Tuesday, May 21, 2013

What He Left Behind...

Today has been one of the hardest days since the hospital for me.  The grief that washed over me was unexpected and all consuming that I actually - gulp - asked for help.

The trigger?  Going to Gavin's classroom to clean out his cubby.  Sure, I could have had someone else do it.  Gavin's teacher even offered to leave it all on my doorstep so I wouldn't have to go in at all.  But I wanted to do it.  I needed to do it.  And I'm glad I did... but boy, it was hard.

The one thing that made it a little bit easier?  I was also meeting the wonderful women from the Chester County Intermediate Unit that have helped me with Gavin's Trust project.  Nancy Saul, who will be overseeing Gavin's Trust Project... Jessica Cratty who was Gavin's incredible service coordinator and a great support to me over the years... Miss Megan, Gavin's teacher... and Deb Hiller who makes sure that all the students in the county have everything they need from a seating, equipment and assistive technology standpoint.

On behalf of the many generous readers of Chasing Rainbows, I presented them with a check for $15,000.  I am hoping it is the first of  many large checks.  (You are always welcome to give - encourage your employers to match - tell your friends to donate - and spread the word!) The latest total is over $18,000 - but I left some money in my PayPal until it becomes another large check for me to present.  $15,000 is not a shabby start.  To every one of you who gave - from $1.00 to $500, thank you.  Collectively, we are managing to make the impossible... possible for so many kids like Gavin.
When we were deciding where to stand for this photo, some great ideas were thrown out - outside in front of the school sign... in front of flowers... in front of the cubbys... but I had my own idea.  It only made sense to me to stand right in front of the sink.  Gavin LOVED that sink.  And it was there, ten days before his death, that he made the connection with a communication device - asking for the water to be turned on in that very sink behind us.

He was on his way to great things.

It was very difficult to see his little friends.  One little girl in particular, who reminds me of Gavin in many ways.  She loves lights and music - and when I got there, she was laying on a mat playing with a toy that Gavin loved.  I got on the floor with her to chat and play and was so happy to get some smiles and some vocalizations from her.  Every morning when the bus would arrive, we would see her little face in the window - so happy to see her buddy, Gavin.

Gavin's walker was still there - along with some speech therapy items that we've used with him for some time.  Ed and I gifted all of those things to the classroom so they could be used to help his classmates.  His cubby was filled with his favorite cup, a change of clothes, the chest strap that my Mom made that was a wonderful tool to support him in chairs (and on rides on the boardwalk!).  Looking at every item broke my heart.

And then, Miss Megan showed me the butterflies.  Gavin's friends each made him a butterfly...

She also gave me a pile of papers and artwork and his laminated name card from his cubby and his birthday cupcake that was on the bulletin board and more.  Here are some of his works of art...
After I hugged everyone goodbye and walked to my car... carrying a bag of the things he left behind... the tears started to flow.  And they wouldn't stop.  All the way home... all the way inside... all the way to Gavin's room to the rocking chair where I once held him and fed him and sang to him.

I knew the tears were good for me - but I also felt a little bit out of control.  The more I tried to collect myself, the worse it seemed to get.  I texted my sister, Bean, and bravely asked for help.  I shocked even myself.  I didn't know how I was going to get through an afternoon with my adorable, energetic, full of questions and constantly chatty little Brian.  She texted back that she was on her way.  I breathed a sigh of relief... calmed myself down and by then it was time to pick Brian up from school.

Here is his school picture from this year that was just sent home.  He's wearing the shirt he wore to his big brother's funeral.
Bean saved me today.  She really did.  Brian had a great time with her.  They went to the carwash, the playground, walked her dog, Daisy, and took a trip to the grocery store.  Brian even ate his very first Ice Cream Sandwich at Aunt Bean's house and I heard about it all night.  She really saved me today.  It's worth mentioning twice.

I had a scheduled ultrasound for tomorrow, but called to see if I could be seen today since I had some free time.  I had some worries that seemed amplified given my emotional state today.  I knew if I saw that everything was okay with "Project Hope" - it would help me feel just a tiny bit better.

I was right.  The baby looked great.  
Heartbeat was strong, growth was better than expected and we even saw some movement.  You can see it here on the video...

Home again, with some time to myself, I tried to accomplish something.  Anything.  But everywhere I turned... I saw more of what he left behind.  Every room had a reminder.  Every other day these things made me happy.  His toys in the playroom... his shoes perfectly lined up on the laundry room shoe rack... his favorite books... his art projects in the window.  But today, they were daggers to my already fragile heart.  Tomorrow, I hope, I will love seeing them once again.

The things he left behind don't matter, though.  It's something none of us should worry about.  Gavin left behind so much more than things.  A family who loved him so much. A life that should have had so many more years.  Progress yet to be made.  A voice that I know we would have heard.  And a legacy that is unmatched by many adults.

Today has been a very hard day for this Mommy.  
I am missing my sweet Bugaboo tonight.


  1. I wish I could give you the biggest hug, but I'm a long way away from you in Spain, so you'll have to make do with a virtual one (((((Kate))))) xxx

  2. I wish words could make things better. But know that we are out here praying for you and your family.


    Stacy Waddington

  3. Sending my love & holding space. So sorry for your heartache.


  4. Kate you are so amazing... I am so glad Aunt Bean could come to the rescue!!! I love the video!!! I want the water turned on!! Priceless... What a sweet boy!! Still praying hard for your beautiful family... Much Love from Orlando!!! And for Project Hope. <3 <3 <3

  5. I can't even imagine how hard that must have been for you - continuing to pray for your family and for Project Hope as well <3

  6. Sitting with you in the tears, Kate. Sitting right there with you.

  7. Dear Kate, my heart is breaking for you. Continuing to hold you ever in prayer.

  8. BiBig prayers that tomorrow will be a brighter day for you. Choose HOPE.

  9. Kate,

    I'm so glad you accepted help...the gift of receiving http://thefivefacets.blogspot.com/2013/04/the-gift-of-receiving.html is one of the hardest, yet most powerful actions for givers like you...

    You don't always have to be strong, Kate, but you know that. And I think you've been doing a pretty terrific job of taking care of you, while still trying to take care of everyone else.

    Has anyone ever told you how much Brian looks like you?! His eyes have the same sparkle, and that smile! He will come through this Kate, with a stronger sense of self and life, because you are an amazing mom who is refusing to sugarcoat or hide death. I've known others who would just go forward acting as if the child never existed...so much conflict for the siblings left behind...But you are giving Brian one of the greatest gifts of all, honoring his brother's life...

    All the momentos from school. And the sink! I love the many symbolisms in your photo backdrop, especially the cleansing effect that comes with water...

    I'm so happy for Project Hope and for the success of Gavin's Trust Project!

    May your heart and mind find a moment's rest, a modicum of peace tonight...

    Hugs and healing, Kate...

  10. Kate, you inspire so many people including myself. First, thank you so much for thinking about others even though most people would be thinking about themselves this time after a great loss. Your heart is not only gentle, it is also so very generous. So many kids will benefit from Gavin Trust Project. Second, sometimes letting go and loosing yourself in grief is the best thing you can do for yourself. You've been so strong everyday for Ed, Brian, your family and your readers. You have so many family and friends that wish we could hug you every time we read your blog. You're heart is still broken and no who reads your blog will judge, and if they do, they're complete idiots! Third, baby Project Hope is amazing! ((((hugs))))

  11. I am here sitting with you! Let it out momma.. it is good!

  12. Such a huge lump in my throat and tears down my cheeks :( I am at a loss for words, except to say I will pray and pray and pray for peace in your broken heart. I know it will mend, although slowly. Please know there is so much love out here for you and you are never alone.


  13. I pray for you each and every day, amazing Mama. Please. Know that, all the way from MN, I cover your precious heart, your perfect HOPE, your love, and your boys in prayer. I absolutely. . .with every ounce of my being COVER you in prayer.

    Be Still and Know.

  14. Those days are so hard, so hard. But with time there will be fewer and fewer of those days.
    Praying tomorrow is a more gentle day for all of you.

  15. In that particular school photo, the ressemblance between the boys really jumped out at me.

  16. Gavin also left behind his spirit of love! In your home in the bus in his classroom in his cubby hole and it is there wrapping his arms around you brian ed just when you need it most.

  17. Gavin is a smart boy.

  18. Ps i hope you are able to get some hands on w special needs children in future when the time is right. Your heart is bursting with love for our wonderful children Gavin was a great teacher and they may be the key to starting the long journey in healing that broken heart of yours.jay xo

  19. Saying some prayers for you this morning.

  20. Gavin wasn't just on his way to great things, he was doing great things and he still is.

  21. I know that nothing could have eased the pain of that task, but I am so proud you came with a (HOLY COW) $15,000 check. Kate, that is absolutely amazing. It will create many rainbows. xo

  22. Sorry for your loss and try to take it easy, this is a hard thing for you and your family. Rest when you need it and ask for HELP every day if you can. People want to help. God Speed. Mary in NY

  23. I have the overwhelming urge to hug you! If it wasn't hundreds of miles away, I would. Or maybe that would be a bit strange, having a random person show up and hug you. Perhaps a cyberhug is best. :) Thinking of you and your beautiful family, and praying for Project Hope.


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