Sunday, April 19, 2015

Close As Our Own Backyard...

"How many children do you have?"

It's the question I love.  It's the question I dread.  Most of the time I just say, "I have four!" and hope they leave it at that.  But they usually don't.  There are some that want more information, as I would.  Boys, girls?  How old are they? Do they all get along?  I take a deep breath - knowing that this could be the conversation ender right here...

"I have four, but two are in Heaven."

Silence.  Gasp.  Then comes the I'm sorrys and the awkward comments and wide eyes that scream "get me out of this conversation!!!"

No one likes to talk about death.  It's just the truth.  But where does that leave the Mom who wants to talk about the life of their child?  I love to tell people that I got to hold Darcy for 5 1/2 hours on Mother's Day.  My first Mother's Day as a Mom of a daughter.  I love to talk about Gavin, as you know, and tell people how incredible he was.  But death has a way of becoming a big road block.  That's unfortunate.

I also love talking about my two children that are here on Earth!  
Brian is getting sweeter and smarter and cooler every day.  This past Friday night was a planned "Mother/Son" event hosted by his school.  Nearly all the boys and their Moms were going to a baseball game about an hour away.  Now, I really don't care for baseball (or any sports!) but I didn't tell Brian that!  I bought the tickets and told him how excited I was.  The day before the big game, we realized that rain was in the forecast.  That was it for Brian.  He decided that it didn't sound like much fun at all to sit in the rain.  He also wasn't keen on the long drive - or the late night.  As a reminder, he is six.  Not seventy six.  Moving on...

We decided that we should come up with a "Plan B."  Brian's "Plan B" was for the two of us to go to the Movie Tavern and then to Arnold's Family Fun Center! So that is just what we did.  We had dinner and warm brownies at the Movie Tavern and saw "Home" (which we don't recommend)...
...and then we went to Arnold's!  We had a blast.  We played Skee Ball and Air Hockey.  Brian won the jackpot on a video game...
... and we played Black Light Miniature Golf!  He definitely gets his golf skills from his Daddy.
We laughed and laughed that night.  On the way out of Arnold's Brian said, "Hey Mom!  Get me dancing on video!"  He really plays a mean air guitar.
The night wasn't what we had planned, but we definitely got the "Mother/Son" part just right.
Brian is such a great brother to Hope.  As she gets bigger and more active, they get closer and closer.  She loves to watch for his bus on school days.  Now that the weather is getting warmer, we are outside a lot.  The other day, she wandered around on the driveway and her head would pop up every time she heard something that sounded like a bus.  She just couldn't wait for him to come home!
Then finally... the big moment!  She RAN up the driveway to greet him.
It's hard to believe that Hope is 16 months.  Not just because 16 months flew by too fast... but because of all she does for her age!!  This little one is so confident and daring.  It's equal parts awesome and terrifying!  Inside - with hundreds of options in the playroom - she chooses to climb.  She'll climb on the coffee table - on the couch.  She'll climb on any chair she can find and pull out and she always has a cute, mischievous grin when she does it.
It's pretty difficult to get anything accomplished when she's awake, so when I do - even something simple - I feel like Wonder Woman!!  But typically I have a solution when she's awake and I need to do things.  It looks a little bit like this...
...and a lot like this:  
I am a Mom of four.  Two on Earth and two in Heaven.

Some days, Heaven doesn't seem that far away.
Some days... it's as close as our own backyard.

Tuesday, April 14, 2015

This is What Two Years Looks Like...

Dear Gavin,

It's been two years.  I can't believe it.  Two years since I held you, saw your smile, heard your laugh, cheered you on and kissed your soft skin.  The time has flown - but it hasn't.  Some days seem to last forever - yet time has so rudely marched on.  To say I miss you wouldn't be enough.  I ache for you.

But today, my birthday, was not so hard.  Your Dad and I feel the days leading up to the day you died - both when it was happening and now - are harder.  It was brutal when it was happening.  So much so that the moment you passed away felt like a relief.  Your body was changing and you were no longer the Gavin we knew you to be.  You were set free - and it was a beautiful birthday gift to know that you were no longer tied down by tubes or machines or pain.  

I woke up this morning feeling so loved.  As I reached my hand under my pillow, I pulled out the most adorable card.  Brian made this on his own without any help, he told me.  It was the best gift.  There's nothing better than a homemade card!

So, as we try to do every day, we celebrated life today.  Yours, mine, our entire little family.  Daddy took the day off and we kept Brian out of school so we could all go to the Please Touch Museum!!  Brian and Hope had SO much fun. I think Hope felt like she had won the lottery when I let her out of the stroller and didn't stop her from touching everything!!

The first experience we had was, fittingly, with water.  They had a little river set up for kids to sail boats and splash and it was so much fun.  

Hope had a great time in a miniature playground just for babies and toddlers!  I could tell she felt like such a big girl - holding her own with the other little kids in there with her.

Brian was the tour guide for the day and didn't steer us wrong.  He found this awesome elephant made out of old toys and collectibles...

He found a room filled with GIANT tinkertoys and we created a house together!

And he found a penny press!  You should see how big his pressed penny collection is now, Gavin!

We went on the carousel two times in a row.  I know you would have loved that.

Brian picked a seat so we could all sit together.

Hope loved the ride...

a LOT!  Ha!

We took some fun pictures...

And then we fell down the rabbit hole.

Brian discovered an entire town down there!  They had a hospital, a shoe store, a brick yard and a supermarket!  Brian and I quickly got to food shopping.  I was in aisle three looking for Pop Tarts while he made a bee line for the fresh vegetables.  Well, fresh plastic vegetables.  That's right, Brian.  Do as I say and not as I do.

Hope found us a new home with a white picket fence and became intensely attached to the stuffed dog that lived there.  That was a sad goodbye.
All throughout the day, we talked about you.  We remembered funny times and sad times, family memories and memories that only you and Brian shared.
So basically, what I'm trying to say, is that today was like any other day.  You are on our minds, in our hearts, in our house and in our conversations every day.  That will never change.

If anyone wonders what it looks like on the two year anniversary of the death of a 5 year old little boy who was our world... looks a lot like life.
I love you, Bugaboo.
Love, Mommy

Monday, April 13, 2015

The Night Before Goodbye...

I will remember how I felt on this day in 2013 forever.  It's ingrained in the part of my memory center that houses feelings of devastation and sadness and anger and pain.  I didn't know it was the night before goodbye until the next day, when Gavin was pronounced dead.  But my heart knew it would soon be time to let go of my first born son... and I could feel it shattering.

It was the strangest day.  There were very clinical (and quite upsetting) "Brain Death" examinations.  There were moments when we just laid in bed with Gavin and sobbed.  Then, there were moments when it felt right to plan ahead for funeral preparations - and so, very wrong to think of planning at all.  This was the third day of torture - watching our son's appearance slowly change and watching him gently die.

If you want to go back and read about that day, you can click here to read "Our Mystery Boy."

Tomorrow we will celebrate Gavin's life as a family.  We will smile and laugh. We will tell stories about him, like we always do, and remember all the reasons he changed us and taught us and made us proud and happy.  We will remember all of his doctors who cared for him - and for us as a family - so lovingly during his life and especially during his final days.  We will be together - all of us. Gavin and Brian and Darcy and Hope and Mommy and Daddy.

Lately, Hope has been reaching her arm up into the air and looking up with her eyes when you ask her "Where is Gavin?" or "What does Gavin say?"  The other day, I had Brian and Hope out on the swingset when she did it again.

"Brian!  Did you see that?  I think Hope sees Gavin.  I just asked her 'Where's Gavin?' and she reached her hand up into the sky!" I said.

Brian replied, "Yeah, I know she sees him.  He touches her hand when she reaches it up!  He does that to me, too!"
I believe him.  

I will never forget how I felt on this day two years ago.  

The night before goodbye.

I'm lifting my heart to the sky tonight just for you, Gavin.

Thursday, April 9, 2015

Writing for Good...

Dear You,

Tomorrow, April 10th, will be the two year anniversary of the day my life would change forever.  It started off as a normal day - except for some seasonal allergy symptoms from Gavin and Brian.  But by lunchtime, I would be standing in the corner of an emergency room in shock... watching a team of doctors and nurses trying to beat and breathe life into our first born son.  By nightfall, Ed and I would be holding Gavin's hand in the intensive care unit willing him to live. Praying for a miracle. He would be gone four days later - declared brain dead on my 43rd birthday.  

When making funeral arrangements, Ed and I agreed that we should encourage people to donate, in lieu of flowers, to three charities that meant a lot to Gavin and our family.  The outpouring of donations was overwhelming.  You really came through and your money was used to help so many people.  The Child Life Department at the hospital where Gavin was cared for his entire life - and in his death - received truckloads of supplies and a lot of money.   The Gift of Life Family House received so much money in Gavin's name that they dedicated a room to him, placed a paver in the memorial garden by a trickling, blue water fountain and hung a plaque in the entryway.  The money given to the Family House ensures that organ transplant patients and their families have a place to stay (and food to eat!) during their transplant and while they're recovering.  And CaringBridge, the non profit website where I got my start writing when Gavin was an infant, received donations.  Those donations help keep the site running and also keep it free so patients and their loved ones can create pages like I did for Gavin.

A few months later, I created "Gavin's Trust Project" to raise money for the Chester County Intermediate Unit. Again, you came through. Boy, did you come through.  You showered this underfunded organization - the same one that supported Gavin with teachers and therapists and a fantastic classroom - with so much money. They were able to open several brand new special needs classrooms and furnish them! They were also able to purchase much needed equipment and therapy aids for teachers and therapists to use in the classroom - and for children to use at home!

Last year, to mark the first anniversary of his death, I had a HUGE fundraiser to raise money for an all abilities playground at the hospital.  I had never planned a fundraiser before - and truly believe I had a lot of angelic help to pull it off. Over 400 people filled a hall and people from all over the world participated over the internet - helping me to raise over $65,000 for the future playground.  (I'll have an update from the hospital on the playground status soon!)

I wrote all of this out to remind you how generous you have been.  Every single time I've had a fundraiser, you've donated your hard earned money in memory of Gavin.  You have trusted me.  I hope you will continue to trust me now...

This year, in my continued effort to make positive things come out of our family's tragedy and honor Gavin in a meaningful way, I'm writing for good.

Over the past several years - even before Gavin passed away - I have been approached to write or advertise for money.  Every single time, I've said no.  It just didn't feel right. But a few months ago, when I was thinking about what I would do to mark the two year anniversary, a "job offer" fell out of the sky.  Well actually, it came through my email - but you get the idea.  My good friends at the Just Between Friends Sale asked me to be a paid Blogging Ambassador.  Basically: shop, write about my shopping, talk about the sale and what?!?  They were going to pay me?!?  This is something I've been doing twice a year without getting paid - just because I love this sale!  I accepted the job and had so much fun - and didn't do anything that I wouldn't have done without pay!  It makes me so happy that my Just Between Friends sale "family" gave me my first paid 'gig.'  Gavin meant a lot to them.

The experience got me thinking and then... it hit me.  What if I started to say yes - only choosing assignments or sponsored posts that made sense to our family and were not super intrusive on my page!  What if I got paid (the pay is pretty nice!) and put half of every paycheck in my "charity pool!"  I could deliver a check to one charity at a time once the money reaches a couple hundred bucks. And what if I put the other half in my "fun family money" pool - allowing me to contribute in a meaningful way and use the money to create some fun memories as a family!

I've given this a LOT of thought.  I have no idea how it will go, what it will look like, how often I'll get offers or how I will do... but I do know that the vibe of my journal won't change very much. This is still our story, which is why I will be very choosy.  I'm grateful I have the luxury to pick and choose job offers.  Some pieces might appear on this blog - and others may be on other sites or in print.

My first offer already came in and it was from Parents Magazine! They asked me to be a "Parents Insider" which means I'll have the inside scoop on what the editors are working on... have the opportunity to pitch story ideas for magazines... maybe get paid for a sponsored post or even have a giveaway here and there if it's something I think you'd like!  

The other day I pitched my first essay idea and it was picked for an upcoming spot on for Mother's Day.  It's a post about how to survive Mother's Day when you've lost a child - something I know a lot about, unfortunately.

I have always loved to write, but it wasn't until I started writing every day when Gavin was a baby that it became essential.  Writing is something I have to do - for me.  It was by chance that I started that CaringBridge page when he was two months old and it quickly became my daily therapy. And here I am, still writing, eight years later.  I have Gavin's entire life documented. Actually - I have ALL of my children's lives documented!  What a gift.

Writing keeps me focused, disciplined and positive.  I know it will also make me feel like I'm still working for Gavin.  His entire life, I was dedicated to his care.  Every single day there was something to work on - insurance issues, therapy plans, making food or making flash cards, researching alternative therapies or genetic syndromes. When he died - half of my identity seemed to die with him.  I almost considered not writing anymore.  I'm so grateful I didn't.

I'm very excited about the possibilities ahead of me. I feel like I have a unique point of view that I'm happy to share with a wider audience. Maybe I can inspire a few people to become organ donors through a post.  Or maybe I can encourage a Mom who has had multiple miscarriages... or is living the "special needs life." And if they want to pay me to write - and that means I can help support my charities and my family - even better.

I think Gavin would be pleased with my new venture.  I can honor him by using my 'voice' to help others in his memory.  Basically, I'm putting myself to work so I can continue to support our charities. I hope that you will come along for the ride and support me by reading my pieces when I let you know they're published!

Thank you, as always. The amount of support and love I feel from all of you makes me even more determined to continue chasing rainbows.


I love you, Gavin.

I don't want you to feel I'm discouraging any of you from donating money in honor of Gavin! Feel free! If you would like to donate anything, whether it's to mark the two year anniversary or anytime at all, the information will always be on this blog.  All donations can be mailed directly to the organizations - just be sure to mark it that it's in memory of Gavin Leong.  Any amount is greatly appreciated!  Here are our charities below:

Chester County Intermediate Unit
c/o Deb Hiller
455 Boot Road
Downingtown, PA  19335

Gift of Life Family House
c/o Sara Cohen
401 Callowhill Street
Philadelphia, PA  19123

Nemours Fund for Children's Health
Shands House
"Abilities Playground" c/o Joy Zernhelt
1600 Rockland Road
Wilmington, DE  19803

Wednesday, April 8, 2015

When You Can't Stop the Train...

I have been consciously choosing joy every day, as I said I would.  As the two year anniversary of Gavin's death creeps up (in 5 days, 3 hours, 57 minutes and 30 seconds. I'm clearly counting) I am consciously choosing joy.  I am.

But sometimes... like now... and yesterday... and the day before... and two seconds ago... my body forgets.  It's like a visceral reaction that my mind can't control.  My body remembers - and it panics.  My heart races.  Nausea rises.  My throat lumps. 

But I still choose joy, dammit.  

So I have been consciously choosing busywork, too.  I organized our spice cabinet this morning.  This afternoon I took apart our pantry (which, if you know us, was no small feat.  It is stocked like a fall out shelter) and wiped down every jar, every shelf, every thing. 

Yesterday I ran races in the yard with Brian. We went on a treasure hunt.  I gave him a little bowl of water to hold the "flowers" he was picking for me.

We laughed as he snorkeled in our master bath and I smiled as I realized that baths will never be the same.

I've been busy following Hope up, down and all around.  I've followed her up the "stairway to Heaven" 
(she always stops to look at her brother's picture in the foyer)...
...and chased her off the couch, the kitchen chairs, the coffee table, the bookcase and - new to her list of things she's conquered - the dishwasher.  None of this is good for my anxiety, but whatever.  Hope is better than my "busywork!"  Neither my body nor my mind can be still when she's awake!
Staying busy has been helpful.  Choosing joy has been essential.  But my body still remembers and reacts.  It's like a train that I can't stop.

Last week, Ed and I took the kids out of town for an overnight in a hotel.  It was good to get out of the house - out of town - out of our heads.

It was an INSTANT success.  Brian LOVES hotels.  There are elevator buttons to push, snacks, great food, better desserts, movies to rent on the TV - the fun never ends.  And it was much easier with Hope now that she's walking!  She walked and walked and walked - in the lobby and down the hallway to our room.  As soon as we opened the door to our room, the two of them raced around to check it out.  The wall of windows was a huge draw.
And the buffet was a highlight at every meal!  I'm pretty sure Hope thought she had won the lottery with so many new foods and exciting choices.  She even had her very first cookie!  It really was her first - I'm not sure why she hasn't had a cookie before this, but it's true!
Brian and I had a cookie, too.  And a cupcake.  And creme brulee.  And a brownie. get the idea. We have a "yes" policy when we stay at hotels. The answer is pretty much yes to anything.  It's pretty awesome.
We even stayed up late at watched a movie!  Night at the Museum - which we loved.
Our getaway didn't get me away from my feelings.  I didn't think it would.  My body still remembers and reacts.  The memories flood into my mind.  Choosing joy isn't always easy...

But choosing joy is always necessary.

Tomorrow I plan to fill you in on the special way I am going to mark the two year anniversary.  I have a little anxiety about that, too, as it involves all of you.  I hope you'll come back to read about it with an open heart. 

 Thank you, as always, for loving our little family. And thank you for helping me honor and remember Gavin.

Sunday, April 5, 2015

Easter 2015...

Easter 2015 is in the record books! 
(In case you're wondering - THIS is the record book)

Our Easter preparation began with the official egg dyeing.  Brian and I had a blast.  We did the traditional dipping in color...
...painted with a brush...
...and even sponge painted some.  Brian's first (and favorite) egg was this cross he painted.
And I made a special blue egg for Gavin's basket.
We had a lot of laughs...
...and we made a big mess.  This is what Brian's hands looked like after 27 washes.  I can't say my fingertips looked any better!!  Ha!
Before bed we set up the baskets.  We decided to attach balloons to each basket so the Easter Bunny would know whose was whose!  Brian picked the blue basket to use this year - it's the basket that belonged to Gavin.  We chose a butterfly balloon to put in the green basket - Brian's actual basket - so the Easter bunny wouldn't be confused.  Got all that?
The Easter Bunny figured it all out - and WENT all out!  Our Easter Bunny is heavier on the toys than candy.
Brian's basket included a snorkel set (who doesn't get a snorkel set to use in the bathtub from the Easter Bunny?!?  Ha!), glitter glue, and a tabletop air hockey table!
Hope's basket included a plush Winnie the Pooh in a bunny costume, a mini-pinwheel, a box set of Sesame Street board books and a fun National Geographic picture book.
And Gavin's basket had an electric fluttering butterfly, his bunny ears, another min-pinwheel and extra candy to share with his brother. 
Brian requested the night before that we all "sleep in" - so we didn't venture downstairs until close to 7:30!  Here is the big reveal when Brian came rushing in to the kitchen...

And here's Hope checking out her new toys!
Brian jumped right into the egg hunt since he spied the first egg when he walked into the kitchen.  
Most of the eggs had a penny or a nickel, a dime or a quarter.
  Well - except for the two Darth Vader eggs!  Check out what he found in those!
The low budget, no frills Easter Egg hunt was a big success according to my very sweet and grateful little boy!  (Whew!)
Once he knew all the eggs were collected, it was time to inspect his basket.
And I instantly attained "rock star Mom" status when I said YES to candy before breakfast!!
After our real breakfast, we played a raucous game of air hockey!
Hope loved checking out her toys and books...
Before her morning nap, I asked her "Hope, what does the Easter Bunny say?"  I just had to know.  Here was her response...
Soon it was time to head to church.  We're never quite sure what to expect when we are in church.  Generally we hang in the back in case Hope starts to get loud.  Today I went prepared with a steady supply of snacks and she was quite an angel!  Both of them were - and they looked so adorable, if I do say so myself!
Before we got out of our fancy clothes, we took some photos in our back yard.  It was too hard for me to choose just a few, so I'm posting them all!
Brian got tired of the sun shining in his eyes so he told me he would still smile - but he had to close his eyes.  He kept his word!
This was the best we got from our trusty tripod.  Three out of four looking isn't so bad!  Ed and I both wore blue as a small way of including Gavin in our day.  I actually wore the dress that I wore to his funeral.  It felt like Easter was a good day to repurpose it. 
Brian requested that I take some photos of him with Hope on Gavin's memorial bench in the garden.  Nothing has bloomed yet - but these two brought lots of color... and lots of life... to the garden today.
It was a gorgeous day, so we spent much of it in the yard playing!
Hope took her maiden voyage down the BIG slide.  Daddy and Brian were cheering her on.
She looks terrified, but she LOVED it!
And she loved the swings - laughing and laughing as her Daddy pushed her.
We walked, 
played with chalk, did "experiments" with a bucket of water (sometimes I don't ask - it's more fun to just follow his lead!) and had some snacks.
Eventually, it was time to head inside to get ready for bed.  As I walked into the garage, I turned around to see this on the driveway.  A sentence that will never get old... even when I do.
Happy Easter!

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