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
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.
After reading the book, Sara gave this heartfelt eulogy to her buddy, Gavin...
Just as Heaven blew every trumpet and played every horn on the wonderful, marvelous night Gavin was born, I am confident that that same composition was played last Sunday night when he entered through Heaven's gates to rest with all the saints in glory everlasting.
For nearly the past year and a half, I have had the honor of being Gavin's nanny. While none of us knew the journey we would go on, I am certain that God had a hand in choosing me for Gavin and him for me. In fact, I have never been more certain of anything in my life.
It indeed has been a journey. From the beginning, Gavin and I formed an incredibly close bond. We had a relationship that was unexplainable, but one that was felt between the two of us and the love that stemmed from it was visible to all who were around us. We understood one another and that understanding took us so far.
It was also that understanding that helped me learn Gavin as best as I could in the many months I spent at home with him, playing and in therapy. I never knew how important that time at home was until it proved to be so valuable when I started preschool with Gavin as his aide. Attending school with Gavin has and will always be the greatest privilege and blessing of my life. When the new journey of school started, Gavin continued to inspire me with his courage and strength as we met new friends, teachers, and therapists and figured out a new routine together.
Whether it was at home or at school, we did everything on Gavin's time, and I was happy to oblige for it was a constant reminder to take each day as it comes and not only celebrate the big accomplishments, but enjoy the small, simple moments as well. Recently, I was asked what my favorite part of being Gavin's nanny was. It was hard to pick just one, for there are so many moments, both big and small, that are so, so special to me. Like the time when Gavin consistently matched his colors. Or the day when Gavin stood independently for the first time, a moment which Kate and I only saw and then tried to recreate for a nearly an hour following. And then there was one of the most exciting days of all of our lives when Gavin really, really walked by himself.
Or just a couple of weeks ago when Gavin made the connection with a communication device. But there are also the small moments that are so treasured. Like when Gavin would gently place his head on my shoulder and rub my back with his little hand. Or when he would light up when I would walk into the room, smiling from ear to ear and giving the occasional clap. Or the rare, rare moments when we would lay on the floor, face to face, and enjoy the silence that was always present between us.
While our physical journey on this Earthly world has unexpectedly ended, I know that the overall journey will continue. No single other person has changed my life the way Gavin has. He has taught me more in his lifetime than I will ever learn in mine. He is my hero and the inspiration he has been to me will be with me all the days of my life. Gavin made me whole and I will miss the dearest and greatest friend I ever had and the other half of my old soul more than words will ever be able to express.
God bless you, Gavin David Leong, and may all my love always be with you.