Thanks for Giving...

Yesterday was a very special day for me and for my family. I was honored to be invited to the Gift of Life Donor Program in Philadelphia to speak at their annual employee "Thanks For Giving" luncheon.  The management serves a full Thanksgiving meal to all the staff to thank them for all that they give to the organization throughout the year... and they like to get a donor family and a recipient to speak. It's a great way for those who may not come in contact with families or patients to connect to the true purpose of their work. I was happy - albeit terrified - to talk about one of my favorite topics: Gavin.

I was lucky to have my Mom and my sister, Bean accompany me and Hope. Ed was working and I didn't want to take Brian out of school. The other speaker was a professor from Temple, Jay Bagley, who was accompanied by his wife. Jay received a kidney and heart valve transplant and is doing remarkably well. Also in the photo is Howard Nathan, President and CEO.

When we arrived at Gift of Life and I rounded the corner into the banquet room, my stomach flipped. There had to be a few hundred people there!! The nerves definitely kicked in. But, as many of you know, the chaos of a toddler who is curious about everything (especially a fancy dining table with lots of china, silver and crystal - eek!) doesn't really give you much time or energy to think, let alone focus on nerves.

Before I knew it, I was introduced. Here are some excerpts from my speech:

I started by thanking everyone who works for Gift of Life. "Whether you are an administrator, a receptionist, work directly with families or patients, drive for the family house or clean the bathrooms... each of you are responsible for helping to keep the lights on here. Which means that each of you are directly involved in helping patients and families receive the gift of life. That's an incredible thing. So, as a Mother of a donor... thank you."

"Gavin is continuing to change people. Help people. Heal people's hearts... including ours. Choosing to donate his organs was the easiest and most difficult decision we have ever made. Gavin was a helper and a healer his whole life. To selfishly keep him from continuing to help and heal would not have honored him in any way. We told ourselves early on that we wouldn't have any expectations when it came to the recipient of Gavin's two kidneys. I have a personal philosophy about gift giving of any kind. If you're giving a gift, it should be because you want to give the gift. If you give a gift laden with expectations - whether it's a thank you note, recognition, an equal gift in return... you will almost always be disappointed. So instead, we turned our attention to donor awareness and I continue to tell Gavin's story. Every time I get an email or someone tells me that they became an organ donor because of Gavin's story - or that they had the conversation about "what if something happened to one of our children" with their spouse - every SINGLE time I feel like Gavin saved another life. This little boy - who never uttered a word! He continues to help and heal."

"Gavin was officially pronounced dead on April 14, 2013. My 43rd birthday. We were told that we'd have to wait for the transplant teams to be in place which ended up being the next afternoon. I sincerely mean this - it was truly a privilege for us to wait with our son. Ed and I could just picture a family getting the news that an organ was found. It brought us great joy in a very dark time."

"When the O.R. team came for Gavin, I walked out into the hallway, closed the door and pointed to pictures we had taped to his hospital room door before I let them in. 

'This is Gavin,' I told them as I pointed to a picture of him standing tall and proud. 'He is our son. He just started to walk, you know. That wasn't supposed to happen. 

And this is his brother, Brian, who loves him so much.

Please take good care of him and respect him.'

The group of them respectfully walked into our room and began to prepare him to go. Next thing I knew, they were wheeling Gavin out of the room. We walked behind slowly and soon heard a slow clap. And as we continued down the hallway we saw doctors... nurses... respiratory therapists... aides... cleaners... all lined up. They were clapping for our superhero and for the gift they knew he was about to give. We fastened this exact sign onto the foot of his bed - "Superhero Gavin - Off to Save Lives."

Because you see, Gavin isn't a hero because he's a donor. Heroic describes his whole journey up to that moment. And heroic describes his legacy that continues to this day. Thank you for letting me share our story."

It's always hard to tell this story - but it is so important. I will always be Gavin's voice and I don't take that lightly.

Before I got up to speak, I was told that the actual transplant coordinators that were with us over those four days in the hospital were in the room. As part of my speech, I said this:

"I was told that the transplant coordinators that helped us with Gavin are here in this room. I can honestly tell you that I couldn't pick you out of a lineup. Ed and I were talking just last night and we couldn't remember if you were men, women... anything. But to be honest? That is how it should be. The more you work to generate awareness about organ donation... and the more we share our story... then these transplant experiences will be seamless. Just a small part of the story during those difficult days."

I was able to talk to the three women (there was also another woman and one man that weren't there) and they took what I said as a huge compliment (whew!) because that's what they hope for. We chatted for a bit and they filled in the missing parts of my memory. I was so grateful to see them, which of course brought back the memories of our time with them. And I will always be grateful for the hours and hours they sat over days and days - combing through every inch of Gavin's mountain of medical records. The process is so careful and thorough, ensuring that a transplant recipient gets a healthy organ. It was really a profound experience getting to see them again.

In a perfect world, organ donation is a given. Everyone's on board and there are no last minute decisions on the worst day of someone's life. That is the worst time to expect to make a rational decision. In a perfect world, conversations happen early and often - wishes are made known on licenses and to loved ones. In a perfect world, myths about organ donation are non-existent. It's a good thing I am an idealist, because I believe that we can one day attain this lofty goal... one person at a time.

There are a few small way that you can help me with my lofty goal! If you aren't an organ donor, please consider it. You can google "How to become an organ donor" with your state or country and you'll find instructions wherever you are. Many people think they are not qualified to be an organ donor - but most of them are misinformed. There are lots of ways to give life. Giving tissue means that your corneas can help someone see... or your skin can help someone heal... or your bone and connective tissue can help someone walk... and your heart valves can help keep people alive - from infants to the elderly. Did you know that you can still have an open casket no matter what organs are donated? And did you know that you can die at home and still be a donor of tissue and eyes? Did you know that cancer does not necessarily mean you can't be a donor? And that it doesn't matter how young or how old you are! 

Also, please have the hard conversation now if you have children. It is a hard conversation - but believe me when I tell you that this is not something you want to consider for the first time on a tragic day. And, as we all know, death waits for no one. One word of advice - this is not something that anyone can be pressured into. It should never turn into an argument. Plant a seed and you can revisit it at a later time if you and your spouse vehemently disagree. But as a Mom of a child who died... believe me when I tell you this... organ donation has been a great comfort to me. I don't need to hear from or know anything about the recipient and it is still a comfort to know that my son is still saving lives.

There are two seemingly unrelated - but very related! - ways you can help me! This Tuesday, December 1st, is "Giving Tuesday" - a global day dedicated to giving back. A day that  charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.

I have decided to take a 40 hour fundraising challenge to raise money for the Gift of Life Family House! Why 40 hours? Because 40 is the amount of dollars it costs for a family to spend the night at the Family House. When transplant patients and families come to Philadelphia to seek medical treatment, the Gift of Life Family House is like a "home away from home" for them. They can stay at the House for just $40 per night and sleep comfortably in a beautiful room - one of which is named after Gavin!

They also get home cooked meals, laundry facilities, a play room for children, support services and so much more. From the Gift of Life Family House mission statement:

"Endless hours, false hopes and the patience to persist are just some of the trials faced when transplant is the only answer to a life-threatening diagnosis. Many challenges are encountered by transplant families - and homelessness should not be one of them."

You can visit the page I set up on "Crowdrise" HERE. I will be posting reminders leading up to Tuesday when the fundraiser starts at 8am. It will end on Wednesday at 11:59pm. ANY amount you give can help a family who is waiting for their second chance. $2.00 - $5.00 - $10.00 - you can even "adopt" a family for a one night stay and give $40.00. I would love to be the top fundraiser as a way to celebrate Gavin... who always celebrated life.

I told you some time ago that if any paid opportunities came my way and they could help me make money for any of my charities - I would selectively accept. Well - I have accepted a great opportunity that will allow me to jump start my 40 hour fundraiser with a generous donation! And... I will be able to give away a prize to TWO of you!

I will be working with K-Mart on two occasions to help them bring back the "Blue Light Special!" For those of you too young to remember the Blue Light Special - each day they will announce - on their website or on their app - an item that is deeply discounted for a limited time. I just checked today's and it was for a toy that was half off! I will be sharing my experiences live from inside a local store this Friday, November 27th, on Periscope - and will share it to Instagram Facebook and Twitter. One of you watching will win a hundred dollar gift card! I will also be back on December 20th when I will be giving away another hundred dollar gift card! (I'll share those details as it gets closer) If you don't have Periscope, you can download it to your phone and follow me at @chasingrainbows. You can follow me on Twitter @kateleong. You can follow me on Instagram @kategavinsmom and if you're not following along on the Chasing Rainbows Facebook page, you're missing out!

 I literally have one lonely follower on Periscope because I never use it. But if you follow me, I will post my first live video on Thanksgiving Day with the family. You'll be alerted when I broadcast through the app or on the Chasing Rainbows Facebook page. During this broadcast on Thanksgiving day, I will reveal the beautiful (and intense!) photo that my friend, Lauren, took of ALL of our children. That means I have Gavin, Brian, Darcy and Hope all together in one photo. I hope you tune in to see it. (I will be sharing ALL the photos soon on my blog, don't worry)

Thank you to the Gift of Life Donor Program and the Gift of Life Family House for inviting me yesterday... and for always making our family feel like, well, family.

And thank you to all of you for your support as I aim to support the charities that mean so much to our family. Gavin's legacy will never die!!

He Gave It Back Tenfold...

Lately I have been deep in planning mode for "Gavin's Playground Project."  It's coming along nicely - at least I hope!!  I think I mentioned that I've never done this before... so I hope it turns out well!  One thing that is DEFINITELY going well - the donations that have been sent straight to the hospital.  As of today, duPont has received $7,280 for the "Abilities Playground" from 43 donors!!  I'm so grateful.

But sometimes... it all needs to take a back seat.  Like today!  Finally we had a day of "spring like" weather.  Brian and I decided it was required of us to be outside.  Hope enjoyed the fresh air in my arms and fell fast asleep while Brian played with every single toy he could get his hands on.  He biked.  He golfed.  He sidewalk chalked.  He blew bubbles.  I'm sure tomorrow we will get word that a blizzard is on its way - so we soaked up the sunshine as long as we could.

Earlier, when Brian was in school, I had a visitor!!  I have written many times over the years about Dr. Coralee Thompson.  She was the nutrition expert that helped me tremendously with Gavin.  You can read about our history - and how she helped us in THIS post.  She was in town visiting her children and wanted to come by to visit.  I should mention - all of our interactions have been phone consults or through email, so this was the first time we have actually met each other!!  It certainly didn't feel that way.  I felt like I opened my door to a long time friend today.  She is a very special part of our family.  I was thrilled to introduce her to Hope!  Dr. Thompson generously donated a nutrition consult and a copy of her book, Healthy Brains, Healthy Children, for our silent auction!

I'm glad that I have this fundraiser to keep me busy.  That was my intention... but I didn't know at the time how much it would help me.  To stay busy, I mean.  This impending anniversary is affecting me much more than I expected.  I just can't believe it's almost a year.

This morning I decided to look back to what was happening on this day last year.  I was shocked when I read my entry.  The title of the entry is, Letters From Heaven.  You should probably just go ahead and read it.  Looking back, I almost wonder if I was somehow being prepared.  There really are no coincidences.  

I miss Gavin so much.  I know he's watching all that we do.  The one thing that keeps me upright and moving along is knowing that.  I want to act in a way that honors his life - and part of that is being the best Mom I can be to his little brother and sister.  He would not be happy if I messed that up.  And I want to honor his life by honoring those that helped him.  That is why giving back to the teachers and therapist through Gavin's Trust Project means so much.  And why giving back to duPont through donations to Child Life and now this Playground Project means so much.  I just want to make him proud... and continue his legacy of helping and healing people.  Because make no mistake... as much help and healing that Gavin received - he gave it back tenfold.

****************************

Gavin's Playground Project

To purchase tickets (tickets must be purchased in advance) click HERE.

Everyone can register for the silent auction (whether you purchased a ticket or not) using the same link above.

To donate directly to the hospital, click HERE and be sure to designate "Abilities Playground" in the Donor Designation section.

Hotel information!!

For those coming in from out of town that need hotel rooms, I have two hotels that have blocked rooms for April 4th and 5th.

The Homewood Suites in Audubon, PA has one and two bedroom suites available for the flat rate of $109.  They created a personalized site just for guests of the event.  You can reserve your room right on this website - HERE!  They are about ten minutes from the Expo Center, where the event is being held, and offer shuttle service.

The Radisson in King of Prussia has also blocked rooms for us on the 4th and 5th.  They are about ten minutes in the other direction.  Their rate is also $109 and you can call the hotel directly at 610-354-8118 to make reservations until the cut off, which is March 25th.  Be sure to mention that you are reserving a room under the "Gavin's Playground Project" block.  The Radisson is also offering all of our guests a 20% food discount redeemable at any of their seven restaurants!

I might have a third hotel to choose from over the next couple days.  I will be sure to let you know.

Thank you to all that are coming to the event... or planning to come!  It means so much to me.

Save The Date for Gavin's Playground Project!...

I'm so excited to announce that "Gavin's Playground Project" is set for April 5, 2014!  Save the date!!  Hope and I have been a "two woman show" from the kitchen while Brian is at school - cold calling companies, going on meetings, and basically making magic happen.  I'm telling you - this is going to be an awesome night.

Wondering what "Gavin's Playground Project" is all about?  You can read about my vision in this post.  But basically - here's the scoop:

The entire event is our way of marking the one year anniversary of Gavin's death - our way of honoring his life and his legacy.

Gavin spent a lot of time at Nemours A.I. DuPont Hospital for Children.

They never had a playground that was accessible for kids like Gavin.

I should have advocated for it harder when he was alive.  I did ask (and got) a wheelchair swing on the playground, but never pushed for more.

Gavin died at DuPont.

Now that he's gone, I am determined to advocate for all the children left behind who can only watch while more able bodied children play on the current playground.

That has to change.  And we're going to make it happen.

In an effort to "take back April" - I decided to host a fundraiser called "Gavin's Playground Project."  All the proceeds will go to DuPont for their "Abilities Playground" fund.  It's going to be such a fun night and I hope you can join us!  I know it will be fun for me to see family and friends... and to put faces with the names I see on my pages every day online!

Here are the details so far:

Date - April 5, 2014

Place - Greater Philadelphia Expo Center in Oaks, PA 

Hall E - across from Gavin and Brian's favorite place, Arnold's Family Fun Center!

Price - $25.00 per person for "early bird tickets" and $50.00 per person if you purchase your ticket after March 29th.

There will be a website for ticket purchase and event information.  I am hoping it will be up and running so tickets can go on sale by next week.  I will give a few days notice both here and on my Facebook Page before tickets go on sale.

** Please note that there will be NO tickets sold at the door. Everyone must buy their ticket online when it opens. For those that were hoping to buy tickets to set aside for nurses or teachers or "there in spirit" tickets - please make a donation straight to the hospital instead.  Only those that are going to attend the event should buy a ticket or else it will get very confusing. **

Time - Doors will open at 5:30 for people to come in, register, find your assigned table, look at some of the silent auction and raffle items and get a drink from the cash bar. The silent auction will be going on at this time and through dinner.  The dinner buffet will begin at 6pm.  

Entertainment - The fun really begins at 8pm when Bill McMenamin from "McM Entertainment" begins a super fun and ultra competitive trivia event.  Each table of ten is a team and only one table will be given the collective title of "Smarty Pants."  He will also be playing some great tunes all evening.

Lodging - There are several hotels in the area for those coming from out of town and I am currently working on getting rooms blocked and discounted rates.  One hotel will be a "suite hotel" for those who want to share the cost.  Keep watching my blog for that information.

The theme of the evening is - open your wallets!  There will be plenty of opportunities, big and small, to give to the playground project - and every dollar is gratefully accepted towards our goal. There is a dress code - and it is come as you are!  If you want a night out and feel like getting dressed up - do it!!  If you want to come in jeans because you dress up every day - do it!!  I want everyone to feel happy that night.  I will likely be in one of the two pairs of maternity pants that I wear over and over and over... let's be honest.  

This will be such a unique night.  If you think you've been to a silent auction... you haven't seen anything like we're planning!  It will be a very unique, very fun and extremely interactive experience.  Here are just some of the items that will be available for bidding - and I'm still on the hunt for more:

A "sit in" with a very popular morning radio show in Philadelphia.

An overnight to the "Great Wolf Lodge" in the Poconos.

A Disney World Vacation

A consultation with Gavin's nutritionist, Coralee Thompson

A trip to the 2015 Grammy Awards

A butcher block set of Cutco Knives

A free visit with Dr. Trish, Gavin's incredible energy healer.

And so, so much more - local, national and international gifts, events and experiences to bid on.

Sponsorships of all kinds - personal and corporate - are still available to make this night a huge success.  See THIS post for the details at the bottom.

 If you know you can't make the party and would like to donate directly to the hospital, please click HERE to get to their secure donation page.  Under "donor designation" - select "abilities playground."  You can make a designation note in memory of Gavin if you wish.  The donation page only has options from $25.00 and up.  If you would like to give less (any amount is generous - and every dollar counts!!) - you can click the donate button down the right side of my blog under "Gavin's Trust Project" and mark that it is for the playground.  That money goes to me and I'll be sure to redirect it to the hospital.  As of today, the hospital has received a thousand dollars from my readers for this playground.  That's incredible.

Prefer to mail your donation?  Write "Abilities Playground" in the memo of your check and mail to:

Joy Zernhelt

Development Coordinator

Nemours Fund for Children's Health

Shands House

1600 Rockland Road

Wilmington, DE  19803

Thank you, as always, for helping me make the impossible... possible.

Energy Bars...

Hope still hates her car seat.  I think it will soon be time to give in and try a new one.  Maybe she'll hate the new one, too, but we won't know until we try.  It's painful when I'm the only adult in the car and can't climb back to sit next to her - to stroke her cheek or offer a binky or make her smile.  

This morning I thought we had turned a corner.  I put her in her seat to take Brian to school and, what?!?  She smiled!!  Then - silence.  The entire way there.  Brian and I noticed patches of grass peeking through the snow as we drove through the park and I said, "Spring is on the way!" and I felt hopeful.  Maybe she grew out of her utter disdain for this car seat.

Not so much.

On the way home, as I listened to her scream and scream and scream... I thought of Gavin.  

Gavin had such severe and painful reflux.  He also had low tone.  Very low tone.  As an infant, he constantly threw up in the car...which was painful.  But then, probably because of his tone, he would gag and choke.  Each time he did this, I would have to jump out of the car - open his door - pray he wasn't blue (sometimes he was blue) - and suction out his mouth.  I was an expert at ripping him out of his car seat at warp speed - even on the side of the road.  Often on the side of the road.  A 15 minute trip would take me 30 minutes.  If I had to take him for an appointment at the hospital an hour away...I would need to leave two hours ahead.  Sometimes it would happen as I was backing out of the driveway.  It was bad.  Every single time we got in the car it was bad.

But one thing I learned during that time?  That Gavin was very sensitive to my energy.  If I panicked - his stress would escalate.  I remembered this every time he had a painful procedure... every time he was working hard in therapy... every time he was hurt.  If I kept my energy bars even - in the middle - he would feel it.  I would always be in his face so he could look into my eyes and sense that I was calm.  And that it would be okay.

This lesson served me well the day Brian came to say goodbye to Gavin.  I felt strongly in my heart that Brian needed to have his own experience that day - the last day he would ever see his big brother.  I didn't want him to sense our fear - our devastation.  I didn't want us to push our agenda on his goodbye or make him do anything he didn't want to.  And I certainly didn't want to make him feel like he had to care for us or tend to our emotions.  It was not easy.

So I try to remember all of this when she is crying in the car seat?  It hurts my heart... yes.  And sometimes, I feel those energy bars creeping up to high when she screams. But I will myself to keep calm... and keep those energy bars right smack in the middle.

**********

I had a conference with Brian's teacher this afternoon!  She had handwriting and other "scored" papers to show me from the beginning of the year to now - and Brian has made so much progress in every area.  Writing his name, counting to high numbers, recognizing different shapes and listening.  I'm very proud of how he's blossomed socially.  He started the year pretty shy and his teacher remarked that he would get teary when he couldn't express what he was feeling (like frustration that someone was playing with a toy he wanted).  He's come a long way in that area.  I asked her if he ever mentioned Gavin as I was a little nervous that he'd chat about his brother dying and freak some of the other kids out.  She said that he's mentioned Gavin's name, but only that.  Then she told me something so sweet.  She thought it was around Christmas time when they might have been talking about the baby Jesus.  Brian blurted out...

Gavin died and went to Heaven - and then my Mommy got Hope.

Yep.  That is pretty accurate.

******

I got an update from the hospital this morning about the donations they received over the weekend!!  They had 13 donations in Gavin's memory towards the Abilities Playground - totaling $495.00!!  That's a great start and I am so grateful!  

They also were able to fix the page so our international friends can donate!  

I've been working hard (when I can!) on the fundraiser!  I really think it's going to be a GREAT evening.  I can't wait!

Tales From The Piggy Bank...

Brian has a piggy bank.  A green "Angry Birds" piggy, of course.  Inside he has had a ten dollar bill. A gift from someone for one occasion or another.  He pulled it out today and asked if he could use it for something, so I said yes!  I told him I'd take him to "5 Below" (where everything is literally $5.00 and below) and he could pick out two things... but HE would have to buy them at the register.  He was so excited.

We walked the aisles - over and over and over.  It's hard to be a kid and have so much colorful input coming at you - everything looked perfect and he had such a hard time choosing.

After much thought, he settled on the "Gyro Bowl" - a cool "As Seen on TV" item... and "fake legos."

We walked up to the register to stand in line and the nerves set in a little bit, but he pulled it together and walked right up to the counter and plopped both items and the ten dollar bill in front of the clerk. Note to self: teach him purchasing etiquette.  

When she handed him his bag he said thank you, unprompted!  (Proud Mommy moment)  It seemed silly, but I got a little choked up as I watched him walk in front of me holding his bag so proudly.  My little boy is getting so grown up.

We stopped in to Miss Silvia's new salon for a hair cut (his best one yet!!)...

...before we rushed home to play with the "fake legos."  Note to self:  Make sure he never knows the difference between "fake legos" and the expensive real legos.  I impressed Brian by building a canon - and we both tried swinging the gyro bowl that was filled with cheerios to see if any fell out.  (They did which is probably why this "As Seen On TV" item is now in "5 Below.")

Hope was super cooperative during all of this!  She slept through the entire afternoon, giving me a block of alone time with Brian.  Hope has been blessing us with much longer stretches of sleep these days.  One evening she slept for almost seven hours!!  I kept thinking I should wake her up to feed her - but, seriously, look at how she has filled out this week...

I think it was fine to let her sleep!  

I can't believe that she is TWELVE weeks today.  Here are some of her photos from today...

  She smiles all the time, still nurses really well and coos a lot. 

 

The only struggle is her car seat.  She hates being in her car seat.  We just made some adjustments to it to see if that helps, but if not - I just bought a new seat to try.  Actually, the new seat is three pounds lighter.  Doesn't sound like much, but I'm sure it will make a big difference!  I can't get over how heavy the car seat is with her in it!  By the time she's out of it, I'll have some body builder's arms!!

I've been working hard on the big fundraiser over the last few days.  Well - let me re-phrase that.  I've been working hard sporadically during Hope's naps while Brian is at school or in the evening when they are asleep - basically, when I can.  Things are starting to fall into place, which makes me so happy. I can't believe this is really happening.  

I wanted to announce that the FIVE $500 event sponsorships that get the voice over commercial at the beginning and end of the evening are all spoken for.  However, there are still $500 event sponsorships available - and those will get advertisement on my blog and facebook page (both of which get a lot of traffic).  And there are still plenty of other sponsorships available - the ones I listed in THIS post... or you can make up your own sponsorship!  

Once I am ready to open the ticket sales, I will make sure to give plenty of notice so no one misses out. I am thinking I will schedule it ahead of time for a Saturday when most people are not working.  

For those of you who can't make it to the party but would still like to donate - I have information for you!!  The hospital has set up a spot online for this project.  If you click THIS link, it will bring you to the donation page.  Under the Donor Designation section, click the third option down:  Ability Playground.  You can write in the box at the bottom that this is in memory of Gavin Leong.  I will be getting updated every few days (starting Monday!) on the donation totals.  I can't wait!

It was brought to my attention that the starting donation on their site is $25.00.  If you would prefer to give less than that, you can give through "Gavin's Trust Project" online by clicking Donate Now and designating it specifically for the playground project.

Speaking of the playground project - I named the event!!

Gavin's Playground Project!!  Hope you can make it on April 5th!  And if you can't be with us, please say a prayer that it is a huge success.  Every child deserves to feel like a superhero... and a place to play that won't hold them back from being just that.

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.

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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. 

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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!