Footprints...

"My precious child, I love you and will never leave you... never, ever, during your trials and testings. When you saw only one set of footprints, it was then that I carried you."

I have always loved "Footprints in the Sand." It was something that was always hanging somewhere in our home growing up and I could probably recite it by heart. (But please don't test me.) The poem took on a deeper meaning for me after Gavin died. In 2010, I lost Darcy. In 2011, I lost my Father. Then in 2013 I inexplicably lost Gavin - my firstborn - my entire world. You better believe I had some words with God along the lines of WHERE HAVE YOU BEEN??? Who could blame me? But in my heart I know that He was carrying me. Carrying ALL of us... all along.

We weren't quite finished celebrating the day we welcomed Gavin into the world nine years ago. It has become our tradition to serve as "Home Cook Heroes" at the Gift of Life Family House as a way to honor Gavin's life - and his gift of organ donation when he died. The guests of the Family House are either organ transplant patients from all over the world who are getting treatment at a nearby hospital... or they are families and caregivers of patients who are inpatient at a local hospital.

Thanks to our dear friend, Claire Guarino, who helped us prepare a delicious dinner for close to fifty guests. Claire is the owner of a local business in Paoli, PA called (ironically) "Home Cooked." We hit it off when I walked in as a customer looking for a ready-made, home cooked meal to pop in the oven and look like a rock star chef by dinner time. We've been friends ever since. Each year, Claire graciously provides the meal that we then help prepare and serve to the guests. 

This year, we brought a big birthday cake for Gavin.

Everyone gets involved in the prep! 

Well, except Hope who basically just wanted to eat or lick everything so we kept her occupied elsewhere!

Claire's son, Ian, (who knows his way around a kitchen better than me!) is good buddies with Brian so they were excited to see each other. The kids had a great time. 

Each year I look forward to this event. I love the opportunity to serve the people at Gift of Life - whether they are transplant patients, caregivers or the staff. We have been touched by all. Each year I manage to have at least one emotional conversation with a transplant patient or family member. I am always honored to share Gavin's story and assure them - really try to assure them - that donating his organs brought me great comfort. I can imagine how hard it might be to understand that - especially if you've received or are waiting for a transplant and know that to live, someone must die. But there had to be something good that came from our tragedy. 

It was a successful evening - and a delicious meal...

...and a fitting tribute to our little superhero. 

He was our greatest gift of life.

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.

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!!

Home Cook Heroes...

It was a privilege to spend our Saturday morning cooking and serving brunch to the guests at the Gift of Life Family House in Philadelphia. The Gift of Life Family House serves as a "home away from home" for transplant patients and their families by providing temporary, affordable housing near the hospital. 

This is our third year serving the guests as a special way to honor our own donor hero, Gavin, on his birthday. As you may know, we were able to donate both of Gavin's kidneys at the end of his life. It meant so much to us to be able to do that. I'll explain why later.

It was also the third year in a row that our friend, Claire, made this brunch a huge success! Claire owns a fabulous business in Paoli, PA called "HomeCooked." I have used her services more than once - for ourselves and for friends. She offers pre-made home cooked meals that you can order ahead or pick up last minute. She's an excellent cook and a wonderful person. She came with her husband, Paul, and her two sons, Ian and Dane.

We were also joined this year by my sister, Bean and niece, Shannon who were a huge help!

Hope is always thrilled to see "BEE!" 

Granny was there, too, to help honor her Grandson. And to watch her Granddaughter be "helpful" in the kitchen.

Claire does an amazing job including the kids with the prep work. Brian and his buddy, Ian, were such hard workers making scones together...

...and drizzling them with icing when they were done.

I was so, so proud of Brian. Whenever he was given a job, he stepped right up and took it very seriously.

I'm also glad we can offer him opportunities to be altruistic. And there's no better way to start than doing something that is personal to him - and to our family. 

In the down time, while the food was cooking, he sat with Ian and tried to teach him Minecraft! It was very cute to hear them giggling.

It's hard for us to believe it's been three years.

The first year was a blur - it was only five months after Gavin died and I was just a couple months away from delivering Hope. Last year, Hope was a baby. And this year we were "twinning" and she was running around opening every cabinet door.

I brought the sign that was hung on Gavin's hospital bed as he was wheeled into the operating room for the organ harvest. I wanted to convey a positive spirit to all the transplant patients and their families. It is a personal mission of mine to attempt to remove guilty feelings. I have noticed that many organ recipients have a hard time because... obviously someone has to die so they can live. But that is exactly why we chose to donate our precious son's organs. He had to die - and there was nothing we could do about THAT. But we could attempt to help someone live. We didn't chose to donate to "make his life have meaning." His life already had a LOT of meaning - another great reason to donate. Those kidneys came infused with positive energy and super powers. 

It was a wonderful morning - delicious food - and we were surrounded by people we love. Helping others is, to me, one of the best ways I can honor Gavin. On his birthday, and every day. 

Every year I make sure to implore you - beg you, even - to become an organ donor. And, just as important, have the conversation with your spouse and/or loved ones about what you would do if the unthinkable happened to one of your children. If you are not an organ donor because of fears, worries, religious reasons - or you just don't understand how it works - please read THIS post about all the myths and misconceptions. If you want to see frequently asked questions, including how to become a donor, click HERE.

It is always heartbreaking to see patients who are waiting for organs... especially if they're children!! Unfortunately, I think it's human nature to not think about things like this unless you're in it... or it's happening to someone you love... or it hits your family.

But guess what. I consider all of you to be family. So please take this message to heart. You can honor Gavin and celebrate his life by registering to become an organ donor and/or having that hard conversation. And if you are already a donor, you can do two things for us. Spread the word! Create a Facebook post about organ donation and feel free to talk about Gavin as a way to start the conversation! The more people that get the bug in their ear about donation... the better! You never, ever know... the next person on the transplant list may be someone you know. 

And, if you're in the Philadelphia area consider volunteering your time, talent or dollars to the Gift of Life Family House. There are so many ways you can help! You could get a group together and be "Home Cook Heroes" like we were - brunch or dinner or baking - it's so fun! You could also have a "Wish List Drive" to collect much needed items to keep their kitchen pantry stocked - it would be an awesome event for Boy Scouts or Moms Groups or a class trip. Are you a retiree? They have so many things you could do. Do you have a bridge club or Mahjong group? Tennis club or ANY club? Get everyone together and make it a fun afternoon. You can even hit Chinatown afterward - and if you don't know where to go or what to order, contact me and I'll have Ed personally recommend things! (Right, Ed?) It will be an experience you will never forget... I promise. Click HERE to see all the volunteer opportunities at the Family House.

One last thing. Every year I also ask you to let me know that you're an organ donor - or that you became an organ donor because of Gavin's story. It means the world to me to see my blog comments and/or Facebook page flooded with "DONOR!" shout outs!

Today was a day of rest. It was "pajama day" in the Leong house. 

I'll spare you the Mommy and Daddy PJ pics. You're welcome.

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...