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.

4th Annual BUG RUN (5K & 10K) -Best Yet

The 4^th annual BUG RUN took place on April 30, 2o16.  WOW what a day!

The BUG RUN is always very emotional for us and it literally takes us about a month to recuperate.  The day itself is a culmination of a full year of planning.  Amy Vrban, our race director along with the BUG RUN Committee Members do an AMAZING job and this event literally would not happen without each and every one of them.  This is part of the emotion.  The fact that these good people take time from their lives to serve the SMA community, to fight for these kids, this is overwhelming for us.  There are not enough thank yous in the world to adequately express our gratitude

Amy Vrban, THANK YOU.
Jennifer Snyder, THANK YOU.
Holy Hunsaker, THANK YOU.
Andrea Sorrels, THANK YOU.
Kristin Willingham, THANK YOU.
Cathy Lentz, THANK YOU.
Katie Horner, THANK YOU.
John Ernst, THANK YOU.
Melissa Huckabey, THANK YOU.
Melissa Comba, THANK YOU.
Allison Melton, THANK YOU.
Meghan Muntz, THANK YOU.
Jennifer Thompson, THANK YOU.
Joanne Baxenale, THANK YOU.

When we step back and see what the people around us are doing to help fight SMA we are simply blown away.  We don’t believe it is possible to have “too much goodness” surrounding us but we are blessed to be testing that boundary, and we thank God every day for it.

Our friend, teacher, and BUG RUN committee member Katie Horner added a little goodness of her own this year.  She took the SMA fight to Boston two weeks before the BUG RUN.  She wore the Jadon’s Hope logo with the message “RUN TO END SMA”.  Before she left for Boston she also completed her 7 month mission of raising enough money for EVERY student at Rolling Ridge Elementary School (Jadon’s School) to be entered into the BUG RUN.  This is an act that will serve as a life lesson for all 485 students.  These kids are being encouraged to not only be active but also to think of others.  They are being led by example to do what they can to help others who may not be able to help themselves.

The Thursday before the BUG RUN all students received their race packets which included a T-shirt, race number (bib), and “Honor Card.”  If we could bottle up the excitement of these students on that day we could change the world.  We believe this, not so small act, truly is changing our little part of the world here in Olathe Kansas.  These kids were so excited to run.  They were even more excited to run for someone who cannot.

One excited student said, “Mrs. Horner, I am running for Charlie, who are you running for? Are you running for a Warrior or an Angel? I hope they find a cure so there are no more angels.”

 

Rolling Ridge Elementary Rockets

 

The nerves always peak the night before the race but this year was much more intense.  The week before the race, Mr. Weather Man was forecasting rain for the entire day.  We tried not to think about the disappointment those 485 kids would feel if the race was canceled due to severe weather.  12 hours before the event the threat of severe weather was removed from the forecast and we were all but certain we would have a race, although it may be a wet one.

Race day came and the rain stopped 1 hour before the starting gun.  Despite a very rough night medically speaking, Jadon was ready to go, and what looked like was going to be a less than ideal day took on a special appreciation.

As we walked up the hill from our house to the school we could hear people lining the streets saying “Hey, there’s Jadon,” and we tried not to smile TOO much.  As we topped the hill it was apparent there would be more people there that day than any other BUG RUN.  It was exciting to stop and have people take their picture with Jadon but it was even more moving to have kids come show Jadon their “Honor Cards” and proudly tell him who they were running for.

We had 150 kids and adults affected by SMA represented on the cards.  Dozens of Jadon’s friends were on these cards but It was an easy choice as to which card Jadon would choose to wear.   (Read: A Special Honor Card).

Jadon’s Momma gave a moving speech about living with and fighting SMA as well as some of the things Jadon’s Hope Foundation is able to accomplish because of all the amazing support.  The National Anthem was sung, the gun went off, and the 4^th annual BUG RUN was underway.  This was the first year for the 10K race and we are proud to say that we will have the 10K again next year.

The Bitty BUG run was a highlight as it is every year.  The little future SMA fighters finding their legs makes everyone smile.

We never feel like we are able to talk to enough people, we feel like we don’t talk long enough to anyone, there is no adequate way to show our gratitude, and the day simply flies by…but WOW what a day.

Thank you to everyone who came out and made it what it was.

Thank you to all of our sponsors who joined the fight and made this day possible.

We look forward to next year.  We look forward to an even bigger year.

Thank you thank you thank you!

 

 

This picture courtesy of Craig Emme

SEE YOU NEXT YEAR
FOR OUR 5TH ANNIVERSARY RUN!

 

A Special Honor Card

 

Each year we print “I run in honor of” cards which we call “Honor Cards.”  These simple cards honor an SMA warrior or angel from all over the country and a few different countries.  The cards are laid out at packet pickup day and runners choose one to pin to their shirt the day of the race.  These cards are dear to our hearts as we know firsthand the fight these families endure.

One card was extra personal for us this year.  Jadon insisted one of those cards be pinned to his shirt the day of the race.

Gwendolyn Strong, “Miss G,” became an angel between the last BUG RUN and this one.

It was a bitter task to type “Angel” under her name when making the cards.  It still doesn’t seem possible.  The devastation of SMA often doesn’t seem possible.  It was emotional to see her beautiful face on Jadon’s shirt and know what her parents and so many others have gone through since the last time this event took place.

In years past we have honored the angels taken between The BUG RUN the prior year and the current year, with a balloon release, a balloon for each child.  This year we did it differently.

Miss G was a butterfly in her own right and this year the appropriate number of butterfly stickers were attached to race bibs randomly within the crowd.  Kristin asked those with butterflies to raise their hands.  Each hand, 110 of them, represented a soul taken from this world by SMA since last year’s BUG RUN.

Miss G was Jadon’s California Girl.  She was a bright sparkling girl who showed us that life with SMA does not have to be confined to a hospital bed.  It was Gwendolyn’s example that often times got us out our front door and into the world.  By showing us her “Never Give Up” spirit we learned how to “Dance in the Rain” of this SMA storm.  We literally saw all that she was doing and were inspired to get out and do more with Jadon.  Gwendolyn will always mean the world to us.

You could even say that she had a hand in The Jadon’s Hope Foundation as it was her parents who encouraged us and helped us get the foundation started.  They encouraged us to move forward in all aspects of our SMA journey.  The Strongs are good friends, inspirational advocates, and amazing parents.  Our hearts ache for their loss.  Our hearts ache for 110 families who have suffered this loss within one year.  This is why we “Run to End SMA.”

Pictures from The BUG RUN 2016

For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE

 

2016 BUG RUN by Amy Vrban – Race Director

 WRITTEN BY AMY VRBAN –
BUG RUN RACE DIRECTOR

I don’t know if I can ever adequately thank everyone that is involved in the Jadon’s Hope Bug Run year after year! But, I will continue to try! Thank you to you all so very much! From volunteers, to participants, the City of Olathe, our sponsors, vendors, Rolling Ridge, our families and the Bug Run committee! What an amazing group of people coming together to support each other and RUN TO END SMA!! This was the biggest year yet and good things are happening in our community!! With all your help and support the Jadon’s Hope Foundation continues to be able to provide support to other children and families battling SMA and other childhood diseases! People helping people! What a blessing!

Jadon and his family have taught me many things. One of them being, “dance in the rain.” I keep this in mind daily! Life is what we make of it and we must just learn to make the best of whatever comes our way. The Burks family lives this daily and they are inspiring beyond all words! I am thankful for their friendship and allowing me to be a part of their lives. For allowing me to organize the Bug Run and teaching me to give, love and hope beyond all boundaries.

The evening before the Bug Run, I met with Our DJ, Ty. (Best DJ in the business by the way and a Bug Run Sponsor!) We were talking about the rain and where the set up would be, etc… Then we just started talking about music. I love music, all kinds! I had mentioned that one of my favorite songs is “Man in the Mirror“ by Michael Jackson. I never thought anything else about that and started to prepare for rain the next morning as it was looking like we weren’t going to dodge it. After a sleepless night of watching the radar, praying, and going over courses, details, plans in my head over and over, it was time to get everything set up and we will push forward rain or shine. After all, that’s what we do. We overcome, we dance in the rain!

The rain was minimal and even clearing. By 6:45am the start line had been set up. Vendors were putting their things in place, the committee was working hard to finish setting up and completing last minute details, registration, etc… I took a moment to go into the street to absorb it all in and enjoy the quietness. The rain had stopped and it was clearing and the morning was going to be beautiful! In just one hour from that time the street was going to be filled with hundreds of people. Coming together to fight for each other, RUNNING TO END SMA!! My heart was full and then what do I hear? “Man in the Mirror”. It came across the loud speakers. I knew what it was in just the first few notes. I literally could have cried in that moment. Maybe that song isn’t really a pump me up, running kind of song. But, the words are impactful!. MAKE A CHANGE! Start with ourselves and help the world to be better! That was so fitting, for me personally, for that moment. That’s what we were all doing and coming together to do that day! Ty, thank you for that moment. I embraced it and I sang and I danced in that street and just an hour later 1200 plus people were there to walk, run, and support the cause to RUN TO END SMA!!

There were so many great moments of that day and I have put together a video of my personal favorite moments.

VIDEO BY AMY VRBAN

Music By Michael Jackson

There were a thousand more pictures and moments and I hold them all close to my heart. I know how thankful Kristin and Tony are and there is no doubt how close they hold all those moments and many, many more as well.

I hope to see you all next year at the 5th Anniversary of the Jadon’s Hope Bug Run!! Plans are already in the making! Jadon will be celebrating his 7th birthday next month!! I ask that all of you continue to keep him and all SMA Warriors, Angels and their families in your prayers. Pray that a cure can be found! Pray more people want to help make a change and a difference is so many lives. Blessings to you all and thank you again!!!

2 More Sleeps Until The BUG RUN

We have been following Katie Horner’s Mission over the past several months ( Woman on a Mission) and it is all about to come to a conclusion.  It has been an emotional journey to see her work so hard and reach her goals while constantly thinking of others. Her objectives are just two days from being completed.

COMPLETE –  Raise enough money for all the students at Rolling Ridge to run The BUG RUN.

COMPLETE – Run The Boston Marathon.

REMAINING – RunThe BUG RUN and show ALL 485 students at Rolling Ridge what it means to run for a cause…”RUN to end SMA.”

This is an update from Katie today:

“2 more sleeps” as my son Hunter, who is the same age as Jadon and share the birthday month of June together, would say until the 4th Annual Jadon’s Hope Bug Run!

Today, like many days, was another day at Rolling Ridge where excitement filled the air! Our students received their race shirts and bibs. On top of that excitement, we decided to have an all school picture. So, with about 480 kids plus numerous staff members, we all went out to the playground first thing this morning to smile in the sun as a community! A community that shows compassion, spreads awareness of SMA, stands together, works together towards many common goals, and supports one another! We are truly blessed and could not have done that without the support from this campaign and the support of the entire staff at Rolling Ridge pulling together to make this happen.

I leave you with some quotes that were heard from our students at various times today. Some of which I heard and others that were passed on to me.

“Hold up, we get our OWN number?!?!”

“My number is 246 or maybe it was 146, I don’t know, but either way I have a number!”

“You have the same shirt on that I do…(long pause), wait we all have the same shirt!”

“Mrs. Horner, I am running for Charlie, who are you running for? Are you running for a Warrior or an Angel? I hope they find a cure so there are no more angels.”

Together, WE RUN TO END SMA!

Six Years Ago Today – D-DAY – Diagnosis Day

Six years ago we received a call that forever changed our world.  A moment that will remain burned into our souls. Tony and I each held a phone as we stood beside one another, bracing for the news to come. I remember gripping the phone as the doctor began to say, “We have received Jadon’s test results.  I’m so sorry, but he has tested positive for Spinal Muscular Atrophy.”  She continued to speak, but to be honest the words began to jumble into a complete blur.  All I wanted to do was scream, “NO!  The test results are wrong!” and throw the phone across the room.  The next memory I have is scooping up my precious baby boy, snuggling him while tears fell down my face.

The days, weeks and even months that followed were filled with lots and lots of tears, moments of anguish and grief and many sleepless nights.  So many nights I held Jadon and just rocked him while listening to his lullabies, trying so hard to make sure my tears didn’t fall onto him.  I often wondered, will tonight be the last time we get to rock like this peacefully listening to his lullabies.  When you are faced head-on with loss, you quickly learn to soak up the smallest, most minute detail.

That was an extremely tough time for us.  We struggled.  Struggled to accept the reality placed before us.  Struggled to let go of everything we “knew” and the dreams we had.  Struggled to figure out the new journey ahead of us.

But in the midst of all this, the one thing we held steadfast to was HOPE.

Hope that we would weather this storm.  Hope that Jadon would live past the predicted “nine months to a year” the doctors had told us.  Hope that someday, other families would not be faced with this horrific disease.

It has not been easy.  We have experienced many dark days and nights.  Stared death straight in the face and thought for sure that was the end.  But HOPE kept propelling us forward and by the grace of God, we are at this moment today.

Six years ago our lives changed forever.  Changed how we look at the world.  Changed our hearts as to what is truly important in this life.  Changed how we go about our daily lives.  And it was all because of a little baby boy that taught us how to dare to dream again.  Dare to HOPE.

“Don’t lose HOPE, you never know what tomorrow brings.”

First Grade – A Day We Thought Not Possible

It was September something, 2009 and we stood behind the glass door on the front of our house.  Kids were filing by, walking in groups, talking to each other, some ran by all of the others while some drug their backpacks along the ground.  On this day, we were less than one month past Jadon’s diagnosis and we were still trying to figure out what his future looked like.  What our new dreams for him would be.  We were told that all of our old dreams were gone.  That afternoon, one of those old dreams passed right in front of us as all those healthy kids marched by.  It hit us – our son would never be one of the crowd.  He wouldn’t be the brilliant, All-American, ninja, superstar of the football team like we had thought when we placed his first football beside him at the hospital the day he was born.

When we hunted for a house in Kansas City the fact that there was a school up the street didn’t play a part in our decision.  We recognized there was a school but had no idea if it was good, bad, or indifferent.  All we knew was we wished it wasn’t there that particular day.  Those kids, by no fault of their own, seemed to be taunting us.  Showing us the dreams that we were forced to give up on.  Jadon would not only never be strong enough to drag a book bag but also would not be alive long enough to be enrolled in school.

We closed the front door on the sidewalk parade with tears in our eyes as we also seemingly closed the door on the simplest of dreams – our child attending school.

We had decided to fight the disease that was robbing our child of movement and functions.  We had decided to take one day at a time and had decided that we would “Dance in the Rain” of this ridiculous life storm known by three letters – SMA.  We did not know if our fight would yield any rewards but we would fight anyway.  We would put aside dreams like going to school and that school up the street would become irrelevant.

Last night we sat down to update the letter sent home to the parents of Jadon’s first grade class.  The letter explains while Jadon has physical differences from their children, deep down he is just like his classmates.  He enjoys a lot of the same things and probably dislikes a lot of the same things as they do.  He loves going to school and while his body is not doing what he wishes it would, his mind is very much intact and functional.  He loves life, loves having fun and could be a great friend.

As we finished the letter, it struck us – this is the fourth letter we have had to write.  Jadon has been attending school for the past four years (2 years of preschool).  WOW!  The significance of such a milestone for an SMA Type 1 child is not lost on us by any stretch.  Here we are, smack dab in the middle of August – SMA Awareness Month.  The time when we remind everyone the devastating statistics that come with an SMA diagnosis:

50% of children diagnosed with SMA Type 1 will not live to celebrate their first birthday.
90% of children diagnosed with SMA Type 1 will not live to celebrate their second birthday.

We know far too many families that never got to see their beloved little one attend school.  We are incredibly grateful to once again experience this milestone with Jadon.  First Grade – we didn’t think it was possible, yet here we are.

And that school we thought was going to be irrelevant?  Well, they have become a saving grace.  The staff is like family.  The kids are amazing.  Everyone has lovingly embraced Jadon.  They encourage him.  They want him to have an amazing educational experience.  They lift our family up.  The experience of school is different than what we envisioned, but it is good.  It is really, really good.  We know how blessed we are to be a part of the Rolling Ridge family.

And while we have fully accepted that Jadon will not be the star of the football team we know full well this star was born to SHINE.

SMA Awareness – What we want you to be aware of – 2015

SMA is an inherited disease in which the children are not able to build muscle effectively.
This lack of muscle growth will most often affect crawling, walking, head control, as well as swallowing.  As the disease progresses it typically affects breathing, swallowing, and coughing.

We are often asked what we want people to be aware of in regards to SMA.  This blog could be 20 times longer but it encompasses the basics we would like everyone to know.  It’s not that a person needs to be an expert but if  the need arises, having read this information may make a difference.

First – We want people to know the disease exists.  SMA = Spinal Muscular Atrophy.

– Most people have never heard of Spinal Muscular Atrophy, including medical professionals (We certainly had not).  We want everyone to have heard of the disease.  When I say “Spinal Muscular Atrophy” I want people to say “I’ve heard of that” rather than “Gesundheit” because they think I just sneezed.

To get people’s attention we must tell them how severe the disease is
– #1 Genetic killer of kids under 2
– 90% of the kids diagnosed with SMA Type 1 don’t live to see their second birthday

Most people have heard of ALS since last year’s Ice Bucket Challenge, well, the symptoms of SMA are VERY similar to ALS but it affects babies.

Second – Symptoms and Diagnosis

There are 4 main types of SMA with Type 1 being the most severe.  As a general rule the type is dictated by age of onset and furthest milestone reached. The other 3 types would have similar symptoms but less severe.

These are symptoms for a type 1 (Usually diagnosed between 0-6 mnths of age):
– Muscle weakness, limpness in the arms and legs. “floppy baby”
– Most type 1s will never sit on their own and won’t be able to hold their head up
– A weak cry, cough, and swallow
– Their belly will be very active during breathing
– The chest will be narrow and the belly rounded giving the torso a pear shape
– Most will develop a frog-leg position when lying flat on their back
– The tongue often twitches

These are several symptoms but the child may have all or only a few of these. 

Third – You can be tested to see if you are a carrier of the disease. 

-1 in 40 people carry the gene that causes SMA.
– If you are considering having children it is advisable to be tested.  Knowledge is power.
– If anyone in your family is a carrier of SMA (even second or third cousins) your chances of being a carrier increase.  If you have a first cousin that is a carrier, your odds increase to 1 in 8. (We are carriers so I hope our family members are paying attention.)

Two carriers having a child present a 25% chance of the child being affected by SMA.

Fourth – HOPE ENDURES

-Newly diagnosed families NEED to know that there are options of care that can extend the child’s life.  Despite the staggering statistics there are care options that can (not always) extend the life of even the most severe cases.  Our son Jadon is considered a weak type 1 and he turned SIX years old this year.  That is three times the prognosis.

This care relies on the help of many machines and a specialized diet.  These options may not be right for every family but every family needs to know they exist.  Doctors definitely need to know these options exist and offer them to newly diagnosed families.  Not just tell the family there is nothing that can be done.  Not tell them “Just take your child home and love them.”

Fifth – There is a lot of very promising research.

-There is so much scientifically known about SMA that we truly believe there will be a cure!!  There are several human clinical trials going on right now that are showing great promise.

Sixth – Newborn Screening

– All newborns are tested for several diseases but SMA currently is not one of them.  It should be included and there are many people diligently working to make this possible.  It would be beneficial to know an SMA diagnosis as early as possible.  Once a cure is discovered this becomes even more critical.

These are the very basics of SMA Awareness.

Check out our Facebook page the entire month of August as we provide more insights into the SMA world. And please, if you have questions, don’t hesitate to ask: www.facebook.com/JadonsHopeFoundation  or email us at: JadonsHope@sbcglobal.net.

Learn more here: http://jadonshope.org/index.php?page=learn-about-sma

Newly diagnosed: http://jadonshope.org/index.php?page=newly-diagnosed

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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