Tell Me A Story - Chapter Seven...

"Tell me a story from when you were little?" he asked me. It's our ritual at bedtime. But this night I had other plans for my little boy who I would be tucking in six...and waking up seven.

"Tonight I'm going to tell you some stories from when YOU were little. How's that?" I proposed. I got my answer when he curled up into my arms.

I will never forget the day you were born. December 16, 2008. I was 38 years old. I couldn't wait to finally see your face and when I did I thought you were the most beautiful baby. 

I had to stay in the hospital for four days to recover from the birth and they were some of the happiest days of my life. Daddy was back and forth because he had to be with Gavin so most of the time it was just the two of us. I barely put you down. 

We bonded and got to know each other and I just knew that the two of us were going to be really close.

I remember the moment that you met Gavin. Daddy and I were so happy that Gavin was now a big brother. We could tell that Gavin instantly fell in love with you. He had that protective big brother look about him from the first day - and he was only 15 months... that's not even two years old! 

I remember your first birthday. You loved balls so we got you a ball pit! 

It was hard to get you out of there. You were always so easy to please and could entertain yourself really well.

When you were two - boy do I have a story for you. I was downstairs doing something when all of a sudden I heard a loud THUD!!! I dropped what I was doing and RAN upstairs and FLUNG open your bedroom door and guess what I saw. YOU sitting on the FLOOR!! You looked up at me and smiled and said "hi." You had climbed out of your crib!!  (Brian laughed and laughed so hard at this story that he made me tell it three times!) The next day I put a "crib tent" over your crib and each day at nap time and each night at bedtime I would zip you right into bed. You loved it!

And you were very curious about everything - inside and out of the house. That Christmas I definitely had to tell you "we look with our eyes and not with our hands, Brian" about thirty times a day as we stood in front of the Christmas tree!

Three was a big year for you. You started preschool - AND you started TALKING!! You were holding in all of your words until just the right moment. When you first started in this preschool you were so quiet and shy.

But then - you discovered the reason why you had been holding in all of your words! Your words and your compassion started flowing out that year. By the end, your teacher told me that you would always reach out to classmates that looked alone or needed help. 

It was also the year that you and I started seeing movies together! Your first movie was "The Muppet Movie" and you loved it!

And the big three year old news? You moved into a big boy bed on your third birthday! The transition was so simple with you. We put you in the bed - you took sixty seconds to arrange your "guys" the way you wanted them...

...then you'd lay down with a smile and go to sleep! In the morning you would lay there with a smile until we came into your room to say it was okay to get up. Do you know how unusual that is? You were such a good boy - and still are!

Four was a super-exciting year. It was the first year we were lucky enough to hear Santa Claus outside of our house on Christmas Eve!! We heard him right outside YOUR window!! And I was so lucky to have my camera there to videotape it.

"Mommy, you always have your camera," he reminded me with a smile.

"Good point, bud. Good point," I said. 

But four was also a very sad year. That was the year you had to say goodbye to Gavin. But it was also a powerful year because we all learned that good things can come out of really bad things. Like organ donation, remember?

And Hope! Four was the year you became a big brother to Hope! I will never forget the first time you met her in the hospital. You sat in a chair and Hope was placed in your arms. You leaned down and kissed her.

Then you whispered, "Hi Hope. I'm Brian, your big brother. I'm going to love you forever."

"Wow - a lot of crazy things happened when I was four," he noted.

"Indeed," I agreed. "You can say that again."

Five was a fun year! You wanted to be involved in every single one of Hope's firsts. You even gave her her first bath!! You were a natural as a big brother - and still are!

And that was the year that you were Daddy's best man and Hope was my maid of honor when we decided to get married (again) on our ten year wedding anniversary in Las Vegas! Remember your first ride in a limousine... "and how hot it was. Las Vegas was too hot!" he reminded me.

I remember after Daddy and I said our vows "Elvis" started singing a song and you asked Hope to dance!! It was so sweet.

And you were five when you started Kindergarten at St. Norberts and now you'll be there all the way through 8th grade!

Six was the year that you lost your first tooth - it was just a few weeks after your 6th birthday, actually!

You also started LOVING sports - especially soccer.

And now here we are - seven. I can't believe it. And I can't wait until next year to talk about all the great things you'll accomplish as a seven year old!! Are you going to want me to go through each year again all the way up to eight on your next birthday?

"No - that's okay, Mom."

All righty then.... ha! Well I definitely enjoyed the walk down memory lane. And with that, I tucked him in and said goodnight.

~~~~~~~~~~~~~~

Brian's birthday has been a lot of fun! This morning we gave him his presents at breakfast. We wanted to send him off to school feeling excited - and I'm pretty confident we accomplished that. He opened a present "from" Gavin first - two books. Gavin was instrumental in teaching empathy and compassion to Brian without even trying. I want to be sure, now that Gavin is gone, to continue instilling those virtues in him through example, activities we do as a family and good stories like these two. 

I highly recommend these two books: "The Invisible Boy" by Trudy Ludwig and "Each Kindness" by Jacqueline Woodson.  We read them both tonight and Brian was deeply moved by both stories - and they sparked a good conversation between the two of us.

Hope gave him the ultra coveted, much wanted, highly hoped for video game "Super Mario Maker" that he had been wishing and praying and asking Santa for. I made sure I told him that I whispered to Santa that he could scratch that off his Christmas list since we were giving it to him for his birthday. Brian thought that was wild that I talked to Santa and told him that.

When Brian came off the bus this afternoon, he told me that the ENTIRE bus sang Happy Birthday to him this morning!! It totally made his day.

We played in the basement together and made custom paint with Crayola paint maker which was a lot of fun! We had lots of time to play before dinner. It's a tradition that you get to pick your own dinner on your birthday (and actually, every Friday night in our house!). Brian picked cereal!! That took about one minute to prepare!

After dinner we presented him with his birthday cupcake...

...and as he made his wish, I thanked God for my wish come true.

It's hard to express how much I love being Brian's Mom. He has always been a sweet, tender hearted child who is not afraid to show how much he loves us. 

We have always had a very special bond - from those first quiet days in the hospital. I feel very lucky that he comes to me with questions or problems or fears... and I feel equally lucky when he shares his excitement and stories and even his corny jokes with me. We laugh together a lot.

I love watching his relationship with his Daddy, too. Every time Ed says, "I used to do this with my Dad" - I just melt. 

We have been promising Brian for a few years that he can start watching the "Star Wars" movies when he turns seven. He didn't forget - and neither did Ed! They watched the first one (although it wasn't technically the first one - I have no idea what that means - it's a Star Wars thing) this past weekend and I'm not sure who was more excited.

Watching Brian with Hope - even when he's frustrated with her - makes me so happy. Our lives would be a lot lonelier if Hope hadn't come along after Gavin's death. We all needed her - even if we didn't know it. Brian fell into the big brother role so easily and has loved her intensely from the second he knew she was inside my womb.

I'm not sure how many more years I will get of the Brian who wants me to spend time with him... to play with him... to tell him stories... and hold him. My guess from knowing him is many more years.

Lucky for him, my arms will always be available for holding - no matter how old I am...

...and no matter where his path leads him.

Happy Seventh Birthday, Brian!

(Thank you to Lauren Naldzin of Lauren Ann Photography for the last group of photographs. We love them!!)

The Night Before Seven...

Brian sat at the kitchen table after dinner tonight to write thank you notes to his friends. As we went down the list, he told me something nice about each of his friends - unprompted.

"Sarah is really good at drawing and I really like her."

"William is fun to play with and Daniel is good at soccer. Mark is funny..."

"I like spending time with Marie. Cassie has a happy face."

"Grace cares about every single person."

"Emily is fun to play with and can be really silly."

And on and on it went.

Brian had such a great birthday party this past weekend!! We had it at our local Bounce U - just like last year. It was Brian's choice and I was thrilled he chose here again! We know the folks there pretty well. After Gavin died, I spent a very pregnant and emotional summer bringing Brian to this Bounce U. He bounced away his energy and grief while I sat on a bench nearby - grateful for the mental break. And the Bounce U team came to my big playground fundraiser - even donating a great raffle basket. They did a great job with Brian's party, as usual. All I had to do was show up with a cake, some decorations and the birthday boy and they took care of the rest! They even took pictures for us!

Brian had nearly his entire class there and everyone had a great time. Here are some photos from the day...

After bouncing, we moved into the party room for cake. I LOVED Brian's cake this year. He said he didn't care how it was decorated so I chose to use this gorgeous picture my friend, Lauren, took of him! Brian's only request was that we save his head for him. Ha!

Right before the lights went out, my shy guy leaned over and said, "Mommy? I'm nervous."

I said, "So am I, buddy! See the kid carrying your cake? What if he trips and your head falls on the floor!?!?!" That got a laugh out of him. Whew! I still got it.

And with that, it was over. His last celebration with friends as a six year old. Tomorrow night we will celebrate as a family.

We are so proud of Brian for so many reasons. He's kind and he's a good friend... he's thoughtful and compassionate... he's funny and laid back... I could go on forever. 

I can't wait to see what year seven has in store for him.

Six Minutes...

It all felt like a dream.

I was suddenly backed into a corner of a room - watching a series of events unfold that, before then, I had only seen on medical TV dramas. But this was my life. And this was my son. And as I stood there, alone, and watched a team of doctors and nurses move at high speed in slow motion...I couldn't move.

Intubation.
CPR.
Screwing an IO line into his femur.
Ed answering at work on the first ring - the true miracle of the day.
Watching as Gavin's light skinned little body that I worked so hard to protect and keep safe and nourish and moisturize and exercise and more was almost manhandled.
Watching as his tiny body was surrounded - and even straddled - for six long minutes as they tried and tried to breathe life...LIFE...into him.


My son hadn't even reached six years - and in just six minutes his future was about to end in that room with his Mom backed into a corner...frozen.

And here I am again.
Frozen.

The meal trains have long ended.
The mourners have gone back to their lives.
The sun has rose and set on this void for over two years.

But there's that six minutes that turned into 1, 401,120 minutes that are suddenly invading my thoughts every day. 

Yesterday, the kids and I created a "Christmas Art Gallery" in the playroom. I hung up huge pieces of colorful art that they made on the wall and, of course, wanted to take a photo. I held up my phone and as I was waiting for Hope to turn and at least look my way (I don't even try to capture perfection at this age!) I saw something.

"Brian! The craziest thing just happened. I was looking at you guys through my phone to take the picture..." I started.

"And you saw Gavin?" he finished.

"Wait, what?" I stared at him.

"Gavin's in here with us." he said, matter of factly.

What I saw was a ball of light almost dance right in front of Hope and Brian. Brian knew before I did what I experienced. It was... well... there aren't a lot of words to describe what it was or what it felt like.

Last night, tucking him in, I brought it up.

"Do you still see Gavin, buddy?" I asked.

"Sometimes." he said.

"You are so lucky! I wish I could see him." I replied.

"He's always here, Mom. Well sometimes he's not here because he's with us when we go out." he told me.

It's hard not to believe a six year old who confidently assures you that his brother who died is still "here" - but it really got me thinking.

"Brian. You don't know this - but you just helped Mommy a lot tonight. Something just occurred to me!" I told him with a small smile.

"Huh? What?" he replied with curiosity.

"Know what I think? I'm not sure I really believe in death anymore. I mean - people die and it's terrible and we would rather them be with us, let's be honest. But they only really ended this journey with us. He is alive in his new life with God and Jesus in Heaven! He's alive! We should be happy that he's alive and gets to not only be with us still, but that he gets to have all these amazing experiences wherever he is. He's alive, don't you think?" I anxiously told him.

"Huh. I like that." he told me.

Now if I can just convince my tired body, my grieving heart and my endless tears that this is true.

I stepped away from writing this for a while. Left it overnight, actually. Went grocery shopping and picked up items for Brian's big birthday party this weekend. Felt remorse for a nanosecond that I have let a lot go - my house, my appearance, my motivation to do anything, go anywhere - over the past couple months as I succumbed to a depression. I thought about the comment I got that "you only do fundraisers for things that matter to you and your small circle." I did not reply, but for another nanosecond I felt guilty like that was a bad thing. Then for the next few minutes I thought, well I'm pretty sure that it matters for the thousands and thousands of children that will enjoy toys and instruments and games and books and art supplies and movies while they are enduring a long hospital stay at Nemours A.I. duPont Hospital for Children...where, by the way, patients come from all over the world to see their excellent doctors and surgeons. And for hundreds of thousands - maybe more - that will enjoy the future all abilities playground with their siblings, parents, friends while they're visiting...going to therapy...a doctor's appointment or are hospitalized at the same hospital. I'm pretty sure it matters to the thousands and thousands of children who will, for years to come, have access to special needs classrooms all over this area. Classrooms that are furnished with therapy aids and furniture and toys and books. Therapists that will feel better equipped with updated toys and therapy aids so they can continue to help the thousands of children they will see over the years. I don't think the thousands and thousands of families that will come from all over the country - or even the world - to Philadelphia for an organ transplant will judge who the money came from that helped to keep their stay and all that came with it... free. 

And I'm pretty confident that it will matter to the ONE person who receives an organ transplant from the ONE person ANYWHERE in this world who decided to say YES to organ donation because of Gavin Leong. I can only do so much...and my small circle has pretty big ripples.

Gavin's story with us - and the world... it has a beginning and it has a middle. They were incredible, life changing years. But I haven't been able to really see an end. That is, in part, because of all that has been done in his name. SO much has been done and, for that, I am so - SO - proud to be his Mom.

But that doesn't erase the fact that I am feeling the enormous loss of his presence in our home and in my arms profoundly - more than ever before. I am functioning and still the same Mommy as before - but I have been so, so sad. 

It's amazing how quickly your life can completely change in just six long minutes.

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.