Wednesday, April 24, 2013

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, 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'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.


  1. That is beautiful, Miss Sara. And all of your love WILL be with him. Forever. Love never dies. My heart goes out to you as you grieve.

  2. Kate, my blog readers have something special they want to send you. If are comfortable, please send me your address at

    Love and Hugs to you.

  3. Thank you so so much for sharing!

  4. What an incredible testament to an incredible boy. Thank you for sharing.

    Miss Sara, thank you for loving Gavin like you do.

  5. Praying for God to bless each of you in a way that only He can.

  6. Kate it seems Gavin had a kind of second mommie in Sara for when you needed her to be there. I cannot imagine what you all are going through but know that this little hero did more in his short lifetime than people do in 80 yrs or more..... May GOD continue to wrap His arms around you ALL.... Much prayers & Love continue... Thanks for sharing your beautiful family & story.... So excited to hear of the donations in Superhero Gavin's name..... Fly High Gavin. We will see you soon baby boy!!!

  7. Absolutely beautiful! Gavin and your family were truly blessed the day Miss Sara came into your lives. But, she received the blessing in return by getting to be Gavins "partner in crime" at school. Just another example of the love shown by his Mom who fought for this to happen, so someone would be there to to have Gavins best interests at heart. I don't think there is another person who would have given themselves heart and soul to this job more than Sara. I am praying for you all and thinking of you daily. I am also thinking of Ed and Brian and hoping they are managing as well as they can at this point. My heart still hurts and I am still in shock that this sweet little boy went from a runny nose to cardiac arrest! If I am feeling such a loss, I can't even imagine how you guys feel. I hope you cam feel all of our thoughts and prayers that are pouring out for your family every second. All our love from Arkansas, Brenda Rhodes

  8. Sending you love and prayers. Thank you for sharing.

  9. Add $40 more to the The Gift of Life Family House total! A PR agency worker that I work with wanted to do something, and I told her that she could donate to a few different places, and she chose them.

  10. Oh my goodness. To think that Sara is every bit as eloquent as Kate, and that she reveled in Gavin, and knows the spirit connection they had. Sara is God's way of providing a miracle here on earth. She is one of his angels. Love you all.

  11. This is not a phrase I ever use but I truly believe Sara was heaven sent, both for all the love and care she's given Gavin, and for the special bond you two have. Her eulogy didn't just come from the heart, it came from her very soul. It is SO heartening to read about all the money raised. And what Gene did. And all the good deeds on your Facebook page. I know today was hard, so hard, but I hope all these things have been of some comfort. XO

  12. Wow, those pictures are beautiful. Sara and Gavin both shine! So glad to hear about all that has been done in Gavin's name and memory. He truly does live on.

  13. Oh if that wasn't the most beautiful and heartfelf eulogy I've ever read, i don't know what is, Kate! Keeping your family and Gavin in my prayers.

  14. Today I delivered a 24 pack of play doh and 2 boxed sets of tools to one of the "special day" classes at my son's school. We live in San Francisco, and with underfunded schools teachers typically set up a "wish list" of things they need or would like for their classrooms. In my son's class, this has ranged from paper towels to an iPad.

    It dawned on me that the "regular ed" classes all have 22 or 33 kids, depending on the grade. The older (3rd-5th grade) special day class in my son's school has 8 kids. And, in all likelihood, those famlies are pretty financially stretched.

    So, I reached out to the principal, who got me in touch with the teachers. I was pleased to hear the PTA has been pretty supportive of their classes needs, and they've been working to integrate those students better into the flow of the school.

    Thanks, Kate, for the reminder of how to spread Gavin's spirit.


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