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.

Sending a Promise of Hope...

Imagine finding out that your child - or a child that you love dearly - will die without an organ transplant. Terrible, terrible news to receive.

Then imagine, if you even can, that the doctor tells you to go home. That there's no hope. That you will have to watch your child die a slow death. They will do what they can and, in the end offer palliative care... but with only 25 people on the registry, there's really... no hope.

This is a reality for many, many families in Japan where there are so few people registered as organ donors.

But there is another scenario...

Imagine, again, finding out that your child - or a child that you love dearly - will die without an organ transplant. Devastating news.

Then imagine the child's doctor telling you - "Wait, there's hope!!" He tells you that you can begin to fundraise for a trip to America. It will require huge personal sacrifice, the help of an entire community. He explains how it would work. He (or she) would likely make a trip to the United States to make doctors there aware of your child and the need for an organ at some point. Lay the foundation, if you will. If your family does not have health insurance in the United States (most do not), then you would need to raise $3.5 million dollars for travel and medical expenses. You may need to stay for many months - you will likely have to charter a plane with life saving medical equipment like ventilators - and it's very possible that you may need to come back to Japan just to return to the United States if an organ doesn't become available. He will explain to you that UNOS (United Network for Organ Sharing) has regulations where only 10% of organs on the transplant list can go to patients that are outside of the United States. Once the quota is filled, you would have to wait until the next year. So you are faced with finding a way to fundraise $3.5 million dollars... care for a child with serious medical issues... in some cases, parent other children from afar while you travel to a distant land to save one... and try - in a country devoid of hope when it comes to organ transplants - to hold on.

Both scenarios are dreadful when you come right down to it. But, unfortunately, this is happening right now in the beautiful country of Japan.

This past Saturday afternoon I had the distinct honor of participating in a (yet to be named) documentary that is in the works about organ donation. A film crew from Japan - yes, as in all the way from Japan - came to our home to talk to me about our journey with organ donation and to, quite frankly, stun me with statistics that made me realize that this is a veritable crisis in their country.

On average in Japan, there are 50 adult transplants in one year. Shocking, right? But wait... it gets worse.

There were 15 transplants total in the last six years for kids under the age of 18. Can you imagine that? But wait...it gets worse. Really, really worse.

There were 4 donations for children under six years old in the last six years. Only four. Imagine if you were the parent of a child and you weren't able to get a transplant in your country... and you weren't connected enough to raise millions of dollars to bring him to a country that might save him. Just imagine.

Clearly, something needs to change. And hopefully this documentary will be a great start. It is set to be released in Japan in May. I'm hoping to get my hands on it (with subtitles!) so I can share it with all of you.

This documentary was born from the story of a little girl named Saho who is from Hiroshima. In 2012, she needed a heart transplant and her family and their community were able to raise enough money for her to receive her transplant in Michigan. She is doing well now! The story was covered in Japan by a woman named Eri Mikami who works for the Japanese station TSS. Saho's story was Eri's inspiration for this documentary and it was she who came to our home to interview me. She was accompanied by a lovely translator, Nina, who works for Fuji TV in New York and her cameraman, Taichi. Also, a representative from the Gift of Life Donor Program in Philadelphia - Allison - came as well. (Thank you to her for this photo!)

Eri and Taichi started work on this documentary three years ago and, since then, have followed the story of another Japanese child. His name is Hinata and he is five years old. His family was also able to raise enough money and Hinata received a heart from a boy who lived in Alaska. Before they came to meet me in my home, they were in Anchorage to deliver a video message to the donor family from Hinata's family. I am sure that was an extremely emotional moment.

I was eager to sit down with Eri to understand more about why there are so few registered donors in Japan. I did my own research on the internet ahead of time, but it's better to hear first hand from someone who really knows. The things she told me were illuminating... and jaw dropping.

In Japan, they have a hard time understanding "brain death." In order to donate organs, one must be declared brain dead. But when you're sitting by a bedside and still feel the warm skin and hear the beating heart and see the rise and fall of the chest of the person you love - it's hard to understand that they're truly gone. Many believe their loved one can come back from brain death and want them kept alive for as long as it takes. If the person is to die, they want it to be because the heart stops beating on its own. This would mean that all the organs would shut down and be rendered unusable for donation purposes.

Another really huge pitfall that was mind boggling to me is how they determine the "cause of death" if one chooses donation. If someone who was brain dead was left alone and their heart stopped beating on its own (on average that takes about ten days, they found) - the cause of death would be considered "brain death." But if a person chooses donation for a loved one who was brain dead, the cause of death would be considered "donation." 

I was told that people who register as donors or choose donation for their loved ones - especially a child - rarely talk about it. It's not like it is in the United States where we seem to take great pride in doing kind and altruistic deeds and are happy to share about it with others. In Japan, it's almost taboo. And after hearing the cause of death situation - I can understand why!! It almost seems like you are handing over your loved one to be "killed" by a doctor for their organs when they list the cause of death as "donation!!" I can completely understand why they would view it the way they do. This has to change.

Tonight, as I was tucking Brian in, we were talking about life and school and the future and what he wants to be when he grows up (he doesn't know). He asked me what I wanted to be when I grew up (ha!) and I told him that all I ever really wanted to be - my whole life - was a Mommy. Everything else I did was fun and fine but it was all just to kill time until I could be a Mom. That nothing makes me happier than doing things with and for him and his sister.

Then he asked me, "Do you feel sad that you can't be Gavin and Darcy's Mom anymore?" Oomph. I told him this: Every time I write on my website something that might help someone... or every time I raise money for a cause that was important to Gavin and our family... or every time I talk about organ donation... and especially every time we include Gavin and Darcy in our conversations and plans... I am actively Mothering them. I'll always be their Mommy - but I sometimes need to feel like I'm BEING their Mommy. So the other day, when that film crew was here to interview me? That made me feel like I was actively being Gavin's Mommy - and the Mommy to all of these sick children in Japan who need a voice right now. 

His response? "Woah. That's really good."

So when I sat on my couch and looked into Eri's kind face and she asked me to talk about Gavin and our journey to organ donation, I felt happy. I knew that Gavin was in the room with us. The words came out of me before I could think too much. It's a heartbreaking - soul crushing - story, Gavin's. But it needs to be told - over and over again. Each time I tell it, I know I'm sharing something new. Something important. Each time I tell it, I learn something new myself. 

I told Eri how choosing to donate Gavin's organs was really the only choice. The alternative - to let him slowly die and allow his organs to fail and watch his body change dramatically until he was no longer "Gavin" - seemed cruel. Cruel to him... and cruel to us. It also felt selfish. Gavin, in our eyes, was clearly sent to us to teach and to help and to inspire - not just his family, but all of those who came in contact with him in any way. To stop him from continuing on his journey to help people would have felt dishonorable. I explained the detailed and precise way that "brain death" is determined - and how it left no question in our minds that Gavin was truly gone. Choosing organ donation was our way of honoring his life - and honoring him.

I asked Eri and Nina how the Japanese view cremation. I was so fascinated to learn that many Japanese people have a cremation ritual that is quite profound. They cremate only the flesh and keep the bones. (I don't know how that's done - but you can read more about this type of funeral here) Then, the relatives and loved ones sift through the ashes and pick out the bones with chopsticks. Nina explained that this is a way to honor their body - they hold up each bone as if to say "Ah, look at this healthy bone!" before placing it in the urn.

Instantly, I thought of the irony. I wonder if they could view organ donation the same way! If they could imagine their loved one being wheeled into surgery a hero. If they could imagine the surgeon picking out each organ and praising it as healthy and strong and still having a divine purpose in life before "placing it" in another person where it could likely save them. If only they could see how much honor there is in saving other people's lives. I went on to explain to Eri how I told Brian about organ donation. How I told him that our bodies are like suitcases. We fill our suitcases with our favorite and most valuable things to get them all safely to our destination. But when we get there, we don't have a need for our suitcase anymore! Well, our body... including our organs... are all part of our "suitcase." Inside that suitcase is our immortal soul - the thing that makes us who we are. When we die, we have no need for our body anymore. But our soul never dies! That is why he understands that Heaven is all around us. Gavin and Darcy and Pop and everyone he loves that is gone - their souls are all around us.

Eri seemed a bit nervous to ask me one question. She wondered how I felt about Japanese families fundraising to come over to get their child a transplant. She explained that the Japanese often feel guilty - like they are "taking" organs from American people who are also waiting on the list. (Even though it is all monitored under UNOS and follows a very strict protocol.) I wondered if she thought I would be upset - feel outraged - but I felt none of that. I mean, listen - I am a donor Mom. I don't at all - for a second - know what it feels like to be on the other side of the hall as a Mom of a child waiting for a transplant. But I do know this: If I had a child who needed a transplant to live - and I lived in Japan - I would either MOVE or fundraise. I don't blame anyone for one second for doing anything and everything they can to save their child. I would (and tried to) do the same exact thing.

This blog post may not change too much in Japan - except maybe a mind or two of a Japanese person reading this. (There are, according to my stats, over 2,000 readers of Chasing Rainbows in Japan!) If that happens, I would feel like Gavin saved yet another life. Truly. Hopefully, when the documentary comes out, I will be able to share it here to get it in front of more eyes - and, God willing, change many, many more minds. But I do know that I am honored, truly, to be a small part in helping to make a change in Japan.

Are YOU an organ donor... wherever you live in the world as you're reading this? If not, I hope this post - and Gavin's journey - has inspired you to register. You can easily register if you live in the United States on the UNOS website. Or search your country or region and "how to register to become an organ donor" online. It doesn't take long.

I always say, most people can't relate to something until it hits home. Please - register to become an organ donor before the next person who needs an organ is someone you love. As I tell my children - we are all connected. 

Tonight I am sending the promise of hope to Japan. I am feeling certain that change is coming to their country...

The Day He Asked...

I feel as if I've been preparing for this day for the last two years. I practiced what I would say - how I would react - what it would sound like, look like and feel like. I can tell you that it wasn't at all how I pictured it would be.

Today was the day Brian wanted to know all about organ donation.

How ironic that it would be today. I just finished up a 40 hour long fundraiser to celebrate Hope's birthday and Gavin's gift of life where I raised an unprecedented $10, 820 for the Gift of Life Family House - ONLY using social media. (I'll be writing more about that experience in the days to come) Brian was home sick one of those days and we sat on the couch for a while watching the donations roll in. Perhaps it was that day that the seed was planted.

Today he wrote his letter to Santa.

 He made sure, as always, to include Gavin. He doesn't want Santa to forget the children in Heaven, he told me.

We drove to the Mall in our fancy Christmas clothes. I retrieved Hope's stroller from the trunk and closed the door - smiling a little smile when I saw my "Donate Life" car magnet. I turned and saw Brian looking at me.

"What does that mean, Mommy? I mean - I know what it says, 'Donate Life,' but what does it MEAN?"

I instantly felt a jolt of "this is it!" I never expected it would happen in a mall parking lot - on the way to see Santa. But I knew that it couldn't happen then and there. At least not properly. I looked him in the eye and said...

"Brian, we can talk about this later when we get home. It's a little bit complicated and I want to make sure I explain it well and answer your questions."

He seemed satisfied with that. But sure enough, he brought it up again while we were waiting (and waiting... and waiting...) to see Santa.

"Mommy, don't forget about telling me the Donate Life story, okay?"

Again, I looked him in the eye. "Brian, I know how important this is to you. It's important to me, too, and I want to make this conversation special. I promise you I won't forget."

His visit with Santa was so special. Santa knew that his 7th birthday was in ten days, that Hope (who was screaming so I took her off his knee so Brian could have his moment) was his little sister, that Gavin was in Heaven and would have a great Christmas... Brian was speechless and it was magical.

I found myself practicing my organ donation explanation on the way home, but quickly decided to make better use of my time. I knew in my heart that I just had to talk... to tell him the truth as I always have. Well, except for the Santa thing, but I think I get a pass for that.

I put Hope to bed a little early and told Brian when I came back downstairs I was ready to have our special chat. I let him choose where we should sit and he chose "our spot." Lately we have enjoyed snuggling up together on a big living room chair, covered with an oversized soft blanket in front of the Christmas tree. 

"So, is there anything in particular you want to know about the 'Donate Life' sign?" I started a bit nervously.

"No - you can just tell me everything, okay?" he said.

Here goes, I thought...

"So, the 'Donate Life' sticker on my car is referring to organ donation. You've probably heard us talking about that here and there, right?"

"Kind of," he said.

"Well, it's something that's really important to us and I'm going to do my best to explain it in a way you'll understand. Okay, so you know how I've told you that our bodies are like 'suitcases?' How, just like a suitcase, all of the important things are inside? But once you get where you need to go, you don't have a need for the suitcase anymore. You take all of the important things out, right?" I started.

"I know. And when we die, it's only our souls that go to Heaven. We leave our bodies here," he confidently told me.

It should be noted that he confidently told me that. 

"So, can you believe that there are some people who have a really sick part in their body and need it replaced with a new part - or they'll die?"

He turned and looked at me with wide eyes.

"For example, some people have really sick kidneys - they just stop working. Those people have to have a machine do the work of their kidneys or they will die! OR - they could get new kidneys and live!

For other people, they might need a new heart... or a new liver... or new eyes.

So, a person chooses to 'Donate Life' long before they die. That means, when they do die, their doctor knows that they want to help other people live with the parts they don't need anymore. After they die, the doctor takes them to an operating room and removes the parts that can be used to help other people!"

"Woah." was all he had.

"And get this. You'll love this part. For someone to get a new organ, they have to be a perfect match to the person who died. So imagine someone anywhere in the whole country who needs a new kidney - and imagine someone dying who has the perfect match for them. The person who is sick gets a call from their doctor telling them 'We found a perfect kidney for you!' Can you imagine how excited they would be?"

"Yeah!" he said with bright eyes.

"So - that person heads to the hospital right away. And HIS doctors get on an airplane or a helicopter or a fast car and go quickly to pick up the kidney that the person who died is giving them! When they get back, they put the new kidney in the sick person and he is often 'all better!' And I am sure that the person who donated that organ is smiling from Heaven - feeling pretty proud that he or she saved someone's life. That is what it means to 'Donate Life.' You give a part - or parts - of yourself to another person after you die so they can live! Did that make sense to you?"

"Yes," he replied... but I could tell he needed more.

"Are you wondering why it's so important to us?" I asked.

"Yes," he answered. 

"Well... that's because Gavin was an organ donor." I told him.

His head whipped towards me.

"WHAT?" was all he said.

"When Daddy and I knew that Gavin was going to die - after the doctors tried and tried so hard to make him better, but couldn't - we decided that Gavin wouldn't want another person to die if he could help them. So, the doctors came to his room and took him to the operating room. And you know that sign that says 'Superhero Gavin - Off to Save Lives!' that you've seen in the house? We taped that to his bed. And Brian - you're not going to believe this. Daddy and I walked alongside of Gavin when the doctors were taking him to the operating room and everyone started clapping. For Gavin!"

"Everyone? In the whole, entire hospital? Why?" he asked.

"Well, it felt like everyone! But it was everyone in that part of the hospital where we were. And they were clapping because people who are organ donors are considered heroes. So Gavin died a hero and they knew he was about to save someone's life!! That's why they were clapping."

"Wow." was all he had.

"And guess what, Bri. The doctors found someone allll the way across the country that needed not one - but TWO kidneys - to live. And Gavin's two kidneys were a perfect match. And this person was a young Dad - just like your Dad! Can you imagine how happy his family was that day finding out that, because of Gavin, they would have many more happy years with him?"

"Wow." was all he had.

"So his doctors flew all the way to Delaware and picked up Gavin's kidneys. Gavin was..."

"already in Heaven." he finished for me.

"Yep! And do you know that after this man's doctors put Gavin's kidneys into his body, he got so much healthier? We don't know who he is, but I heard he's doing so well now and his family is probably so happy."

"Wow." again.

We sat in silence for a while, just holding each other under the Christmas lights.

"So... how do you feel about everything I told you, buddy?" I asked a bit nervously. Had I told him too much? Explained it well enough? 

And then...

"Good."

The dreaded "good" that I hear after so many questions.

But then...

"Actually, awesome. I feel awesome. I think it's awesome that Gavin wanted to help people. I would have clapped for him, too."

I would have clapped for him, too, he said. 

I would have clapped for him, too.

We sat some more and really, there was nothing I could say after that. As we sat there I thanked Gavin for giving me the right words to say to his little brother. I always strive to be honest with Brian - and tonight was no exception. I would have had this conversation a year ago - or two years ago - but I needed him to ask. I knew he would be ready when he asked.

As I tucked him into bed, he reached over and grabbed the bear. The same bear that he gave Gavin when he said goodbye. 

He whispered a wish into that bear before he placed it by his brother's head and whispered "I'm going to miss you." 

I watched him laying there tonight, clutching that tiny bear, and said...

"Can I take your picture?"

"Why?" he asked. "You're so silly, Mommy. I'm in bed!"

"I know. But I want to take your picture so I remember this night and our special talk forever." I explained.

He sweetly obliged...

"I'm so proud of you, buddy. I really am." I told him.

"Thanks. I'm proud of you, too." he replied.

And then...

"And Mommy?"

"Yes?"

"I'm really proud of Gavin. That he saved someone's life. That was a nice thing that he did since he didn't need those things anymore. He's definitely my hero."

Wow was all I had. 

If you haven't already done so, please consider becoming an organ donor. Brian Leong will think you're a hero... and so will I.

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!!