Please Don't Forget...

Want to know what gets me every single time?

Helicopters.

I'm not one to burst into tears - or even get choked up - in moments you'd probably expect me to. I can talk openly about Gavin - about his life and his death - without a single tremble in my voice. Sometimes I wonder if that's an issue - but most times I think it's just one of those things that don't need analysis. 

But, helicopters. They wreck me.

Yesterday, I found myself standing under the giant, intimidating blade of a medical evacuation helicopter. I could barely hold it together.

It was part of a community event we attended that allowed kids to climb into, tour and touch all different type of vehicles. Brian loved climbing into a bulldozer!

We were blissfully playing on the playground when I stopped breathing for a moment. A helicopter approaching. We soon realized it was landing on the field as part of the event, Brian wanted to go over to see it. I smiled and said "Let's go!" 

As we walked, I prayed. Prayed that I'd somehow hold it together. Prayed that if I didn't, that I would use it as a teachable moment. Prayed as I always do for the crew that has one of the hardest jobs there is.

As we walked across the field, my prayer was interrupted with a shriek. "Look! A butterfly!" Brian exclaimed. And off they went to chase it...

We made it to the helicopter and walked under the giant blade to get to the door. The crew guided Brian in so he could look around. 

I could barely see.

The tears were streaming down my face as I took this picture of one son as I mourned openly for his brother. These dang helicopters get me every single time. And I'll tell you why. It was a rare moment for me to not be by Gavin's side. But on April 10, 2013 - after the emergency room team brought him back from death - a helicopter arrived to rush him to another hospital an hours drive away. For me to hand him over to strangers - hoping he'd be alive when I saw him again - it was the hardest thing I had to do. I couldn't be there for him - and it still haunts me. So now, every time I see or hear a helicopter overhead - I flash back to that terrible moment on that awful day.

But you know what? I often think of Gavin's organs getting on a similar helicopter just five days later to rush to the airport to get to the destination of his recipient. A strangely comforting twist of fate.

Today my family and I were invited to an event hosted by the Gift of Life Donor Program. During this event, which celebrated and thanked their many volunteers, they honored me (meaning US - meaning YOU!) with the Fundraising Ambassador Award. (The family picture they took of us will be added later - Ed and Hope were there, too! And so was my Mom!)

If you remember, last November I held a 40 hour fundraiser for the Family House. Together with many of you, we raised $10,820... in forty hours! Here is what was said about me... about you... about us.

You don't have to still be here with us. 

You didn't have to donate to any of the fundraisers I've held in Gavin's memory.

You don't even have to comment on anything I write or do.

But please, if I can ask one thing...

Please don't forget my son.

Please remember Gavin David Leong.

And if you ever see a Medical helicopter flying overhead, say a prayer for that person, that crew, and everyone waiting for... needing... a safe landing.

How We Choose To Honor His Gift of Life...

It was last year on this day that we were officially told that our beloved first born son, Gavin, was going to die.  It was an awful day, indeed... but Ed and I wanted something good to come out of this - somehow, someway.  Before we were even approached about it, we decided that donating Gavin's organs was the best thing to do.  It was the hardest - yet the easiest decision we ever made for him.  The way I describe it to people is this:

Gavin was a helper and a healer his whole life.  To stop him from continuing to help others - for our own selfish reasons - would not honor his life at all.

As you know, I feel very strongly about organ donation and I am most proud that since Gavin's death, thousands of people have registered to be an organ donor... and many families have decided to start the "what if" conversation, which is so important.  Trust me when I tell you - having to make an organ donation decision for your child in a traumatic moment is not easy - and I think most say no in that moment because it's all too much to bear all at once.  Discussing it ahead of time is key.  Please have that conversation to honor Gavin on this one year anniversary... and if you aren't registered to be an organ donor - do it today.  You can click this link (in the United States) to find out how in your state.

I entered Brian's photo in a contest on the Donate Life Facebook page.  It was "Blue and Green Day" yesterday - a day to raise awareness for organ donation... honor donors like Gavin... and give hope to those waiting on the transplant list.  The photo with the most "likes" wins a $100 Amazon gift card.  But to me, it's not about the likes... or the prize.  I want two things to happen:

I want the photo and the message to be shared as much as possible to do what the contest intends - raise awareness, express gratitude and give hope.  If we win the $100, Ed and I will add another $100 and give the Amazon gift cards to the Gift of Life Family House in honor of Gavin's anniversary. 

(***NOTE - this already happened!  We won and we gave $200 to the Gift of Life Family House!***)

Click HERE to get to the photo and "like" it on their page.  And if you are inclined, share it everywhere!

Last year on this day... 

***

Five and a half years ago, a tiny precious boy was born to two broken people.  He came with no instructions and a body that often failed him, leaving us feeling determined, yet helpless at the same time.  

We embarked on the journey of a lifetime with this boy.  He healed our brokenness with his spirit, he inspired us with his courage and he brought hope to families and children and educators and doctors and therapists and more without ever uttering one word.

I never in a MILLION years thought I'd be writing this.

Today, Ed and I are holding Gavin's hand as he takes a new journey that doesn't include us.

Last night, Gavin suffered another seizure and his blood pressures have remained very high, unfortunately causing more damage to his brain.

Ed and I took turns sleeping with him through the night...

...and into this morning

Even though Gavin's body is still breathing on the ventilator, we knew that he was already gone.  Both of us pictured him bathed in light and watching us.  So we spent our time reassuring him that we would be okay.  That, because he inspired us so much with his brave and courageous journey, we would continue to do the same without him.  We promised him that we would take good care of his brother... and we told him how happy we were that he would now be with so many loved ones, including his twin, his sister Darcy and all of his other brothers and sisters.

It has been an unimaginable experience watching your child decline.  Gavin now shows signs of brain death, but they need to do an official exam in two stages that will end up taking all day.  Once they declare him "brain dead," we will remove him from life support and finally get to hold our little boy as we say goodbye.

I still can't believe I'm writing this.

Ed and I made what we felt was the very easy decision to donate Gavin's organs.  It should be an unbearable decision - but not for us.  Without ever uttering a single word, Gavin healed people.  He helped people.  We loved to call him our little "Buddha Baby" for how he changed people with his quiet presence.  Sharing parts of him is like spreading good karma.  And knowing that he can continue to help and heal people after his death is so, very comforting to us.

Unfortunately, we have to talk about things like this - and even plan for a funeral.  Ed and I have decided to cremate Gavin.  It rips my heart in two to think of leaving his body in a random cemetery.  I want him home with us - right next to his sister's urn.  (If you think it's messed up to read that last sentence - it's more messed up to type it)  We will also bring a small amount of his ashes to Ocean City, New Jersey at some point.  Gavin LOVED going to Ocean City and he LOVED going into the Ocean.  He was so brave when those waves would crash around him and would laugh and laugh and laugh.  It seems right to leave part of him in a place that brought him so much joy.  We have no idea when the funeral will be, but we welcome to the viewing and church anyone who was touched by Gavin's five years of life.

Brian will be here soon.  The "Child Life" team has a lot of activities lined up for Gavin and Brian to do together - including side by side brother hand prints.  They will help us explain to him that Gavin will soon die and will be in "Heaven's House" as he calls it.  Brian often talks about Heaven and has a happy, happy view of what it's like there.  I hope today's experience will help us bring closure to Brian... and help heal our hearts as well.

There will be no miracle today.

But there will be a miracle tomorrow.  Once Gavin is set free from his body he will be able to talk and run and play.  I am so, very happy for him.

We are very, very heartbroken.  But please be happy for Gavin.  Right now... he is free.  And he will truly never leave us.  And because of his legacy of courage and hope and bravery - he will live on forever.  I'll make sure of that.  He was the reason I chased those rainbows.  I never, ever gave up on him.

Without ever uttering a word, this little boy changed the world.

***

Ed and I promised Gavin on this very day last year that we would take good care of his brother (and sister to be at that time!).  That is exactly what I have done - and it has carried me through this year.  I have focused intently on parenting Brian - and now Hope - well.  Gavin would be very sad if I didn't put the same energies into his siblings that I put into him and Brian when he was alive.  One of the best ways I can honor Gavin's life is to parent his brother and sister well - and ensure that they are happy and healthy.  There were definitely days over this past year when I thought that hiding under my covers or running away (not literally) sounded good... but I would remember our promise.  It was those days that I would force myself to do something extra special with Brian - and it was like the antidote to my grief.

Life has to go on - even when it hurts.

Yesterday, Hope and I spent the morning at Brian's pre-school Easter Party!  We watched him hunt for eggs with his friends...

...decorate cupcakes and make a special Easter bookmark.

I even got to watch him in his music class - and now I know how he learned all the words to the song, "Counting Stars!"

Hope even got her photo taken with the Easter Bunny!

And today, Hope turns 19 weeks!  We can't miss her weekly photo shoot!!  Today she is donning her nautical "beach attire" in honor of her big brother, Gavin.

Enjoy your daily glimpse of Hope...

Countdown To One!!...

I have something very exciting to share with you!  The countdown to Hope's first birthday is on.  It's hard to believe that ten days from today is her big day!  I will be posting her monthly pictures all week on the Chasing Rainbows Facebook Page for the "Countdown to One."  Here are her one month...

...and two month photos.

For the past several weeks, I have been receiving lots of mail from readers hoping to send Hope a first birthday gift or card.  This does not surprise me at all because I have always said I have the most thoughtful readers on the internet.  It's so sweet - and humbling - that you're always thinking of our little family.  As a rule, we don't accept gifts - but we appreciate the gesture so much!!  I have been giving those requests a lot of thought, though, and I've come up with a genius plan!!!!!

We can ALL come together to celebrate Hope and, at the same time, SPREAD hope to many!!

I came up with "Give ONE to Celebrate ONE!"

You can read all the details - the hows and the whys and the wheres and the whens HERE on the YouCaring Page I set up.  But basically - here's the deal:

We lost Gavin.

In preparing to donate his organs - we realized we had a baby.  Hope in my belly, as I like to call those early days before we knew she was a she.

In the midst of our sorrow - we had hope.

I feel like sharing her since the day I announced it here has spread hope to many of you.

So, to celebrate the gift OF her life... the gift TO Brian and Ed and my lives... and the ultimate gift OF Gavin's life - we can "pay it forward" by spreading hope even further.

You are welcome to donate as much as you want, but I thought if many people came together from all over the world and each donated $1.00 (Well, Pay Pal takes 33 cents from each dollar for credit card fees - so a dollar donation would really come to 67 cents.  If you give $2.00 it will come down to $1.64, though!) - we would show just how far a dollar donation can go!  I've chosen five particular charities (five for a sentimental reason) - if we raise $1,000, it will all go to the first charity.  More than $1,000 - we go on to charity 2.  And so on.

I know it's right before the holidays, but most of us have $1.33 that we can spare.  It sounds like such a small amount - but when we all come together, it's amazing what can happen.

Thank you for loving our daughter during her first year.  As any proud Mom, I have smiled - beamed, really - with each and every comment whenever I post a photo of her.  She has been a joy this year - but the real joy has been watching how loving Brian has been to her.  How attached he has become - from day one.  Of everyone in this story - it was Brian who needed Hope the most.

He is very excited about this project - which will end on his 6th birthday, December 16th!!  Please share the YouCaring page with your friends and on social media.  You can copy and paste this link wherever you want:

https://www.youcaring.com/GiveONEtoCelebrateONE

 I hope we can make this a very hope-filled holiday for all that will benefit from our dollars!

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

Now.... on to the other business at hand.  Catching up!  Want to know how I spend most of my days?  Getting pretty much "nothing" done... but getting the most important things accomplished.  I may forget the practical stuff - like when I need to run to the grocery store or taking the wash out of the dryer or even - gulp - forgetting to send Brian in with his snack. (That was a sad day in our house.  I made up for it by sharing giant soft pretzels on the couch reading books together.) 

But I feel like I accomplish everything when I collapse into bed at night and reflect back on the day.  I may have read another three exciting chapters in a Magic Tree House book with Brian... or sat and played with Hope on the floor... or played yet another rousing game of "Star Wars guys that chase each other" with Brian (don't ask - I still am pretty unclear myself)... or patterned "Sooooo Big!" 40 times for a very disinterested Hope.  

The point is, nothing else really seems that important most days.  I just love to be with my kids.  And, lucky for me, they love to be with each other.

  I have fallen into a bad habit, though.  I have been snapping the majority of my photos with my iPhone.  Don't get me wrong - iPhones take nice pictures!  But my camera takes much nicer pics and I really should be using it more.  Sometimes when you have an iPhone picture printed to put in a frame, the quality doesn't look the same.  I also haven't been taking as many pictures as I used to - or videos!  At this moment, there are less photos and videos of Hope than there were of the boys when they were her age.  I'm sure you find that hard to believe - but it's true!!  I need to snap out of this!!

I will admit, it is easier to carry the phone around in my pocket so I'm ready to capture simple moments when they happen.  Like blanket forts in the kitchen...

Or Hope meeting Gavin's Christmas Elmo for the first time.

(She's in love)

A bedtime hug-fest.

Or Hope standing independently.  Brian has been obsessed with capturing Hope standing and actually quickly grabbed my phone to take this picture himself!!!  Not bad, eh?

The other day, Hope and I met Granny at our local Mall to have lunch and do a little shopping.  Hope was fashionably dressed for the occasion.  (Mommy - not so much.  Ha!)

(You can almost see her top tooth in this picture - it broke through this week!)

I found the perfect dress for Hope's first birthday pictures - and for her princess birthday party next Sunday!!  I wish I could show it to you - but I have to leave SOME things as a surprise.  I didn't buy this little hat...

...but I was tempted!!

I'm not a big fashion person - or even a lover of shopping - but I can spend HOURS looking at baby and kid clothes.  It's a sickness.  Hopefully one with no cure.

Don't forget the "Give One to Celebrate One" project!!  And thank you, as always, for caring about our little family.

(p.s. - please know that I NEVER ask anyone to fundraise on our behalf.  If anyone tells you they are raising money - by having a Tupperware Party or a makeup party or a lemonade stand - beware.  You will only hear from ME for any fundraising projects!)

In Lieu of Flowers - Part Two...

Today has been a very difficult day for me and for Ed.  This morning, after a fitful night, we met with the funeral director.  The only thing that made it easier is that we know this funeral director personally.  He handled the arrangements for my grandparents... my father... and our sweet daughter, Darcy.  It's comforting to know that someone we love is in charge of Gavin's body.

The funeral arrangements have been 100% confirmed.  Everything will take place at Epiphany of Our Lord Church in Plymouth Meeting, PA.  There will be two visitations - Monday night from 6-8pm and Tuesday morning from 9:30-11.  Then there will be a funeral mass and celebration of Gavin's incredible journey starting at 11am.  I have one small and seemingly silly request.  Please try not to wear any perfume or cologne or anything scented. I was always very protective of Gavin around strong scents as it often caused a skin flare up.  It's also dangerous for kids with respiratory issues.  I think if I smell things, my instinct will immediately go to protecting Gavin which will lead me to remember he's not there which might provoke a meltdown of epic proportions.  So... thanks for your understanding.

There are so many decisions to make and things to plan - it's truly overwhelming.  On one hand, staying busy is keeping me upright.  On the other hand, I'm stretched so thin and am afraid I'll forget important things.  I have been very grateful for the outpouring of support and generosity.  Late last night, while trying to read just some of the thousands upon thousands of messages and comments and emails, I happened to open one from Gene McGonagle - the owner of Ambler Flower Shop.  To honor my birthday request, he said, he wanted to pay it forward and donate all the flowers for the funeral.  He even drove to our house today to walk us through the planning.  We chose a lot of blue hydrangeas.  Gavin looked the most handsome in blue.  I also have offers from videographers that I need to comb through - I mentioned that I wanted to videotape everything and share it online one day.  One, because there are so many people that are invested in our son's story and it's only fitting that they be part of the final  celebration of his life.  But mainly my wish is to have something for Brian to see when he gets older.

I also started to see glimpses of some of the birthday projects people have been doing.  Teachers are having their entire class do projects in Gavin's name... others have written about small acts of kindness... everything I saw overwhelmed me with gratitude and lifted my spirits.  Gavin was such a special child with such a giving spirit - I know all of these acts are making him so proud right now.

Today I would like to tell you about the two other organizations that mean so much to us that we would love for you to consider donating to in honor of Gavin.  The first one is Gift of Life Family House.  But before I tell you about this organization - let me tell you some incredible news.

Gavin's kidneys - both of them - were transplanted into a 40 year old man last night.  Today, he's recovering nicely.  We are rejoicing with him and his family today.

If this man received his transplant in an area away from his home, the Gift of Life Family House would provide a "home away from home" for his family during and after his transplant.  It's similar to the Ronald McDonald house in that they charge a very small fee for a place to stay, meals, support and more.  Here's a short (and emotional!) video that can explain more about who they are and what they do... including offering home cooked meals by volunteers every night!  

From the Gift of Life website:

Gift of Life Family House serves as a "home away from home" for transplant patients and their families by providing temporary, affordable lodging, home-cooked meals and supportive services to those who travel to Philadelphia for transplant-related care.

Families staying at Gift of Life Family House are asked to pay a nominal guest fee of $40 per night per family in exchange for their room, meals, secure parking, van transportation to/from area hospitals, communal kitchen and living room areas. No family is turned away due to their inability to pay.

For online contributions:

http://www.giftoflifefamilyhouse.org/support/giveagift/

Or direct
 https://secure.acceptiva.com/?cst=841eb8

By Mail: 
Gift of Life Family House 401 Callowhill Street Philadelphia, PA 19123

Thank you again for selecting Gift of Life Family House as the beneficiary for Gavin’s memorial contributions.

Now I have something to confess.  Last night, when we got the news that Gavin's liver turned out to be unusable for transplant - I was completely shattered.  Like, collapsed to the floor in sobs kind of shattered.  I cried for the three year old little boy... I cried for the hope that I had... I cried for Gavin.  I really had to dig deep to change my focus.  And then... I opened an email titled "From a Transplant Mom" and read this: 

When my son was 9 months old, he received 5 organs- stomach, spleen, liver, pancreas and small bowel. So many nights I have dreamt what must have happened on the "other side" of our story. What that family must feel or even how the process works. I think being the mom of chronically ill child, the details and procedures become very important. Or it could simply be the control freak in me that longed to know. Your words gave me peace knowing that your son was carried into Glory a HERO. I could hear the applause as I read. We don't know our donor and we may never know whose precious child saved ours, but I felt so connected to you and your words. We are very involved in our local organ bank and transplant world here in Dallas, but I have never heard a donor family describe with such grace- "it was our privilege to wait" -wow. It's easy to be on my side and receive the call, but to know you are comforted by your giving just spoke to me. 

Your son and your decision did save someone's life. Maybe his organs didn't get transplanted, but someone standing in that hallway clapping for your hero will remember him and maybe they will have the opportunity to save a life, someone reading your blog who never thought of organ donation will sign their card and send it in. And a mom like me, who has finally found normal after fighting so hard for my baby will remember your incredible son and his gift and hug a little tighter and give thanks more often. 

Your sweet Gavin changed the world.

 It would mean the world to us if you would make a contribution (even five dollars!) to the Gift of Life Family House in Gavin's honor.  Down the road, we will get a letter of the total donations and all the donors names (without your donation amount!).  We will always have a special place in our heart for the Gift of Life program.

Whether you give or not, I hope everyone is inspired by our journey through the organ donation process.  It is my greatest wish that part of Gavin's legacy is helping to change people's perception of organ donation... opening people's eyes to the great need... and motivating them to become an organ donor and express those wishes to their loved ones.  You, too, can become a superhero like Gavin Leong.

Become an organ donor now by following this link:

http://www.donors1.org/registry/

The final organization we are asking for donations in lieu of flowers is one that is important to Gavin and me.

CaringBridge

When Gavin was two months old, he developed RSV and Botulism.  (To this day we don't know how he got Botulism)  In total between two hospitals, the two of us spent 10+ weeks side by side in a hospital room.  Two weeks in, a volunteer stopped by our room... lent me a laptop... and told me about CaringBridge.  It's a free site (run on donations) for people to create a personal page where they can update friends and family on their health issue.  I started writing one night - wrote every single day - came home with Gavin and kept writing - and, as you know, I never stopped.  CaringBridge is what accidentally made me a blogger. 

You can click here to get to my original CaringBridge site.  In those first months with Gavin - dealing with hearing aids and feeding tubes and night oxygen and nursing care and on and on... CaringBridge became my lifeline.  I would pour my heart out or I'd ask for advice or I'd celebrate one of Gavin's "smilestones" as I called them... and people would be there.  I barely left my house in those days, but because of CaringBridge - I never felt alone.  

Along the way, I became friendly with some of the staff and they always made me feel like Gavin was their special star on the site.  They even featured our story on their website...

We would be honored if you would consider donating to CaringBridge as a tribute to Gavin.  You can even go right to Gavin's CaringBridge page to make a "tribute donation" - and, again, no amount is too small.  Small acts of kindness often make the largest impact.  

Gavin, Mommy is so heartbroken.  This still doesn't seem real.  But I'm trying to do right by you, as always, and I will make sure that no one ever forgets you.

You have my word, Bugaboo.