Thursday, October 31, 2013

Brian's First Halloween...

It's true.

This is Brian's very first true Halloween.  In years past, I would choose the costumes for Gavin and Brian.  I would pose them for photos.  We would go to the neighborhood Halloween party a week or so before October 31st.  They thought that was Halloween.  Gavin never ate candy - and Brian didn't know he was missing anything.  He wasn't going to be eating candy anyway.  They were both in bed asleep before anyone would ring our doorbell.  I just thought they were too young.

But this year, things have changed.  Brian is older, has more of an opinion, learns what his friends do in school... and this year, he chose his costume.

Introducing... our HAPPY SKELETON!!!
The Halloween celebration began last weekend when our neighbor-friends, Patti and Patrick, hosted the annual neighborhood Halloween party.  Brian had a blast with his good friends, Seamus and Molly.  I think his favorite part of the party was getting to eat Cheese Curls.
Brian was so "over the top" excited that Seamus and Molly were like... "Dude - they're only cheese curls."
Then, during the week, Brian and I spent a few hours volunteering at his school to decorate for the next day's Halloween parade and party!  The entire hallway to the classrooms was decorated with hanging streamers and balloons - it was so much fun!
The Halloween Parade was adorable.  Brian and his neighbor-friend, Daniel, stuck by each other as they trick or treated around the school.
I was posted at one of the stations giving out tattoos and lollipops!
Brian was so excited that I was there...and even more excited that Daddy came from work to be there!  Lucky Daddy works about three minutes from Brian's school.
After trick or treating, the kids had a party in their classroom and made Halloween crafts.  Brian had such a great day!  But wait!  That's not all!!!
Tonight was the actual Halloween - and all of us, including Miss Sara, went trick or treating with Brian.  In costume!!
Daddy is obviously a hockey player... and Brian, Hope and I are coordinating skeletons!!
Miss Sara wins the prize for her homemade Angry Bird costume - which completely delighted Brian...
We met up with Brian's friends, Seamus and Molly, and went to only eight houses - which was more than enough for these little guys.
One of the highlights was our neighbor who HAND MAKES all of his elaborate lawn decorations.  He carves all of this out of wood and paints them.  It's really incredible.
The three of them had such a fun night.  Apologies to the neighbors for the multiple doorbell rings, knocks and "anyone home?!?!?"  It was pretty adorable from the outside!
I think Brian's favorite part was rushing home so he could give out candy to the arriving trick or treaters.  When it would slow down, he would open the door and shout to the sky, "Hello?  Any trick or treaters out there?"  He took his job very seriously!!

We made it through our first Halloween!
Hope everyone had a safe, fun night.

Wednesday, October 30, 2013

Unbroken Connections...

I have said this so many times, but I'm happy to say it forever.  We had the best supports in place for Gavin... for Brian... and, quite honestly, for us.  From the beginning of Gavin's life working with Gavin's first NICU nurse... to the end of his life working with very gentle PICU doctors.  But the in-between...those years with Gavin's therapists...will be etched in my mind forever.  And for the last two and a half years of his life - that bus was driven by Jessica Cratty.  Jessica was Gavin's service coordinator, which means she was in charge of his case and many of the decisions that were made.

Over the years, Jessica and I developed a great relationship.  I knew I could call her for anything... ask her anything... propose anything... she was always so receptive.  If I do say so, Gavin had the best team of therapists that ever was - and that was thanks to Jessica.  She also held my hand (that's pretty much almost literal!!!) when I was told that Brian would need speech therapy and teacher services and he'd be going to school for four days a week.  That was hard...but, once again, Jessica never steered us wrong.  She suggested a school...met me there to see it and meet the teacher, Miss Laura...and it turned out to be a wonderful experience.  She even set it up so that Brian would have familiar therapists!!  Miss Maggie, Gavin's speech therapist, was now Brian's!  And Miss Janna, Gavin's teacher, was now Brian's (for extra, one-on-one teacher services)!  

Jessica recently had a baby - her first.  Proving that you really never know what life will throw your way... her little girl that was showered and anticipated and decorated around was born...a boy!!!  They named their little son Myron to honor two special men in their family.  
Is he a beautiful baby, or what???
She even let me hold him for a while which either delighted baby Hope in my belly - or made her very jealous.  She was jumping all over the place under Myron's little feet!
Brian couldn't resist his cuteness, either, as you can see...
I've had two newborn infants in my home over the past month - Gavin's teacher, Miss Megan with her baby Maggie... and now Myron.  Both times Brian was so, so good.  He either played independently or brought over a toy or two (looks like Myron likes Darth Vader, too).  I don't think I have to worry too much about Brian once Hope arrives!
All of the people that made up "Team Leong" mean so much to me.  The therapists, the teachers, the service coordinators - everyone.  And Jessica's visit meant a lot to me.
I'm so grateful that these connections remain unbroken after Gavin's death.

Sunday, October 27, 2013

A Little Bit of Everything Weekend...

Our weekend was jam packed.  It had had had laughs...and tears...and two, count 'em TWO, awesome Jack 'o Lanterns.  I know...even I am impressed!

On Friday morning, my Mom came over while Brian was in school.  We had the washer and dryer going non-stop washing all of Hope's newborn clothes, sheets and blankets, burp cloths and her "coming home outfit."  It was so nice to have her here to do this with me - and we both gushed over the tiny outfits and tiny socks and soft blankets.  We're getting closer and closer to being totally "ready!"  Ed is upstairs in her nursery right now hanging window shades!  It's hard to believe I am 31 weeks now.  And everything so far is going great.  I'm definitely getting more and more uncomfortable and need to take more breaks than usual due to my irritable uterus.  But truly, I have been truly blessed with a perfect pregnancy so far.

When we went to pick up Brian from school, he was SO excited to see Granny!!  We all had lunch and the two of them read some books before she headed out.  Brian and I had our joint session with Dr. Trish that afternoon and it was wonderful.  She is really helping both of us - with our grief, with my pregnancy and definitely with my blood pressure.  She's an amazing healer.
Saturday was SUPER busy.  Brian was invited to his classmate, Daniel's, birthday party!  He happens to be our neighbor, which made it very convenient!  Brian was SO excited.  I'm really hoping that Brian didn't take notes during this party - because it was AMAZING.  Sonia, Daniel's Mom, MADE the minion board you see below - and had the kids try to shoot the apple with nerf guns.  And there were tons of other homemade minions...adorable sandwiches...cleverly packaged was impressive.  And I was having a panic attack.  (kidding)
Brian went NUTS over his minion party favor bag.  He didn't even know what minions were - but he didn't care!
Brian and I left the birthday party right after the cake to run (and by run, I definitely mean drive around the corner back to our house - let's be honest) to get him into his Halloween costume!  Ed was already over at our other neighbor's house helping them set up for the annual neighborhood Halloween party.  I'd love to show you the photos from that party - but I'm upholding my tradition of not revealing costumes here until the big day.  It's quite possible you'll see ME in costume, too, so be sure to come back on October 31st!!

The party was a lot of fun and Brian had a blast.  A two party day wiped us out, though!  Brian was so tired... I was so tired... and I was also very emotional.  Halloween isn't even remotely my favorite holiday - but Gavin's absence hit me like a ton of bricks.  I loved dressing them up in matching or coordinating costumes.  Like this... the Zoo Keeper and the Lion, inspired by the book "Goodnight Zoo."
At bedtime, Brian chose the book "If Nathan Were Here."  I've read this book to him several times and got through it just fine.  But last night?  Last night I really struggled.  I kept stopping to collect myself and could feel the tears welling up and then spilling over, unstoppable.  Ed came in at that moment and when he saw me HE lost it.  Soon Brian was looking at both of us, not sure what to do.  He's seen us cry before - it wasn't entirely new to him.  But we still talked about it.  We told him that it's okay to cry - and how much we all miss Gavin - and how it's okay to be happy and still need to be sad and still feel joy.  I told him that we felt sad for him that he lost his brother.  And that I bet he felt sad for us that we lost our little boy.  He nodded his head to agree and said, "But that's okay.  You still have ME!!"  We had a big group hug and smothered him with love and kisses.  

I really didn't recover - and that's okay.  I cried much of the night.  I suppose that's just what I needed - a good cry.  I was in bed early - and up late, thanks to a husband who let me sleep off my grief hangover.

I woke up with a new attitude and prepared myself for "Pumpkin Day!!!"  Brian announced one day that he wanted to make a Jack 'o we did!  Here is the photo proof:
He laughed hysterically when I called the inside of the pumpkin "Pumpkin Guts."
He's giving a thumbs up for the cool looking pumpkin guts...and a thumbs down for the idea of sticking his hand in to pull them out!
Mommy's not the best artist - but Brian was impressed with my work in progress!
Turns out he was VERY impressed with the finished product!  He told me to take a picture of him kissing his Jack 'o Lantern...
...and hugging it.  Success!!!
Then I surprised him with an Angry Bird Piggie kit that he could push into another pumpkin!  
He was over the Angry Bird moon.
I put an electric candle inside and we put our pumpkins on the porch to test them out.
We're all ready for our trick or treaters this Thursday!!

Thursday, October 24, 2013

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

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.  

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.

Wednesday, October 23, 2013

A Day of Rest...

Last night in the car on my way home at 10pm, I declared that today would be a day of rest.  Way home from where, you ask?  I was getting checked out in Labor and Delivery at the hospital.  I have always had what they call an "irritable uterus" which means, for me, that when I get further into my pregnancy my body feels like it's contracting.  Sometimes for me it feels like I'm having one long contraction - where my uterus stays rock hard for a while.  I have actually never been in labor - ever, which is what makes these feelings so confusing and worrisome to me.  Gavin was an emergency C-Section... and so was Brian.  Both deliveries were ahead of their due dates and, in Brian's case, his scheduled C-Section.  So, when I feel these feelings - like I did yesterday - I worry.  I did all the right things to see if it would subside.  I drank more water.  I popped in a Scooby Doo, much to Brian's delight, and laid in bed on my left side.  Nothing was helping.  Hope is a very - VERY - active baby, especially after a meal.  So I ate dinner and sat down on the couch waiting for the acrobat to strut her stuff.  When I only faintly felt her moving, I had had enough.  I jumped in the car (Ed was home with Brian) and headed to the hospital... calling my OB from the road.

Long story short - everything is fine.  He saw some actual contractions, but nothing to think that anything was really happening.  My blood pressure was high - but that might have been because I was completely freaked out and worried until they told me everything was fine.  Up until then, my blood pressures have been normal.

Having an irritable uterus (the rest of me is not irritable, I swear!) is not fun.  You're just never sure when to worry - and when to take a chill pill.  (Not a real chill pill - a pretend one.  It is not advised to take chill pills when you're pregnant.)  But I'm cutting myself one big, huge, giant break.  If I want to be checked out twenty more times between now and December because something just doesn't feel right - I will.  And, we are so grateful that we have two hospitals filled with nurses that know me... or know our history... and are completely supportive and reassuring.  We are still 100% believing Hope born this December.

So.... back to my day of rest.

On the way home from the hospital, I checked in with Miss Sara to see if she was free this afternoon.  And she was.  So, after I got Brian home from pre-school and fed him lunch... I retreated to my bedroom for four, amazing, restful hours and left a very excited Brian in Miss Sara's fun and capable hands.  
We're so lucky that she's part of our lives.  Part of our family, really.  And I know it's important to Brian to maintain a relationship with her.  When she started with us, he was barely talking and still in a high chair!  They've been through a lot together.

Before I went upstairs, I handed Sara my camera and presented them both with a challenge.  An outdoor scavenger hunt!!  Admittedly, I stole this idea from Sara who did this with Brian one day not long after she started with us.  You can see HER version (which is much fancier than mine) - and also, if you've ever been curious to understand what Dr. Trish does, there's a great explanation of that near the end of THIS POST.  

Here's my awesome and "Pinterest worthy" scavenger hunt - all the things they had to find on a walk around the block.  (Something that is not suggested when you're as pregnant as me and have an irritable uterus.  According to me, anyway)
Brian found the hay bale!  AND the pumpkin!  AND the corn stalk - all at one house!  Jackpot!!
Boo!  He found the ghost, too!
The stick was a giveaway.
And so was the "Brown Leaf."
Brian had a blast outside... and then back inside with Sara.  Going to bed tonight he told me that he can't wait to take Hope on her first scavenger hunt.

This little boy has the biggest, sweetest heart.
I've been telling Brian a lot of stories about Gavin's birth - and his birth - and how things might be for Hope's birth.  Tonight he was so excited when I told him about his birth.  How the night he was born I was so happy because I couldn't wait to meet him.  And when the nurse brought him over to me, all wrapped up in a tight blanket, I said... and he interrupted me to interject:

"He's the cutest baby EVER in the WHOLE WORLD!"

That's pretty close to accurate!  I told him how I spent FOUR long days in the hospital with him and we were able to get to know each other really well.

"Where was Gavin?  He was home with Daddy, right?"

So, I explained to him that Daddy spent a lot of time at the hospital with me and with you and we were so, so happy that you were finally here in our arms.  Daddy would go home to see Gavin, who was being taken care of by someone else and he'd go back and forth between the hospital and home.  Gavin waited FOREVER for me to bring his new brother home and each day he got more and MORE excited.  (Brian loved hearing that)  So now it's YOUR turn!!  When Mommy goes to the hospital, you'll wait for what seems like FOREVER until I bring your little sister home.  And you'll get to have a lot of fun with whoever is here staying with you!!

"That's okay, Mama.  I'm patient," he said.

"I know, Brian.  You are.  And you're going to be the best big brother to Hope.  Just like Gavin is the best big brother to you."

And he will.  I just know it.

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