Wednesday, January 1, 2014

The Year We Lost Gavin and Gained Hope - 2013 Year in Review...

This past year has been a series of intense highs and even more intense lows, as you know.  And you've been here each step of the way.  Whether you're a long time reader...or one that joined us after the death of our son...thank you.  Your daily presence means a lot to our family.

Last year I posted the "Top Ten Moments to Remember From 2012."

This year?  Honestly, I could have posted fifty.  I settled for twenty.  I give you, The Top Twenty Moments to Remember from 2013."  Click any of the links to go right back to that day!

Brian's Speech Explosion!

Brian was "diagnosed" with a speech delay when he was three.  I wrote this post a year and a half later. It didn't take that long for him to start talking - it was just that he wouldn't stop.  And I loved every minute of it.  (Well, maybe... you'll see.)

Gavin's Trip To Children's National Medical Center

Gavin had genetic testing that came back saying he could possibly have Merosin Deficient Muscular Dystrophy.  We were crushed.  The typical way to confirm the diagnosis is through a sedated muscle biopsy - something I wished to avoid.  I was THRILLED when I was able to get Gavin in to see a world renowned expert in this rare form of MD - Carsten Bönnemann.  This post is about our trip - during the presidential inauguration - to see him at Children's National Medical Center in Washington, D.C..  Ed, Gavin and I made an overnight trip out of it and had a lot of fun staying in a hotel.  You can read about the outcome in this post.

The Sale of my Childhood Home

I had SO much to say about the only home I knew my entire life.  If those walls could speak.  As much as I loved that house - the home is wherever my Mom is.  And the memories from my life there will never leave me.

Miss Sara Resigns

We knew the day would come when Sara would need to move on.  She was graduating from a Masters program - and heading into an MBA program (clearly an underachiever!) - and was needing to complete an internship.  Her letter of resignation brought us to tears.  Lucky for all of us that she gave us tons of notice and was still working with us the day Gavin had his seizure and cardiac arrest.  I don't even want to think about what that day would have been like if I had been alone with both boys when this happened.

Gavin's 5K Day!

One of my favorite days was Gavin's big finish to a 5K goal set for him by his physical therapist, Miss Wendy, and Miss Sara. The principal of his school vowed that she would bring all the kids into the hallway to celebrate when he crossed the finish line... and she kept her word.  Gavin's accomplishment was truly celebrated that day and it was hard to hold back the tears.

Using Parents Magazine to Get More Eyes on Gavin

I was shocked - and very flattered - to be nominated by Parents Magazine's blog contest in the category, "Blog Most Likely To Have You Reaching For Your Tissues."  (And that was before things got really sad in our life!!)  I never expected that I would even come close to winning, so I decided to use the extra exposure to possibly find a diagnosis for Gavin.  The outpouring of mail and support and suggestions I received was incredible and I was so grateful.

Brian Was Star of the Week!

This post is all about Brian.  He was "star of the week" at school... but the post is really about how he shines at home. And it highlights the bond between him and Gavin.

Our Nephew, Dan, Got Married AND Had His First Kiss 

A Must Read.
I love my nephew, Dan.  I loved his wedding.  And I love this story.  I bet you will, too.

The Ups and Downs of Blogging

I love writing - and this "journal" has always been my way of chronicling our life... keeping track of every milestone and event... sharing things I've learned that have helped us in hopes of helping others... and, to be honest, a therapy tool. For me.  Mentally.  But boy - blogging can suck sometimes because of people who like to start stuff for no reason.  Ugh.

Gavin's Independent Connection With A Communication Device!

Just ten days before he died, Gavin had a major breakthrough and it was caught on video - thank God.

The Day Gavin Died

In one day, my son died... I turned 43... and I knew I was pregnant.

The Day I Told My Story To The World

When Glennon Melton asked me to write my "MamaStory" for her blog, "Momastery," I was honored.  I decided that this was the time to bravely reveal it all.  Come out of the closet, so to speak.  I wrote it and submitted it to her long before Gavin died.  She was concerned about posting it once Gavin tragically died... but I gave her the go ahead after I amended the ending.  I wanted to show people that no matter how many times you're knocked down - it's possible to keep getting up.

Revealing My Surprise

One of the hardest secrets to keep.

Gavin's Trust Project

I liked thinking that through my writing - and sharing things we learned along the way - that I was helping other parents, teachers and therapists to help the "Gavins" in their lives. Then Gavin died.  I won't be able to write about his progress anymore - but through this project I sure as hell can help other "Gavins" get the tools they need to make superhero strides!!  I continue to be overwhelmed with people's generosity and enthusiasm for this project.  It is near and dear to my heart.

Gavin's Pier

The day a reader helped us fulfill our wish of scattering some of Gavin's ashes from a Private Pier in Ocean City, NJ.  The Pier is on the beach where all of our oceanside memories were made with Gavin and we wanted to leave part of him there.  It was truly his favorite place.  I was never more grateful for my blog and my loving readers than I was on this day.

Realizing I Underestimated Their Bond

I thought I knew - I thought I got it - but once Gavin died, it was clearly revealed.

Brian's First Day At His New School

"Maybe you're thinking... 'This is pretty dramatic for a "First Day of School" post.'  And maybe it does seem that way.  But from where I sit - today symbolized so much more."

Celebrating Gavin's 6th Birthday

Knowing this day would be very hard on our hearts, we decided to celebrate what would have been Gavin's sixth birthday in a special way - and start a yearly tradition at the same time.

The Birth of Hope

Arriving one month and two days before her due date, our angel was dropped from Heaven and changed our world.

Brian Turns Five

Brian begins his fifth year... the year his brother didn't complete.  He continues to sleep in Gavin's bed, ask for the story of the day he died ever night at bedtime and sings Gavin's favorite songs to his little sister.  In many ways, Brian is the rock in our family.  We love this child so much!!  

I can't predict what 2014 has in store for our family.  All I know is this:  I will keep showing up and sharing our life.  I refuse to let our story be categorized as one of sadness and tragedy.  Our story is so much more.  It's a story of possibilities... never giving up... overcoming... and never losing hope.

Welcome to the year of hope.  I'm glad you're here... and I thank you, from the bottom of my heart, for loving our family through the hardest year of our life in 2013.

Happy New Year to each and every one of you - wherever you are in the world.  We are all connected now by this little boy who changed a little bit in all of us for the better.


  1. Oh my gosh... Miss Sara's letter... She wrote about "three wonderful girls before me... and there is going to be another wonderful girl that will take care of Gavin and Brian..." Ummm, yeah. Her name is Hope. She might not KNOW how much she's loving Gavin already but clearly Brian will make sure that she knows every Gavin story. And Brian will have a sibling to grow with and take care of... to love and be loved by... I think Miss Sara was more prophetic than she ever could've known!

  2. Kate, in the end of the year review you mention " for loving our family through the hardest year of our life in 2012.". You meant 2013. :) Mommy brain. :)

  3. Just went back and read them all. Happy new year to your family. :)

  4. Dear Kate...such a mix of emotions as I read through your year in review. So many changes for you and your family, but it all brought you to the Hope of a New Year waiting with growth and happiness. But also a new year to keep honoring & remember Gavin so lovingly as you do. I do not have a facebook account, but I do check out your facebook page just so that I can see your dear babies' photos. And I just wanted to say that the sweet photo of Gavin for "Throw-back Thursday"...definitely made my day and made me smile. Thank-you for sharing.

  5. I discovered your blog back in August right after I had my third baby. I've been a loyal reader ever since, but I hadn't gone back and read too much before August. I loved this post. I clicked on every single link and I've fallen in love with your family even more. Kate, you are an amazing woman and an incredible mother. I have learned so much just from reading your words. Thank you for reminding me to stay positive and live each day to the fullest, for you never know what tomorrow may bring. Keep writing and sharing. You are amazing and you have a beautiful family.


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