Sunday, May 19, 2013


I'm not sure what it is about the number five in our lives.

We were married in the fifth month of May.

It took five long days in the hospital to deliver Darcy... in the fifth month of May... in my fifth month of pregnancy.

We ended up holding her for five hours.

Gavin was five when he died.

And we went home without him after five long days in the hospital.

I don't know what it is about the number five.

But what I do know is this...

Today, it has been five weeks since Gavin was freed to Heaven on my birthday.  And still - five long weeks later - it seems like a dream.
Some days I can sit back and feel proud of how well I have handled it - in a way that, I hope, would honor Gavin and make him proud of me.

The hundreds of wonderful acts of kindness, projects, classroom activities and more in Gavin's memory were - and continue to be - so comforting to read.  One act of kindness, in particular, was so moving to us.  A reader named Christine read the story about Gavin riding the fire truck on the Ocean City, NJ boardwalk for the first time and knew just what she wanted to do.  She contacted the Gillian Family from "Gillian's Wonderland Pier" - where that very same fire truck lives - to tell them our story.  The owner, Jay Gillian, was so moved that he knew just what HE wanted to do.  He noticed in the photo that Gavin was riding his number 8 truck.  
So he had an artist come in to repaint the number 8 truck, the same truck that Gavin rode for the first time... and then he named the truck Gavin.
In a month or so, we will be headed down to Ocean City with some of Gavin's ashes to sprinkle in the ocean he loved so much.  And we will head to Gillian's Wonderland Pier to thank the Gillian family in person.

Donations have rolled in, too, which is another reason I should feel proud...

Last I checked, The Gift of Life Family House has received $12, 703 in donations in Gavin's name.  

The latest update from the Child Life Department at DuPont Children's Hospital is over $8,000 in monetary donations - and countless items from their wish list that are just too numerous to even quantify.

And CaringBridge has received $1,537 in tribute donations for Gavin.

I think I'm most proud of Gavin's trust project.  The newest total that will go to the Chester County Intermediate Unit is:  $17,801.69.

But there are days when I don't want to feel proud... or strong.  There are days when I re-read my eulogy and think, "Did I say that?"  The truth is, there have been a couple days where I've read it again and thought, "Kate - you are full of crap."

And there are days when I just want to cry.  All day.  And night.

But for some reason, unknown to me still, those times are infrequent.  I still get up - every day.  I still parent Brian - and comfort him in four year old ways.  At least once a day, but usually more, he sits down somewhere and pats the space next to him and says, "Come sit down, Mama.  Let's talk."  And I say, "What do you want to talk about, Brian?"  And every time his response is... "Why did Gavin have to die?"  And every time my response is the same... calm, factual, loving.  

"Ok," he answers.
And then, repeat.

But the truth is... I don't know why Gavin had to die.  It's a mystery to everyone, still.  As we wait and wait for the final autopsy report to come in, it gets more - and less - important.  The part of me that is angry wants to know.  I WANT TO KNOW!!!!  But the part of me that has accepted and knows I can't live in the what ifs and the angry feelings and the replaying every moment of the day before and morning of... almost doesn't want to know.

The truth is... Gavin is dead.  He is gone from this Earth.  But he lives on through all of us.  Not just those who knew him in real life - but ALL of us.  Every beautiful email (and I read them all!  There have just been too many to be able to respond to!) that says, "Gavin's journey changed the way I will advocate for my special needs son." or "Gavin has inspired me to {insert something awesome and amazing here}!"  or "I'm no longer afraid about {insert something stressful or scary here} because of Gavin." or, perhaps my favorite, "I became an organ donor..." or "I have an entirely different perspective about organ donation..." or "My family understands that I want to be an organ donor when I die."  All of those emails and stories and comments - they prove that beauty can rise from ashes.  

It has been five long weeks.  And one day, I will say it has been five long months.  And then five years.  And it will still feel like a dream.  Because, no matter how much time will pass...
 ...I will remember Gavin and every detail about his beautiful self like it was just five seconds ago.


  1. The things you have done to honor Gavin have been fantastic! Would you mind if I donated to charities and special needs facilities nearby? There are just so many wonderful causes to support. Of course, any donations would be on Gavin's behalf. This would just let Gavin's memories be spread across the country.

    Take care,

  2. Continued prayers. I love the last picture of Gavin on this post, beautiful.

  3. I love seeing every new picture of him. I continue to pray for you all. He is a beautiful boy.

  4. Kate I only just read an article this morning about how your children's DNA crosses the placenta and some of their cells live in you, and will possibly cross back to live in any subsequent siblings. So in a very real way Gavin & Darcy are still with you, Brian and your Hope Project (and through you all with Ed), just as Zoe is with me. I feel comforted by this, hope you do too.

  5. I seem to be following quite a few journeys lately. My husband worries that it brings me down or saddens me to the point of tears many nights. And tho it may do both of these things, in some sort of way it lifts me up. I feel connected to you and you family and project Hope. I have a special needs son who we know was our ultimate gift. After being told kids were not an option for us we discovered the professionals were wrong. We have had our fair share of medical emergencies (some worse than others) and 100% of my day is spent either caring/planning or advocating for him. And I wouldn't have it any other way. Some of your words and feelings could be spoken from my lips. Because of these beautiful children I have been following, I have slowed down my days even more, kissed my ultimate gift a few (hundred) extra times a day and prayed for answers as to WHY...WHY.... these things happen to good people. We may never get these answers, but I want you to know that even in your darkest hour, you are not alone. Somewhere, many miles away.. I am sitting here.. caring/planning/advocating with a lump in my throat and a pain in my heart for all these beautiful journeys. xoxo

  6. When I'm old enough to get my license, I'm planning on signing up for organ donation. I've already thought I'd do it , but Gavin has confirmed it to me that organ donation saves lives. Thank you Kate.

  7. (((Hugs))) you are brave and strong!

  8. There is a song from "The Lion King" that your post reminds me of. It's called "He Lives in You." Part of the lyrics are:
    "Hear these words and have faith-
    He lives in you, he lives in me.
    He watches over everything we see.
    Into the water, into the truth,
    In your reflection, he lives in you."
    Gavin will continue to live on in you and in all those whose lives he impacted. Continued prayers!

  9. I love the photos chosen for this entry! Glad also to hear a bit more acceptance creeping past the anger. Not that you shouldn't feel angry. Just I long for peace for you so that you can stay close to God and keep the faith!

  10. This is such a beautiful but heartbreaking post especially learning how little Brian is grappling with the "why" question. How does a mother who is shellshocked answer that question.

    We dont know but there is a higher plan and a lot of pain is sometimes required to produce the most beautiful rainbows through the rain.. And i know those beautiful rainbows will be chasing you and your family. jayxo

  11. Gavin's legacy lives in all of us that know and love him.
    Is your birthday on April 15th? Mine too.

  12. ((HUGS-HUGS-HUGS-HUGS-HUGS)) That fire truck named after Gavin is just so sweet!

  13. Kate-Just wanted to drop you a note to say that I continue to hold you and your whole precious family in my thoughts. I hope you continue to feel the love from all over the world as it pours in to comfort you as you continue to move through this new life that must seem like a bad dream that just never ends. I know you don't feel "strong" but to the rest of us that are out here watching and waiting for every new post, we KNOW you are strong. This quote reminds me of you:

    In the midst of winter, I found there was, within me, an invincible summer.

    And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”

    ― Albert Camus, The Stranger

  14. Hi Kate, just came to your blog for the first time from Jake and Elisa Taylor - After reading her post a bit of a shock to read your last post. I have not read any more than that but will another day. I am so sorry about your loss. I know it is hard in the beginning but it does get easier to bear, it would have to else how could human beings cope? But easier does not mean easy, and you can think you have your life under control and then read a blog post like this and the tears just roll.

    I lost my daughter 7 years ago, she would have been 8 in April. She had Jacobsen Syndrome. You can read a bit about her here - www.kendrameiring.blogspot,com. I found that I read a lot of blogs about loss and children with special needs after Kendra died, it was something I felt I needed to go through, I think I felt like these other moms expressed themselves so much better than I could. I don't read them any more unless I stumble on them by accident (I used to actively seek them out), I think it was part of the healing process. I wish you lots of strength to get through the coming days/months/years. I also had to try and explain why to my oldest son. It's hard.

    Talking about 5, my birthday is on 5 May and this year my mom-in-law passed away on my birthday.

  15. You're getting up each day, and that is HUGE.

  16. That was so beautiful. We visited Gillian's Wonderland Pier tonight with our 3 kids and unbeknownst to us our 2 little ones rode in the #8 fire truck tonight. When we got home and posted our pictures a friend of hours shared the link to your blog with Gavin's story. I was bawling my eyes out reading. God bless you and your family.


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