Gavin David Leong...

Gavin David Leong

September 29, 2007 - April 14, 2013

Our sweet son was officially pronounced dead at 9:53 this evening.  Today was the hardest, most heart wrenching day of our lives.  It was also a wonderful birthday gift to me - to know that I could birth this beautiful soul from my body on his birthday... only to usher him into Heaven on mine.

Ed and I were able to hold him this afternoon - after four long days.  I was so, so happy to have him in my arms again.

We are still here with his body.  Loving him and crawling into bed with him.  Singing to him and telling him stories.  The love we have for this child is overwhelming.

We have to wait for the organ transplant team to be ready and in place.  Surgeons could be flying in from all over the country for the precious organs that Gavin is sharing so heroically.

Once they are ready, they are allowing us to escort Gavin down to the operating room.  It could be in the middle of the night when we're called... or it could be in the morning.  Whenever it is is fine with us.  We consider it a privilege to wait.

Knowing that our son will die a hero - saving or enhancing lives - it's a privilege for us to wait.  Not to mention, we're really not in a hurry to leave him.  He will be kept on the ventilator only to keep his heart beating while they harvest the organs.  Although it sounds horrible - he truly is not alive.    The heart needs to continue beating to provide oxygen to the organs so they stay perfect for the people who are anxiously waiting for them.  I can picture a parent sitting at their child's bedside tonight hearing from their doctor, "We found an organ."  If they only knew that these are organs with super powers.  If they only knew.

Leaving the hospital without our son will be hard on our hearts.  We are anxious to see Brian... but nervous to walk into our home, which is filled with Gavin's things, and try to stay upright.  It's going to be hard.

I will soon be revealing the details of two special places that we would LOVE donations to in honor of Gavin (and in lieu of flowers) for those who were interested.  

But before that, I have a special project that ANYONE can do - that can be FREE - and would be the best birthday present you could give me.  Here is what I posted on my Facebook page first thing this morning:

Ed and I will be announcing our choices for "in lieu of flowers" donations to honor Gavin in a few days, but today is my birthday and this is all about me. I've come up with a special, totally FREE way to honor my sweet son who could inspire the most profound emotion without ever saying a word. I'm asking you to help someone... document it with words and or a photo... and place it on the Chasing Rainbows Facebook Page. Then be sure to check the page often to get inspired by the outpouring of love. Here are some great ideas for you... Find a special needs classroom in your community. These are usually low funded and always looking for donations. Perhaps you have toys your kids don't play with anymore that could be used in the classroom or during therapy. Random crayons that are laying around. I know we always needed rug gripper to place under Gavin's behind when he sat - that's a good need. Do you know a special needs Mom in your neighborhood? Church? School? Tell her you'd like to make dinner for her family. What night would work? Then tell her the only requirement is they have to give a "cheers toast" to Gavin during dinner. Help someone struggling to unload groceries into their car in the rain. Donate clothes to a women's shelter. Check with your local children's hospital for volunteer opportunities - even if it's just for two hours of your life. Save all of your magazines and bring a big stash to your local hospital. You have no idea how helpful that is to parents who spend days, weeks or months (as I did when Gavin was a baby) sitting in their child's hospital room. These are just some ideas... be creative! And think of Gavin when you do it. Share his story with the person you are blessing. Tell them that Gavin Leong changed the world with little acts of courage, determination and a sweet smile... without ever saying a word. And then ask them to pay it forward to honor his legacy. This would be the best birthday gift you could give me. There is no time frame - you could post something today or a year from now or five years from now. Thank you for helping me to honor my amazing little boy. And feel free to share this anywhere you want! 

If you don't have Facebook, don't fret.  You are welcome to share your story here in the comments or email it to me with a picture.  The idea really took off today, I was told.  It was shared all over the country...and the world.  I'm so grateful.

Today has truly been the worst day of our lives.  But it's also been an unexpected gift. Our beautiful first born son was set free.  Now he can talk.  He can run.  He is healed.  As we kissed him goodnight and wished him sweet dreams one last time...

...we realized just how lucky we are to be Mommy and Daddy  to this courageous superhero boy.

Life will never be the same. 

 

Turning Four!

Last night, tucking Brian into bed, he was so excited.  He couldn't believe that he was going to bed three... and he'd wake up four.  This morning when he opened his eyes, he found a room filled with balloons!  We all came in singing Happy Birthday.  I can't believe my baby is four.

At times, I feel like I can't think of more ways to express how much this child means to me.  How I know he was meant to save me from despair after the shock of his brother's unexpected difficulties at birth.

Brian has been a "spirit lifter" from day one... and that hasn't changed!

I think it would be hard for anyone to not smile and laugh around this little boy.  His joy is contagious.  His laughter is contagious.  And his compassion and sweet nature is ever growing and evolving.

He's a thinker!  You can always see those wheels turning and he is very inquisitive.  I love that!  He loves books, like his Mommy.  He is a natural with a computer, like his Daddy.  And he's strong and brave, like his brother.

His birthday weekend has been so much fun!  And today, the celebration continued with a family trip to Build a Bear.  Brian was SO excited when he realized that he could pick out his own bear and personalize it.  And I was so excited when he was drawn to the blue bear - my Dad's favorite color.  It made me feel like my Dad was there, guiding Brian's eyes to that particular bear.  Then, he chose sounds and songs to put into the bear!  He picked "cool sayings" like "You're a good friend.  What's up?  Let's play ball!" and then a fun "Happy Birthday" song that inspires him to bust a move every time he pushes it.

He really got into stuffing his bear and followed the directions intently...

...as you can see in this adorable video:

Brian named his bear "Boo Boo" and picked out a shirt for him that says 'Happy Birthday' - the whole experience made him so happy!

After Build a Bear, we went to the fountain in the middle of the mall - one of Brian's favorite places.  He LOVES to throw coins in there - and Gavin loves to splash his hands in the water.  And the trip ended with cookies and milk at Mrs. Field's.

After dinner it was time for one of Mommy's elaborate birthday cakes!  Angry Birds, of course.  I slaved all day on this cake - can you tell?

Brian was so impressed he couldn't even wait for me to cut him a piece!  Honestly, he is so easy to please.  Birthdays are not elaborate around here - yet he still proclaimed this to be "the best birthday ever, Mama!  Thank you so much.  I was so happy on my birthday!" 

It was a fun weekend with a fun little boy who brings so much laughter to our home.

I love being a Mommy.  I sure got lucky - and I know it.

Happy Fourth Birthday, Brian!!  You are the best four year old ever.

Bring It On, Year Five!...

This year for Gavin's birthday, I decided to not worry too much about the "typical" stuff - and do all the things that HE appreciates.  Like wrapping his presents.  If I forced him to sit and unwrap - he'd try to force himself out of my lap.  It would feel too much like "therapy" to him.  Not fun.  So I just presented him with all the gifts unopened - no work required.

And when we decided not to go to the beach and were trying to come up with other ideas...we wanted to pick something that we knew Gavin would like.  We could have spent the day at the Zoo - but that would have been more of a "Brian" trip.  The Aquarium?  Same thing.  We had to do something that involved rides and lights and music - Dutch Wonderland was the perfect choice.  (See yesterday's post!)

But there's one thing that I just can't quit.  Something that is NOT about Gavin at all.  As a matter of fact - it's something he could have skipped every year and not cared one bit.

A cake.

I present to you - Gavin's Ocean Themed cake!!  This year he was all about the ocean.  This year he was also NOT all about the cake.  (But for the record - it was an amazing cake.  I expect Buddy from Cake Boss to be calling me once he sees my blog)

Notice the details:  Mommy in the shade holding her sunscreen.  A sailboat in the water.  Gavin sitting in the ocean unattended while I read People magazine.

If you're wondering, Ed and Brian weren't available as miniature replicas.  Maybe next year they'll make the cut.

Since it's not a birthday without Granny, she came over to celebrate with us!  Actually, she came with dinner!!  (Note to self:  invite Granny over more often)  The birthday boy was so happy to see her when she got here...especially since I had accidentally left him outside in the tree.

Whoopsie!  Thanks, Mom!

 Brian was thrilled to see his Granny, too, and asked her to read his current favorite book to him: "Froggy Learns to Swim."  Watching my Mom read to him with dramatic enthusiasm and seeing the smile on his face reminded me why I always felt like I had the best Mom.  You could replace little Brian with a little Kate twenty years ago (work with me here, ok?) and she'd have the same enthusiastic, happy face.  

 She got right in there playing with one of Gavin's birthday gifts - Elefun!  It's an adorable game - the elephant blows butterflies out of it's long trunk and kids try to catch them with their little nets.  Gavin gets a kick out of watching the butterflies flying around.  Thanks to our generous neighbor friends, Patti and Patrick and their kids, Seamus and Molly for the awesome present!!

Gavin was all giggles the entire day.  And when the cake came and it was time to blow out the candles, he laughed and laughed and laughed.  The cake is really for us.  Although Gavin doesn't really like to eat sweets (or solids!) - we would just feel funny not celebrating (and photographing) his birthday without one.

 He stuck his fingers right in the icing, though!  He gets that from his Dad.

Of all the presents Gavin received this year, I think it was Miss Sara that wins the prize for best gift of the year.  No, it wasn't the awesome piano toy that Gavin can easily push to play...

It wasn't the cool outfits for Fall from her and her parents...or the suction cup spin toy that just might encourage him to use that left hand to spin it during meals... (seriously - she doesn't miss a thing!)

 It was his card.  The BEST CARD EVER.

I wish I had captured a better photo - but he was so happy and excited that he wouldn't stay still.  The card plays the opening theme of Gavin's favorite show - Little Einstein.  We've opened and closed that card at least fifty times since Friday.

Over the weekend, my Facebook wall was flooded with well wishes for Gavin on his special day.  It amazes me daily how many of you are invested in my child.  I don't take the love, support, prayers and positive thoughts you send his way for granted.  It means more to me than I could ever explain.  Gavin captured our heart as soon as he came into this world.  He is such an easy child to love.  Thank you to all of you for loving him, too.

Here we go, year five!  I can't wait to see what lies ahead...

Does Canceling a Birthday Mean I Don't Age?...

Well, it was an interesting birthday weekend. I'll give it that!

After canceling our plans for the weekend and calling off our tag-teaming babysitters for Saturday and Sunday, I was determined to make the best of my birthday. Gavin woke up Saturday seeming better and fever free...but still not himself. I was totally fine with staying home - and looking forward to spending time with all of my boys. Ed, I think, had a harder time getting over the disappointment of canceling our overnight and stayed to himself most of the day.

We decided to head out to get Brian a bike helmet. I didn't want to even show him his new bike until I had the helmet. Even though I grew up in an age of no helmets (ever!) - I want Brian to always associate bikes (and skateboards and scooters and rollerblades...) with wearing one. I wasn't at all surprised when we bypassed the children's section and had to pick one out from the adult sized helmets. Ed and I have big heads - and we apparently grow big headed babies. It's a plus, though, as Brian can have this helmet for a long time! And it has a little visor in front that can take the hit if he falls - which means that adorable face will hopefully stay protected.

The helmet was a big success - but Brian was NOT at ALL interested in the bike. I think he was a little scared. We're not going to push it...he'll let us know when he's ready!

As the afternoon went on I thought it might be safe to leave the boys for dinner and a movie. I checked with Miss Sara to see if she was still free and I made all the plans. The boys were down for naps and when they didn't wake up by 5:00, we woke them. I started to feed Gavin and he began to sob. Gavin doesn't cry that often so I knew something was up. I held him and we walked and rocked and bounced and he continued to cry and cry and cry. For me, it was the last straw. I'm not sure why I continued to salvage this birthday - I should have just canceled it altogether and pretended it wasn't even happening. Suddenly I felt very selfish - so I called Sara and told her not to come. I've never screwed a babysitter like that - I totally owe her one. She was completely understanding, but still.

I was not far behind Gavin and Brian going to bed.

Today was not much better! The antibiotic Gavin is on is ripping his stomach apart and the poor boy has had diarrhea all day. Ed went out for the afternoon for a drive and to have fun at a local casino - I guess to make up for his ruined weekend plans. On one hand I felt awful for canceling our getaway - but I could never have left with Gavin feeling this way. There were two bright spots! I got the total from all that I sold at the consignment sale - $176.60! I'm very excited as I really didn't have very much this go-around. I typically put in a lot more but I ran out of time getting everything organized and priced. The other bright spot is that the boys and I ended up having a nice afternoon today.

Gavin worked hard to stay hydrated...

And Brian worked hard to keep Gavin and I laughing by serenading us with his singing...

I definitely worked overtime to try to keep things light on Saturday...and I struggled to keep it together today...and then I couldn't anymore. Tomorrow is my Dad's birthday. Our birthdays are something we always shared. There are countless photos of us blowing out candles on the same cake. And my Dad never missed calling me (or any of his children) with his rendition of Happy Birthday.

How I missed that call this year.

As it turns out, this was a birthday I'd rather forget.

Mommy's Birthday Weekend!...

What's that you say? The numbers are in the wrong order? Oh...looky looky, I suppose you're right. My mistake.

Let's just let that one go this year, shall we?

This morning I woke up so happy - excited for my big birthday plans tomorrow with Ed. And I was feeling relieved - Gavin had turned a corner yesterday after a week of up and down fevers and seemed to be on the mend. This morning I went grocery shopping and came home with a gluten free, nut free chocolate cake. Miss Sara, Gavin and Brian sang happy birthday to me. I was very excited that Brian was singing Happy Birthday - that's a big deal!

Gavin was happy and smiling and even ate some chocolate cake!!

But just that quickly - he was sick. When his fever rose to 101.8, I called the doctor after giving him Tylenol. This had been going on too long.

By the time we got to the doctor an hour later, that fever had risen to 102.9. Gavin developed an ear infection in his left ear - likely yesterday as far as the doctor could tell - and there was an infection brewing in his right ear. I was shocked. We would have never known - Gavin rarely acknowledges when he's in pain. And I'm so bummed that my streak is over. I was pretty proud of the fact that neither of the boys had ever had an ear infection in their lives!!

We stopped at the pharmacy on the way home for his antibiotic (only his second time on one) and Motrin. I gave him a bump of Motrin in the car. When we got home I was SHOCKED to see his temperature reading - 105.1!!

Looks like Mommy's birthday plans are postponed. We were headed on a fun overnight and had plans to see a show. Gavin's smiling and happy, drinking and eating and his fever is normal at the moment - but who knows what will happen overnight. Unless he makes a miraculous recovery, it might be pizza and a DVD tomorrow to celebrate my 24th.

(Please - just go with it - I'm in a mood)

I will only post another blog this weekend if there are important updates on Gavin's condition. Please keep him in your thoughts - and cross your fingers that he doesn't have a repeat febrile seizure!! That would not be a fun birthday, that's for sure.

Happy First Birthday, Darcy Claire!

I had big plans for Darcy's birth. Her due date...a scheduled C-Section...was September 21, 2010. I remember stressing that it was eight days before Gavin's birthday. My biggest fear at that time was that I wouldn't be "present enough" for Gavin after bringing her home.

But then - May came.

God had bigger plans that year. Darcy never came home in September. Gavin had a great birthday that year and we celebrated how far he had come with a video tribute. And then I made a video for Darcy to chronicle her journey to meet us.

So today, I had big plans again. Weeks before today I knew that I wanted to be *mostly* alone. As alone as you can be with people in and out of your house all the time. I knew that I would give my "helper" the day off. I knew I wouldn't schedule anything other than one therapy and a routinely scheduled heater maintenance. That was it. When Brian's therapist told me she was on vacation this week and Wednesday would be free - BONUS!

But then - a miscarriage came.

God had different plans for how I would spend today.

And then - boogies came.

Yes...God had very different plans for Darcy's first birthday. First, Gavin's nose started running. Then, by late afternoon, Brian's nose was running. Then I found out that a new oven and dishwasher were being delivered...and installed...today. I was up with Brian four times during the night. This morning I woke up cramping and bleeding and exhausted. I had to be downstairs with the kids to wait for the early arrival of the delivery men. Walking into Brian's room I was met with explosive diarrhea. Great.

As soon as I got the kids dressed, the men arrive and immediately started with the noise and the sawdust and - well, we were banished to the upstairs. No time for me to wrap my head around breakfast or how long they would be or what I should bring upstairs with me. I just took the boys and went.

We ended up in the bathtub - or the "boogie bath" as I called it. It killed a lot of time - the boys could breathe better and had fun playing. Soon I heard a "Hello?" - it was the heater guy. Crap, I forgot he was coming. Unfortunately, he turned the heat on - high - to test it. The whole house was sweating. Not long after... "Hello?" - it was Katja stopping by for a visit and calling from the bottom of the stairs. I had to send her away - I so didn't want her to get sick!

By the time the guys all left - it was close to lunchtime. I don't think any of us were hungry - we all felt pretty terrible. Poor Gavin could barely breathe - which means he had a hard time eating. We did the best we could...and then it was naptime. No one slept - including me. As the boys were in their cribs sniffing and coughing, I sat in the kitchen staring into space. Out of the corner of my eye I would spot the three pink balloons I bought for my precious girl's first birthday "party". Then I remembered - the cake. I had meant to get a cake.

Crap.

Yes, God had other plans for today. Just like he had other plans then back then.

I tell you all of this not so you will feel sorry for me. Did I have a crappy day? Pretty much. Did I complain about it on Facebook? Um...isn't that what Facebook is for?

I tell you all this because...by the end of the day I realized...

God had other plans. And today, even though I wanted to be alone - it was likely so I could wallow. Instead, He surrounded me with distraction and reasons to snuggle with the boys and He helped me feel meaningful as I tended to their runny noses and crying eyes.

Today, I celebrated Darcy's first birthday by (s)mothering my boys with the same love I would have lavished on her. And as I was putting Brian to bed, he stopped and stared at my necklace. The heart charm that holds Darcy's ashes and is etched with her handprints...and, I swear this is true, he said "Darcy!"

I'm thinking that I like God's plans.

Happy First Birthday, Darcy Claire. Mommy, Daddy, Gavin and Brian love you so much.