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.

We'll Never Stop Telling His Story...

This morning was really special.  Miss Sara and I went back to the place where so many wonderful memories were made...

...Gavin's school.

We were so excited to meet the new teacher, Joanna, that has taken over for Gavin's teacher, Megan.  The classroom looks great - and three of Gavin's friends that are still there (the others graduated to Kindergarten!) looked happy as can be.  Joanna has a very calming presence and is such a nice person.  I know Gavin would have loved her if he had returned to that class.  She was so nice to ask me to bring in a photo of Gavin that she could hang up permanently in the room.  Obviously, this meant the world to me.  But when I saw what she already had hanging right inside the door when you walk in - and where the picture was going to go - it took my breath away.  She sent me this photo this afternoon after she hung his picture...

If you're wondering what the sign in the middle is - it's a short explanation of Gavin's trust project.  Whenever something is bought with the money from the trust - whether it's for a classroom or a child to use at home - this will go with the item(s) - 

***

This item has been made available for use through the 

Gavin’s Trust Project: Making the Impossible Possible  

The Gavin's Trust Project was created by the Leong family as a way to honor the unique ability their son had to change the lives of those around him without ever uttering a word.  This item was thoughtfully purchased to help CCIU PSE teachers and therapists provide materials for students who may not have been otherwise able to afford the expense of, or had access to, special needs assistive technology devices and materials.

The greatest “Thank You” that you can give for the use of this item is to honor Gavin’s memory by returning it to your child’s teacher or therapist, once your child no longer has a need for it, so that another CCIU PSE student can benefit from the 

Gavin's Trust Project.

To Learn more about the Gavin's Trust Project, or Gavin’s life journey, please visit:

Chasing Rainbows at http://www.kateleong.com/

***

I think it was emotional for Miss Sara to be back there, too.  She and Gavin spent their days together there.

But there was also another reason why we were there.  Ed and I wanted to donate copies of the book "The Invisible String" to the school.  Enough so that every teacher in every classroom and the school psychologist would have their own copy.  If, God forbid, a loss touches any of these students personally - this book can serve as a wonderful teaching and therapeutic tool to help them through their grief.  Much like it helped Brian after Gavin's death.  We were so happy to do this for the school that gave us so much love and support - while Gavin was there and even after he died.  I presented the books to the school principal, Dr. Pearsall, and told her I wanted Sara to take a picture of us.  What happened next left me quite speechless.

Gavin, as you know, had a love affair with water.  And there was a small sink in his classroom that was very motivating for him.  It motivated him to walk to it... and only ten days before he suddenly died, that little sink motivated him to communicate.  This is what happened - and this is that sink...

So, when I proposed taking a photo, Dr. Pearsall said there was a bulletin board we could use as a backdrop that said "Reading Helps You Meet New Friends."  Sounds good, I said!  Sara and I followed her down the hall... through a door... around the corner... and she stopped right in front of Gavin's sink.  She had no idea how special this spot was until we told her.  Clearly, Gavin was at work today and in that moment - I was sure that he was there.  He's always "there."

It's just amazing to me how Gavin's journey... his legacy... and his spirit continue to touch people all over the world.  I'm humbled, every day, to be his voice and to receive emails from people that tell me how following Gavin has changed them.  Changed them!!  Imagine... really... this little boy who never spoke who, to the outside world, was "different."  He's changing people.  Proving that, truly, we ALL can possess the power to change and affect people if we use our powers for good.  He did - and he continues to.

I'm so proud of Gavin's trust project, too, that is doing so much for children and families that receive services in our area.  As a matter of fact, I got an email early this morning from a teacher I have never met.  I was nervous this morning about going to Gavin's school and having a "moment" in my room away from Brian to shed a few tears.  I opened up my iPad and found this...

**************

Dear Kate,

I am a teacher in one of the new Multiple Disabilities classes that the preschool program at the CCIU opened this year (I’m right next door to Megan!).  I have never met Gavin and had not heard of him until after his death, but began following your blog and Facebook page after seeing posts from coworkers and hearing about Gavin’s Trust Project.  This was before I even knew I would be given the new classroom teaching position.  Now that I am in the classroom working with my students, I am getting to experience first hand the benefits of Gavin’s Trust Project.  We were able to purchase a device that allows one of my students to touch a button to choose between drink and food at meal times. We were also able to purchase an expanded version of the same device so we can allow him to choose between different types of drinks and food as he continues to grow and master this skill.  Another student is enjoying a variety of switch-activated toys.  We were even able to get her multiple switch options to help her activate the toys, which is helpful due to her limited range of motion.  All of my students will benefit from the new swings we just ordered.  It has been a blessing to be able to order these things for my students and I cannot thank you enough for starting this wonderful project.  Now I know why you call Gavin a superhero.  He has become one in our classroom and I have proudly placed the blue butterfly on my wall to tell his story to everyone who enters our room.  Thank you for starting this project to honor Gavin and support our students.  I hope you know how much it is truly appreciated.  What you have said about Gavin is proving to be true – he is inspiring others and affecting the lives of those who have never met him.  

Sincerely,

Miss Lisa

************

Instantly, this calmed my nerves.  And it caused my heart to swell with pride.  

Knowing that Gavin's healing spirit is being spread all over makes this terrible tragedy just a little bit more bearable.  I am so proud to be his Mommy.

If you would like more information on Gavin's Trust Project, you can read THIS POST... or look on the right side of my blog for how you can participate.

Gavin, Mommy, Daddy and Brian miss you and love you so much.  And we'll never stop telling your story.

The Night Before What Could Have Been...

Today I could have been spending my time feeling the jitters... checking and re-checking to make sure I had everything ready... agonizing over "just the right outfit"... and then sitting back and staring with pride at my little boy on the eve of his first day of Kindergarten.

Tomorrow would have been Gavin's first day of Kindergarten at the Phoenixville Area Kindergarten Center.

And I am not handling it very well.

Actually, let me rephrase that and give myself some credit.  I'm actually "handling" it quite well - but, as many grieving Mothers might understand, I could easily cross the line into the dark side and let it consume me.  But letting this grief consume me is not a choice I'm allowed to make.  Why?  Because in doing so, I would take innocent casualties down with me.  Ed.  Brian.  Hope.  Family and friends.  And that would be a bigger tragedy... and one that would not honor Gavin at all.  

So, to get through tomorrow I came up with a game plan to stay busy.  

Yesterday we spent the day as a family and Ed came up with the great idea of going Miniature Golfing. Brian had so much fun...

He even, believe it or not, got a HOLE IN ONE!!!!  He's a natural like his Dad.

And today... I had some "me" time.  While Ed and Brian took off for some fun, I spent a couple hours slowly (and aimlessly) going up and down every aisle in Babies r Us with Hope.  I marveled over how much has changed since I shopped for an infant and I made a list of all the things I needed... and just plain wanted because I couldn't resist the cuteness.

Then, when I got home, Ed took us out for a Sunday drive with the top down.  

We always wanted to do that with Gavin, who would have absolutely LOVED it, but never did.  He was our resident daredevil.  But Brian suddenly has taken over that role - he thought the entire ride was "SO COOL!"

I even have a plan for tomorrow.  I have my first session with a grief counselor at DuPont (Gavin's hospital where he lived...and died).  And Brian will be spending time with Miss Jenn from Child Life - the wonderful woman who helped us the day that he came in to say goodbye to Gavin.  She was the one who created the invisible string with Brian that hangs on Gavin's closet door to this day... and who did Gavin and Brian's handprints side by side for us.  She's going to work with him simultaneously while I'm with the bereavement counselor.  I'm also hoping to stop into the PICU, where Gavin spent his final days, to say hello to the doctors and nurses that mean so much to us.  Brian and I have some donations for the hospital as well, which we'll be delivering, and then we plan to spend the rest of the day doing whatever we want.  Lunch... the toy store... a playground... who knows.  We'll be busy.

But tomorrow and what could have been... what would have been... what should have been... will not be far from my mind.  I was so looking forward to Gavin starting Kindergarten.  I couldn't even believe it was really happening - my little boy attending a mainstream school.  I couldn't wait to take his "first day of school" photos again like I did last year...

...and to capture him with Miss Sara, who was planning to go with him every day.

Tomorrow marks the start of what I know will be a painful month for me.  The start of Kindergarten... Gavin's 6th birthday.  But really the "firsts" will never end.  And the "what could have beens" will always follow me.  

But the "what was" follows me, too.

And what was - that was something really great.

And the what is, following Gavin's death?  That's just remarkable.

Happy First Day of Kindergarten to everyone at the Kindergarten Center.

 And to Gavin, I will always be so proud of you and how far you came.  And I continue to be proud of all you continue to accomplish from where you are.  I miss you, Bugaboo.

The Best Blog Entry You'll Read All Year...

Today was one of my favorite days this year.  Possibly ever.

If you remember back in October, Miss Wendy (Gavin's PT) and Miss Sara (Gavin's aide) came up with a great idea.  They decided to track Gavin's walking progress up and down the hallways at school until he reached 5K (3.1 miles!).  You can read about Miss Sara's heartwarming plan and the back story behind the chart she made HERE.

Well today was the big day.  Gavin was crossing the finish line.  Ed was able to get out of some meetings this morning... and I kept Brian home from school... and we surprised Gavin on his special day.  This was definitely something we'd celebrate as a family.

As Gavin made his final lap with Miss Wendy...

...children from the Kindergarten Center lined the hallways along with teachers, therapists and even the Principal!  Gavin's little brother, Brian, and his teacher, Miss Megan, held the finish line as everyone watched with anticipation.

It was hard to contain my emotion (as you'll see in the video quality!) as I watched my son walk through a crowd of his peers - all cheering for him and rooting him on.  Miss Wendy fittingly put Gavin's hand in Miss Sara's for the final stretch.

This moment was indescribable.

You could see the pride on his face as he broke the yellow "Finish Line."

And as Ed and I locked eyes, the five years leading up to this moment were the unspoken words between us.

We are so proud of our little superhero.

We're so grateful, too, that everyone went out of their way to make this a special day!  Gavin gets so much encouragement from his teacher, Miss Megan, and Miss Wendy.

And - there really are no words for our beloved Miss Sara who goes to school with him every day.

The walking in the hallway was wonderful.  And the accomplishment of completing the 5K was impressive.  But for me, the most moving part of today was seeing him walk among his peers so confidently.  They cheered for him and gave him the "thumbs up" and said "Good job, Gav" as he passed them.  I know he takes in every word - every smile - all the good energy.  It moved me.  

Unconditional acceptance.

We stuck around for a bit so Wendy could show off to Ed some of the things they've been working on in Physical Therapy.  Gavin's been working hard on trying to stand up from a little chair, trying to maintain his balance and then walk.  So far he's needed assistance with this.  But apparently, having Daddy there was all the motivation Gavin needed.  We couldn't believe our eyes.  I didn't even have time to focus before he took off!!

Didn't catch that?  Well, if you look through these photos slowly - it will be like a slow motion recap!

Unbelievable.

We are so proud of you, Gavin!!

This afternoon, after school, I took Gavin to one of his favorite places to celebrate.  "Arnolds Family Fun Center."   It was just the two of us and we had so much fun.

We rode the carousel three times...

And the crazy "Frog Hopper" three times.

Gavin was happy and likely thought it was his celebration.  But we all know... it was really mine.  I can't believe how lucky I am that this inspiring little boy is mine.  I have said it before and I'll say it forever.  Gavin and I were meant for each other... and he surely saved my life.