The End Of The Story...

It happened slowly.  One night here... another night there.  A night when I heard new requests of extra playtime instead of stories - hearing, "Please, Mama, just 'five more minutes' of playing before bed!"  And even requests in bed for my made up (and very dramatic) adventures of Angry Birds vs Piggies.

Before I knew it... there were no more bedtime stories about Gavin.

Every night - from the night we got home from the hospital after Gavin died - he has requested that I tell him the story about what happened.  He was there for the first day - in the emergency room.  The day that shocked us all.  He was there in the hospital - to say goodbye.  I discovered over those months that he took in MANY more details than I ever would have imagined.  He noticed tubes and equipment.  He remembered the sign on the door and what was out the window.

And I discovered something else every single night over those months when he would say: "Tell me the story about how Gavin died."  I discovered that, in telling the story at his request, I respected his way of grieving.  Because that's exactly what it was.  His way of grieving.  His way of processing the unthinkable.  I never pushed my own agenda.  I never said no, even when I couldn't bear to tell him one more time about how the helicopter raced his brother to the hospital.  And why should I have said no?  His request wasn't coming from an adult perspective.  It wasn't morbid to him.  He just knew he needed it.  And I understood that I had to provide it for him.

Brian's emotional well being has always been my top priority since April.  I checked in with grief counselors and had Brian attend some "child life" therapy sessions.  They all agreed that he was managing his grief appropriately for his age.  I felt validated since, really - what did we know about what's right or wrong when it comes to childhood grief?

But that's just it.  Unless behavior is destructive or harmful - there is no right or wrong when it comes to grief.  

So now, we have different routines.  Sometimes there's a book in the playroom before bed.  Sometimes there's a "lay with me and tell me a story about when you were a baby" requests.  Sometimes we just giggle and I listen to him yammer on about Darth Vader.  But every night he still says goodnight to Gavin by pulling that "invisible string."  

Without fail.

I have had a few people ask me why I "let" Brian continue to sleep in Gavin's bed.  Or tell me that I should move him out... that it's not healthy.  My question back is - "Why?"  What harm does it do that this little boy wants to sleep in his big brother's bed?  Maybe he feels closer to him that way!  I can't imagine (in a million years) telling Brian, "Hey - no more sleeping in Gavin's bed from now on.  Back to your own room."  What would be my reason when he asked me "But, why?"  I wouldn't have an answer - because there is none.  To me it would be like someone saying to me, "Hey - no more wearing those lockets around your neck with your children's ashes.  It doesn't seem healthy."  

There's no road map for getting through the minefield that is left after you lose someone you love.

I just hope - many, many years from now - that Brian looks back on this time and feels that he was always "heard."  That his way of grieving and all of his feelings and every one of his needs were respected.

I believe we've reached the end of the story about that day back in April of 2013.  And I feel proud of Brian that he had the confidence and courage to express to us what he knew he needed.

~~~~~~~~~~~~~~~

I hope, too, that Brian looks back on all that was accomplished after Gavin died with pride.  The random acts of kindness... the charities... the volunteerism as a family... and, this upcoming event.  I hope he realizes that instead of giving up - pulling the shades - giving in to our grief... we gave BECAUSE of our grief.  And many, many others gave as well.

In 24 hours, according to my survey, close to 400 people are hoping to attend our Fundraiser/Party/Trivia Night.  (I'm still working on a name!)  I am close to securing a venue that can accommodate 500 people, which means that, once I am ready to start selling tickets, I would need to cut off ticket sales when it reaches that number.  I am working on getting catering.  And hoping for corporate sponsors to help us so we can say that all of the ticket sales and donations went directly to this playground project.  (More on that below!)  And I'm even working to get blocks of hotel rooms at a discounted rate for those coming in from out of town.  This is really happening - and it's happening fast.

Definitely keep watching this blog for updated information.  It's possible I will open ticket sales as early as next week.  They will be first come - first serve and may sell out, so be prepared!  I will give advance notice about a day and time before the ticket sales go "live."  Please take note that you need to purchase a ticket in advance to get in to the event.  There will be NO tickets sold at the door that night.

It makes me so happy that so many of you are excited about this night.  It will be a wonderful day for our family. 

~~~~~~~~~

Sponsorship Opportunities!

Please spread the word about these sponsorship opportunities to corporations, small businesses or anyone who would like to help this very worthy cause! 

$500 Event Sponsor:  Recognition as a major partner/sponsor of the event with the largest signage in the venue and announced by the emcee with your personalized commercial at the beginning and end of the night. Opportunity to offer giveaway or literature to each participant table.

**Update:  the event sponsors that would get the personalized commercials and signage are all spoken for!  BUT!!!  You can still be an event sponsor!  I will advertise all sponsors on my blog and facebook page, which reaches thousands of people!**

$250 Stage Sponsor:  This general sponsorship is a great way to support the playground project and see your name or company name displayed at the event.

$175 Bar or Buffet Sponsor:  No one will miss your support of Gavin and this playground project with your name or company name proudly displayed at the bar or buffet!

$150 "Round Sponsor":  Recognition as a partner/sponsor of the playground project with your personalized mini-commercial at the beginning of one round.

There will also be an opportunity for $50 Table Sponsors once I know how many tables we will have filled:  For a nominal donation, you can have your name or company name advertised on one of the tables.

Contact me through this blog or on the Chasing Rainbows Facebook Page if you are interested in any of these opportunities!

Come On Let's ALL Go Play...

This past October, I was asked to speak in front of several hundred administrators, department chiefs, lawyers and other leaders at the Nemours Leadership Institute.  Nemours A.I. DuPont Hospital for Children is where Gavin spent a lot of time throughout his life.  The two of us lived there for close to three months when he was very sick as an infant.  He was back there, in and out, for illnesses.  He was in the O.R. many times for various reasons.  We sat vigil by his bedside in the Intensive Care Unit several times, wringing our hands and praying he'd be okay.  He had incredible moments there - sitting up for the first time on the altar in the hospital chapel...and finding out his hearing had been restored.  

And then he died there...in the hospital we loved.  

In the hospital that loved him.

I was proud (and a nervous wreck) to stand in front of these professionals and tell Gavin's story.  (If you'd like to read my speech and see the accompanying pictures, you can find it HERE.)  But I was just as excited to have a little face time with Dr. David Bailey, the President and CEO.  I had an agenda - but once I had my shot, I chickened out.  Instead, I wrote an impassioned email to him that very night from home.

Here is that email...

**

October 1, 2013

Hi Dr. Bailey,

It was such a privilege to meet you this morning at the Leadership Development Institute.  I was honored to have been asked to speak.  And, as a parent, it felt special to get a small peek behind the curtain!  I have always appreciated the hard work and dedication of the doctors, nurses, social workers and others we have had direct contact with.  But I also have a new appreciation for all the thought and effort that administration puts into helping the hospital run smoothly.  This affects patients just as much.

I wanted to chat with you this morning, but I didn't think that either of us would have the time to devote to a topic that is so, very important to me.  I decided to email you and, when looking up your email online, I noticed your quote:  

“Everything we do must be for the child. If it’s not, then we need to reconsider why we are doing it.” 

I am so glad you feel that way.  Because as much as I LOVE your hospital (and I do), there is ONE area where I think it has fallen short.  The playground.

I don't know if anyone has ever suggested creating a new playground before.  I would imagine, with all the other expenses and new construction and budget cuts it might not have been seen as a priority.  Maybe people have thought, "If it ain't broke, don't fix it."  But herein lies the problem - I feel like it has always been broken.

When you walk up and down the halls of your hospital, you're sure to see lots of wheelchairs and walkers and kids who are very dependent on their caregivers.

When you walk onto your playground... you don't see a lot of those kids.  Maybe you see their siblings... or kids that are more "able" to climb up the steps of the jungle gyms.  If you do see those kids, they are watching from the sidelines.

One might argue (like maybe ME!) that the kids that really deserve a lot of joy that an "all abilities" playground can offer are those kids that are trapped in bodies that have failed them - or chairs that can't climb stairs.  Your playground has failed those children... miserably, I'm afraid.

I mean no disrespect when I say this, but if the playground isn't changed along with the gorgeous and modern expansion of the hospital... it would be like leaving your plastic garden gnomes and pink flamingos on the lawn of your newly constructed mansion.  They may look cute to some - but they just don't "fit."

Not to mention, (and again - no disrespect!) DuPont is a hospital that is well known for it's excellent orthopedic department and treatment of children with various physical disabilities.  It almost seems shameful that one of the most important areas to a child - the playground - isn't accessible to most of them. 

This is definitely a topic of conversation among parents of special needs children.  You can't imagine how it feels to wheel your child right by a bright and happy looking playground - at a hospital where he or she is supposed to "fit in."  It's the worst kind of sucker punch.  I want to help you help those children.  Because, as you say, "Everything we do must be for the child..."

The playground issue is SO important to me that I'm willing to help - even though my son has died.  I know that he would want this - I wish I had fought more for this while he was here.

I would be THRILLED to have a talk with you about the possibility of creating an "All Abilities" playground.  I have a ton of ideas swirling in my head.  If there are funds that could be dedicated to a project like this, great.  If not, I have discovered that I am quite a talented fundraiser.  After Gavin's death I raised well over $8,000 for your Child Life department - in addition to box after box of donated toys and supplies and musical instruments that are, truly, too numerous to even quantify.  They said every day was like Christmas.  I also raised $20,000 in 85 days for the Chester County Intermediate Unit as part of "Gavin's Trust Project" - ensuring that all of Gavin's friends in our area would have what they needed in their classrooms and in their home therapies.  I recently raised $6,000 in a week to create a newly redecorated children's waiting room in the Paoli Hospital Emergency Room.  The day that Gavin was brought in, Brian sat in their small waiting room with one broken toy and a TV.  Soon, inspired by Brian, the room will have lots of fun and engaging toys, new paint, wall mirrors and seating areas in Gavin's memory.

It would be a dream come true if I can help make this happen.  We called Gavin our Superhero from the second day of his life.  I hope that one day soon, your hospital can unveil a playground where ALL kids can feel like superheroes.

Thank you so much for your consideration!!

Most sincerely,

kate leong

**

You can't imagine my elation when I received a reply email from him - THE NEXT DAY!!  This very busy man who is head of a pediatric hospital (that is undergoing a huge renovation) not only wrote back to me... but he took my concerns very seriously.  Among other things, he wrote:

"Your passion, experience and willingness to commit will almost certainly make this come to life more quickly than it would otherwise."

You can't imagine my elation AGAIN when, after the holidays, I received an email from a director at the hospital.  She wrote that she had been asked to contact me on Dr. Bailey's request.  He decided to proceed with trying to make the playground a reality (YAY!!!) - assigned people to explore the idea - and wanted ME to be part of it!  I'll be attending my first meeting with an executive in mid-March.

Friends... this is huge.  An all abilities playground is something I know Gavin would have loved.  I wish I had advocated harder for this when he was alive... but to advocate for kids like him - in his memory - feels wonderful.  My Dad always taught me that when you want something... sometimes it's as simple as asking.  That's been true most of my life.  I'm so grateful to Dr. Bailey for hearing me. 

 If this playground becomes a reality - it will be a dream come true.

Soooo...curious how this involves all of you?

I am planning a party for all of us.  Imagine an event where we can all meet each other!  I will be there, along with Ed and Brian and Hope.  And lots of other people that are part of Gavin's story will be there, too.  I know some of you have connected with other readers through my journal - and this would give you a chance to meet in real life!  Just the idea of that alone sounds very cool to me.

But wait - there's more!!

I'm going to have a "Trivia Night" run by a professional.  Bill McMenamin, the owner of McM Entertainment, is going to run the trivia - and lead the fun!  His events are always a blast with music and laughing and friendly competition between teams of ten at round tables.  Check out this short video of one of his events - a musical break between trivia rounds had the entire room singing!

Post by McM Entertainment.

Here is my vision.  I would sell tickets ahead of the event for $25.00 (that is all you are required to spend to attend the adults only party!) with the proceeds going to help build the All Abilities Playground at "Gavin's Hospital" - DuPont!!

 I envision a really fun night where Ed and I can mingle and say hello to many of you who we feel like we know...and many of you that we DO know!  I picture a huge space (that I am praying someone will donate so we can keep our costs down!) FILLED with people who all have one thing in common:  they all love Gavin and want to help celebrate his life on the one year anniversary of his death.  Not sure where it will be yet, but somewhere outside of Philadelphia area in Chester or Montgomery County, PA.  I see food (somehow, someway!).  I see raffle prizes that are donated by local businesses and more.  And I even see me asking local hotels to block rooms for a discounted rate for those of you who would want to come in from out of town.  And I totally picture any venue, caterer, business and/or corporate sponsor being THRILLED with the advertising they would get both that day and on this widely read blog.  I have a vision, people.

Listen - I know this seems like a huge undertaking.  I have an eleven week old baby for God's sake!!  But I'm telling you - I don't know why, but I just KNOW that I can do this.  I KNOW I can make this happen.  I KNOW it will be a success.  I should have done this when Gavin was alive.  But I can do it now - for him and for all of the kids like him that have been wheeled or carried or walked right past that playground for too many years.  I owe it to Gavin.

You know... I even see this happening once a year.  Kind of like a "Chasing Rainbows Reunion!"  How fun would that be?

I'm still working out all the details... including if there can be tax write offs for donations, how to sell tickets online, how people can donate if they want to help but can't make it to the party...and even a name for the event.  But today I need your help with something critical and time sensitive.  I need to get an approximate idea of how many people are definitely interested in coming.  Don't worry if you really want to come but don't have anyone to come with.  We can assign individuals to a team!  It will be a fun way to meet new friends!  Or, you could gather ten friends and make your own table.

But for right now - I just need to know approximate numbers.  I have created a survey through "Survey Monkey" so I can keep track of the responses.  I will leave this survey up for a week so as many people can answer as possible.  So check your calendars - talk to your friends - start securing a babysitter - and let me know if you can make it!  As soon as I get a good number count, I will start making real plans and selling real tickets and smiling from ear to ear.  What a 44th birthday present this is going to be come April.

Thank you for filling out the survey below!  (You will only be able to answer once.)

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

One last thing.  If you are a local business that would be willing to donate your space...your services...or gifts for raffle prizes, please message me using the "contact me" bubble on the right side of the page.  Or, you can private message me on the Chasing Rainbows Facebook page.  Obviously, we would prefer for 100% of the ticket sales and other donations to go right to the playground project, so we will really need help.

We're going to take back April in the biggest way possible.  I really hope I get the chance to meet you this April 5th.

(p.s.... I love you, Gavin.)