Side by Side...

Before Gavin died... as in, just DAYS before, he was on fire. Something clicked - we could see it - and he suddenly started to walk more, interact more purposefully and make attempts to communicate. We had such high hopes for the future - for ours and for his!! I know that much of Gavin's success is owed to the therapists and teachers along the way that worked with him - and taught us how to help him. We have always had nothing but respect and love for these people - many of which are still a big part of our lives!! Before he died, Gavin was in a brand new special needs preschool classroom. They used space in our local Kindergarten Center and Gavin's little class was welcomed by the whole school.

 I remember his first day meeting his new teacher, Miss Megan, with a smile on his face.

And I remember one of his last days there. The kids from the Kindergarten Center came out of their classrooms and lined the hall to cheer for Gavin as he walked down the hall. It was such a huge day. Ed took time off from work and we kept Brian out of school and we all celebrated this incredible accomplishment. I could cry just thinking about it. 

Gavin was so, so proud of himself as he cut through that ribbon and was hugged and kissed by all of us. 

Last week, there was another ribbon cutting at the Kindergarten Center - and we were invited to attend. They were officially introducing two brand new inclusive preschools to our county, Chester County, PA! One will be Gavin's old classroom, which I am so proud and happy about, and the other will be housed in our local public high school. Hope and I were dressed in blue to represent Gavin on this special day.

Representatives from the Chester County Intermediate Unit (where Gavin received his services when he was alive), the school district, the principal of the Kindergarten Center and Warren Kampf, one of our state representatives, were all on hand for the ribbon cutting ceremony.

The classrooms will have typically developing and special needs children side by side - learning together and learning from each other.

It was a very special morning, for a variety of reasons, and I was thrilled to have my Mom there with Hope and me. You can see us in the front row! I was so proud of Hope for sitting and listening through several speeches and acknowledgements. She was so good!!

As I looked over at the faces of the current students that are in "Gavin's classroom," I got teary. They were all wearing matching tie-dyed tee shirts, which I am sure was a big, messy art project in school one day. I felt pride as I scanned their faces, just as I would have if I were scanning the group looking for Gavin's smile.

I certainly was NOT expecting this day to be even slightly about me, so I was extremely surprised when they called me to come up to the podium. Or should I say... called all of US! They gave me a lovely plaque to thank us for the money raised (so far) through Gavin's Trust Project. And they encouraged everyone there to visit the classroom later and look around at all the equipment, toys, communication devices and more that were purchased with that money.

A student from the class came up to present me (and Hope!) with flowers, which touched me even more.

At the end of the program, the students took the stage to perform a couple songs they had been working on.

Hope loved the show!! She was rocking and clapping and totally mesmerized. And I loved it, too, as I knew just how much practice and effort and therapy and pride were all wrapped up in every single note.

When the show as over, we all headed to the classroom for a visit. It was nice to see Miss Joanna, the current teacher, who started in the classroom after Gavin died.

I am sure I don't need to tell you how it felt to watch Hope play and explore "Gavin's classroom." (I can't stop referring to it as Gavin's classroom! He still feels there when I visit!) Hope walked in and made herself at home. She even took the hand of Deb Hiller (who is responsible for handling all the donations that come in to Gavin's Trust Project - among many other things!) and sat her down to play!! The mixing of my two worlds - less than two years after Gavin's death - was a hundred emotions combined.

We even got to do an art project together - creating a rainbow.

Hope felt like she had won the lottery when I let her control the glue stick AND use markers!

Gavin's presence is still in the room - not just emotionally, but really present. His photo and butterflies I saved from his funeral service are hung in the classroom.

And I've been told that the card with the blue butterfly - describing Gavin's Trust Project - is hanging in classrooms all over the county. It's also handed out to parents who receive equipment or toys purchased with money from the Trust Project.

If you click on the photo, it may be easier to read...

It was such a special morning at a school and in a classroom that means so much to us. When you walk into the Kindergarten Center, this is the first thing you see - framed handprints in all different colors. At the bottom it reads:

Every child instinctively knows what many adults have long since forgotten: 

Our differences are not something to be tolerated, they are something to be celebrated.

As a special needs Mom, I know two things. I know that our son, Brian, is a compassionate and thoughtful child because he lived and learned side by side with his older brother. This is one of the reasons that I am thrilled about these inclusive preschools. It benefits everyone! I also know how hard - and EXPENSIVE - it can be to support these children at home and at school. Simple therapy aids to use in the classroom are a fortune!! This was exactly why I started "Gavin's Trust Project" after Gavin died and it's one of the things I am most proud of. Since April of 2013, the Trust Project has raised close to $30,000 - 100% of which has gone to the Chester County Intermediate Unit to support the special needs children in Chester County that they care for. It has opened and furnished brand new classrooms... purchased equipment for children whose parents may not have otherwise been able to purchase or acquire them... bought adapted toys and even communication devices and technology.

Gavin's Trust Project accepts donations 365 days a year and any little amount helps. Gavin's Granny sent a check to the Trust Project in the amount she would have spent on Christmas presents for her Grandson (who was one of 20 grandchildren!). The money was recently used to purchase a much needed weighted blanket for a student who needed help getting settled. This may seem like such a small thing to some - but trust me, it was huge. You can read more about Gavin's Trust Project HERE or you can make out a check to CCIU and put "Gavin's Trust Project" in the memo. Mail it to:

Chester County Intermediate Unit

c/o Deb Hiller

455 Boot Road

Downingtown, PA, 19335

Congratulations to everyone involved in helping these inclusive preschools go from dream to reality. 

And thank you, from the bottom of our hearts, for continuing to include Gavin and our family as you set up his friends for a brighter future.

What A Year...

Today was a beautiful and challenging and exciting and dreadful and inspiring and depressing day - all wrapped up in one.

Actually - that could absolutely describe the last year of our life without Gavin.

In January of 2013 - just three months before Gavin suddenly died - this photo was taken with Denise from the hospital's wheelchair clinic.  Gavin was sitting in his new wheelchair that was embroidered with his name.

Today, Hope and I brought that chair back to Denise, along with a special needs car seat that was Gavin's.  

It took us a year to donate it to the hospital.  In our house, if one or two or all are not "on board" - it doesn't happen.  We are respectful of each of our very individual grief journeys... no questions asked. 

 But today was the day.

I checked in with Brian about donating Gavin's chair about a week ago.  It has been sitting in our dining room "on display" this entire year.  Brian was very hesitant when I brought it up - and the idea of giving it away seemed to make him sad.  I dropped it and moved on.  

He was very concerned about the chair having Gavin's name on it.  But then, a few days later, he came to me...

"Mommy, I was thinking about Gavin's chair.  What if a little boy who was sick came to the hospital and his name was Gavin!  He could use Gavin's chair!"

"So, you're feeling okay about giving it away, Brian?" I asked.

"Yes,"  he replied

"That's really nice, buddy.  The chair will be really helpful to another little boy or girl who needs it.  It's really nice of you to want to give it away," I encouraged him.

"Just make sure you tell them to try to find a Gavin, Mommy,"  he reminded me.

"I will, Brian."

And I did.

Leaving Gavin's wheelchair and seat behind was the right thing to do.  But it was not easy.  They were the last two pieces of equipment that we had in our home.  We've given away everything else.  His stander, his walker, his parallel bars and more...

...but we're happy to pass on the hopeful spirit that is attached to every single one of them.  Gavin did so well and was on his way to great things when he died.  Ugh.  It's still so hard to believe some days.

It's always so great to be in that hospital and see familiar faces that loved Gavin.  Including his very first doctor there - Dr. Christopher Raab.  I was thrilled to introduce him to Hope.

The other reason we went today was to deliver the money we raised from Gavin's Playground Project!  Between the fundraiser and the donations that you sent directly to the hospital for the playground, the Chasing Rainbows community raised.... drumroll please?

$64, 953.04

That is insane.  I can't even believe it myself.  My intention when I started Gavin's Playground Project was to raise a ton of money (check!) that would almost "force" the hospital to start planning to build a new playground (check!) and make it accessible to all (check!).  Today I met with the fund development coordinator *slash* new friend of mine, Joy Zernhelt - and we chatted about the fundraiser, the plans and "what's next."  Joy told me that a "project manager" has been assigned to the playground and they are in the very early steps of talking about plans.  The hospital just went through a major renovation - and the new building will be opening in the Fall.  Not much will happen on this project (that you can see, anyway!) until that is completed.

Creating the playground they need will cost way more than $64, 953.04 - but this definitely puts them on their way!  Joy told me that the web development team is creating fundraising pages - picture "team pages" when people are raising money for marathons or walks.  People (like me - and you!) will be able to create their own page to raise money for this playground - they can call it whatever they want, fundraise in memory of whomever they want, upload photos or videos - it will be totally their own.  When it's available, I will create my own page and it will live permanently on my blog and Facebook page.  I'm very excited about this!!  I am not going to be a big part of the planning - or choosing what is on the playground.

 I just wanted to hand over the money... and quietly walk away.

And that's what I'm doing.

I am hanging up my "fundraising hat."

(not my writing, don't worry!  just my fundraising!)

This year has been incredible... and exactly what I didn't know I needed.  I was able to accomplish a lot of things in a short amount of time - with your help.  

I wouldn't even know where to begin to count the number of people who told me they became organ donors because of Gavin.  Spreading the word about organ donation is so important to me - and the idea that anyone was inspired to become a donor because of our son's story - it's hard to put into words what that means to us... how that feels.

This Chasing Rainbows community rallied around me all year long.  Together we raised over $25,000 for "Gavin's Trust Project."  These little cards are in every special needs classroom all over our area...

New classrooms were created and furnished.  New adaptive toys and equipment were purchased.  Children are getting what they need and teachers are better equipped.  I know Gavin is so proud that I made sure his "friends" were taken care of.

You rallied around me for "Gavin's Birthday Project" so I could completely re-do the little emergency waiting room in our local hospital.  Brian was very concerned about other kids who would only have a couple of toys to play with - after he spent the worst day of his life in there the day Gavin had his seizure.  Inspired by his concern, we bought all new toys and wall mazes and mirrors for the room in honor of Gavin's fifth birthday.

And you rallied around me for "Gavin's Playground Project."  In a major way.  Sixty four THOUSAND dollars... and change.

Thank you.

And this year, incredible and beautiful and lovely things were done because of Gavin.

Gillian's Wonderland Pier, upon hearing that Gavin's first solo ride on their fire truck (#8!) was one of the most exciting days of our life...

...decided to repaint and NAME that fire truck after him.  It is now (very literally!) a tourist attraction.  People go just to see his fire truck and have their children's picture taken sitting on it.  I can't explain it!

Michael Vitez, a Pulitzer Prize winning journalist, came to our home to write a story about us.  Blew us away.

A group of former colleagues of Ed's from Accenture got together and BOUGHT a room at the Gift of Life Family House and dedicated it to Gavin.

And space for a plaque in their entry way as well.  

How do you even begin to say thank you for something like that?

The same group of people also hired videographers as a gift to us.  CinemaCake did a beautiful job capturing Gavin's funeral service for us...

...and also created a "Life Story" video that I will always treasure.

Nike custom made two pairs of sneakers for Brian.  Two sizes so he could grow into the second pair and "run and jump" with his superhero brother.  The "Super G" logo was on all the shoes.  Unbelievable.

A reader had a flag flown over the Pentagon in honor of Gavin.  This nearly dropped me to my knees.  As the daughter and sister of retired Navy Captains, this was a big deal to me.  And pretty unbelievable.

Gavin and Brian even made it into a children's book!!!  Rich and Sam Specht from "ReesSpecht Life" created a children's book about cultivating kindness... all to honor their own little boy named Rees who was also gone too soon.  Rich sent me the sketches early on so I could get a sneak peek...

...and now the book is done!  They are just a Mom and Dad wanting to spread kindness in memory of their little boy.  You can buy your own copy here!

I could go on and on with the beautiful gestures and incredible acts that have been done in Gavin's name.  And I could go on and on expressing my gratitude to all of you for rallying around us the whole way.

The year has helped me heal.

It has helped me feel like I have created a lasting legacy for our precious son.

This year has allowed me to feel like I'm still "doing" and "helping" and "making the impossible... possible."

This year has blown me away.

Thank you for trusting me and for sharing your hard-earned money with me.

Gavin's Trust Project will always be open - and the links to donate will live permanently on my blog.  And Gavin's Playground Project will also be open as long as they need money for the build.  And I will continue to hope that Ellen DeGeneres finds out about this endeavor and swoops in to make it happen for us.  Gillian's Wonderland Pier will be hosting a "Magical Monday" in Ocean City on July 14th.  You can purchase a wristband for $25.00 that will get you unlimited rides from 1-4pm.  Half of the proceeds will go to the Playground Project!!  We will be down there as a family and hope to see many of you there!

Those are the only things going from now on.  If you ever see ANY other fundraisers using my name or Chasing Rainbows, it is not real.

Thank you, as always, for loving our family.

What a day.

What a year... 

Thank You, Readers!!...

I am so, so happy to share an update with all of you on what's been happening because of Gavin's Trust Project.  Because of you - and your $5.00, $25.00, $100.00 and even $1,000 donations - so many children, teachers and families have been helped.  I know how grateful we were when we were lent different equipment and toys to trial with Gavin.  And we were fortunate to be able to purchase many things on our own.  But, as you know, this is not always possible for families.  And special education teachers and therapists shouldn't have to beg, borrow and duct tape to get what they need for their "kids."  Every donation, big or small, from you - and even some of the companies you work for - has made a HUGE difference.  Here is an email I received from Deb Hiller from the Chester County Intermediate Unit.  She is in charge of the purchases made with the Trust Project money and was able to open and "furnish" (in more ways than one!) several classrooms in our area.  In our time of grief after losing Gavin, this project has meant so much to us.  As Gavin's Mommy, my personal motto was that I aimed to make "the impossible... possible" for my little boy.  To feel like we're continuing to make seemingly impossible things possible for kids like him brings us much comfort.

Thank you.

Kate,

Oh my have we been busy and so happy. Gavin's Trust has helped provide toys and switches to 4 different classes for students with physical and learning needs. We could not include the faces of the students, but they are from a variety of classes and students. Please see the attached pictures that include students utilizing voice output communicators to participate in school activities including ask for what they want, comment on an object, Say "hello", make a choice, play on a light board, ask for "more" and say '"all Done", make a caterpillar light up and play music, etc..

We have also developed a lending library (pictures of closets with toys and switches) to loan toys, low tech communication  devices and switches to the families of students we serve in that are too homebound Preschool Special Education students.

More pictures are coming soon.

Thank you for all your support of these precious children.

Deb

Not even shown is the furniture and swings and more that were purchased for the classrooms!  It's truly been unbelievable.

If you would like more information about Gavin's Trust Project - you can always look to the right side of this blog where you will find an explanation, where to mail a check or how to donate online.  You could also click HERE to read the original blog post with everything you need to know.

If you're wondering what's going on with "Gavin's Birthday Project" at the Paoli Emergency Room, I have an update on that, too!  (Note: we are no longer accepting donations for this!)

I had all the toys and furniture delivered to our home.  I wanted to open and assemble each one personally to make sure everything was A-Ok before delivering it.  Unfortunately, one pice of one toy arrived broken...and then it was on backorder...and I'm still waiting for that to be delivered.  As soon as that arrives, we will make the arrangements with the hospital to head over for the installation and unveiling of the new children's waiting room!!  We're very excited about this project - inspired by Brian - and are grateful to all of those who donated to make Gavin's Birthday Project become a reality.  Hopefully we'll make it over there with everything before Hope arrives!!

Thank you for everything you've done for our family.  Whether you've donated money... prayed for us... encouraged us... or even just read my journal entries so you could better know Gavin and our family... we could never have imagined, in a million years, this incredible outpouring.  We don't take it - or any of you - for granted.