Tuesday, April 22, 2014

Dear You, What a Year...

Right about this time last year, Ed and I were headed to bed after a very long and overwhelming day. On this day last year, we greeted over 400 people at Gavin's funeral. 

Actually, we greeted close to 800 people - 400 the night before at the "viewing" and over 400 the day of the funeral. It was a surreal experience - and much of that day and the days (ok, months) following are still a blur.  One thing that is not a blur?  The unbelievable outpouring - of so many things. But mostly of love.  We felt like our little family was surrounded by love.

Dear You,

What a year.

Before Gavin died, I faithfully wrote my journal entries to chronicle every bit of his life... and ours.  Most of my readers were long timers... they had been with me since Gavin was a baby.  I never wrote to "gain followers"- I wrote because I needed to.  I always said that this blog was like my children's "baby books" - a way for me to remember every detail in words and pictures.  As you can imagine, I'm so grateful that I have Gavin's entire life chronicled.  Especially for Brian and Hope to read one day.  I shared everything along the way - what we tried with Gavin and what worked and what didn't... what we fed him... therapies we did with him... all of it.  I always hoped that sharing these things would help other people who may not have had access to the resources that we did.  Along the way, people hopped on board and became faithful readers.  It all happened very organically.

When Gavin died, the avalanche of attention was overwhelming.  Suddenly it was impossible to answer everyone's emails and questions and acknowledge requests. I would get thousands of emails - sometimes in a day. Packages arrived on our doorstep constantly.  It was all so nice, it really was - but it felt terribly awkward to be thrust into a spotlight.  People wanted so much to give us things - I suppose to make me (or maybe them?) feel better about Gavin dying.  In a fog of grief and pregnancy early on, I said "Sure, you can send Brian a gift." or "Sure, you can send us a blanket." or "Sure, here's our address for a card." - but then I woke up and stopped all of it.  We didn't need a thing.  From that moment I directed all gifts to be donated to local hospital Child Life departments.  People's generosity and thoughtfulness astounded me.  It still does!!

I knew shortly after Gavin died that I wanted to help those that helped him.  That's when "Gavin's Trust Project" came into my head.  Again, I was blown away by how all of you embraced that.  In a very short time, $25,000 was raised. New Special Needs classrooms were opened and furnished. Children were given equipment and assistive technology that they needed.  It was unreal.  I couldn't believe it was happening - any of it.  It had nothing to do with me.

I started getting letters and emails in the months that followed.  People started sharing their darkest secrets... their biggest struggles... their desperation.  It became apparent that my journal about my little family and special needs son was doing many different things for many different people. Touching them... changing them... inspiring them in ways that I never could have predicted.  It had nothing to do with me.

One night I remember laying in bed with Ed in the dark and saying, "I have no idea what is going on - but it has nothing to do with me.  It's like I'm being used for something bigger than all of us."

I remain completely humbled to be on this journey.  I am still the same person.  I still write the same way (with lots of run on sentences, over use of the dot.dot.dot., and WAY overuse of exclamation points!!!  I still write about mostly the same stuff - my family, my thoughts and feelings, and our experiences.  I am just as amazed as you might be that so many people come here every day.  It has nothing to do with me.

But, as always, the good comes with the bad.  When you have more eyes on you... many will be critical.  I have had some pretty crazy stuff said (and often made up) about me.  That I ask for free things and even money from readers (outside of money for any charities or fundraisers) - which couldn't be further from the truth.  Actually, not only have I never asked anyone (or needed to ask anyone) for a dime - I regularly turn down offers to monetize this blog... or blog to get free products or services in return.  That I "overshare."  Well, duh - most bloggers who write about themselves and their families are guilty of oversharing.  And guess what - as a once really awful alcoholic, I am so glad that I'm not keeping that a secret from the world.  After what we've been through, I'm kind of an easy mark for wanting a drink.  Let's be honest.  (I don't want a drink, for the record, but I have every reason to want a drink!)  Because I put it out there - and because people recognize me all over town - it's doubtful you'll see me trying to slip into a liquor store!  A nice benefit of oversharing, if you ask me!  It's been said that I asked for a free stay in a shore house on my Facebook page.  Actually, we were IN a shore house - I asked for my FAMILY if anyone was renting their house that same week for THEM.  But when my sister told me they found a place on their own, I took it down. My favorite remark was that we must have gone to Disney on credit cards since we're always asking for money.  I'm still laughing about that one...

But mostly, this year has been overwhelmingly positive.  I have met wonderful people, been inspired by your incredible stories, felt privileged that you would all share so much with ME, and that so many of you have cared about our little family... and fallen in love with Gavin.

Losing my little boy was the worst thing to ever happen to me - and it will always be the worst thing to ever happen to me.  Continuing to share about him - or work on projects like furnishing the emergency room with toys or trying to build the all abilities playground - are my ways of keeping his memory alive, yes.  But mostly it is my way of giving thanks and trying to inspire hope in others.  We had a lot of support during Gavin's life - from teachers, therapists and medical professionals.  I want to give back to them to ensure they have what they need to continue to help other kids like Gavin.  And we were lucky enough to have the financial resources to get things for Gavin that he needed.  I'm grateful for the chance to help other families get the things that they need for their child but may not be able to afford.  And I love being able to share what I learned along the way - hoping that other families can benefit from our experiences.  

Dear you, on this day last year we said goodbye to Gavin. And one year later, on the same altar in the same church - we baptized Hope.

So yes - I do profit from this blog.  In a very big way.  I get to sit back and watch something amazing happen every day.  It's not me - I promise you.  I know this is much bigger than me and my run on sentences and my over use of dot.dot.dot and exclamation points!!!!!!  This journal has turned into the chronicle of hope.  

Think what you want about me, I can take it.  But please - if you never remember anything else - remember this:  there is always hope.  Even in your darkest hour when it seems your life will never get better.  Even if you lose your child.  There is always hope.  None of us are promised anything in life. Each of us are on our own journey to learn our own lessons. Gavin had his own, amazing journey - and then he had to go. Part of my journey is to learn how to live without him and show Brian and Hope that you can still find joy after you experience a devastating loss of any kind.

Thank you for sticking by me this year.  



  1. So beautiful. You're an amazing person Kate x

  2. It is amazing how you write with such a positive outlook on life even after everything! I myself have never lost a child but a dear friend of ours lost his son Gavin 3 years ago last January very suddenly, he too was special needs as well. My son and Gavin were in the same class at school and it was so hard to explain to a 4 year old why he wouldn't see his friend again or why Joe was sad... I applaud you as a mother, a woman and a loving parent! Keep us the positive blogs!

  3. Kate - I said the same thing on my blog last year at about this time--that I felt swept up in something far bigger than myself, an event that would have repercussions far into the future that we couldn't see. I called it The Gavin Effect, and likened it to a tsunami of kindness. It is something amazing, and something on-going. Sometimes, I think Gavin's death was not an end at all--but the beginning of his true work here. Even if over the years the effect begins to fade, the echoes of all that has already been done will reverberate and continue to ripple outward. Gavin was a miracle every day of his life, and he continues to work his miracles through this community every day.

    1. It seems like a lot of people are coming to my site looking for this article, so here is the direct URL: http://thegoosesquill.wordpress.com/2013/04/25/the-gavin-effect-a-tsunami-of-kindness/

    2. If you are/were looking for the direct link (I've seen a lot of traffic from here), the direct URL to the article about Gavin is here: http://thegoosesquill.wordpress.com/2013/04/25/the-gavin-effect-a-tsunami-of-kindness/

  4. We love you and your family, Kate. Thank-you for continuing to share your beautiful children with us. Always be proud of yourself for what you have done and continue to do. Hugs to you.

  5. U r amazing ... thanks for being a source of knowledge to the other parents out there ... ur story is awesome thanks for sharing it w us

  6. I'm still relatively new to your family's story, but every time I read something you write I am moved beyond words. You and your family are inspiring. I have a very soon to be 14 month old son and am a full time college student. My theatre department friends and I are performing a play for parents and children in order to raise money for a playground like the one you have described.

  7. Kate
    I'm from Australia and have CP and a whole bunch of other special needs of my own. I'm working on a project inspiring people (specifically people with disabilities) that they can always chase their dreams they just might need a different way of chasing them. I have used Gavin's story and how he touched and inspired me as an example. Can you let me know if this is okay? Thanks.

  8. Thank you for all of your sharing. There are always going to be people who make up and say bad things about you. That will never stop. But thankfully, God can give us the grace to ignore what is being said. Some people just need to have something bad to say about people. I am so glad I found your page recently. I am enjoying reading your blog and learning about your entire family. I work with developmentally delayed babies, toddlers, and preschool children. I love it. Thank you again for taking the time to share about your family. I think it is amazing that you have chronicles the life of Gavin and your other children. Thank God for your adorable gift of Hope. God bless all of you.

  9. I look forward to your blog. You and your family have a special place in my heart, I try to do good things each day to honor Gavin. You and your family are gifts from God .You have no idea how you and Gavin and your family have helped my family and many others. God Bless you Kate and never stop "oversharing" or !!!! :)

  10. Kate. What a year! Thank you for enlightening us with your over-sharing. I have read every word, since before Gavin left this world. Prayed for you, about you, with you. Rejoiced when Hope joined this world....got teary when fishy died too.
    You have such a way with words - keep using them- you are right, this is a thing that is sooo not about you. You are reaching and teaching people.

  11. I am one of your loyal readers, whose life you've changed, just by being you. You are an inspiration to me, to stay positive, hopeful and focused on the good in the here and now. I have several chronic illnesses and it's so easy to fall prey to depression. Thank you for sharing yourself with the world!

  12. I don't think I can ever read your story without crying, and still finding so much beauty in the sadness.


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