It Would Have Been His Best...

This is a photo I took of Gavin meeting his very first "school teacher," Miss Megan.  I loved her from the moment we met - and I could tell that Gavin did, too.

We could have never known that Gavin's first teacher in a school setting would also be his last.

This photo was the last one I took of Miss Megan - on April 4th.  Gavin would be dead just ten days later.  I couldn't wait to pick him up that day - Sara had texted me to say I should expect HUGE and EXCITING news.

You can read about that day in THIS entry.  It was huge news... and it made his untimely death that much harder to accept.

Miss Megan no longer teaches at the Kindergarten Center in their special education pre-school.  She left when she delivered her BABY!!!!!  And she'll be starting in a new special-ed preschool closer to her home.  I was thrilled when she asked to stop by today with her infant daughter, Maggie!

Miss Megan will ALWAYS be a huge part of our lives.  She was a huge part of Gavin's life.  As a teacher, she brought out the best in Gavin.  He participated in circle time... he walked the halls of the school... she took him out on the playground... she worked hard with him to meet his goals, like color matching and feeding himself and hand over hand projects.  I was always so impressed with her calm and warm personality around Gavin and his classmates.  I knew she would be a natural as a Mom.

Speaking of "a natural" - Brian was just adorable with the baby in the house!  He was bringing toys over and trying to entertain her... he even brought out his camera so he could take pictures of her.  After they left, he said to me "Miss Megan's baby sure is cute!"

I couldn't agree more.

I'm sure Gavin was here with us - and so, so happy that his teacher was in his house!!  We gifted Maggie with a toy that Gavin loved his entire life.  Quite literally. He loved that turtle and the "Laugh and Learn" woman's singing voice until the last day.  I hope that in giving her this special little turtle, a piece of Gavin will always bring smiles and laughter to their home.

Megan was a teacher with the Chester County Intermediate Unit - where I have been raising money for Gavin's Trust Project.  She told me some of the things that have been purchased that other teachers in the area have been really excited about.  I'm going to hopefully have a great update about that very soon.  She also shared with me that Gavin's walker is helping one of the kids in the classroom that she'll be taking over soon!  I was so happy to hear that.

We are so grateful to Megan for giving Gavin his very first classroom experience... and even though it ended up being his very last classroom, we know it would have been his best.

Showers of Happiness, Gavin Style...

Summer break ended today and school was back in session for Brian - and Gavin's friends in his classroom, too.  Brian was very excited to see his friends again.  And he was proud to tell one of his teachers that he was going to be a big brother!  Brian's time in that classroom will be ending soon!  He started in Miss Laura's class in January of 2012 with a speech delay.  He really was barely talking at all!  I wrote about his first day... and MY first day sending a child off to school alone (Gavin had yet to start school yet) in THIS piece.  It didn't take long for Brian to start talking... and never stop.  So now it's time for him to move on.  His last day with Miss Laura is August 6th and he will be in a new preschool making new friends by the end of the summer.

After I picked him up from school and we had lunch together, the two of us went on a very important mission.  We set off for Gavin's classroom to meet with his teacher, Miss Megan.  Megan is due to have her first baby any day now!!  Miss Sara and I had been invited to her baby shower, but we were in Disney World and couldn't make it.  So today, Brian and I delivered our presents and were so happy to see familiar faces (including Gavin's - his picture remains on the wall!).  We represented Sara, who is enjoying a summer vacation with her parents!

At Megan's shower, her Mom and sister did something extraordinary as a way to honor Gavin, who was so special to Miss Megan.  Take a look at the sign that greeted guests as they came in...

While Brian had fun playing with Miss Ericka, Gavin's former Occupational Therapist, I had the chance to chat with Megan and just take in the classroom that was once Gavin's.  Megan showed me photos of the adorable nursery they set up for the baby - with monkeys swinging from trees all over the room.  But the part that got me choked up was when she told me that there is a photo of Gavin on a shelf right above the crib.

The first gift I wanted to give Megan was a copy of "The Invisible String."  I told her I wanted it to always stay with her - either in her personal collection...

...or travelling from classroom to classroom.

The gifts we chose were rather sentimental for me!  Both were from her registry and I got very choked up when I saw that she chose the "Rainforest" bouncy seat.  Ed and I chose everything Rainforest when I was pregnant with Gavin.  It seemed appropriate since we met on the way to Puerto Rico!  I hope Megan's little baby (my money is on BOY!) enjoys his seat as much as Gavin did.

And I couldn't resist choosing the baby tub off of her list.  After all, Gavin loved his bath... and anything to do with water.

Miss Sara and I are both in agreement - Megan is going to be a natural as a Mom.  How do we know?  Because she's already a surrogate Mommy to the kids in her class... and she loved Gavin as if he was her own.  This baby of hers doesn't know it yet... but he (or she... but really, I'm so sure this is a boy!) has won the Mommy lottery.

And he (or she) scored a pretty incredible guardian angel in Gavin, to boot.

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.

Can We Talk?...

Before I get down to business - can you just look up?  Not to be a total braggart, but can you even stand how adorable the new header pictures are??  The matching outfits?  The poses?  I took all of the pictures and didn't pose ANY of them.  Brian stood that way on his own.  Can you stand it???  Okay...moving on.

I have big news.  And by big - I mean as big as the "Christmas miracle" that was Gavin beginning to walk.  Big - like when it happened, people cried.

As you all probably know, communication is an ongoing project with Gavin.  And a topic that is very emotional for me. I never know what Gavin actually understands - if he grasps the concept of communication using pictures or iPads or buttons or sign language.  We've tried so many different things with him and he's been inconsistent with all of it.

This afternoon, while making a Fluffernutter for Brian's lunch, my phone let me know I had a text.  The text was from Sara and it read:  "BIG DAY TODAY!!  Pick up will be extra exciting today.  Milestone day caught on video!"  My mind was racing wondering what it could be.  I couldn't WAIT to get to school!!  Brian and I pulled up in front of the Kindergarten Center and out came Gavin with Miss Sara and his teacher, Miss Megan.

The two of them were so excited to show me a video Megan had taken on her iPad in the classroom.

Two days ago they had shown Gavin a Big Mack switch (think of a Staples "Easy Button" that you can record your own message on).  It had a picture of the sink in the classroom taped on top with "I want water" recorded on it.  Gavin is SO motivated by playing with the water in the sink.  He was shown this switch a couple times and needed hand over hand assistance to touch it before they would turn the water on for him.  That was Tuesday.  Wednesday they didn't touch it.  Today, during PT with Miss Wendy, she had him walking to the sink - the Big Mack switch wasn't part of their therapy and was down the counter away from the sink.  Now that you have the background.... watch this video.  Without any prompting, Gavin initiated communication on his own.

Sara said he did this not once, but FIVE times.  No one helped him...prodded him...asked him, even.  He did this all on his own which tells me one thing:  He gets it.  He gets it more than I thought.  And I am a Mom who gives him a LOT of credit - so that should tell you something.

I hope you all realzie that this is such a big deal. We are so, so happy tonight.  As soon as we got home from school, I went online to a local assistive technology lending library and requested THREE Big Mack switches for home.  I'm so excited.

Before any of this happened, I had a whole blog post planned about Brian and how he's communicating lately.  Ironic, right?  I'll post that soon... along with all the other adorable photos from our Spring photo shoot.  Here's a couple sneak peeks...

As always, thank you for loving our family!  And thank you for cheering on our superhero.

  I hope he inspires you as much as he inspires us!!

Humility...

Gavin and I have quite a history together.  

Although I was completely blindsided by his issues following his birth - and felt ill-equipped to handle the unknown ahead of me - the two of us quickly fell into a rhythm and created a very strong bond.  I would have slept in the NICU for those 30 days if they had let me.

Once he came home, it wasn't long before we were back in a hospital.  I was the gatekeeper to Gavin for close to three months as he recovered from RSV and Botulism.  This time I DID sleep there - on a cot next to his crib - only going home once.  I learned all I could learn from the doctors, the nurses, the therapists - and googled all through the night.

When we were finally settled at home and could "begin our lives" - I did everything times a hundred.  He needs patching for a half hour a day to strengthen his weak eye?  That, to me, meant patching for one hour every day without fail - and "made up" vision exercises of flash cards or books or puppet shows...anything to get Gavin to look.  Preferably, at me.  

And when he did look into my eyes, it was my greatest reward.  It still is.

Having the therapists come to the house was awesome.  I never missed a thing.  And I would purposely buy toys - and rotate them often - so he would be getting lots of therapy all day without even knowing it.

Over the years, Gavin continued to make progress.  And, if I'm being 100% honest, with each "gold star" Gavin received...I felt I received one, too.

But the difference was - Gavin's stars represented progress.  My stars represented bits of redemption.  I will probably always feel that I am responsible for Gavin's issues.

Of all the therapy that Gavin has received since he was an infant - physical, occupational, teacher services and hearing services... speech therapy has always been the most difficult.  

Not for Gavin... for me.

I could list an entire page with all of the communication methods we've tried with Gavin.  Devices and switches and systems.  None of them were very successful.  I even attended a two day conference filled with teachers who wondered what I was doing there - and I came home so depressed knowing that communication style would not work for Gavin.  At least not at that time.  I went around the house and took photos of everything - every toy, objects, rooms, family members - and for a long time Gavin did well with that.  We would hold up two cards and he would choose between them.  From what toy do you want to play with...to which one is Daddy's car...to yes and no.

We moved onto the iPad when things stalled a little in the picture department.  Plus, I thought it might be time to use a communication program.  We tried a bunch of different ones - and found success with the easy to use "So Much 2 Say" app.  Gavin continued to make choices on the iPad and it seemed things were moving in the right direction.

When he started school, I knew that I would be losing my "control" of a lot of things.  Soon I would be hearing about his day - and not seeing things first hand.  I knew that they weren't using the iPad that much in school for communication and wondered why.  Then, silently at home, I started to get annoyed that the iPad wasn't being used.  Then I really started to worry when I heard that they had gone back to pictures.  But his speech therapist, Miss Whitney, maybe sensing my tension, called a meeting today.  She assembled Gavin's teacher, his occupational therapist, an assistive technology expert from the school district and herself.  I dreaded this meeting.  If I'm again being 100% honest, I was defensive for two days leading up to it.  I walked in ready to be annoyed and adamant.  I walked in with a "nobody could possibly know Gavin or know what he needs like I do" mentality.

But then something happened.

I sat there and quickly realized...these four women are sitting here with me during their lunch break to discuss my son.  These women have prepared remarks and have watched and studied Gavin enough to come up with suggestions to help him.  As I listened to Whitney explain why she went back to pictures and how it may lead to using the iPad down the road but that it's just not functional right now... a light bulb went off.

I heard my Dad's voice:  "Kate, never think you are so smart that you can't learn from someone else."

In that moment, I realized something.  I was in control for 4 1/2 years.  I knew Gavin's every move... every expression.  I could anticipate every want... every need.  I was in control of his therapy and was able to offer a lot to the sessions.  But now - he's not in my home anymore.  It doesn't matter what worked for him last year.  It doesn't matter what worked for him at home... with me.  What matters is what works for THEM... at SCHOOL.  I needed to back the hell off.

Whew.

When I took a breath, I realized I could then listen instead of simply hear what they had to say.  And when I listened - I was blown away.  "Start small," I heard.  "Put some of Gavin's cause and effect toys in a clear bin and put a picture on top.  It may take a LOT of repetition, but the goal is for him to touch the picture in order to tell you that he wants a toy in that bin."  "Put a picture of his milk on the refrigerator door and have him touch it to tell you he wants a drink."  When I listened, I realized that these women were on top of things.  They had a singular goal - to push Gavin so when he hits Kindergarten, he hits the ground running.  (That may be literal!)

Today I learned some important lessons that I think will serve me well as Gavin continues his education over the years.

One:  Worth repeating.  Never think you are so smart that you can't learn from someone else.

Two:  I'll never lose the 4 1/2 years when I was in control of everything surrounding Gavin.  It's okay to pat myself on the back for how far he came.  

Three:  After I'm done patting myself on the back, thank the women who are standing in my place. Teachers and therapists don't just train to help children...our children become "their children."  At least I have found this to be true for us.  When I picture people taking the time to even give Gavin a second thought after they "clock out" - it brings tears to my eyes.

Four:  The classroom is a different environment than home.  You have to let the professionals tell you what works for Gavin when he is there... regardless of what has worked for you at home.  There are different distractions and pressures... and we all know that kids are totally different at home than they are, well, everywhere else.

And finally:  A dose of humility is good for the soul.  And tonight, I feel humble... and ready to rock this communication plan!!

In other news from our house... Brian was diagnosed last night with an ear infection and Roseola!  I've never experienced Roseola (with my kids) so I learned something new.  It starts with a day or two of high fevers... and then the fevers go away and the kid just feels awful.  Then, days after the last fever, a tell tale "Roseola rash" spreads all over the body.  That's just how it happened with Brian.  Two days of high fevers.  Up every night crying and unable to sleep but wouldn't tell me that anything hurt.  Then yesterday the rash popped up and he started complaining about his ear.  So off to the doctor we went.  He's been home from school all week with Mommy and we've done very little sleeping and a whole lot of snuggling.

Thank you for loving our little family!

ps... don't forget about our new "Chasing Rainbows Facebook Page."  You'll get instant alerts to new blog posts...info about giveaways...pictures and posts...and conversations that start following blog posts!

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.