Tuesday, November 24, 2015

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!!

Wednesday, November 18, 2015

Hope's First Haircut!...

Today was the big day!! After watching Hope shove her hair out of her eyes fifty times a day, every day... and watching her immediately remove any bow or headband or masking tape I used to a: contain her hair or b: identify her as a girl in public... I gave in and decided she needed to get a haircut.

Haircuts are a big deal in our family. Gavin and Brian had their first haircuts with Miss Silvia much earlier than Hope and went every month faithfully (Brian still does). Gavin would sit on my lap and smile through the entire thing. I would set a portable DVD player on Miss Silvia's station and he'd happily watch one of his favorite movies while Brian sat patiently in his stroller and waited his turn.
He was just as happy to sit for his cuts every time, too. 
So we really didn't know what to expect from Hope. She's not one to sit still for very long unless she's strapped in! I figured I'd have to work hard to hold her still on my lap - and bring lots of bribes.
Brian was SO excited about Hope's first haircut that he made me promise to schedule it when he could be there. And he reminded me to bring that DVD player. If I look into the crevices, I bet it still has Gavin and Brian's little hairs in them. Think I was exaggerating when I said haircuts are a big deal in our family? Ed raced from work so he could be there for Hope's milestone! It was a family affair. And it was a little emotional for all of us. As soon as I pulled out that DVD player, even Miss Silvia got choked up. Gavin was definitely there with us... and I'm sure he was pleased that I chose one of his favorite "Baby Einstein" movies. 

Imagine our surprise when Hope climbed into the seat and... sat there!! Silvia put the cape on her and... she didn't move!
She spent her time watching the movie... 
or looking at Brian or her Daddy. 
She was so good!! 
Take a look! 

 The end result was an adorable, short "bob" with cute bangs. It can be swept to the right or the left and, most importantly, it will stay out of her eyes! 
She doesn't look thrilled (it was during a suspenseful part in her Baby Einstein movie) but you can get an idea of how it looks from the front. 
But once she heard her Daddy and Brian complimenting her, she was all smiles...
...and so were we.  We celebrated at a nearby restaurant for dinner!
It's hard to explain moments like this - and why we make a fuss like we do. I'm not sure that we even understand. All I can tell you is that it makes us happy to do these little things as a family. And to celebrate them with great joy.

Tuesday, November 17, 2015

This is What Happens When I Don't Write...

Lately - as I'm sure you've noticed - my posts have long gaps between them. I have a recipe for my world class excuse that I'm happy to share with you.

One part laziness.
Two parts busy children who run me straight to bed early each night.
One healthy dose of grief which, to be honest, has a strong connection to my writing.
Mix that together - add some "writing would make me miss Dancing with the Stars" or insert any mind numbing TV show in its place - and you have my decadent excuse.

I was talking to my Aunt today about my blog and explaining to her this very struggle. When I started writing, I never expected it would turn into THIS. I also never expected that Gavin would die, but that's a whole other blog post. Throughout his life, every day was filled with a new milestone or therapy or fun adventures or scary medical issues or alternative treatments... I could go on and on and on. But that's the point. I would sit down at the end of the day and know exactly what I was writing about! Now our lives are... I guess there's no other word for it than "typical." Brian's in school all day and Hope is a toddler and when I sit down at the end of the day I think, "Does anyone really want to hear that Hope has a new cup or that Brian and I did an art project after school or we made brownies and fancied them up with a bag of chocolate chips which was a big mistake?" I typically answer that with, "Wait... where's the remote?"

But then... there's the guilt. I don't want Hope to grow up and see the huge gaps in HER little life when I have Gavin and Brian's life together chronicled, in detail, for years. But on the other hand... how grateful I am that I have Gavin and Brian's life together chronicled, in detail, for years. Brian and Hope will absolutely be able to read all about Gavin and understand his story when they're older.

Anywhoo..... that's what's on my mind.

So, since I haven't written in a bit, I have a "dump" of information to catch up on. Here we go... try to keep up!!  Ha!

Brian had his final soccer game and said goodbye to his coaches, Joe and Kevin.
I had to talk him into soccer - he really wasn't interested. I finally convinced him when I listed his friends that had signed up. In hindsight, I should have just led with that information - it was an instant yes when he heard who would be there!
He started off the season knowing very little about the game - and he ended up being really good! I mean, there were a few times that he forgot which goal was their team's - but that's just a small technicality. 
The coaches were positive and encouraging and really came down to the kids levels. Coach Kevin would give personal pep talks to the kids and sneak a teaching moment in at the same time, which Brian responded well to.
Our little guy is on the shy side so I was always shocked to see him out on the field going after the ball. He really got in there and gave it his all!! And once we started using the inhaler for his "Exercise Induced Asthma," he was much more comfortable running up and down the field during the game.
We missed picture day (so bummed to miss those adorable little trading cards!) so I took my own picture after the final game. Brian was excited that they used HIS ball for the last game!
After the game, the whole team went to a restaurant for pizza, cupcakes and an award ceremony. The coach gave a personal speech to each child before giving them their trophy. Brian got the award for being the "best listener" on the team - because he took feedback well and improved a lot from the beginning to the end of the season. Brian, with cupcake icing all over his mouth, was grinning from ear to ear.
 I don't quite understand the controversy about trophies at this age. Brian and his friends are ALL about the trophies - and it was something he was really looking forward to. I see it as a visual reminder on the shelf in his room about the time he resisted trying something new - tried it anyway - ended up having a lot of fun - learned that he was actually really good - and found a sport that he really loves! I don't see anything wrong with that. I hope when he looks at his trophy he remembers all of that - and feels pride.
I was especially proud of Brian at his final game because he was up super late the night before! He had his first Cub Scout camping trip!!
He and Ed joined Brian's pack on a "Night at the Museum" overnight. They had educational activities, toured the museum and watched "The Lorax" before setting up their air mattresses among the animals and dinosaur eggs. They had such a great time! We are really enjoying the Cub Scout experience so far.
While Ed and Brian were away, Hope and I had a little "girl's night!" The first thing she did was steal her brother's cup which is her goal every single day. This time (don't tell Brian) I didn't take it away. 
She walked around like such a big shot all night!
I love spending time with this happy little girl. It's pretty rare that she's a grump!
After breaking her arm a couple weeks ago (dancing!), my Mom is doing GREAT. She'll be getting a hard cast very soon and, if all goes well, she should be cast free before Christmas! She has had such a great attitude about this temporary setback. She's a warrior!
Our new home has no shortage of beautiful, huge, old trees. Coincidentally, our yard is now filled with beautiful, huge leaves. A LOT of leaves. Want an idea of how MANY leaves? Our first time bagging mulched leaves from JUST the front yard filled 32 large trash bags. But the good news?

You can even SWIM through them!
We love how they look - and watching them fall like soft snow in our peaceful yard is one of my favorite things to do.
I spend my days at home with Hope and we are never bored! She loves to walk around carrying a "purse" and filling it with toys, books and her snacks - after she dumps them out of her snack cup.
We spend time outside on the driveway where she loves to push her stroller, get dirty, play with chalk and bubbles and play on the playground.
We play in her miniature playroom in the basement reading books and cooking in the "kitchen" and doing puzzles.
We lay around and practice "mothering" her dolls, practicing animal sounds and watching her recent favorite DVDs that were also Gavin's favorites - "Baby Signing Time." 
Hope follows me happily everywhere I go in the house... and easily finds something to do or get into. When she is doing something that she probably thinks is naughty, you'll hear her saying "HOPE! No, No! HOPE! No, No!" That's usually my cue that I should peek around the corner to catch her emptying out a drawer, creating a tissue box explosion or dumping her snack cup. But be warned - if you hear her say "Uh oh" - it's likely too late. The damage is done so you should approach with caution... and a vacuum. She is the funniest little girl - we laugh a lot during the day!
While we're busying playing all day, Brian is having fun at school! Every day he comes home with a big smile and tells me something he learned, what he played at recess and with whom, what he did that was nice, etc. We are so happy with our choice of school for Brian. And we are even MORE excited that they just received the Blue Ribbon of Excellence Award! The Principal of Saint Norbert School, Mrs. Hennessy, and some of the teachers - including Brian's, Mrs. Korom - travelled to Washington, DC to be honored by the Department of Education. Schools that are chosen for the Blue Ribbon are those that perform at high academic levels.
That Friday, they had a day filled with celebrations. Each child brought in two boxes of cereal - one was put aside to donate to a local food pantry and the other was put on a "breakfast bar of champions" for all the kids to share as a snack!
The kids could skip their uniforms and dress down - and they were all given matching "Blue Ribbon" tee shirts! This is the entire school...
And they ended the day with a performance by a local circus act called "The Give and Take Jugglers." The parents and siblings were invited, too! It was such a cute performance - completely tailored to the children and very interactive!
They even had an aerial artist who performed on a rope and silks. This was all in the school gym! 
We're grateful to be sending Brian (and one day, Hope) to a school that knows how to work hard... and play hard. And the gift they have is that the two are often combined and the kids don't even realize it! That, to me, is the sign of an excellent school.

Finally, I had a rare day out this past weekend! My friend, Claire, and I went to see author and blogger Glennon Melton  from Momastery talk! She had a speaking engagement at a nearby church. It was Claire's first time hearing Glennon and she really enjoyed it. If you've never seen her, definitely watch her website for dates in your area - you won't regret it. 

She's hilarious - 
and real - 
and touching - 
and kind. 

Her words are changing people. And her people are changing the world.
I'm honored to count her as a friend. 

Thank you, as always, for caring about our little family.

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