live to celebrate their second birthday.  While we wished for a miracle we prepared ourselves for disappointment as the odds were so heavily stacked against him.

With our dreams being reduced to such short sightedness you can imagine our surprised joy when discussions began about Jadon attending school.  Jadon was thriving and we started to dream again.  We allowed ourselves to dream about something we had truly given up on.

With that dream came a new worry.  We spent his first 3 years worrying the gravest of worries, but this one was new.

Jadon is different from other kids and his differences are somewhat less than subtle.  We worried how he would he be viewed by the outside world?  Would he make friends?  Would he be bullied?  Could he possibly be accepted?

All we ever prayed for was acceptance, but we have gotten so much more.

We have been blessed beyond recognition.  I truly hope our family is not even recognized as a family with a terminally ill child because he is living life to the fullest.

Jadon has not simply been accepted but truly valued.  The kids genuinely love him and that awesomeness brings tears to our eyes.

One day this spring Mrs Green read a book to Jadon’s first grade class about how everyone is good at something.  After reading the book the kids did an exercise where they paired up and told their partner something they are good at.  Being Jadon’s voice I struggled to come up with something these young minds would understand.  Most of the kids spoke of activities such as soccer, baseball, baking, or singing.

I settled on “Jadon is good at making others happy.”

To my surprise this brought the BIGGEST smile to his partners face.  With the most incredible enthusiasm she exclaimed “I KNOW!  EVERYONE wants to be around Jadon.”  Daddy had a little moment right there in class because she made me realize it really is true.  Kids fought to be Jadon’s partner all year long.  Rarely does someone walk by us in the hall and not say “Hi Jadon” or at least give a silent finger wave.  Kids are doing fundraisers in honor of Jadon.  They do class projects about SMA.  They have not simply accepted him but embraced him for all that he is.

Jadon turned 7 years old today and we have no idea what the future holds.  We will continue to take each day as it comes and only allow ourselves to look just so far into the future.  What we do know is that our son has been blessed by some amazing people: teachers, administrators, students, classmates, teammates, neighbors and strangers… all of them now friends.

Happy Birthday Jadon!  You are truly loved.

The Fabulous Miss G, Forever In Our Hearts

Whenever we suffer a loss in our SMA family, it is hard.  And each one has its own affect on us.  We reside in a world that we wish with every fiber of our being didn’t exist.  A world where little ones become angels far too soon and parents have to say good-bye to their precious babies.  But this one, this one just crushed us.  Gwendolyn is very special to us as are Bill, Victoria and little sis, Eleanora.  Over the years and despite the many miles that separate us, an amazing bond, connection, friendship has grown.  We have celebrated with each other, worried and cried with each other, laughed with each other, lifted each other up, helped each other out and leaned on each other.  We have just been there for each other.

And Jadon and Gwendolyn?  Well, they were boyfriend and girlfriend.  Whenever Bug saw a picture of Miss G his eyes would get as big as saucers, he would purse his little lips and get major “happy belly.”  And when Miss G saw Jadon, she would bat those gorgeous long lashes and tap, tap, tap her finger.  He was her blue-eyed boyfriend and she was his fabulous Miss G.  Everywhere you look in Jadon’s bedroom, there is something from Gwendolyn.  Multiple pics that adorn his shelves.  The turtle she gave him years ago that to this day he insists is turned on at night.  The blanket that he loves to have his feet snuggled up in.  Valentine’s Day cards she made him.  Treasures she picked out for him during trips to Disney.  Pout-Pout Fish books.  Tickle Monster book.  She is there.

Whenever we would go out on adventures and Jadon got a souvenir, he insisted that Miss G would get one too.  Always something blue for him.  Purple for her.  Early in their “courtship”, Jadon found out that a little boy had given Miss G a flower while at a playground.  That simply wouldn’t do and he made sure Miss G had an even bigger purple flower from him.

To profess his love for Miss G, Jadon even got a little ink.

And it worked!

Earlier this year, I was blessed to be able to spend some time with Bill, Victoria, Gwendolyn and Eleanora when I traveled out to California for business.  It was magical – a moment when you hoped time would just stand still.  And as the sun began to set and night fell, I didn’t want the evening to end.  I wanted to soak up every second because I didn’t know the next time we would see each other again.  When we finally had to say our good-byes, I raced to my room to call Tony.  I told him we HAD to figure out a way for all of us to get together.  For Jadon and Gwendolyn to meet.  Unfortunately, that never happened.  Just one more thing SMA has robbed from our kiddos.

When Bill called early Saturday morning, our hearts shattered into a million pieces.  The wind knocked out of us.  How could this be possible?  My knees buckled as I crumbled into a heap onto the floor.  This is NOT supposed to be happening.  It simply wasn’t fair.

Ever since Jadon was little, he would randomly look into the corners of the room and jabber/chat.  We firmly believe he is talking to his angels watching over him.  Throughout the rest of the day on Saturday, we struggled with how to tell Jadon about his fabulous Miss G.  We desperately fought off tears anytime we were face-to-face with him.  As we got him settled in his room to begin nighttime treatments, we finally mustered up enough courage.  We told him we had some very sad news to share.  He looked at us very seriously and with his eyes said “Yes.”  We said, it’s about Miss G.  Again “Yes.”  We asked him, do you already know?  This time BIG, BIG “Yes.”  We asked, have you been talking to Miss G?  Another BIG, BIG “Yes.”  He had been chatting earlier in his room during his chill-time.  We should have known he already had a very special visitor come by to let him know she was okay and would be watching over him.  Even now these two have an incredible bond that will always be there.  We take some comfort knowing that the fabulous Miss G is continuing to watch over him and be with him.  

The world was a better place with Gwendolyn Strong in it.

The world is a better place because she lived.

We are better because of Gwendolyn’s life and we will always carry a part of Miss G  with us.

We will Never Give Up.

We are… G-STRONG.

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Jadon is SIX + a few weeks

Jadon is 6 years old…plus a few weeks.

Jadon turned six on the 25^th of June and a funny thing happened this year – we were busy.  We were busy LIVING life.  We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us.  We forewent the big party for a gathering with a few of his close friends.  And what fun they had!

This year, we celebrated his birthday by going bowling – a first for Bug.  Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant.  Phew, partying can sure wear a kid out!   The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team.  Following the homerun trot his team sang happy birthday to him at home plate.  This is definitely a highlight of the whole year.

 

The pure miracle of Jadon doesn’t come to mind on a day to day basis.  It is the milestones where we stop and look around at where we are.

SIX YEARS.

Three times the prognosis of SMA Type 1.  The really strange thing is that these days seem to be our best days yet.  We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives.  So, we’ll say it softly, just once…he’s doing awesome.

Jadon has completed kindergarten and will be entering the 1^st grade this fall.  He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime.  Not to mention all of his friends across the country, ones he has met in person and others on-line.  He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics.  He is a six year old little boy.

 

A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City.  This was an incredible experience as we got to see many families we already knew and others we had never met.  There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven.  It is something to see families at all these different stages of the SMA journey.

We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.

On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy.  We were yet to have our lives turned upside down.  We were yet to understand how strong our hero would have to be.  How strong we would have to be.  Jadon has been through a lot in six years.  There have been some extremely scary days that we thought would be our last but there have been far more beautiful days.  Days where his eyes sparkle just a little brighter.  Days when the faint giggle on his breathe is a little louder.  So many days that we thought we would never have.  So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.

This Saturday, Jadon is going fishing with his buddies…..another first.

The Birthday Haul

When Your Legs Get Tired, Run With Your Heart

 Amy Vrban & Kristin Burks

WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN

I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.

SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!

Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.

I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!

Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.

Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!

Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!

We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!

Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!

In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!

Jadon’s Hope Foundation Partners with Jacey’s Journey to Fund Angel Arms

The gift of mobility is often lost on many.  Truth be told, prior to Jadon’s diagnosis it was something we too took for granted.  Our eyes have since been opened.  With a disease like SMA, watching your child be robbed of this gift is heart-wrenching.  Often times we find ourselves yearning and longing for movement.  Any movement.  No matter how minimal or slight.

We would like to introduce you to Melissa and Allan Kloiber, Mom and Dad to adorable Jacey and founders of Jacey’s Journey.  Like so many SMA parents, they wanted Jacey to experience what had been lost.  They wanted to see her thrive and be able to reach for the world around her like so many kiddos her age.  And so began their quest to make it happen and the invention of the Angel Arm.

 

 

 

 

 

 

 

 

Gravity is the worst enemy to a child with extremely low muscle tone.  By reducing gravity, movement can often occur when it would not have otherwise.  The counterweight of the Angel Arm takes the pull of gravity off the child’s limb enabling them to move.  The device is developed to be used in any direction, on any limb.  While we could go into the technical aspects of the device, seeing is truly believing.

 

 

Simply put, the Angel Arm helps SMA Type 1 kiddos move.

 

Grace Grutter, mom to sweet Nella, summed it up beautifully when describing Nella’s initial use of the Angel Arm:

“I was in tears yesterday…With the help of Nella’s new angel arm, I was able to see her reach for a toy for the very first time in her life! It was such an amazing moment that I will forever be grateful for. Nella was so determined to grab it, and was SO proud of herself. She was smiling SO big! What a huge blessing to be able to have this moment.”

We have been inspired by the determination the Kloibers have demonstrated in developing this device and building them for other SMA families.  Melissa and Allan only charge for materials and shipping, not for the extensive time spent lovingly building or packaging the Angel Arm.  Despite only charging for materials, the device may be too expensive for some families.  Because of this, they have set up a wish list for families asking for funding of the arm.

 

Jadon’s Hope Foundation is proud to announce we have issued our first grant to help fund the Angel Arm wish list.  JHF wants to see every child who wants an Angel Arm to have an Angel Arm.  We are committed and prepared to do more if the need arises.    We believe so strongly in what the Kloibers have created that our hope is to do all we can to help get kids moving.

As SMA families it is important that we all continue to support each other through this life storm.  Necessity is the mother of invention and where there is a need SMA families find a way.  If you would like to directly support the efforts of funding Angel Arms you can do so at the following link.  Every dollar donated through this link will go directly to funding Angel Arms for families.

 

 

If you are an SMA Family wanting to learn more about the Angel Arm, please click on the following link.

 

 If you would like to apply for financial assistance for an Angel Arm please use this link.

 

 

 

Heading to Disney World

Jadon Burks what do you plan to do NEXT…

As we prepare to embark upon our greatest “Dance in the Rain” adventure yet I can’t help but think about the timing.  God’s timing is always better than ours, I just wish it was easier to recognize.

Jadon is heading to Walt Disney World and the plans have been in the works for over two years.  The first time we spoke to Make A Wish Foundation was early 2012 and the plan was for them to grant his wish in September of that year.  Spring of 2012 still stands as the darkest part of this SMA storm… so far.  Jadon was very unstable and had major episodes on a regular basis with 10 of them nearly ending our journey.  We were scared and confused and “knew” we didn’t have much time.

When Make A Wish granted Jadon the wish of his dreams we struggled to figure out what that wish would be.  Our only criteria was that it would make his eyes light up.  We looked for things that would not require us to travel as we were truly scared to leave the comfort of our medical strong hold we call home.  Everything we came up with just didn’t seem right and we kept coming back to the magic of Disney World.  Jadon loves so many of the characters.

We communicate with Jadon through his eyes.  Closing his eyes means “No” and looking up means “Yes”.  It isn’t a perfect system when he doesn’t feel like participating but there is always the tell tale sign of the “Happy Belly”.  When his belly starts bouncing with excitement there is no question of his approval.  When we asked him if he wanted to go see the “real” Woody and Buzz Lightyear he nearly bounced himself right out of his chair.

So here we go.

We are loading up the Family Truckster and heading cross country, but instead of the Family Truckster we are doing it Cousin Eddie style…in an RV.  Make A Wish has rented an RV for us to travel in.  The advantage of traveling by RV is that there will not be the need to unload the vehicle and take all of Jadon’s equipment into a hotel room.  When we pull into our site at night everything will already be set up for treatments.  It seems like a great plan.

Once we get to Florida we will be staying at a “Storybook resort…where children with life-threatening illnesses and their families are treated to week long, cost-free fantasy vacations.”  This amazing place is called Give Kids the World.  It appears it may be a struggle to drag ourselves away from the resort in order to visit the theme parks.  This place looks awesome.

The excitement is really building now and we can feel the magic surrounding us.  Jadon’s Wish Granters and several friends came over the other night to wish him a safe and exciting trip.  That was the night we really, really started to get excited.  I truly wish we could say we weren’t nervous but that would be a lie, in fact we’re shittin’ bricks.  See how nervous I am…I know I shouldn’t use language like that and I apologize…we’re shittin’ rocks.

However, there are a whole lot less rocks than there would have been two years ago.  We didn’t know if Jadon would make it to the fall of 2012 and the trip was postponed so Jadon could have Tracheostomy surgery.  He would not have been recovered in time for the trip and therefore it was cancelled.  He is more than recovered now and he is truly thriving.  Life is better now than it was that crazy dark spring 2 years ago.  We see now, what we thought was being lost was actually simply being reworked, redirected, and made a whole lot better.

Please pray for us.  Please pray for safe travels and that Jadon will have the time of his life.

Fun with Chicken

Wednesday night the Chick-fil-A in Olathe hosted a small fundraiser for Rolling Ridge Elementary benefiting Jadon’s Hope Foundation.  Well… small is what we thought it might be.  We are quickly learning that with these amazing new friends from Rolling Ridge – nothing is small!

Because of cold and flu season we are still not taking The BUG out of doors.  However, his amazing teacher took a laptop and we Skyped in (that’s Ms. Lentz holding Jadon in the pictures below.)  Jadon could see and hear the events at the restaurant and watch the contestants compete in the chicken eating contest and frozen t-shirt contest.  Skyping also meant that everyone could come over and say hi to Jadon.  Needless to say he was incredibly excited and soaking up the moment!

That’s The BUG on the computer screen, right in the middle of the action

When someone would come up and say “Hi”, Jadon became through the roof excited and began vocalizing louder than we have heard since his trach surgery in July.  For the past month, Jadon hasn’t made any sound and only recently started vocalizing again.  Parents, I know it may sound inviting to have your child be silent, but trust me, complete, not a sound silent is no fun at all.  When his classmates would come on the screen, Jadon would get really loud and he had a great time cheering on the contestant participants.  Mad props go out to Rashaud Johnson for winning the nugget eating contest and to Michelle Williams for winning the frozen t-shirt contest.

It was very emotional to see such a large turnout.  Kristin said she got  misty eyed walking in seeing how many cars were in the parking lot and going through the drive-through and seeing the number of people in the restaurant.  She said every table was occupied and people were even standing up- overwhelming for sure!!  And to see all the kids there – wow!  There is nothing better than kids helping kids.

We won’t know the total donation from the night for a couple more days but there was $150 in the donation bucket alone.  One of the cashiers said it was a very good night.  We will have to wait and see, but I think it is safe to say that SMA awareness was spread and money was raised to increase the fight.  Thank you, thank you , thank you.

LOCKDOWN

Tis the season!  Tis the season to batten down the hatches, stock up on supplies, put up the signs, and start the inquisitions.  That’s right, it’s LOCKDOWN 2012.

Winters can be hard for SMA families.  Because a common cold could literally be fatal for someone with SMA, extra precautions are taken.

We wash our hands hundreds of times a day and therefore must stock up on our hand sanitizer; this is our first shipment

We put up our signs:
“Wash your hands and wipe your feet,
Come in this house sick and you’ll get beat!”

We start the inquisitions of anyone coming into our home:

“Are you sick?
Have you been sick?
Are you thinking of getting sick?
Have you been around anyone who is sick?
Heard of anyone being sick?”

We don’t want “sick” in our house.

While we lock out the outside world it also means that we are locked in.  It makes for an incredibly long winter.  Just ask Perry the Platapus, he doesn’t care for our “lockdown reindeer games”.

Cabin fever sets in and we long for any kind of contact to the world outside these walls.

This year we are getting it!

Jadon started pre-school this year and while it was difficult to stop going just before Halloween, Jadon’s teacher has taken his inclusion to a new level.  Miss Cathy, has arranged for Jadon to Skype into the class each morning for a short period of time.

For those that don’t know “Skype”, it basically means that using a computer in our home we can SEE and HEAR the class.  Using a computer in the classroom, Jadon’s class can SEE and HEAR us.  It is AWESOME!

Jadon absolutely loves seeing his classmates.  Miss Cathy has taken it even further to include Jadon in the Halloween parade and also on a recent field trip.  She carries the laptop around with her so Jadon can see everyone and everything.  While Skyping is not the same as being there it is a very good substitute.

We are so “super” thankful for all of Jadon’s classmates as well as Ms. Patti, Ms. Pam, Ms. Melene, Mr. Dave,  and most of all for the amazing, incredible, “High Tech” Ms. Cathy.  Thank You Rolling Ridge Elementary, GO Rockets!!!

D-DAY (Diagnosis Day #3)

August 25^th 2009, is our D-DAY.  The doctors didn’t tell us what our life with SMA would look like today, 3 years later.  What they told us was that 3 years from that day when we spoke of Jadon’s life, we would be speaking of a life that WAS, not a life that can be.  They told us we most likely had less than a year with him and definitely no more than 2.

I don’t blame the doctors for the weather they were forecasting.  The statistics they referred to are unfortunately very true:

-SMA is the number one killer of children under 2
-50% of SMA type1 kids will not see their 1^st birthday
-90% of SMA type 1 kids will not see their 2^nd birthday

It’s not so much about WHAT they did or didn’t know as it is WHO they didn’t know.

They didn’t know all the SMA families we now know.  We have focused our Facebook page ( Jadon’s Hope Foundation) this month on these people choosing to make life the most it can be despite the storm of SMA in their lives. “Life is not about waiting for the Storms to pass, it is about learning to Dance In the Rain.”  These kids and these families have inspired us to new heights

 We know it’s by God’s grace that we are still allowed to look upon Jadon’s face and we feel incredibly blessed to do so.  At the same time we mourn for those short lives that make these statistics true.  Life is way too short and while this journey is rough I am glad our course has been altered.  I am confident that we will not be returning to our formerly scheduled path.  I am confident that we have been forever changed.  For that I am thankful, but SMA still sucks.  We have learned a new appreciation for life.  I would rather have less and appreciate it, than have it all and still be looking for more.

SMA is one nasty storm but we are determined to dance in it’s rain.  The funny thing is, before D-DAY our life had storms but we usually failed to dance.  Now we make the time for life, we appreciate the time, and we enjoy every single second we can. Every life has storms and none of us are guaranteed tomorrow.

What will you do today to “Dance in the Rain”?

This video is set to the song “What Faith Can Do” by Kutless.  This became “BUG’s song” after a friend did a slideshow for us shortly after his G-tube surgery.  Now, everything stops when it comes on the radio and we sing with BUG.  The video shows his last two “unexpected” birthdays and his most recent surgery.  With a tracheostomy there is always a chance the patient will lose the ability to make sound.  We prayed for sound, any sound…it’s amazing “What Faith Can Do”.

Madison Trip

On Sunday May 27th we departed Kansas City heading from Madison Wisconsin.  The trip is our annual pilgrimage to see Jadon’s specialist, Dr. Schroth.   We always look forward to meeting with her and this year was no different.  However, Jadon has been having some major episodes while on bipap (they are very scary) and we were extremely nervous about the trip.  As it turned out, the first 86 hours of our 90 hour trip were perfect.

Sunday – the 8 hour drive was smooth and Jadon traveled like the champion he is.

A guy has to relax after an 8 hour drive.

Monday – (Memorial Day) We visited the metropolis of Fonda Du Lac Wisconsin and got to see The Incredible Smiling Lucy.  That sounds like a carnival name.  Oh and we got to see her parents Barb and Noah as well.   Their hospitality was great and we were served an amazing steak dinner, wow.  Then we visited the famous Gilly’s Frozen Custard, it really is all that Barb constantly says it is.

Watching a movie with stadium seating.

Tuesday – A very long day at the hospital clinic getting poked, prodded, and x-rayed.

Bone Density Scan

Upper GI (looking at his belly)

 Good ole’ x-ray

Not sure how excited Dr. Shcroth was about Jadon naming “Mary the Monkey” after her.

Wednesday – Woke up early but didn’t leave early

Met sweet Ella and her parents Erica and Dan back at the hospital before we took off.

Had dinner outside of Des Moines with Stella and her amazing family, Sarah, Travis, Sayer, and Treyton.  Can’t believe I didn’t get a picture of the whole family.  So good to hang out with such inspirational people.

After dinner we were just on this side of  Des Moines and our worst nightmare came true, an episode in the car.  We pulled to the shoulder of I-35 and performed our life saving techniques.  This was a very very scary time and all we kept thinking was that we did not want to lose him on the side of the highway.  We got him back up and stable and a Highway patrol woman pulled over to see if we needed an ambulance.  We refused of course (this is the crazy life we lead).  They would not be able to tell us anything we didn’t already know.

We have made adjustments to Jadon’s diet as well as his medication in hopes of curbing his episodes.  We are still planning to attend the FSMA conference at the end of this month.  We are absolutely celebrating Jadon’s 3rd Birthday on the 25th (in Minnesota).

We will be re-evaluating Jadon’s care plan in mid July and if these adjustment have not made the difference we are hoping for we will be making a major change.