In Lieu of Flowers Update...

Today has been rough.  With a little convincing, Brian returned to school, giving us a bit of a break for a few hours.  Ed started opening the mountain of cards while Sara and I started putting the mountain of items I brought to display at the funeral back in their homes.  We also started thinking about child sized urns - which we quickly decided to "shelve," so to speak, as it was too overwhelming.

But there were some highlights today!!  I wanted to update you on how much has been raised so far for our three charities.  We (and each of the charities!) are overwhelmed with gratitude.

CaringBridge has received a total of $1,537 in tribute donations so far in Gavin's name.  These donations help to keep this free website running and help patients and their families stay connected during difficult times.  And even long after, like my CaringBridge site for Gavin.  Once we brought Gavin home from his long hospitalization as an infant, I couldn't stop writing.  This is where all of my writing started and because of that I have such a heart for all of the wonderful people at CaringBridge.

The Gift of Life Family House in Philadelphia has received 76 gifts totaling $5,428 so far.  Ed and I can't wait to go take a tour of this wonderful, volunteer-run house.  Much like the Ronald McDonald house, families can stay here for a very small fee (and get home cooked meals every night made by volunteers!) while their loved one is nearby at a local hospital getting an organ transplant.  Your donations help keep the lights on, the water running, the pantry stocked and the pillows fluffed and ready for weary families.  Obviously, this is very important to us as we know first hand what organ donation means.  I can't imagine not being able to stay with my child during a hospitalization such as this - especially if we were far from home. I'm so glad the Gift of Life Family House is there as an option for families.

Nemours A.I. DuPont Hospital's Child Life Department has been happily overwhelmed.  They have received over $7,000 in monetary donations.  And here is a note from Jenn, who helped Gavin and Brian say goodbye to each other in a beautiful and creative way about the tangible items they've received (see this post for the list of needed items):

We have been extremely overwhelmed with kindness and Gavin’s spirit!!  People have been donating very thoughtful gifts.  For example, some adorable wooden beads were donated and they were not just any beads, they were butterfly beads.  Also, many copies of The Invisible String have been donated already, which makes me so happy.  Honestly, we only had one copy of the book last week and I have always wanted to be able to give this book to families when using it.  On top of these items, we have received a lot of monetary donations and it has just been so truly unexpected and amazing.  So very, very special Gavin is.  I like to think he is helping these people choose the perfect items for us.  We feel so incredibly thankful.

Also, Meghan from hope.joy.photography, who designed the funeral programs and had them printed had opened a pay pal account when people wanted to pitch in for the programs.    (She did a wonderful job and I got a ton of compliments on the programs which I will be sharing here at some point.  Please support her Facebook page using the link above?)  She collected $3,841.96 over and above the cost of the programs.  Ed and I are deciding which charity to give this to - we have some ideas and will be sure to post that as soon as we make our decision.  We are so, so grateful to be able to give this money on behalf of many blog readers who have been beyond supportive and kind to us over these last couple weeks.

And a big "Love Bomb in a Box" arrived on our doorstep today.  Feel Good Frames, after reading our story, decided to host a "24 Hour Paint For Kate" in which they would give proceeds from every frame sold to... me!  You can read about the "Paint for Kate" they did HERE - and please visit and like them on their Facebook page.  They sent us a box filled with custom frames - one for each year of Gavin and Brian's lives - that will look magnificent on our Christmas tree.  The box arrived shortly after Ed and I were discussing the funeral costs.  She enclosed a check for over a thousand dollars from her 24 hour project.  People amaze me.

And one last thing.  I mentioned before how Gene McGonagle - the owner of Ambler Flower Shop - wanted to donate all of the funeral flowers after reading our story.  I learned something yesterday that I wanted to share with all of you.  If you look at the photo from the church, you'll notice a little white angel on the right as well as branches coming out of the arrangements.  The angel was a way to honor Darcy Claire.  And the branches?  Gene came to our house in the dark of night to clip branches from the cherry blossom tree we have in our yard to memorialize Darcy.  They were just starting to bud when he clipped them.  (And as we backed out of the driveway on the morning of Gavin's funeral, I saw the first blossoms.)  Seriously... I was completely overwhelmed with emotion about this act of kindness.  Please support this wonderful human being's business and like his Facebook Page, too?  

These "In Lieu of Flowers" requests... and my birthday project on the Chasing Rainbows Facebook Page (which I am going to start really looking at in a day or two) are bringing me such comfort.  It makes me feel good to know that we are helping others during this tragic time in our lives.  So, thank you - your generosity both of spirit and dollars amazes me.

After I gave my eulogy (I had to go first so I wouldn't get too emotional listening to the others!) Miss Sara read a final book to Gavin on my behalf.  "On the Night You Were Born."  I have read this book to Gavin since he was an infant and it has very special meaning to me.  Now more than ever.  It goes...

On the Night You Were Born

Nancy Tillman

On the night you were born,

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered,

"Life will never be the same."

Because there had never been anyone like you...

ever in the world.

So enchanted with you were the wind and the rain

that they whispered the sound of your wonderful name.

The sound of your name is a magical one.

Let's say it out loud before we go on.

It sailed through the farmland

high on the breeze...

Over the ocean...

And through the trees...

Until everyone heard it

and everyone knew

of the one and only ever you.

Not once had there been such eyes,

such a nose,

such silly, wiggly, wonderful toes.

In fact, I think I'll count to three

so you can wiggle your toes for me.

When the polar bears heard,

they danced until dawn.

From faraway places,

the geese flew home.

The moon stayed up until

morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are

and you wonder who loves you, how much and how far,

listen for geese honking high in the sky.

(They're singing a song to remember you by.)

Or notice the bears asleep at the zoo.

(It's because they've been dancing all night for you!)

Or drift off to sleep to the sound of the wind.

(Listen closely...it's whispering your name again!)

If the moon stays up until morning one day,

or a ladybug lands and decides to stay,

or a little bird sits at your window awhile,

it's because they're all hoping to see you smile...

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend,

and it never will, not ever again...

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born.

In Lieu of Flowers - Part Two...

Today has been a very difficult day for me and for Ed.  This morning, after a fitful night, we met with the funeral director.  The only thing that made it easier is that we know this funeral director personally.  He handled the arrangements for my grandparents... my father... and our sweet daughter, Darcy.  It's comforting to know that someone we love is in charge of Gavin's body.

The funeral arrangements have been 100% confirmed.  Everything will take place at Epiphany of Our Lord Church in Plymouth Meeting, PA.  There will be two visitations - Monday night from 6-8pm and Tuesday morning from 9:30-11.  Then there will be a funeral mass and celebration of Gavin's incredible journey starting at 11am.  I have one small and seemingly silly request.  Please try not to wear any perfume or cologne or anything scented. I was always very protective of Gavin around strong scents as it often caused a skin flare up.  It's also dangerous for kids with respiratory issues.  I think if I smell things, my instinct will immediately go to protecting Gavin which will lead me to remember he's not there which might provoke a meltdown of epic proportions.  So... thanks for your understanding.

There are so many decisions to make and things to plan - it's truly overwhelming.  On one hand, staying busy is keeping me upright.  On the other hand, I'm stretched so thin and am afraid I'll forget important things.  I have been very grateful for the outpouring of support and generosity.  Late last night, while trying to read just some of the thousands upon thousands of messages and comments and emails, I happened to open one from Gene McGonagle - the owner of Ambler Flower Shop.  To honor my birthday request, he said, he wanted to pay it forward and donate all the flowers for the funeral.  He even drove to our house today to walk us through the planning.  We chose a lot of blue hydrangeas.  Gavin looked the most handsome in blue.  I also have offers from videographers that I need to comb through - I mentioned that I wanted to videotape everything and share it online one day.  One, because there are so many people that are invested in our son's story and it's only fitting that they be part of the final  celebration of his life.  But mainly my wish is to have something for Brian to see when he gets older.

I also started to see glimpses of some of the birthday projects people have been doing.  Teachers are having their entire class do projects in Gavin's name... others have written about small acts of kindness... everything I saw overwhelmed me with gratitude and lifted my spirits.  Gavin was such a special child with such a giving spirit - I know all of these acts are making him so proud right now.

Today I would like to tell you about the two other organizations that mean so much to us that we would love for you to consider donating to in honor of Gavin.  The first one is Gift of Life Family House.  But before I tell you about this organization - let me tell you some incredible news.

Gavin's kidneys - both of them - were transplanted into a 40 year old man last night.  Today, he's recovering nicely.  We are rejoicing with him and his family today.

If this man received his transplant in an area away from his home, the Gift of Life Family House would provide a "home away from home" for his family during and after his transplant.  It's similar to the Ronald McDonald house in that they charge a very small fee for a place to stay, meals, support and more.  Here's a short (and emotional!) video that can explain more about who they are and what they do... including offering home cooked meals by volunteers every night!  

From the Gift of Life website:

Gift of Life Family House serves as a "home away from home" for transplant patients and their families by providing temporary, affordable lodging, home-cooked meals and supportive services to those who travel to Philadelphia for transplant-related care.

Families staying at Gift of Life Family House are asked to pay a nominal guest fee of $40 per night per family in exchange for their room, meals, secure parking, van transportation to/from area hospitals, communal kitchen and living room areas. No family is turned away due to their inability to pay.

For online contributions:

http://www.giftoflifefamilyhouse.org/support/giveagift/

Or direct
 https://secure.acceptiva.com/?cst=841eb8

By Mail: 
Gift of Life Family House 401 Callowhill Street Philadelphia, PA 19123

Thank you again for selecting Gift of Life Family House as the beneficiary for Gavin’s memorial contributions.

Now I have something to confess.  Last night, when we got the news that Gavin's liver turned out to be unusable for transplant - I was completely shattered.  Like, collapsed to the floor in sobs kind of shattered.  I cried for the three year old little boy... I cried for the hope that I had... I cried for Gavin.  I really had to dig deep to change my focus.  And then... I opened an email titled "From a Transplant Mom" and read this: 

When my son was 9 months old, he received 5 organs- stomach, spleen, liver, pancreas and small bowel. So many nights I have dreamt what must have happened on the "other side" of our story. What that family must feel or even how the process works. I think being the mom of chronically ill child, the details and procedures become very important. Or it could simply be the control freak in me that longed to know. Your words gave me peace knowing that your son was carried into Glory a HERO. I could hear the applause as I read. We don't know our donor and we may never know whose precious child saved ours, but I felt so connected to you and your words. We are very involved in our local organ bank and transplant world here in Dallas, but I have never heard a donor family describe with such grace- "it was our privilege to wait" -wow. It's easy to be on my side and receive the call, but to know you are comforted by your giving just spoke to me. 

Your son and your decision did save someone's life. Maybe his organs didn't get transplanted, but someone standing in that hallway clapping for your hero will remember him and maybe they will have the opportunity to save a life, someone reading your blog who never thought of organ donation will sign their card and send it in. And a mom like me, who has finally found normal after fighting so hard for my baby will remember your incredible son and his gift and hug a little tighter and give thanks more often. 

Your sweet Gavin changed the world.

 It would mean the world to us if you would make a contribution (even five dollars!) to the Gift of Life Family House in Gavin's honor.  Down the road, we will get a letter of the total donations and all the donors names (without your donation amount!).  We will always have a special place in our heart for the Gift of Life program.

Whether you give or not, I hope everyone is inspired by our journey through the organ donation process.  It is my greatest wish that part of Gavin's legacy is helping to change people's perception of organ donation... opening people's eyes to the great need... and motivating them to become an organ donor and express those wishes to their loved ones.  You, too, can become a superhero like Gavin Leong.

Become an organ donor now by following this link:

http://www.donors1.org/registry/

The final organization we are asking for donations in lieu of flowers is one that is important to Gavin and me.

CaringBridge

When Gavin was two months old, he developed RSV and Botulism.  (To this day we don't know how he got Botulism)  In total between two hospitals, the two of us spent 10+ weeks side by side in a hospital room.  Two weeks in, a volunteer stopped by our room... lent me a laptop... and told me about CaringBridge.  It's a free site (run on donations) for people to create a personal page where they can update friends and family on their health issue.  I started writing one night - wrote every single day - came home with Gavin and kept writing - and, as you know, I never stopped.  CaringBridge is what accidentally made me a blogger. 

You can click here to get to my original CaringBridge site.  In those first months with Gavin - dealing with hearing aids and feeding tubes and night oxygen and nursing care and on and on... CaringBridge became my lifeline.  I would pour my heart out or I'd ask for advice or I'd celebrate one of Gavin's "smilestones" as I called them... and people would be there.  I barely left my house in those days, but because of CaringBridge - I never felt alone.  

Along the way, I became friendly with some of the staff and they always made me feel like Gavin was their special star on the site.  They even featured our story on their website...

We would be honored if you would consider donating to CaringBridge as a tribute to Gavin.  You can even go right to Gavin's CaringBridge page to make a "tribute donation" - and, again, no amount is too small.  Small acts of kindness often make the largest impact.  

Gavin, Mommy is so heartbroken.  This still doesn't seem real.  But I'm trying to do right by you, as always, and I will make sure that no one ever forgets you.

You have my word, Bugaboo.

Our Sweet Star...

Brian is the "Star of the Week" at school this week!  He's a star every day of the week around here... but this week he gets extra appreciation at school.  Today he got to bring in one of his favorite books to share with his class...

This Sammy The Seal book was mine when I was little, so it was extra special to me that he shared it with his friends today!

Gavin and Brian love books.  LOVE them.  And thanks to a long time reader, adopted Grandmother and retired schoolteacher... our wonderful Miss Barb... we have years worth of books.  Four bookshelves filled... and boxes and boxes of extra so we can keep switching them up to keep things interesting.  Miss Barb was looking for a home for her huge collection... and we were the VERY lucky and VERY grateful recipients!  Books are treated like gold in our house.

Brian has been "reading" to us lately which I love.  He tries to remember the story - or he'll make up his own.

 I especially love when he "reads" to Gavin.  They love hanging out together in the new "book nook" I set up.

I love when Brian does anything with Gavin.  It warms my heart when he tries to play with his big brother or engage him in any way.  But it means even more to me when Gavin sticks around and enjoys his brother!  Sometimes Brian is just too much - too loud - too "in Gavin's face" - and he crawls away as fast as possible.

The  mornings have been very cold here and we all bundle up and wait in the garage for the bus to come for Gavin and Miss Sara.  Gavin isn't keen on keeping mittens on, so after he is bundled in his coat and hat I wrap one of Ed's fleece jackets around him and tie the arms behind his chair.  

Brian is our entertainment in the morning and keeps warm by running around like he's on fire.

This morning Brian wanted to help push Gavin onto the wheelchair lift which just about made me cry.

I've been told that Brian is very sweet in school and helpful when some of his friends need assistance.  I hope this never changes.  I hope that having Gavin as a brother has already influenced him in the best and most empathetic ways possible.

My little star with a heart the size of his Daddy's.

Speaking of which...how handsome is Daddy in his new headshot for work?  

I love my little family.

**Please take a moment to vote for my "Share Your Heart" entry on CaringBridge!  I need about 200 votes to catch up to the current lead.  If each of you who reads this blog votes, I may pull it off!  The winner with the most votes by March 6th wins two iPads!  I'm hoping to win so I can give one away to one of YOU on this blog!**

  Click this sentence and vote for "Love Bombing"

Share Your Heart...

As many of you probably know, I have a lot of love and loyalty towards CaringBridge.  CaringBridge is where my "blogging" began... in the corner of a hospital room next to Gavin's crib when he was two months old.  For the first few weeks, I used the site just to update friends and family to let them know how our very sick baby was doing.  But it turned into so much more.  CaringBridge allowed me to share my fears, my thoughts, my joy and sorrow...along with Gavin's health updates, his progress and the exciting day, months later, when he finally came home.

I thought that was where it would end!  But when I came home and we added nursing, feeding tubes, therapies, and multiple medical issues to our daily schedule - I realized just how important writing was to me.  It was my therapy.  It helped get everything out of me which, in turn, allowed me to be a happier, more positive Mommy to Gavin.  It also connected me with other parents who were going through similar challenges.  They even featured our family's story on their site.  (You can see that here)

I started on CaringBridge on January 24, 2008 and left there for this blog on May 31, 2011.  I am in touch with some of the CaringBridge folks periodically and am always more than grateful to support them in any way I can.

So, when they asked me to submit an entry in their "Share Your Heart" contest, I was thrilled!  Entrants  submit a photo or video and a short write up about a way they "share their heart" with loved ones.  In my entry, I explained how I  "Love Bomb" the boys.  You can read more about my Love Bombing days here.

Anyone is free to enter - and the entry with the most votes when the contest ends March 6th, 2013 wins TWO iPad minis!!

CaringBridge did not ask me to promote or share this on my blog.  If you notice, I very rarely (if ever) promote anything outside of our family.  I have a hard time saying no, so if I never do it at all - I never have to pick and choose who to say yes and no to.  Get what I mean?  But because CaringBridge has been such a big part of our lives, I am more than happy to share this contest here.

Click HERE to get to the voting page.  It will ask you to connect through Facebook.

There's one more thing...

If I am to win, I would like to "Share My Heart" with one of my readers by giving away one of the iPad minis here on my blog.  I don't know how I'll do it yet, but I want to come up with a contest of my own.  So, head on over and vote - the iPad mini could end up being YOURS!!

Oh, and this is also how I share my heart.  Nightly dance parties in the kitchen.  These boys have skillz...

While you're in the voting mood... don't forget to vote for Chasing Rainbows in the Parents Magazine Blog Contest! We're in the final stretch!!