Friday, August 31, 2012

Hitting a Nerve...

I just write.

The days happen and I just write about it.  The good, the bad, the ugly.  That's what I'm compelled to do.  And I never know what will affect someone or what will strike a nerve among many.  I don't think about that.  I just write.  Because I have to.  Because I need to.  Because it helps me.

My greatest wish is that one day Gavin and Brian will come upon this journal like a bottle washed up on the beach.  I hope that they sit down and read it and feel a connection with me that they hadn't before.  A connection to me as a person - who also happens to be their Mom.  I hope that they don't read it thinking "She's trying to look like a good Mom."  I hope they read it and see that I tried.  That I felt everything deeply because that's who I am.  That I worked hard to learn every inch of them so I could make the best choices.  I hope they see that I'm human.  That I made mistakes.  That I got angry and sad and depressed and lonely.  That I went overboard celebrating them because it was the obvious thing to do in my eyes.  That I developed dark circles staying up researching ways to help them or heal them. That I loved them so much and wanted to document every single moment so I never forgot it.  I want them to take this journal into their life journeys and know that they don't have to be perfect to be great.  In anything.  They just have to try.

I just write.

And yesterday, you read.

Since yesterday morning when I posted "Flashing Lights...", over a thousand people have seen it.  It has been shared on Facebook pages as a "School is open" type of reminder to be patient with school bus pick ups and drop offs.  It has been shared by parents who are also struggling with the high emotion of sending a child off to school...whether their child has special needs or is typically developing.

And your emails.  Wow.  Thank you to SO many of you who have emailed me with your kind words, similar emotions, fears for the future and the simple "I get it."  Thank you to those who understood me this week.  Because it wasn't just about the run in with a Principal or the beeping neighbor or the first day rain storm or the person at the bus window impatiently shouting.

It was about letting go.  

This week I was walking on thin ice, emotionally. 

To those who didn't understand...who thought I should "suck it up, it's just school"...who told me I was overreacting to everything...that's okay.  That's who I am.  If I wrote that I felt something different - it wouldn't really be an authentic blog.  I can't help what I feel or who I am.  Ironically, the posts I write from my heart when I let it all out are the ones that generate the most mail.  It hits a nerve...which means that whatever I may be feeling, someone else is too.  And now that person - and me - feel less alone.  And a little more free.  That's an amazing feeling for someone who just wants to write.  

The week came to an end yesterday - Gavin completed his first week of school.  He met new friends and made first impressions.  He worked with new therapists and did lots of new things.  He walked down the halls of his new school in his walker and met an entire Kindergarten class.  He made art projects and filled the refrigerator door with pieces of pride.  His...mine...everyone's pride.

Tuesday we will begin again.  Each day will get easier for me. Gavin is so happy - and even with his broken finger which will be taped for ten days, he continues to smile and amaze us all.  Even though it's hard to watch that bus drive away, I know it's taking him into the bright future he deserves.

And I'll be here to write all about it.

Thursday, August 30, 2012

Flashing Lights...

I probably shouldn't write this post.  But I'm going to.

I probably shouldn't let certain things upset me.  But I do.

I am sitting here in my kitchen in a very quiet house.  I only hear an occasional sniff which reminds me that I'm crying.  I can't believe I'm crying.

This has been a very taxing week for me.  Physically and emotionally.  New wake up times, new routines, new therapists and new teachers to meet.  Driving much more and lugging things here and there.  Collapsing into bed at night and working through major arthritis stiffness in the morning to get moving more than an hour earlier than usual. Trying to figure out boundaries when before there were none.  Trying to figure out my new place in my son's life during the day when before it was all about us.  Waiting anxiously to pick Gavin and Sara up to hear about their day - and bummed at how much I miss.  Trying hard to make things normal and just as exciting for Brian, too.  Then taking Gavin to the emergency room last night and finding out he broke his finger.  Now waiting to hear back from his regular hospital so he can see his orthopaedic doctor as soon as possible.  The stress never ends.

But the one thing that brought me to my breaking point this morning...that has me in the school bus.

Let me introduce you to the two wonderful people who keep my precious little boy safe on the bus ride to school.

This is Bruce and Marie.  Do you know that Bruce was once in the Air Force?  And Sara tells me that he is such a safe driver.  His biggest concern is making sure that his 'precious cargo' are happy and safe on the bus.  And then there's Marie, the bus aide that helps get the children buckled in and strapped down.  She's an avid quilter, just like my Mom used to be.

This first week, everyone's trying to get used to everything.  Me, the teachers, Sara, Gavin and, of course, Bruce and Marie.  When they arrive to pick Gavin up, they lower the wheelchair ramp.  Then they lift it up and Marie pulls Gavin's chair back into the bus.  Gavin rides to school in his wheelchair and there's a process to secure it.  Straps that are bolted to the floor need to be attached to all different areas of his chair and then tightened.  Then they need to put belts and straps around him as well.  It absolutely takes some time - and this Mom is glad about that.  Bruce and Marie don't let anything distract them from making sure that both the wheelchair and Gavin don't go anywhere.

I would like to think that I'm a considerate neighbor.  When I noticed that it was a rather long process, I sent out a mass email that reached 93 out of 95 of my neighbors to explain to them that there might be delays on our street at that time in the morning.  Our street is one of the exits out of the neighborhood so I thought if they needed to change their routine they could go out the other exit if they didn't want to wait.  Just to give them a head's up.  And I said in the email that if they did choose to wait, that perhaps they could say a little prayer for Gavin as he begins a new journey away from his family.

This morning we were all outside waiting for the bus to come.  Brian entertained himself by sweeping the driveway.

Finally, the bus came and once they lifted Gavin in and folded up the lift, Brian and I went back inside while they strapped Gavin in.  I had to get Brian ready to drive him to school.  I happened to look out my window and saw a car pull up behind the bus.  After about a minute, a person got out of the car and walked up to the bus - peering in and saying "What's going on?!?".  Then got back in the car only to get out again another minute later to look in the windows of the bus again.  I felt my heart beating out of my chest.  I ran outside and all the way up the driveway and explained what was going on...trying to stay calm while my heart was beating out of my chest and my blood pressure was quickly rising.

Then I put Brian in the car and tried very hard not to cry as I drove him to school.

So, I was thinking about putting a sign on my front lawn.  Maybe "Expect delays - a little boy in a wheelchair needs extra time to get on the bus".  Nah.  Maybe "Patience is a virtue.  Count your blessings."  Nah.  Maybe "Tread lightly on the heart of the Mom who lives here."  

I don't really know what to say, but I'll tell you what my biggest fear is.  That this is just the beginning.  That people will feel inconvenienced by the time it takes my son to do things.  Or worse...that Gavin or Brian will  catch on and it will hurt them in some way.

If you are reading this and you live near me, please...please be patient if you see those flashing red school bus lights.  This child, who we were told may never even sit up, is going to school!  On a bus!  And the Mom inside this house - she's trying so hard to let him go.  Please...please don't make this harder for any of us.

Wednesday, August 29, 2012


Well, I guess I should have known the day would end as crazy as it started!  Where to begin...

I'll begin at the end.

Gavin broke his pinky finger tonight.  It was a total accident.  I had just gotten him down from his high chair after eating his dinner.  He crawled towards the art table and I got distracted with Brian - no big deal as Gavin always roams around and is just fine!  But then he crawled towards the slider to look outside to the back deck where Ed was.  Problem was, Ed didn't know he was there and slid the door open while Gavin's hand was in the track.  After a bit of initial shock on Gavin's part, we knew it was bad when he started screaming and writhing in pain.  

We scrambled to get packed up in the car and I sped to the Emergency room with Gavin.  Ed stayed behind with Brian who was pretty un-phased by the whole ordeal.  Poor Ed was in total guilt mode and blaming himself - but honestly, it really was a complete accident.  If he's to blame, then I am too for not watching Gavin like a hawk.  An impossible feat - so there's no blame.  Things happen.

By the time we were at the end of the driveway headed towards the hospital, Gavin was watching his DVD in the car and smiling.  And he never shed a tear after that.  He's one tough kid.

He's wearing a splint for as long as that lasts.  
I'll also be calling his regular Orthopaedic doctor at DuPont tomorrow for a follow up.   
I can't believe it.  I went 42 years without ever breaking anything (well, maybe a few hearts along the way - but enough bragging). 

Now let's get to the good stuff.  School!!

Gavin had another great day!  He once again loved circle time and the hello song...and pushed the button to say hi to everyone when it was his turn!  He also had a GIANT accomplishment during music time!  One of his goals in his IEP is to hold a toy or an object in his hand for thirty seconds or more.  During music, each child was given an instrument to play - and Miss Megan gave Gavin a Maraca.  He held it and shook it for FORTY TWO SECONDS!  Just to be sure it wasn't a fluke, they tried again.  Second time - 25 seconds.  And third time was a charm - FIFTY THREE SECONDS!!  That's one check off on his goal sheet!!

Gavin also did some self feeding and did a great job.  And they took him outside with his classmates onto the playground where he walked around in his KidWalk.  

It's still so weird to be hearing all this second hand... and to not be showing photos of everything.

While Gavin was at school, I picked Brian up at his school and chatted with his teacher.  Brian was very excited to tell me that he earned enough tokens to pick a prize from the prize box!  The kids get tokens when they make good choices during the day.  Miss Laura, his teacher, said that he is still very well behaved in school and he talks non stop from the time he gets there to the time he leaves!  He's doing so well that his speech therapist, Miss Maggie, recommended that we reduce his speech services from twice a week to just once a week!!  He was getting individual and group.  The individual therapy was to work on articulation needs - which she now feels are age appropriate.  The group was to work on social language skills and that's what will stay the same.  I'm thrilled for Brian and so grateful to Miss Maggie for all her hard work with him!  Actually, I'm so grateful to his teachers, Laura and Morgan, too.  Sending Brian to school was the best decision I was terrified to make.

After lunch, Brian was very excited to pick Gavin up at his school!  Gavin was really happy to see his brother.
I also had a chance to chat with the Principal at the school - the one who had gotten upset with me on the very first day.  You can read about it here.  She introduced herself and apologized a hundred times to me for her behavior.  It was pouring rain - one of the first days of school - people were in and out and there were lots of new faces.  Even though I told her what I was doing and that I'd be carrying things in and out, she must have forgotten.  She said she saw me carrying equipment and thought I was an aide or a therapist - she didn't realize I was a parent.  She admitted that she had been pretty short with me and was so sorry.  She explained that she was quite the "Mama Lion" in order to protect all these children at the school - and I told her I greatly appreciated that, for sure!!  I told her that I went to Catholic School and have a fear of authority (no comments, please - especially you, Mom) and I was so upset thinking I was in trouble.  She warmly told me that I was welcome to come into the school at any time.  She also said she went in and met Gavin this morning and when I said, "He's pretty adorable, isn't he??" - she agreed.  See?  We already have things in common!  She's really a lovely person.  And now I can breathe.

Speaking of breathing - I didn't do much of that this morning!  All week the school bus has been almost 20 minutes late.  We were told to be ready at 8:10 for an 8:20 pick up.  Today we were a little relaxed about that because of the track record.  As we were in the garage getting Gavin into his wheelchair, I heard the bus.  Oh boy.  I quick got him buckled and went running up the driveway and across the grass yelling "WAIT!" where the bus had pulled up and stopped in front of my neighbors.  Sara grabbed his bags and was running behind me.  Barefoot Brian was running up the driveway crying yelling "WAIT FOR ME!"  It was quite a scene.

The good news is, they waited.  And Bruce told me "Dont' worry, we'll never leave you."  I guess he liked those brownies!!  


Tuesday, August 28, 2012

The Singing Superhero...

This morning Gavin had company at his "bus stop" - Brian came out to be the official Bus spotter.  Although he lost interest after a while - the bus was fifteen minutes late again.

I know it's the first week and everyone is working the kinks out, so I'm not upset about it really.  And Bruce, Gavin's bus driver, is new and learning the ropes with a trainer - so he gets lots of slack from this grateful Mom.  He's taking care of my child, after all!

Sara says he's a super careful driver.  But there is this one little issue that I need to figure out.  It is taking them close to ten minutes to get Gavin's chair strapped down before they leave.  Meanwhile, I'm sweating bullets watching my neighbors lined up trying to leave the development.  I can practically see their white knuckles from my house.  I think tomorrow I'll ask if they can turn off their flashers and pull in the stop sign once Gavin is securely on the bus.  That's what I'll do.  I am brilliant.

I neglected yesterday to get Miss Sara's "First Day of School" picture, so here you go...

Things are so different around here.  Leading up to this week, lots of people said to me, "You won't know what to do with yourself - you'll have so much free time!"  The reality is - I don't.  I see Gavin on the bus...then take Brian to school...before I know it, it's time to pick him up.  Then we come home and have a lunch date (which I really love - just the two of us!)...

...and before I know it again, it's time to go pick up Gavin and Sara!  I'm lucky that Ed's home on a "stay-cation" this week.  Today, Brian was trying to poop on the potty and I had to leave to get Gavin.  I was able to leave him home because Ed was here.  I'm not sure what will happen if I run into that kind of issue next week!!  

So...I know you're all dying to know about Gavin's second day.  Well, according to Sara's detailed report, it was better than the first day (and the first day was pretty darn good!)

Reason number 278 that I'm happy Sara is there...she knows what to celebrate.  Today, there was LOTS to celebrate!!  Gavin blew her away.  Here are a few highlights...

The class was doing an art project - making a school bus out of construction paper.  Gavin allowed the teacher to help him rip pieces of construction paper. (huge)  Then, he picked up a glue stick.  On his own.  (huger)  He didn't mind when he was helped to rub glue on the paper and then press down the strips that he had ripped.  Amazing.

My fist school art project from Gavin.  (School out of this house, that is)  It's already on the refrigerator and will make it's way to his overflowing memory box.

Also, during circle time they sing a "Hello Song" that goes "Hello Gavin, Hello Gavin, Hello Gavin, it's nice to see you here" or something like that.  After they sing with each child's name, the child then has to say hello by pushing a big red button called a "Big Mack" which has a voice saying "hello."  When it was Gavin's turn - he was asked to press it and he DID IT!  On command!!!

This is the thing.  No one really knows how AMAZING these things are except Sara!  I'm so happy she's there to tell them why she's suddenly doing the jig in class.

When I went to school to pick them up (waiting patiently at the curb, of course!) I couldn't wait to see him.  They both came out smiling and happy!!

So, if you were wondering how Gavin's day was...and how he feels about school... well, I'll let him tell you himself.  

Click below...

Monday, August 27, 2012

Watching the Taillights...

I was up before my alarm - and I thought before the sun.  But then I heard it - rain.  Hard, pouring rain. My biggest fear for Gavin's first day of school.  

Miss Sara arrived bright and early and we got Gavin fed and changed and outside in his chair in record time!  His bus pick up is scheduled for 8:20am, but we were asked to be ready outside at 8:10.  I am nothing if not a rule follower (no comments, please) so we were out in the garage (and not at the requested curb which is a long driveway walk away) at 8:10 on the dot.  Did I mention it was pouring?

At 8:20am, we decided we better get up to the top of the driveway.  I covered Gavin's legs with a towel and Sara and I both had golf umbrellas to cover all three of us and his chair.  What a mess.  It did get me thinking a lot about rain and cold and snow and how I can protect Gavin from the elements while he's in his chair.  The sun shade that comes with this chair is not great - and he'd have to take it off on the bus.  I did get one thing figured out - I made brownies with a card from Gavin for his new bus driver, Bruce.  Hopefully Bruce will be okay with us waiting in the garage on really bad weather days like today.  Damn, I wish I was a better baker.

Finally the bus pulled up and I felt my heart start to pound.  We had been standing out in the rain for close to 15 minutes, but I was happy to stall.  The crew that picked Gavin up was very, very nice.

Gavin loved the lift and stayed nice and dry on the way up, thanks to Sara.  

They had a little hiccup strapping him down. As I stood behind the bus with my camera, I watched a line of neighbors on their way to work stop and wait for the bus lights to stop flashing.  It was probably a good five minutes that felt like an eternity.  Again, I was happy for the stall.

Finally, the time had come.  The doors closed.  I held my breath and watched the taillights as the bus holding my little boy rolled away.  That's when the tears and hard.  Just like today's rain.

I loaded up all the extra things he'd need at school - diapers, his wheelchair base and tray, and tons of toys I was donating to the classroom - and headed over to the school.  The bus was just arriving when I pulled up.

Luckily, the rain stopped for a short while and this snap happy Mommy was able to get a lot of photos of the big "first day!"

In the interest of full disclosure, some of these pictures were taken today...and some of these pictures are "fake first day" pictures.  I was worried about the first day and between unpredictable weather and unpredictable first day chaos, I didn't want to feel bummed that I didn't get good shots.  So, that's my secret.  But I'll never tell which ones were today and which ones weren't...

Sara and I walked Gavin into the building and waited until the teachers retrieved Gavin's classmates from the bus.  By that time it had started to pour again and I felt terrible for the little ones in wheelchairs that got soaked.  Reason number 573 that I'm so happy Gavin has Sara - something like that would never happen to him.

I walked back to the classroom to see him in and immediately met his new Speech Therapist, Miss Whitney.  She and I chatted for quite a while and she had seriously done her homework on Gavin!!  I was so impressed.  She will be there all day on Tuesdays and Thursdays to work with the kids in the classroom and observe them doing their own thing.  Then she will work individually with Gavin for speech and feeding.

While I was talking to Whitney, the class had already started their "Book Time."  I looked over to see Gavin sitting in a little chair with no supports while Sara read a book to him.  He clearly settled in quickly and easily.

Before I left, I had to carry in everything I loaded into my car.  Each time I had to ring to get buzzed in. I'm not sure the Principal knew what I was doing so by the last time - when I had to quick run in because I forgot my bag - she had "had it" with me and answered the door with a "Can I HELP you?"  I was mortified and instantly felt like I was in trouble.  Apparently, I am.  She had a chat with Gavin's teacher and requested that Gavin and Sara meet me outside when I come to pick them up.  Great.  I'm already in trouble on Gavin's first day of school.

All throughout the day, Sara was keeping notes.  She did this unprompted.  She even bought the notebook herself!  She wants to write everything down each day so I will know what's going on (I love her)  - and then I can keep it as a keepsake for Gavin's memory box (I love her a lot).  She told me everything on the way home, but having this book means so much to me.  Just look at one page of today's notes!!  (If you click it, it will get bigger!)

When I made my last trip in to pick them up (before I was banished to curb side pick up) I chatted with Miss Megan.  She said that Gavin had a great day and was such a joy to have in class.  Gavin seems to really like her a lot.  (And Sara does, too!)  Sara said that Megan reminds her of Miss Janna...and we all know how much Gavin loves Miss Janna!!  I have a feeling this is going to work out just fine...

As we left for the day, we stopped outside for a few more photos.  I was trying hard to capture the emotion on Gavin's face.  I think these last one's - at the end of his first day of school - really do.

Sara told me that during circle time, she felt a little hand on her shoulder.  When she looked over at Gavin, he was grinning from ear to ear and looking right at her.  I can only imagine what he was thinking...but I bet it was something like, "I'm so glad you're here with me!"

Coincidentally, Ed and I feel the same exact way.

We did it.  We survived the first day of school.  A new journey has begun.

Sunday, August 26, 2012

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

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