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.

 

Longing For A Simpler Time...

The events in Newtown, Connecticut this past Friday have left me feeling fearful, angry and out of control.  I'm sure I don't have to tell anyone what happened.  By now, the world knows that the United States has had yet another mass shooting.  This time, the shooter claimed the most innocent of victims - twenty children that were only six and seven years old.  And six more adults - teachers - that devoted their lives to their students.  Every time Ed or I heard or read another horrific detail - our stomachs would drop and tears would come.  It was Brian's birthday weekend so there was a lot of distraction, thank God.  And the TV was never on so the boys were shielded from gruesome news reports.

I am the first to admit that I'm an idealist.  I have never understood fighting or war or the need for guns. I think hunting is sad - perhaps I was so traumatized as a child when Bambi lost his mother that I just can't understand why anyone would kill an innocent animal.  I think everyone should just live peacefully and lovingly.  The end, with a big red bow on top.  And I don't understand why it is still - when we have experienced one shooting after another in this country - why it is STILL so easy to get guns.  And not just guns, but machine guns.  Guns with magazine clips that hold rounds and rounds of ammunition that can fire rapidly - Rambo style.  Who needs guns like that?  People who want to kill - that's who.  I am not going to get into a huge gun debate here - but suffice to say, I am hoping that the laws change.  I understand, more than most, that the mental health system is broken.  That regular, law abiding citizens have guns responsibly - and that put in the wrong hands, guns are deadly.  And I know that the people who shouldn't have guns need to have easier access to mental health assistance.  But that is a mountain - so, in the meantime I want laws to change. I am praying that it will become just as hard to get guns and ammunition as it is for me to buy Sudafed at the pharmacy.  Or just as hard to get and maintain a drivers licence and car insurance.  Just as hard to adopt a child - with home studies and classes and more.  I know I am an idealist - but more checks and balances at the gun shop and especially at gun shows and banning guns that should only be used by the military seems like a pretty simple place to start.  Then we can address everyone's mental health.  (After this experience, someone will need to address MY mental health.)

But I also know the world doesn't work that way.  I know there is evil and people do terrible things.  Ed and I have both been victims of pretty violent crimes in our lifetime, so we know this first hand.  Which is probably why what happened in Newtown has me frozen with fear.

I did not send Gavin and Brian to school today... out of fear.

I wanted to hear from both of their schools before I felt better about sending them.  I wanted to know if they have protocols they follow if, God forbid, something like this happened.  I was also very afraid of "copy cats" trying to make a name for themselves and "out do" the shooter in Connecticut.  Maybe I was being a little irrational, but I didn't care.  Keeping them home made us feel better.

I called Gavin's school first and spoke with the Principal.  Gavin's special needs classroom "rents space" in a local Kindergarten center.  That means that Gavin's teacher is not really part of the faculty there - technically.  And that also means that the email sent out regarding the school shooting to all the parents who have kids in that school never reached me - since we aren't technically part of that school!  I was happy I called when the Principal realized that she hadn't been including Gavin's teacher in her faculty meetings.  I asked if she could go through all of the safety procedures with Miss Megan, the two classroom aides - and even Miss Sara.  She assured me that she would begin doing that immediately.  She obviously wouldn't go into detail about their safety procedures - but what she could tell me about the steps they'd take and the drills they have made me feel a lot better.  

I was also reassured after talking to the principal of Brian's school.  His situation is similar to Gavin's.  His classroom "rents space" in a school - but it's a high school, which has always made me a little nervous.  The principal assured me that the placement of Brian's classroom is far removed from the older kids (which is true now that I think about it).  She also told me that Brian's teachers are included in all of the drills and know all of the safety and security protocols.  

Neither Principal reacted in a judgemental way to my questions, concerns or my cracking voice at times.  They calmly reassured me - they told me they are always available to me if I have further questions - and they thanked me for calling.  Both schools are on high alert, as you can imagine.  I think all of us will be for a while.

My heart just breaks for every family affected by the Newtown, Connecticut shooting.  The parents, the children who saw too much, the surviving teachers and staff.  The first responders who will never be able to erase the images of the children they found - the adults they found.  The clergy, the Governor and everyone who was there when the parents were told that their child was killed.  It's all just too much.  And when you have children around the age of these twenty victims, it feels unbearable.

I long for a simpler time.  I shouldn't feel afraid to send my children to school.

*****

Let's lighten this up, shall we?

After we left "Build a Bear" yesterday, we walked through the mall to get a cookie snack!  As we started back towards the exit, a woman shouted "Ed! Ed!!"  I was ahead of Ed and Gavin, so soon both of them were shouting for me.  I turned around and saw Ed talking to two women and figured he knew them from work!  I walked back expecting to be introduced.  As I stood there, it soon became apparent that I should know this woman.  She clearly knew us - a lot about us!  I've been approached in public before by blog readers who "know" us - but I've never met - so I thought this must be one of those times.  I did have a sneaking suspicion that this woman might be "Miss Barb," - but she didn't say anything that identified her as such.  And I'd never met her in person, so I wasn't sure!!  She mentioned that she was staying at a local hotel, so when I got in the car I called there and asked for her name.  Sure enough... it was her.  I felt AWFUL!  I left a message to call me - and she did.  She and her sister were heading back home to New Jersey today, but they stopped by to visit for a few hours this afternoon!!

I have mentioned Miss Barb so many times over the years.  Without ever meeting her, she has become an adopted Grandmother to Gavin and Brian - and a good friend to our family.  She started reading my CaringBridge journal  after my cousin, Michelle, sent a note out to a group she volunteered with asking for prayers for Gavin.  It was back when he was hospitalized as an infant for months and months.

Barb is a retired school teacher and has sent the boys boxes and boxes and boxes (and boxes!) of books over the past four years.  She has remembered every birthday with presents and cards.

And she has sent me hand written letters of encouragement after some of the more difficult times - like losing Darcy.  She is truly one of the kindest women I had never met... until today.

It's ironic that I would combine Barb's visit with the school shooting.  I have always admired teachers - who dedicate their lives to helping, nurturing and protecting the children of the world.  Barb has been a helper and a nurturer to our family for several years now.  I know she must have been a fabulous teacher.  And I'm grateful that she is in our lives.

And I'm grateful for Gavin and Brian's teachers, therapists and aides.  They care so much for my children and I know they would protect them.

Giving...

If there's one quality I want to foster in Gavin and Brian, it's generosity.  I want them to be generous with their time, their love, their spirit and their good fortune.  Growing up, my parents encouraged giving to those less fortunate than us...and my Dad and I loved to do volunteer projects together.

Since the day Gavin was born, I feel like we've been on a constant receiving end of generosity.  When he was hospitalized, people brought us meals.  When I lost babies, people brought us meals.  (People have brought us a LOT of meals to the point that I started to think of things I could make up JUST to get these amazing meals)  Neighbors and friends have sent us hand me down clothes.  Other friends and neighbors have given us toys.  Blog readers have sent care packages and toys.  One especially generous blog reader, a retired school teacher who we lovingly refer to as Grandma Barb, supplied the boys with what seems like a lifetime worth of books!!  We have been so blessed by so many people.

So, it has felt really great over this past year or so to give and give and give.  But, more importantly, it has felt great to know that two little boys are watching.  Whether it's something small - like handing a dollar to Brian to put in a serviceman's can on Veteran's Day... or handing five bucks out the window to a Penn State student collecting money for their Childhood Cancer campaign - or something big like giving baby gear and clothes and toys to Gavin and Brian's speech therapist or packing up boxes for hurricane victims - they were watching.  And Brian always has tons of questions.  My answers always include a story about Pop who was truly the most generous person I've ever known.  He taught me that it doesn't matter how little you have - you can still manage to give something big and make a difference in someone's life.

Last week, I purchased a castle climber and slide with the intention of giving it to Gavin's classroom.  I bought it from a local Mom - she practically gave it away for $20.00! - and she was so happy to know it was going to help Gavin and his friends.  I thought it would be a great indoor activity and therapy tool during the cold winter months when they can't go outside.

It was at our house all weekend and I cleaned it up well so we could deliver it today.  Brian had a LOT of fun playing on it this weekend so I was a little bit fearful that he would have a tough time letting it go.  Okay, a lot a bit fearful.

But I was wrong.  I loaded it in the back of the van and Brian and I drove to Gavin's school to pick him up.  The whole way there he talked about how happy Gavin and his friends were going to be when they saw it.  I was so proud of him.  We carried it in and he demonstrated how to climb and slide and that was that!!

While we were there, I had a chance to chat with two of Gavin's therapists.  Whitney, on the left, is Gavin's Speech Therapist - and Erika is his Occupational Therapist.  They both are so great with Gavin and you can tell that he really adores them.  

Whitney told me that they were working hard on lip closure today.  Just like Maggie did, she adds crushed crackers or rice krispies on top of his puree and uses a flat spoon to encourage him to close his lips around it.  Generally, he scrapes everything with his teeth.  Lip closure is an important step in speech and language development.  She's been using massage around his mouth and bringing bubbles to his lips as well!

Erika worked with him on feeding as well.  She's trying to encourage him to feed himself.  He was doing well with that for a while...but, in Gavin style, went on strike for a bit.  To get him back in the groove, she used a technique called "chaining" where she'd leave the spoon in his mouth so he'd be forced to pull it out himself with his hand. Tricky, eh?  As a reward after therapy, she bounced him on the big therapy ball which I am SURE my little daredevil just loved.

Tomorrow is a big day!  It's Gavin's first school picture day!  I'm sending Sara to school with props to entertain and make him smile.  Her job is depending on how good these pictures turn out so... good luck with that, Miss Sara!  (don't worry, I'm just kidding.  or am I?)

Brag Fest...

Yesterday's one year anniversary of my father's passing was a little harder than I thought it would be.... and a little easier than I thought it would be.  Like most things with me, that doesn't make sense to anyone but me.  But that's how it was - one minute okay, the next minute not.  Thank you for the kind comments on FB and personal notes.  It meant so much to be remembered - and to know that my Dad had an impact on some of you.  Even those that never met him!!

I'm really grateful to Ed.  He lost his parents young, so he's had a jump on this "losing a parent" thing.  He went out of his way to show me comfort and compassion and for the last several days has been such a great friend to me.  Thanks, Ed.

Gavin is doing so well in school - and today was no exception!  

Thursdays are a busy day for him as every therapist crams in their sessions on that day for some reason.  He sees his physical therapist, his speech therapist and his occupational therapist... in addition to his school activities!  He came home exhausted today and even took a short nap.  Sara told me that the principal was in for a visit the other day.  Gavin was all smiles during her visit and she even sang and played "Itsy Bitsy Spider" with him - totally winning him over!  When they told her that Gavin was doing a "Marathon" in Physical Therapy and showed her the awesome chart that Sara made to keep track of his progress - she came up with a plan.  She told them to let her know when Gavin is doing his final lap in his 5K... and she'll have the whole school come out and line the hallways to cheer for him.  Typing that makes me cry.  Can you just picture that long hallway FILLED with the entire school of Kindergarteners and teachers?  I will definitely be there on that day - with my camera.  And I may not even try to hide it.  What a moment that will be.

Brian is also doing really well.

His speech is improving every day. Miss Maggie, his speech therapist, has been writing to me that he's been helping and encouraging other kids during therapy!  What a switch from last year.  I've been very proud of his behavior overall at home, too.  Sure, we hear whining every now and then - and the occasional "Gavin is touching my toy/head/chair/foot/whatever" - but it's not anything I'm worried about.  He is such a loving child.  At bedtime he's been saying things like, "Mommy, you're my best friend."  Or, "I love you and Daddy and Gavin and Granny and Pop in Heaven and Sara and my teachers and my friends."  Or, "I had so much fun today. Thank you Mama." This kid is a total ego boost.

Tomorrow is Gavin's day for a LOVE BOMB!  In the morning we have our joint Dr. Trish appointment - and after that, we're going to spend the day together!  I only have three things planned so far - rides at Arnold's Family Fun Center... lunch... and picking up a castle/climber/slide that I purchased for his classroom.  Gavin is VERY easy to entertain - which puts a lot of pressure on me.  I could easily take him to the grocery store and he'd have a ball, but that doesn't seem "good enough" for a Love Bomb day.  We'll just have to play it by ear.  We'll be together - just the two of us - and that's all that matters.

This post was a total brag fest.  I can't help it.  Can you blame me?  I love being a Mom.  I really, really do.

I Dreamed A Dream...

Look at this long, long hallway.  As Gavin's Mom - I have walked a thousand long hallways with him. Some looked like they'd never end.  Some were dark and dismal.  Some made it feel like I'd never reach that light at the far end.  But yesterday - this long, long hallway was like the yellow brick road.  It was a journey to a new beginning.  It was a symbol of how long his journey has been to get where he is today.  Yesterday was one of the highlights of my five year journey as Gavin's Mommy.

I spent yesterday morning with Gavin at school.  And he walked me down that hallway.  Yes, walked.

And then he walked me all the way back.

I've always been a champion of Gavin - and I've always believed that he'd accomplish much.  But for some reason, being there with him at school and walking with him holding his hand - it was a feeling I can't explain.  To say I never thought I'd see this day would not be true - but to say I felt like I was experiencing something I'd only dreamed of would be entirely accurate.

Getting to see everything that I have only been hearing about was wonderful.  Like circle time!  Gavin clearly listens and participates.  (All of these pictures were taken with my super stealthy spy camera - aka my iPhone - so excuse the quality)

Here's a video of him saying "hello" during the "Hello Song."  His little friend, Jamie, who was sitting next to him was so patient while waiting for him to push his "hello" button.  Gavin is all about the suspense...

He was given a choice after circle time.  Miss Megan held up a photo of the kitchen area (GENEROUSLY donated by my wonderful neighbor, Patti!!)...

...and the floor mats, which you can see behind him.  He's a smart kid.  He chose the kitchen - played there for a little bit - and then hightailed it over to the mats before playtime was over.

Seeing Miss Sara in action solidified my decision to insist that she go to school with him.  She is absolutely essential.  Gavin never has to miss out on anything... he can participate equally in everything... and he has a buddy who knows him so well.  

Miss Megan, Gavin's teacher, has done a wonderful job with the classroom.  It's bright and cheery and the layout is easy for Gavin (and all the kids!) to navigate.  He really loves her - I can tell.  And he is so happy at school - as you can see...

As I was in the principal's office signing out to leave, I told the secretary that my visit was one of the highlights of my life.  She turned her head and looked at me quizzically.  There was too much history involved for a short explanation, so I just left it at that.

But you and I both know... Gavin has come such a long way.  And truly, there is no hallway too long that I won't travel with him.  And truly, there really is no dream too big I could dream for him.  I'm so lucky to be his Mommy.

The Marathon Man...

If I haven't mentioned this before, we love Miss Sara.  She has been an extraordinary helper to me, Brian and, most importantly, the best buddy to Gavin.  Not to mention, I really enjoy hanging out with her - we laugh a lot!

Sara is a runner and likes to do marathons.  Lucky for her, I don't hold that against her.  She did her first marathon this past April.  The morning of, she posted the following photo on her Facebook page...

...and wrote this:

My inspiration for today's race -- Gavin. Every time I look down at my hand today, I'll remember all the times, especially in the past few days that he has used it to try to walk by himself or stand on his own, and just the thought of that will get me through another mile. There is no doubt in my mind that one day, with his determination, he will be running right alongside of me. 

 I know you're reaching for a tissue right now.

Fast forward to now.  Gavin is doing so well walking using his walker or holding onto our hands.  He is often seen cruising the hallway at school in his walker!  So, Miss Wendy (physical therapy) and Sara came up with the idea of tracking his progress.  When Gavin walks from his classroom down to the end of the hall and back, it's a tenth of a mile.  They are going to chart his progress until he reaches "half marathon" status.  Wendy asked Sara to come up with a creative chart, and this is what she did!

The "0429" is the date of her first marathon - the one where she wrote Gavin's name on her hand.  Full circle.  He "helped" her get through her marathon... and now she will help him.

I'll wait.  Go ahead and reach for that second tissue.

Gavin and I have been training at home with his shopping cart.  He pushes the cart while it's filled with heavy cans of Pediasure.

I'm not sure who is getting the harder workout.  Gavin - who likes to walk so fast he's about to run - or Mommy - who struggles to walk backwards videotaping and photographing and trying not to get run over!  Whew!  Take a look at how the little Marathon Man is doing...

His progress amazes me every day.

And finally, for those who may be down in the dumps or going through a tough time right now - I have a temporary remedy for you.  Last night, while I sat in bed, I listened to this on Gavin's monitor for about a half hour.

You're welcome.

Dealing With Uncertainty...

Brian has been home from school the past two days - he has a cough and the sniffles.  It's hard to say if it's a cold or allergies but either way it was a great excuse to stay home and hang out with his favorite Mommy!  Each day we watched Gavin and Miss Sara head to school on the bus...

...and then we'd get down to business.  We conquered important projects like Pirate Ship steering, fort building, train track management and fending off dinosaurs.  Although, judging from what snuck into my back pocket - unnoticed until the next morning - I'm not so good at the "fending off" part.

On Monday, when we pulled into Gavin's school parking lot, we were surprised by two huge fire trucks!  The whole school was treated to a presentation about fire safety.  Gavin learned all about the trucks and equipment - and even got to climb in and explore the inside!  

He even got a shiny new fire hat from the nice fire man.

Gavin is still doing so well in school - and loving his new therapy team.  Sara tells me he really enjoys working with paint - loving when it gets all over his hands!  The boys often bring art projects home from school.  I have memory boxes for each of them (Gavin's is nearly full!) and save some of the art projects - but it's really impossible to continue to save all of them.

I recently discovered the most adorable app to help me with my dilemma!  It's called ArtKive - a place where you can safely "archive" your kids art!  When I got it, it was free.  I have no idea if it's still free - but I highly recommend it either way!  Whenever the boys come home with some artwork - like when Gavin came home with his apple tree...

...or Brian came home with handprints and extra love for his Daddy...

...I take a picture of it with my phone.  Each of them have their own file of artwork and as it comes in it automatically gets shared with Ed.  Ed gets it in his email and is prepared to gush over their masterpieces when he walks in the door from work.  Seeing the boys faces light up with pride is the best feeling ever.

Last Friday the boys had a dentist appointment and, thank God, had good check ups.  I don't ever want to project my dental phobias onto the boys.  So far they have NO fear and get lots of compliments from the dentists on their behavior.  And I get compliments on their hygiene.  Whew.

 They give the dumbest, cheapest toys after their dentist appointments...but Brian, especially, treats them like gold bars.  I'm thinking of shopping at the dentist for Christmas.  They are on to something.

 This Thursday I'll be taking Gavin out of school again to head to DuPont.  We'll be meeting with his genetic team and getting some blood drawn for testing.  We've been dealing with some uncertainty since Gavin's genetic testing came back and it's a little stressful.  If you could send lots of positive thoughts his way and ours, we'd appreciate it.  I apologize for being cryptic, but it's not worth stressing multitudes of people if it turns out they are wrong.  We'll just have to wait and see.

They say when you're dealing with uncertainty - you should focus on things you can control.  So I choose to control my attitude and keep it positive.  And I keep focused on Gavin who continues to amaze and inspire...

Thank you for loving my family.