Thursday, January 9, 2014

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...  

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.


I was 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:

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? free polls 


  1. In the end, even if it wasn't what you wanted, hoped for or expected, a wonderful thing has been done. Another child will have a welcoming place to be. That is invaluable. Hold on to that.

  2. I think it would be an amazing tribute if you were to split the remaining funds between the three options you narrowed it down to.......that way all three would participate in celebrating Gavin's 6th birthday.

    1. I agree with this! When I voted, the votes were pretty close... so let's just split it! :)

  3. Kate,

    It is hard when life turns out differently than we'd imagined, when the way we envision something doesn't quite manifest itself the way we'd expected or hoped...add our children to that mix and it makes for even more disappointment...

    It is my hope that you will not allow this deviation to ruin something so beautiful, for I have found that there is also beauty in that which is not as we'd wanted, it, that, too, just looks a little different... Your gifts in honor of Gavin are a beautiful tribute to him, and gifts that will keep on giving, even if mirrors (which can always be moved...) are a too high for their intended purpose... Yours in healing...

  4. I like the idea of splitting it between the three as well.

  5. Its quite a bit of money. Why not split it up between the three. Even though it wasn't what you planned, you still did a wonderful thing. Many children will benefit from it.

  6. "That means that $3,696.30 is what is left over." Wow! That number is surely easy to divide by three! I vote for Sarah R's suggestion if giving each place a very nice sized donation.

  7. I will go with what everyone said and agree with splitting it.

  8. Your gift and those that joined in with you (i'm new to your page but I would have LOVED to join in on this) are so wonderful. The gift you have given is perfect. I know with my son nothing ever goes as planned. The dr's get our hopes up and of course life deals us what it wants without care or worry of our wishes. In a way this birthday present is such an example of what Gavin's life was. It may not have turned out as perfectly as you planned but it was perfectly beautiful all the same. It will have a lasting impression on all who experience it.

  9. The least they can do for you is take down the mirrors , patch up the holes and have you and Brian decide where it goes instead..and maybe to let you to handpaint a few more seaweeds with Brian and Hopes handprints in them(you both love painting, Gavin would enjoy watching you)....I wish we could have a say in this, such as email the person who was supposed to work with you, so that even if you didn't get to install the parts in whole, to urge them to at least accommodate you in some special way to help with the healing process. Reading this post makes me sad and this gesture, no matter what the cost was priceless because it was for Gavin. Its sad they took advantage of nice people and I hope that they will find a way to have you still help even though it's past the grand finale.

  10. Dear Kate,

    I am so sorry that it was harder on you than it needed to be. I can't believe they weren't willing to work with you better on it. You were in charge of a project that would make their hospital better! Even though it didn't work out the way that you had planned, I hope that you feel accomplished. Your words inspire your readers and helped you to raise a considerable amount of money to go to a good cause. I hope that in time you would consider doing another project when there is less stress in your life. Thanks for inspiring me.

  11. Split it!

    And as for the mirrors-- I can picture a daddy with a distressed toddler in his arms/on his shoulders making funny faces together while they wait for news about mommy or a sibling. It's not perfect but it's a HUGE improvement and will make a HUGE difference!

  12. Im speechless. Th cruelty that was shown to you is out of this world. I hope someone who works at the hospital reads this and someone is held responsible. Unbelievable.

  13. I'm sorry that you weren't able to help with the assembly of the room as you had planned. That was obviously a big disappointment. I agree with others, though, that the room looks great! It looks like it went from one toy before, to a wide selection of fun toys after! I love the suggestion made by another of someone holding a young child and looking in the fish mirrors together. This helps the room be for the waiting adults as well as the children. Perhaps Gavin was there during the assembly, quietly whispering his input. I'm sure he knows of all your work and effort to make this room a success. The fun toys and decor will certainly be a bright spot for kids in that room, who will very much need that bit of happiness you brought to them. Good work, and happy (late) birthday, Gavin!

  14. The room looks beautiful and your heart was in the right place. In the end, you cannot control everything and the children will still love the room. You did it! You made that room into something amazing! Be proud.

    I say split the money three ways too, however if you truly want to bless on group, may I suggest Child Life? We spend a lot of time in hospitals and Child Life are the folks that work so hard to brighten days and encourage fun under hard circumstances. In our hospital, Child Life struggles to maintain the toys and games because they "disappear" every single week and they have to stretch their budgets to replace things that are accidentally taken home, thrown away or tangled in bedsheets and sent down to laundry. Toys are expensive, as you know, and they rely almost fully on donations!

    Again, the room looks great. Really, it does.

  15. I voted for Gavin's Trust, as I think that would give you the most control over the money left.

    However, the people that complained? I mean, really? Projects rarely, if ever, happen on time. I do wish the hospital had called you but if I couldn't happen around his birthday, then Christmas seems the next best time!

    The room is ADORABLE and, like someone else said, the fact that the mirrors are higher up is good to keep adults too!

  16. Trust me, you are the ONLY one who sees any flaws with that room. It is just lovely. I am very sorry that what you were trying to do for the hospital was treated disrespectfully by some unnamed people. You did (we did) something good. I am happy that I donated something towards this project. Trust me, you are the ONLY one who sees any flaws. It is wonderful.

    PS. I voted for Gavin's Trust Project because I like the idea of giving small amounts to help specific needs. I love the idea of helping special needs kids get equipment that they wouldn't otherwise have access to. They are all good charities. You can't go wrong.

  17. I believe everything happens for a's possible that room provided much needed comfort to some child or many before the date you had planned. You did a wonderful thing and Gavin's memory has been honored in that space.

  18. (((((hugs)))) It's ok, give yourself a break.

  19. It didn't meet your expectations despite your hardwork, efforts and coordination. That stinks. But, the expectations of children dragged into the emergency room because a family member was sick? I'm sure it was more distracting and less upsetting because of your wonderful changes with Brian. I guess it's kind of like organ donation (though far less important). You do what you can and let go. Gavin's not disappointed because the fish are too high. I'm sure that's true. So much of life is reconciling our expectations with reality. You did great and the children experiencing these wonderful additions are proof. I totally get how being shorted in so many ways made you sad. But, the children benefitting think it's awesome. Yay, gavin, Brian and you for improving this dreary room your own child experienced on a terrible day. It's SO much better! Love you, Jenny


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