Reinventing Us...

This was the first time I got to hold you - really hold you - after you were born.  

And each day thereafter for the thirty days you were in the NICU.  

And all day and most of the night when you came home.

When it was just you and me, I would whisper promises in your tiny ears.  I promised that I would always try to figure things out for you.  Figure out what you needed.  Figure out the best way to help you.  Figure out the best doctors to see you.  Figure out the ways you liked to be entertained.  What made you smile...what made you sleep...what motivated you. 

I promised that I would always be your student.  I would research and learn and and figure out feeding tubes, hearing aids, genetic syndromes and all the medical issues that would crop up along the way.  But mostly, I would let you lead.  I knew that you would teach me all I really needed to learn.  And you have.  You were a patient and gentle teacher - perfect for this first time Mommy.

You and I have been a great Mother/Son team for the last 4 years, 10 months and 29 days. (I guess it's a good thing I stopped making these monthly signs at year 2!)

I have fought fiercely for you along the way and so far have been able to get you just about everything you needed - or we've been told you needed.  I've made decisions that I believed were in your best interest, some that weren't very popular - like not succumbing to the pressure to have a G-Tube placed or letting your bare feet feel the floor and not feel braces all day long or keeping you home from pre-school last year so you could get stronger.  I've been in your face a lot - and given you space to play and be 'you' a lot, too.

I have been very protective of you.  Making sure people around you wash their hands.  Not allowing shoes in the house out of respect for you - who spends most of your happy time on the floor.  Being hypervigilant of other people's sniffles and sneezes and keeping you far away.  The two of us even donned "Swine Flu Masks" when we went out in public during that outbreak.  Yes, I am pretty over protective.  And proud of it.

  

But when your body was weak and you were in trouble, we healed together.  I've never left your side.

This Mother-Son dance has been a learning experience for both of us.  And even though you led the dance - I chose the song.  And I did the singing.  But all of that is about to change.

Tomorrow morning, I will watch you get onto a bus.  And that bus will drive away.  Starting tomorrow, you will begin to have experiences that don't include me.  I will be told what you did that day by someone else.  I will read notes about your therapy sessions.  There will no longer be thousands of photos a day.  (Note to self:  invest in a long, zoom lens and find a good tree outside of the school)

We will be reinventing us, Gavin.  I will still be your dance partner at home...with the songs I've always sung and the moves I've always had. 

But I know that you will come home each day with new favorite songs and new favorite moves and, once again, I will be happy to let you lead.  It is very hard for this Mommy to watch you go.  Hard for me to give up my job of "keeping you safe...happy...healthy...and progressing" as well as I can.  Hard for me to think that I'll miss a "first" or a laugh.  Hard for me to imagine that I won't be there to comfort you if you're sad or hurt.  But I know this is the right thing for you - and I know that we will both be fine.  I feel it in my heart.  This is right.

As you go to school and meet the first of many teachers you will have from now on...

...I want you to know that you are the best teacher that I've ever had.

I love you so much, Gavin David Leong.

Love, Mommy

Our Home-Tell Weekend...

Have you missed us?  We've been enjoying ourselves in Connecticut this weekend!!  We've had a whirlwind weekend visiting Ed's family and friends.  It's been wonderful.  (Well, except for the close to 5 hour trip up that should have been 3 - but let's not talk about THAT)

Gavin and Brian were excited to sleep in their first hotel beds!!  We were not (excited, that is) when we realized that the bed rails from Brian's bed at home - and the pool noodles we meant to bring from home - were both still... at home.  My intention was to line a double bed with the bed rails and tons of pillows in the bed for Gavin.  Then I was going to put the long pool noodles under the fitted sheet on either side to act as bumpers for Brian in his double bed.  He's at the point that he probably doesn't need the bed rails - but could benefit from a little input if he were to roll over too close to the edge.  But like all great ideas - they get screwed up.  After a lot of worrying and polling all my Facebook friends for ideas - we ended up just going to WalMart that night and buying crib rails and pool noodles.

For Gavin's set up - we pushed the bed against the wall, used sheets from home on the bed to protect his sensitive skin, used a bedrail and lots of pillows.  Then at the foot of the bed, we rolled up the big comforter and stuffed it under the fitted sheet to create a mountain.  That mountain soon became my pillow.  Gavin doesn't keep blankets on so I slept in bed with him so I could keep him warm...and make sure he didn't try to "escape" in the night.  He did a great job.  He's not the easiest bed-mate, but we did do a lot of snuggling so I'm not complaining.

Brian did great, too!  When I took Gavin's picture, he called over from his bed - "Mama - take a picture of me in MY bed!"  How could I say no?

The bed issue is (and will probably continue to be for a while)  a concern when we travel with Gavin.  He's too big for a pack and play - and although he can fit in a full size crib well enough, we hate to do that to him.  And it's not always possible to travel with a big crib.  Ed and I are considering purchasing a "Nickel Bed Tent" for future trips.  Click the link to check it out.  And if you have one, please let me know how it has worked for you!!

Ed booked us in a two room suite which was perfect.  We had enough living space - and a kitchen so we could store and heat up all of Gavin's food.  That's a necessary set up, we've come to realize.  

The first night we were here, we met up with Ed's sister and some of his cousins for a fun dinner!  Feeding Gavin and Brian ahead of time was one of the best ideas I ever had (besides marrying Ed, of course).  It gave Ed and I the ability to focus on conversations and relax a little.  Gavin was a little bit overwhelmed at first with the crowd and the restaurant noise, but we brought in his portable DVD player with his favorite "Little Einstein" movie and he was thrilled for the entire time.  Brian worked the crowd and played with some toys I brought with us. 

At the dinner, we got to catch up (briefly, unfortunately!) with Ed's sister, Kat and their cousin, Lenny...

I got to FINALLY meet Lenny's daughters, Jen (with her boyfriend, Chris)...

...and Melissa (with her son, Dylan, who was SO sweet with Brian!)

And I also met Ed's cousin, Karin, and her beautiful twin daughters - Claire and Elizabeth.

It was a really nice evening.

Saturday morning we were up and out after breakfast.  We stopped at one of the best grocery stores in America  - Stew Leonard's.  I *almost* love that store as much as Wegman's.  Ed wanted to pick out flowers to bring to his parents...and, of course, we left there with twenty other things that we just couldn't resist.  

The main goal of our trip was to visit the cemetery and pay our respects to Ed and Kat's Mom and Dad.  It was important to him to bring his family there.  And it was very nice that he and his sister were there together - I know his parents must have loved that. 

As we were there, the strangest thing happened.  I saw a butterfly cross over in front of the headstone...and Brian adorably ran off to chase it.  As we watched him, it was like the butterfly was playing with him.  It would fly away and then come back - then it would circle around him - then fly away again - and it even seemed like it was playing hide and seek.  I know how crazy it sounds...and you can draw your own conclusions...but I'm pretty convinced that Ed's parents were playing with their grandson.  And it made us very happy.

After lunch back at the hotel, we left again to go visit Ed' good friend - and our best man - John, his wife Lara and their children Jack, Ted and Sam.

It's sad, but the last time we saw John and Lara (in person -  not on Facebook!) was at our wedding.  She was pregnant with Jack.  Today we were there to celebrate Jack's eighth birthday.  Oh, how the years go by.

Gavin and Brian had a great time at their house!  I should have videotaped this, but Gavin kept trying over and over and over to push himself up to an independent stand.  He gets as far as having his legs pretty straight and his palms on the floor - can you picture that?  Like he could either do a somersault - or give himself a good shove to push his body upright.  Soon...I think it will be soon.  Other than showing off, he was his usual quiet and thoughtful self...

...and Brian was his usual gregarious, social self.  He had a ball getting dirty and running himself at full speed with the boys in the back yard!

It was also wonderful for us (especially Ed!) to see John's parents, Joanne and Dan.  Growing up, they were like second parents to Ed - Joanne still refers to him as her "second son."  They're two of the kindest people we know.

And it was nice for me to finally met Lara's Mom and Dad - Barbara and Ron.  Ron and Brian became fast friends - and I enjoyed chatting with Barbara who once worked in special education in Pennsylvania.

Driving back to the hotel - or the "home-tell" as Brian calls it - Ed and I both shared the same feeling about our day with our friends.  Going there for the afternoon felt like going home.  That's a wonderful feeling.  But then again, they are wonderful people.

And I feel lucky that my Connecticut relatives (by marriage and friendship) have welcomed me so kindly!

We're headed home tomorrow...just in time to get ready for the BIG DAY.

Gavin's first day of school.

The Wheels On The Bus...

Today was a very exciting day for everyone!!

Brian returned to school after his summer break and left looking so grown up and handsome...

When we got to school, it was very exciting to tell his teachers that he is wearing big boy underpants!  AND that he's 100% NOT allergic to peanuts anymore, too!

After a quick picture with one of his teachers, Miss Morgan, he gave me a huge hug and ran right into school. 

Shortly after I got home from dropping him off, we had a visit from Miss Stephanie - Gavin's "former" Occupational therapist!  She missed the party the other day so she came by today instead...and brought her beautiful children.  Elise is going to be four in a couple weeks - and Carter is two.  No surprise, they were the sweetest, most polite children.  And Gavin had a lot of fun with them in the playroom while I gave Stephanie her gifts!

The time flew by and before I knew it, I had to go pick up Brian!  Gavin, Miss Sara and I piled in the car to all get him together.  I was thrilled to hear that he stayed dry (I wasn't sure how he'd do with all the distractions at school!) and went to the bathroom by himself.  Woo Hoo!

We left school and headed to the Bus Depot.

We were there to meet Allison Erb, the wonderful Transportation Supervisor that arranged a school bus tour for us.  After talking with her on the phone a few times, I felt like I knew her.  She's just as sweet in person - and she and the safety coordinator went out of their way to make us feel comfortable.

So, if you ever wondered how a child in a wheelchair gets on and off a school bus, our beautiful model, Gavin, will demonstrate!  

Here is a video of him getting onto the bus...

 Brian had a great time seeing all the buses and sitting, for the first time, in a real school bus seat!

They showed us how Gavin's chair will be tied down.  The huge bolts and clips and heavy duty straps made me feel a lot more comfortable.  Then he wears a lap and shoulder belt on top of his seat belt and shoulder harness on his chair.  I'm pretty confident he's not going anywhere.

This video shows some of the tie downs...

Then he came off the bus!  Gavin was a big fan of going up and down on the chair lift...

And Brian was happy to meet his brother when he came down.  He had to be the one to pull his chair off the loading platform.  It was very sweet.

We are very grateful to Allison and her crew at Eagle Wolfington for accommodating us today!  Gavin, Miss Sara...and Mommy's heart...are all ready for the first day of school on Monday!

When we got home, there was one more surprise.  Brian's gift to celebrate his first day back to school!  I made him sit and close his eyes and wait for the big surprise.  Brian loves surprises - and takes it very seriously as you can see...

He got an Angry Bird spiral notebook!  Something to fill with stickers and drawings and letters and numbers.  My little, imaginative, potty trained school boy.

I can't believe I have two little school boys.

The Carnival King! (And other tales of success...)

Last night, Ed and I took the boys to a local carnival!  We thought BOTH of them would love it.  Brian would love the games and the ice cream...and Gavin would be all over the rides.  Well, we were half right.  Poor Gavin was having an "off" night and was sensitive to the noise, the crowds, the noise... there were a lot of pouty faces toward the end that caused us to call it a night.

But not before we had crowned Brian the KING OF THE CARNIVAL!!!! 

 He definitely takes after his Dad on this one.  Ed has always loved carnival games.  And over the years, I have had the joy of loving my big (huge is more like it), adorable (God those stuffed animals are cheap at carnivals), soft (they are so disgusting - can you even imagine the process of getting them from carnival to carnival???) stuffed prizes.  And boy, were they prizes.  (not)  I appreciated each and every one (so not) until they experienced an untimely death.  It was too bad.  (not soon enough)

Where was I?

We were very impressed with Brian's skills last night.  He had technique that would have impressed my Dad at the adult sized basketball game- 

And he charmed his way through the kid basketball game...

 ...inspiring the nice worker to give him a lift to the basket.

He played plinko with Daddy... 

 ...and was amazingly good at a bean bag toss.  He left with Ed's arms filled with toys and games (one cheaper than the next - but he loved them!)  

 And he even shared with Gavin!

A highlight of the night was getting a tour of a real firetruck.  Brian was a little too scared to go inside, but he loved looking at it from the outside!  Both boys got brand new fire hats from a real fireman, too, which was very cool.

This afternoon I took the boys for their "back to school" haircuts!  Or, Gavin's "first day of school" haircut, I should say.  Gavin looks very grown up, don't you think?

He will officially start school on Monday with Miss Sara!  They will get picked up by the school bus in the morning - and then Brian and I will pick them up after lunch.  Tomorrow all four of us are going to the bus depot.  They were nice enough to agree to a tour of his school bus before his first day!

Brian goes back to school tomorrow - same school, same teachers.  He's very excited.  It will be a big potty training test!  He's been doing great - only wearing pull-ups (we call them special underpants) at naptime and diapers at bedtime.

I was very happy with Brian's haircut today, too, and even learned a new boy haircut term.  A "fade."  Miss Silvia gave him a "fade" in the back and he looks so adorable.  I'm also very happy to report that Brian's acting skills are just getting better and better.  He went from this...

 to THIS in ten seconds!!  So convincing!

I also had a huge (hugely embarrassing) success.  I just found my diamond earring.  Hooray!!  Ummm....it was in my large bin that houses boxes and packages of tampons and pads.  Because that's just so obvious.

You have to admit, I keep things interesting.

Part of our Home...

Today was the day. 

 All of Gavin's therapists (minus Miss Stephanie who had a last minute babysitting emergency) gathered in our playroom so I could somehow, someway convey our gratitude...and our love for them.

When I made the decision not to send Gavin to school when he turned three, I hoped that it was the right one. I just wanted to give him a little more time to get stronger physically. And, as an added bonus, it would give ME time to get stronger emotionally. My life has been wrapped up in Gavin - I wasn't ready to let go.

One by one these women came into our home. One by one I watched my son fall in love with them. And one by one, they became a part of our lives...our hearts...and our home.

Gavin has changed a lot over the last two years. The progress he has made has been wonderful. Not every family gets lucky with therapists - they have to try and try and try again until they find just the right fit. Not us. Five therapists were dropped straight from Heaven just for Gavin. These five women will always be a part of our lives.

So today, we gathered. There was a giant cookie...a small present...and then a homemade gift. Talking about the last two years is one thing. Talking about the progress Gavin has made as he makes it is another. But seeing it all together in one short movie? That's something else. Something that requires a lot of tissues. Especially when you reach the end. You've been warned.

I give you...

home.