Gavin's Birthday Project - The Not So Grand Finale...

As Gavin's sixth birthday was approaching this past September, Ed and I struggled with how we should "celebrate."  One of the ways we decided to mark the day was to "re-do" the children's waiting room in the Paoli Hospital Emergency Room.  The same emergency room we took him to the day he had his febrile seizure that ultimately led to his death.

After getting approval from the hospital... and deciding what I wanted to purchase... I opened it up to all of you in the event you wanted to participate.  And boy, did you.  I started a "Go Fund Me" page with an end goal of $1,000.  Ed and I donated $600 - and a thousand dollars more could purchase everything I had chosen.  Very quickly, the goal was surpassed.  I wasn't sure what to do - so, once again, I opened it up to all of you.  The overwhelming majority decided that they wanted me to keep it open so they could continue to donate.  You suggested that I get better toys - bigger toys - more toys - you just wanted to keep giving.  I set a date to close the project and, in the end, I had so much excess money.

I purchased all of the toys and furniture for $2, 320.96.  

The amount raised was $7, 444.00.  I didn't realize that Go Fund Me took such a large fee so I was bummed when $6,017.26 was the check I received from them after they took their "cut."  That means that $3,696.30 is what is left over.  You were extremely generous... and we were so grateful.

I was so excited about this project for several reasons.  For one, it was truly inspired by Brian - who was left in that waiting room on one of the worst days of his life.  I involved him heavily in the whole process - choosing the toys, helping me assemble them when they arrived at our house and I really pumped him up for the big day when we would help put the toys in the room.  Two - Gavin was born in this hospital. He spent a month in their NICU.  And his heart stopped beating in their emergency room on April 10th, 2012.  Doing something so fun and joyful in his honor was a big step towards healing my heart.  I had to make something positive out of this extremely negative situation.  Focusing on every aspect of this project - from choosing the toys and knowing just where they would go in the room... to having all the toys delivered to me so I could take the burden of inspecting and assembling them off of the hospital... to looking forward to the big day when we would be there as a family to help place everything and see all of our hard work after the end of this long, emotional journey.

Unfortunately, nothing went the way I had hoped... or planned.  Some of the things I told you were going to happen - didn't.  Some of the ways that I told you that things were going to be done - weren't.  And the entire process took way longer than I ever expected.  There was one toy that was backordered - and I didn't receive it until November.  I had wanted the room completed by Gavin's birthday in September.  While I waited and waited - I didn't know how to update you anymore.  Every update would have been "still waiting!"

The good news?  It's done.  (kind of)  The mission of providing the hospital with a waiting room filled with new, bright, fun toys has been accomplished.  My personal mission of having "ocean themed" toys - including a sand/magnet table that has sand from under "Gavin's Pier" in Ocean City, New Jersey has been accomplished.  Here are some before and after shots of the waiting room...  

Before

After

Before

Before

After

Before

After

Before

After 

At the end of the day - it's done.  And part of me wants to say, "All's well that ends well!"

But I can't.

I am not looking to publicly shame anyone, so I'm not going to get into the details of what I experienced on the journey to complete Gavin's Birthday Project or name any names.  It has a lot to do with how I was treated and talked to.  But I will tell you one small part.

As I said, I had all the toys and furniture delivered to our home.  The large boxes, furniture and assembled toys were in our living and dining room.  As we waited and waited for the backordered piece that would complete the sand/magnet table, I was getting closer to my due date.  I was anxious to get everything out of our house to make room for baby things.  My first idea was to deliver everything BUT the sand/magnet table - basically complete the room as a family and then bring the table over when it arrived.  But I was told it was a busy time for facilities and they needed more notice.  So I was told that we could drop everything off (as a favor to us so we could get it out of our house) - but we would need to give an exact day and time we were showing up.  We were told to drive around the back of the hospital to the loading dock and facilities would be there to unload our car.  They would store everything until the day that we were both ready to do the install.  We chose the next day at three for our "show up" time.  I taped sheets of paper to every single item and wrote in sharpie pen what it was for... and to please contact the Leong family before installing in the waiting room.  And I added two phone numbers to reach us.

We showed up.  We had our two cars packed with all of the furniture, toys and boxes.

We showed up.  But there was no one there.  

We waited and waited.  We saw someone walking out that looked like they were with facilities... and they had no idea who we were or what we were talking about.  And the woman that I'd been working with all along - that told us to give an exact day and time - was gone for Thanksgiving.  I was so upset.  They finally decided that they would just unload everything and place it in her office.

I ended up in Labor and Delivery that night.  My blood pressure was very high (shocker) - and my OB kept me over Thanksgiving.  And we all know that just days later I was back in Labor and Delivery - this time to actually deliver Hope.  November 30th.

After Hope was born, I didn't pursue the issue right away... and I figured that if they were ready to install, they would call.  Of course they would call - it was the plan all along for us to be there!

I was wrong.

When I got an email last week from someone who generously donated to this project - pointing out that she donated in August for Gavin's birthday in September and it was now January and nothing has happened - and was threatening to call her credit card company to report fraud... I freaked.  I can't say I could blame her - she wanted to know that her money went to what I promised it would go to.  All of you trusted me with your money - and I took that very seriously.  I knew I needed to give you an update - and show this project completed - so I called my contact at the hospital to tell her that we were ready to come over for the install.

When I got the call back - she told me that they went ahead and put everything in the room before Christmas.

Before CHRISTMAS.

I was heartbroken.

heartbroken.

I was so involved in every aspect of this project - as was Brian.  The whole process was a build up to the grand finale of the install.  The idea that they did it all without us - despite my clear communication all along, including notes on every single item - in sharpie pen - crushed me.  The fact that people have been in and out of that room and we hadn't even seen it - devastated me.  

 Things were placed wrong (like the big fish mirrors that are supposed to be low so KIDS can see themselves in them) which totally bums me out.  And there's a furniture set that they still haven't put in the room.

I feel humiliated.  I feel deflated.  I feel a bit angry at how I was treated.  I feel embarrassed that promises I made to you were then broken by them.  I will never do a project like this again.  What was meant to help heal my heart made me feel worse.  I decided to skip the "promotional tour" and have no desire to be in photos for the hospital newsletter or website or anything.  It was never about that anyway.  We chose, instead, to contact the doctor that took care of Gavin on that awful day in April.  Dr. Stuart Brilliant.  He was responsible for - basically - saving Gavin's life.  He stabilized him so he could get on the helicopter to DuPont - which meant that we had more time with him before we had to say goodbye four days later.  And the nurse manager who helped us, Bernadette Weiss, who was a calming presence to me.  We were happy to see them this afternoon... and introduce them to Hope.  

I was able to spin the story to Brian so he wasn't disappointed about missing the install day.  But having to do that at all was not fun - it added more stress to my life.  The two of us had been on this journey together and I really built him up for that big day.  But today he was fine - and enjoyed playing with the toys.  He's happy that other children who are "left waiting" will have fun things to play with.  

After my experience over the last several months, I don't feel comfortable leaving the excess money we have with the hospital.  I'm not entirely pleased with some of the decisions they've made throughout this process - so why should I assume our money would be used in the way we asked?

So - I'm coming back to you.  You were the ones who donated so generously and you deserve to be a part of this decision.  I want you to decide where the excess money should go - we have three places that are a big part of our lives to choose from.  If you can vote in the poll (you can only vote once) - I will let the majority rule.  I will close this poll on Monday, January 13 at 3pm.

Here are the choices.  You can click any of them to learn more about why they are important to us - and then make your choice in the poll at the bottom of this journal entry:

1.  Gavin's Trust Project

2.  DuPont Hospital's Child Life Department

3.  Gift of Life Family House

Thank you for participating in Gavin's Birthday Project.  I hate to say this - and I hate feeling this way - but I'm truly just happy that it's over.  The Grand Finale was not so grand at all.  (p.s. - It was brought to my attention today that someone called the hospital to speak to the person in charge "on my behalf."  Please - I beg of you - do NOT do this.  No one needs to speak to anyone on my behalf.  Doing this behind my back feels very violating - and is really overstepping a boundary.  I know you want to "fix" this - but please let me handle it.  Thank you!!!)

Where should the excess money go?
	Gavin's Trust Project
	DuPont Hospital's Child Life Department
	Gift of Life Family House
	Split between all three!
pollcode.com free polls

Thank You, Readers!!...

I am so, so happy to share an update with all of you on what's been happening because of Gavin's Trust Project.  Because of you - and your $5.00, $25.00, $100.00 and even $1,000 donations - so many children, teachers and families have been helped.  I know how grateful we were when we were lent different equipment and toys to trial with Gavin.  And we were fortunate to be able to purchase many things on our own.  But, as you know, this is not always possible for families.  And special education teachers and therapists shouldn't have to beg, borrow and duct tape to get what they need for their "kids."  Every donation, big or small, from you - and even some of the companies you work for - has made a HUGE difference.  Here is an email I received from Deb Hiller from the Chester County Intermediate Unit.  She is in charge of the purchases made with the Trust Project money and was able to open and "furnish" (in more ways than one!) several classrooms in our area.  In our time of grief after losing Gavin, this project has meant so much to us.  As Gavin's Mommy, my personal motto was that I aimed to make "the impossible... possible" for my little boy.  To feel like we're continuing to make seemingly impossible things possible for kids like him brings us much comfort.

Thank you.

Kate,

Oh my have we been busy and so happy. Gavin's Trust has helped provide toys and switches to 4 different classes for students with physical and learning needs. We could not include the faces of the students, but they are from a variety of classes and students. Please see the attached pictures that include students utilizing voice output communicators to participate in school activities including ask for what they want, comment on an object, Say "hello", make a choice, play on a light board, ask for "more" and say '"all Done", make a caterpillar light up and play music, etc..

We have also developed a lending library (pictures of closets with toys and switches) to loan toys, low tech communication  devices and switches to the families of students we serve in that are too homebound Preschool Special Education students.

More pictures are coming soon.

Thank you for all your support of these precious children.

Deb

Not even shown is the furniture and swings and more that were purchased for the classrooms!  It's truly been unbelievable.

If you would like more information about Gavin's Trust Project - you can always look to the right side of this blog where you will find an explanation, where to mail a check or how to donate online.  You could also click HERE to read the original blog post with everything you need to know.

If you're wondering what's going on with "Gavin's Birthday Project" at the Paoli Emergency Room, I have an update on that, too!  (Note: we are no longer accepting donations for this!)

I had all the toys and furniture delivered to our home.  I wanted to open and assemble each one personally to make sure everything was A-Ok before delivering it.  Unfortunately, one pice of one toy arrived broken...and then it was on backorder...and I'm still waiting for that to be delivered.  As soon as that arrives, we will make the arrangements with the hospital to head over for the installation and unveiling of the new children's waiting room!!  We're very excited about this project - inspired by Brian - and are grateful to all of those who donated to make Gavin's Birthday Project become a reality.  Hopefully we'll make it over there with everything before Hope arrives!!

Thank you for everything you've done for our family.  Whether you've donated money... prayed for us... encouraged us... or even just read my journal entries so you could better know Gavin and our family... we could never have imagined, in a million years, this incredible outpouring.  We don't take it - or any of you - for granted.

Brian's Big Idea...

This morning, Brian and I headed to the Paoli Hospital and the two of us sat in the small children's waiting room so I could tell him the BIG news.  Watch this video to see how it went...

Brian is so excited about this project and feels so proud that it was "his idea."  He even said he can paint the room... if I lift him up because, "I'm a little bit little, Mama."  

The Emergency Room is thrilled that this is going to happen - and they are just as stunned as I am at the money that was so generously donated.  I am closing the donation site down at 8pm tomorrow night (Friday).  I do have to make some changes to some of the items that I originally chose  - some of the items, as it turns out, would take up too much space in the little room.  But the extra money will allow me to get bigger and better things - like a bigger wall panel that will add to my "ocean theme" in honor of Gavin's love of the ocean.  After a lot of thought and discussion with Ed, we have decided that any leftover money will be given to the hospital's fund development coordinator.  We will ask that it be earmarked specifically for that room.  If a toy breaks, they will have money to replace it.  If they want to purchase coloring kits (which they would have to keep behind the check in desk in order to monitor) they can use money for that.  Whatever they need for that little room, they should have the money to do it for quite some time, thanks to all of you.  Paoli isn't a pediatric hospital like DuPont is.  It's a local hospital that has a trauma level emergency room - and an amazing NICU where Gavin spent his first month.  The room is not like the Child Life Department at DuPont where they have tons of toys and a fish tank and people to staff it and lots of books.  It is just a small little room off of the main waiting room in the E.R.  But now, thanks to this Chasing Rainbows community, it is going to be a room that is larger than life... and filled with the spirit of my little boy.

After tomorrow night at 8pm, I am done.  There will be no more projects... except "Project Hope" who will require all of my attention come December.  While I appreciate all the emails and comments suggesting that I take my fundraising efforts nationally - or even globally - and help programs all over... and while I am flattered by your faith in me... I am done.  The things that happened - the "In Lieu of Flowers" charities... Gavin's Trust Project (which will remain open on my blog forever)... the Wish List Drive for the Gift of Life Family House... and this E.R. waiting room project for Gavin's Birthday are enough.  We had hoped to make a little difference in our community - especially with organizations that directly impacted Gavin and our family - and we did.  We had hoped to ensure that Gavin would have  a lasting, permanent legacy that was beyond this indelible electronic blog - and we did.  And now?  Mommy can rest.

I can't wait to show you the "before" and "after" pictures of this waiting room that WE - all of us - created.  Thank you.

Brian's first T-Ball practice was awesome.  He had SO much fun - even though he had no clue what was going on.  The majority of the kids seemed to know their sports - like what in the world a 'base' was.  Brian had no clue that he didn't know anything - he just had fun, and that's all that matters.  The two coaches that worked with him the most are a husband and wife team.  They are so patient and really know how to explain things on a four year old's level.  Brian kept throwing underhand, so he got some personal tutoring until...

...he almost-kinda got it.  Started off overhand and quickly switched to underhand.  But when he did a happy jumpy dance after he threw it... who cares?

His first time batting (outside of the backyard - we're not THAT bad) was pretty funny, too.

The first swing he hit it in the wrong direction...

But he quickly figured that one out!

Ed and I stood proudly on the sidelines and did a lot of giggling.  It's going to be a lot of fun watching Brian laugh and learn through this T-Ball season.  The "Pirates" first game is this Saturday!!

Thank you, as always, for loving our family.

And thank you to everyone on my Chasing Rainbows Facebook Page for your sweet comments as I post photo memories of Gavin during his birthday month.  It's bringing me a lot of comfort to find the photos... remember the story... and post them publicly.  Your enthusiasm means a lot to me.

What To Get The Boy Who Has Given Us Everything...

Exactly one month from today - on September 29th - we will mark Gavin's sixth birthday.  The first birthday without him.  Ed and I are not looking forward to it.

Gavin was always very easy to please.  Put him in a room with something that plays music or lights up and he was happy.  Put him in a room with Brian, his beloved little brother?  He was even happier.  He loved Brian so much.

I want so badly to do something special - something permanent - to honor Gavin's birthday.  I had so many ideas swirling around in my head and I kept coming back to Brian.  I am hoping that Gavin is watching me from Heaven and feeling so pleased that his brother was the inspiration for this birthday project.  

None of us knew that the last time we would see Gavin smile... watch him play with toys in the playroom with Brian... hear him laugh... would be on the morning of April 10th, 2013.  It is a miracle that I decided to take Gavin to the emergency room that afternoon - not even thinking that we were dealing with anything close to a real emergency.  And it was a HUGE blessing that Miss Sara was with me so she could bring Brian into the waiting room.  We couldn't have known that this would be one of the most traumatic days of Brian's life.

Since that day, Brian has consistently reminded me of one very important fact:

"Mama, remember that little room in the hospital when Gavin got sick?  It didn't have enough toys."

Lucky for Brian, he had Miss Sara to occupy him.  But she was very stressed, too.  Brian has showed us the importance of toys to help children (and the adults that are with them) through very stressful times.  And that is when it came to me...

We will re-do the children's waiting room at Paoli Hospital for Gavin's birthday.  

I've been working on this behind the scenes for a little while now.  I went to the hospital to meet with the nurse manager in the E.R. to look at the room (and Brian was definitely right about the lack of toys!) - and I have been working with the hospital to be sure that the items I chose met with their safety and infectious disease protocols.  I am so excited to make this a reality.  

These are the items I have chosen...

Fleur Table With Four Attached Stools

Eight Piece Train Station

Magnetic Sea Life Table

Sea Life Pathfinder Panel

Springtime See Me Scene

See Me ABC's

I chose several of these items with Gavin and Brian in mind.  Like the Sea Life Table and Pathfinder Panels - we all know how much Gavin loved the ocean.  And the Springtime mirrors.  I chose them to honor the Spring day that we lost Gavin... and were introduced to Hope.  Brian loves mirrors - and I figured they would be great for infants and toddlers in the waiting room, too.

This is the hospital where Gavin was born and spent the first month of his life... the hospital where Brian was born and where he will meet his sister, Hope, this December.  If I can make this a true reality, there will be a permanent plaque on the wall saying that this children's waiting room was made possible by our family and the Chasing Rainbows community in memory of Gavin and in honor of his little brother, Brian.  Our hope is that as Brian gets older and understands more, he will realize that we heard him that day... that we cared about him that day... and we did something about it.  We hope that as he grows up, he will be proud that there is a lasting legacy that he helped inspire... and, because of that, other children will find a little joy in that Emergency Room because of him.

Ed and I have contributed $600 to the project.  $1,000 more will get us everything on my list.  I would love to invite you to this "birthday party" by contributing $1.00 - $5.00 - $10.00 - or more.  I chose to use "GoFundMe" in order to keep my PayPal account strictly dedicated to Gavin's Trust Project.  If you click the link below, you can see the fundraising page and watch the donations as they come in (hopefully!).  Or, you can click the badge with Gavin's photo at the top right side of this blog.  

UPDATE!!!  I never expected this, but through the middle of the night I not only met - but surpassed! - my $1,000 goal!!  I thought asking for $1,000 was asking for a lot.  I have decided to let the donations keep coming and use the money for MORE toys and the personalized plaque for the wall.  I couldn't do all of this without you!  Thank you to those who have donated already - who will donate - and even those who merely support us with your kind words and encouragement.  Each gift is SO generous!!  Thank you!!!

http://www.gofundme.com/HappyBirthdayGavin

Feel free to share the link!  

The Chasing Rainbows community has proven that tiny drops of water make a mighty ocean.  

Let's create an ocean for our little Superhero's birthday.

Back to the Emergency Room...

Today was a special day all around.

This morning, Brian and I went to my ultrasound.  He waited patiently (and unaware) in the waiting room while I got my glimpse of Hope.  Sleeping again this week, but growing so well!  Take a look!

In less than four days I will officially be in my second trimester.  So grateful.

After the appointment, Brian and I stopped for a special treat - cookies and milk at none other than "Hope's Cookies!"

On the way home, we stopped at a HUGE playground that was truly impossible to drive by and Brian had such a great time.

But the biggest event of the day was our trip back to the emergency room at Paoli Hospital.  I was very, very nervous and only hoped that our gratefulness to them shined through.  I have been so worried about all of them since April 10th.  Not a day has gone by that they haven't been on my mind.  Truly.

The meeting was, as I suspected, sacred.  I was grateful for their reception... their kindness... and their compassion.  I learned today that they called to the PICU at DuPont once a shift to check on Gavin the entire time he was there.  Ed and I will never forget our ER team and how they saved Gavin's life that day... so that we could spend the next four days with him before he died.

Below is my "speech" to the men and women who stood in that room with us and breathed life into Gavin on April 10th.

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

Thank you so much for meeting with us today.  We know how busy you are so the fact that you took the time to be here means a lot to us.  It really does.

I'm sure there is a frustration in treating someone in the ER and then, sometimes, never hearing the outcome.  So we are here today to tell you what happened after that helicopter flew away from this hospital with our son on April 10th.

The short version?  He died.  When he got to DuPont, he had two more cardiac arrests that evening.  He suffered profound brain damage that led to his brain death four days later on my birthday, April 14th.

The long version?  Well… first, I have a confession.  I stopped at the ER for reasons even I can't explain.  I'm overprotective, but bringing him to the ER for the symptoms he had was over the top even for me.  When I got him out of the car, I could hold him upright on my hip.  But, in a move that I'm embarrassed to admit… I changed his position to carry him in like a baby.  "If it looks more serious, perhaps they'll whisk us back and we'll get home faster," I thought.  I now know that every single decision I made that day was guided.  I kept both boys home from school because they had allergies.  I changed their acupuncture appointment to earlier which put us directly across the street from the pediatrician and this ER.  

Standing, pacing and needing to be close to Gavin in those terrible moments was every parent's nightmare.  But you did everything you could to talk to me - and to Ed when he arrived.  The chaplain seemed to know that Ed needed her comfort - and I needed my space.  I wanted to be right in there to hear and see everything that was going on medically.  I wanted cold, hard facts - and you provided that.

He made it to DuPont and we were able to spend four beautiful days loving on our first born son.  We laid with him during the day and slept with him at night.  Two days before he died, we brought his little four year old brother in for a special good bye which was beautifully done thanks to DuPont's Child Life department.  I was able to bathe him… we were able to hold him… and we were surrounded by doctors, nurses, and other staff from the hospital that know us and love him and we couldn't have been more supported through this process.  Doctors that have cared for him over the past five and a half years were able to come in to see him and say goodbye… one of his doctors even flew home early from a trip so she could see him one last time!  He was - and is - so loved.

On the morning of his death, my 43rd birthday, I woke up next to him with an overwhelming feeling.  I just knew I was pregnant.  After years of infertility, multiple miscarriages and a stillbirth… we had given up and given all of our baby things away.  It was hard to believe my intuition, but I just knew I was inexplicably pregnant.  And I felt from that day that this was a daughter… and that we would name her Hope.  Well… Hope Margaret will be making her debut, hopefully in this hospital where her two brothers were born, at Christmas time.

Ed and I made the easy decision to donate his organs.  Our child was non-verbal, but he managed to help people… to heal them even… as if that was his life's mission… and never needed to speak a word to do it.  It was only appropriate that we honor him by allowing him to continue that mission in death.  His kidneys were able to save the life of a 40 year old man… and his organ donation journey spread like wildfire on social media, prompting hundreds of people to email me telling me that they had become organ donors because of Gavin… telling me they have had conversations with their families about the unthinkable:  what would we do if we were faced with the choice of donating our own child's organs?  I am so, very proud of that… and we are overwhelmingly proud of Gavin who died a hero.  We waited overnight with his body until the surgeons were ready for the organ harvest.  It was a privilege for us to wait, knowing that someone on the other end would be receiving Gavin's organs and have a chance at life.  On the foot of his bed was a sign we had made that said:  "Superhero Gavin… Off to Save Lives"  We followed the surgeons as they wheeled him down the entire length of the PICU and couldn't fight back tears as the doctors, nurses, social workers, and other staff lined the hall and clapped.  They clapped for our son.  For his gift.

I tell you all of this because those four beautiful and heart-wrenching days wouldn't have been possible if it hadn't been for you.  With all we have gone through, I have to tell you… each of you have been on my mind.  A lot.  I have worried about you since that day.  I won't presume to even guess how you handle life and death moments with patients - especially children.  But I worried that in some way you carried a burden… maybe wondered if you did enough… or worried that you weren't fast enough… or were concerned that in some way we might have blamed you.  That is the main reason why this meeting was so important to me.  We need you to know how GRATEFUL we are to each and every one of you.  You kept him alive so he could get to his second home… DuPont.  You kept him alive so we could spend those days with him… allow his brother to say goodbye to him… allow us to process what was happening before we came home without him for the first time.  You kept him alive.

Gavin was always a very mysterious child.  He remains undiagnosed, despite getting every genetic test available… and his autopsy was inconclusive.  We will likely never know why this happened, but we believe it was set in motion before we stepped foot in this hospital and despite your best efforts, this was part of a plan that we may not understand.  That in itself confirms MY suspicions.  This mysterious little angel slipped onto Earth with a very serious mission… to change people.  Then he slipped back to Heaven just as mysteriously.  He really changed people - and he continues to even now.  I hope in some small way he will change you as medical professionals.  If you ever doubt… remember Gavin.  Remember our short time here and how deeply you impacted us - we wouldn't be back here if that weren't true.  Not every family will come back… you might not hear thanks… you may hear mostly complaints.  So, if you ever doubt… remember my words.  The outcome may not be what you train for, what you work hard for… but you are still helping people. You are privileged to stand with people through what may turn out to be the most profound journey of their lives... 

…and we thank you for standing with us.

Kate, Ed and Brian Leong

18 June, 2013