Back to the Emergency Room...

Today was a special day all around.

This morning, Brian and I went to my ultrasound.  He waited patiently (and unaware) in the waiting room while I got my glimpse of Hope.  Sleeping again this week, but growing so well!  Take a look!

In less than four days I will officially be in my second trimester.  So grateful.

After the appointment, Brian and I stopped for a special treat - cookies and milk at none other than "Hope's Cookies!"

On the way home, we stopped at a HUGE playground that was truly impossible to drive by and Brian had such a great time.

But the biggest event of the day was our trip back to the emergency room at Paoli Hospital.  I was very, very nervous and only hoped that our gratefulness to them shined through.  I have been so worried about all of them since April 10th.  Not a day has gone by that they haven't been on my mind.  Truly.

The meeting was, as I suspected, sacred.  I was grateful for their reception... their kindness... and their compassion.  I learned today that they called to the PICU at DuPont once a shift to check on Gavin the entire time he was there.  Ed and I will never forget our ER team and how they saved Gavin's life that day... so that we could spend the next four days with him before he died.

Below is my "speech" to the men and women who stood in that room with us and breathed life into Gavin on April 10th.

~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you so much for meeting with us today.  We know how busy you are so the fact that you took the time to be here means a lot to us.  It really does.

I'm sure there is a frustration in treating someone in the ER and then, sometimes, never hearing the outcome.  So we are here today to tell you what happened after that helicopter flew away from this hospital with our son on April 10th.

The short version?  He died.  When he got to DuPont, he had two more cardiac arrests that evening.  He suffered profound brain damage that led to his brain death four days later on my birthday, April 14th.

The long version?  Well… first, I have a confession.  I stopped at the ER for reasons even I can't explain.  I'm overprotective, but bringing him to the ER for the symptoms he had was over the top even for me.  When I got him out of the car, I could hold him upright on my hip.  But, in a move that I'm embarrassed to admit… I changed his position to carry him in like a baby.  "If it looks more serious, perhaps they'll whisk us back and we'll get home faster," I thought.  I now know that every single decision I made that day was guided.  I kept both boys home from school because they had allergies.  I changed their acupuncture appointment to earlier which put us directly across the street from the pediatrician and this ER.  

Standing, pacing and needing to be close to Gavin in those terrible moments was every parent's nightmare.  But you did everything you could to talk to me - and to Ed when he arrived.  The chaplain seemed to know that Ed needed her comfort - and I needed my space.  I wanted to be right in there to hear and see everything that was going on medically.  I wanted cold, hard facts - and you provided that.

He made it to DuPont and we were able to spend four beautiful days loving on our first born son.  We laid with him during the day and slept with him at night.  Two days before he died, we brought his little four year old brother in for a special good bye which was beautifully done thanks to DuPont's Child Life department.  I was able to bathe him… we were able to hold him… and we were surrounded by doctors, nurses, and other staff from the hospital that know us and love him and we couldn't have been more supported through this process.  Doctors that have cared for him over the past five and a half years were able to come in to see him and say goodbye… one of his doctors even flew home early from a trip so she could see him one last time!  He was - and is - so loved.

On the morning of his death, my 43rd birthday, I woke up next to him with an overwhelming feeling.  I just knew I was pregnant.  After years of infertility, multiple miscarriages and a stillbirth… we had given up and given all of our baby things away.  It was hard to believe my intuition, but I just knew I was inexplicably pregnant.  And I felt from that day that this was a daughter… and that we would name her Hope.  Well… Hope Margaret will be making her debut, hopefully in this hospital where her two brothers were born, at Christmas time.

Ed and I made the easy decision to donate his organs.  Our child was non-verbal, but he managed to help people… to heal them even… as if that was his life's mission… and never needed to speak a word to do it.  It was only appropriate that we honor him by allowing him to continue that mission in death.  His kidneys were able to save the life of a 40 year old man… and his organ donation journey spread like wildfire on social media, prompting hundreds of people to email me telling me that they had become organ donors because of Gavin… telling me they have had conversations with their families about the unthinkable:  what would we do if we were faced with the choice of donating our own child's organs?  I am so, very proud of that… and we are overwhelmingly proud of Gavin who died a hero.  We waited overnight with his body until the surgeons were ready for the organ harvest.  It was a privilege for us to wait, knowing that someone on the other end would be receiving Gavin's organs and have a chance at life.  On the foot of his bed was a sign we had made that said:  "Superhero Gavin… Off to Save Lives"  We followed the surgeons as they wheeled him down the entire length of the PICU and couldn't fight back tears as the doctors, nurses, social workers, and other staff lined the hall and clapped.  They clapped for our son.  For his gift.

I tell you all of this because those four beautiful and heart-wrenching days wouldn't have been possible if it hadn't been for you.  With all we have gone through, I have to tell you… each of you have been on my mind.  A lot.  I have worried about you since that day.  I won't presume to even guess how you handle life and death moments with patients - especially children.  But I worried that in some way you carried a burden… maybe wondered if you did enough… or worried that you weren't fast enough… or were concerned that in some way we might have blamed you.  That is the main reason why this meeting was so important to me.  We need you to know how GRATEFUL we are to each and every one of you.  You kept him alive so he could get to his second home… DuPont.  You kept him alive so we could spend those days with him… allow his brother to say goodbye to him… allow us to process what was happening before we came home without him for the first time.  You kept him alive.

Gavin was always a very mysterious child.  He remains undiagnosed, despite getting every genetic test available… and his autopsy was inconclusive.  We will likely never know why this happened, but we believe it was set in motion before we stepped foot in this hospital and despite your best efforts, this was part of a plan that we may not understand.  That in itself confirms MY suspicions.  This mysterious little angel slipped onto Earth with a very serious mission… to change people.  Then he slipped back to Heaven just as mysteriously.  He really changed people - and he continues to even now.  I hope in some small way he will change you as medical professionals.  If you ever doubt… remember Gavin.  Remember our short time here and how deeply you impacted us - we wouldn't be back here if that weren't true.  Not every family will come back… you might not hear thanks… you may hear mostly complaints.  So, if you ever doubt… remember my words.  The outcome may not be what you train for, what you work hard for… but you are still helping people. You are privileged to stand with people through what may turn out to be the most profound journey of their lives... 

…and we thank you for standing with us.

Kate, Ed and Brian Leong

18 June, 2013

How is it Possible?...

Let me put it this way... yesterday and today were jam packed with Mommy and me activities and I didn't take a single photo.  As a matter of fact, I didn't even BRING my camera with me anywhere.

Those that know me well are thinking right now:  "Uh oh.  Something's wrong"

Not taking photos - especially when there are photo worthy moments (like, uh, all the time) is a sure way to expose my state of mind.  When this happens it's bad, folks.  Real bad.

I'm exaggerating... slightly.  But you can consider the above a warning that this post will be pretty depressing, pretty whiny and devoid of any photos to take your mind off of the darkness.  Apologies in advance.

Yesterday and today have been bad days for my Rheumatoid Arthritis and Fibromyalgia.  While I would have loved to theoretically spend the day in bed... that's something that just isn't possible.  Literally.  Spending the day in bed sounds awesome and you'd think it would be just what I'd need.  But for someone with arthritis, spending the day in bed - or spending too much time even "still" is worse.  It causes more stiffening which defeats the entire purpose.  

And another reason why I can't just "check out?"  Brian.

Yesterday we shipped Daddy out of town to enjoy his Father's Day gift:  guilt free alone time.  (Seriously - isn't that the BEST Father's Day or Mother's Day gift?  A day off, guilt free??)  I didn't say anything about my physical issues because, knowing Ed, he would have stayed home and given up his Father's Day.  That wasn't happening.  So I planned an afternoon with my Mom at her place.

But there was still the morning.  It takes me quite a while to get moving on days like this.  I endured a long morning of "Mommy, I'm lonely.  Mommy, I'm bored.  Mommy, I want you to get down on the floor and play with me." and on and on...

We made it to my Mom's retirement village and he had a great afternoon... and so did I.  My Mom's place has an indoor (heated!) pool so Brian and I went swimming for a while.  Fortunately, being in the water is good for your joints!  Right?  Unfortunately, continuously catching a flying four year old off the edge is fun at the time, but causes a painful physical hangover the entire next day.  Lesson learned.

Regardless, the pool was fun and Brian impresses me more and more with his attempts to swim.  He starts two solid weeks of daily swim lessons June 24th so the timing of his newest passion is perfect.  After swimming, we all got dressed and had dinner in the fancy dining room!  Brian was such a good boy... and we both LOVED the food.  My Mom is living the high life, let me tell you!  This place has everything.

When we got home, Ed was just pulling in from his "day off" and we showered him with kisses and cards and then Brian was off to bed.  By that time I was spent in every way.  I could barely think, let alone write a blog.  I feel awful that I didn't have the energy to write a Father's Day post.  Especially since I happen to think I chose the best possible Father for my children.  But Ed couldn't have cared less... he's so not about that.  (I still feel guilty.)

I suspected that I might wake up feeling worse... and I was right.  And as I sat in my pajamas at the kitchen island trying and trying to get myself in gear... and listening again to the chorus of "I'm lonely.  I don't have anyone to play with.  I don't want you to have your "achies" today, Mama." I finally had to leave the room and cry.  And cry.

These are the things that went through my mind:

Why hasn't my RA gone into remission??  My last couple pregnancies it did - and quickly.  Why not now?  It feels like it's getting worse!!

How is it possible that Gavin is dead?!?

These are the days I really miss having help at the house each day.  It was such a giant help for me physically.  And it ensured that the boys were both entertained... among many other things, obviously.

What am I going to do about Brian?  On one hand, I don't want to be enslaved to his need for constant entertainment.  He needs to adjust to our unfortunate new normal - for now, he's an only child.  There isn't a built in playmate around here - even in me.  And with the baby on the way, I need him to really understand that I won't always be available to him when he asks.

But on the other hand - this child has suffered a profound and devastating loss.  He misses Gavin terribly and truly IS lonely.  Which is why I feel so torn and so guilty when I don't spend time with him every waking moment.  It is such an intense guilt trip.

I've received lots and lots of great suggestions of ways to keep him busy this summer... and I do plan to take advantage of a lot of them.  He'll take swimming lessons at the YMCA (Mommy gets to sit on the side and take pictures)... a mini gymnastics camp for two weeks in July at the YMCA... we're going to go to the beach a few times... play dates with neighbors and friends... among many other things.

How is it possible that Gavin is dead?!?

I calmed myself down and came back to Brian and decided that I needed to take him somewhere.  Preferably somewhere that Mommy could sit her decrepit body down and watch the fun.  And, by God, I hit the GOLDMINE this morning.

Bounce U.

I don't know how I didn't know this place existed in my backyard.  On their website it showed they had an "Open Bounce" session from 10-12 for $8.95.  It was 9:30.  I got us dressed and we headed over right away.  At first, we were the only ones there!  It was a big room with four HUGE bounce structures.  Slides, rock walls, basketball, etc.  Within fifteen minutes, two women showed up with their four boys.  The boys (aged from 4 to around 10) introduced themselves (unprompted!) to Brian and took him into their group.  For the next two hours I watched him run, laugh, play, sweat, high five his new friends and jump.  I'm sure the two other Moms might have wondered why I kept wiping tears away, but I was so relieved... so happy... and so exhausted.

When we got home, he gobbled a huge lunch and then... ready for this?... he laid on the couch for an hour.  Bounce U has a summer passport for $50.00 - unlimited open bounce sessions.  Yes, please.

Brian and I had two hours to recover before his friends, Seamus and Molly, were coming by to play in the backyard.  They played on the slip n slide, in the baby pool and water table... it was a total Gavin afternoon.  How I wish he was there with us.  I just sat, mostly, next to my good friend Patti and watched in a daze as the kids splashed and laughed and ran around.

I don't know what I'll do if my RA gets worse.  I'm not sure how I'll function.  I am usually able to handle this so much better, but now it has me completely overwhelmed.  I am tired... Gavin died... I'm pregnant... I'm buried, so to speak, under a mountain of those to-do's that are still not ta-done.  I know everyone says "It can wait!  Don't worry about it!" but they don't understand.  Seeing that mountain of funeral items, memorial gifts, unwritten thank you notes, un-returned dishes, perfectly intact photo boards from the funeral... it's all very difficult to see every single day.  I want to get it all done - and put in a proper place - because maybe, just maybe, it will help me move forward just a little bit.  Just a little bit.  But there never seems to be the time... or the energy... or the un-distracted attention that I need for these tasks.  

I am not looking for anything with this post.  I'm not fishing for sympathy or advice or praise or criticism.  If anything, I ask for your positivity and perhaps a prayer or two.  I'm struggling.

How is it possible?  Really.  How is it possible...

In other news, tomorrow is a big day.  Beyond an ultrasound in the morning where I'll get another glimpse of Hope... Ed and I are headed back to the Emergency Room to meet with the entire team that was in the room working on Gavin on April 10th.  I requested this meeting and I'll explain more about it after the fact.  It will be very different than our meeting with the folks at Gavin's hospital, DuPont.  There will be no cameras, no hospital P.R., no video of our talk.  I am viewing this meeting as a very sacred event so if you could send a prayer my way that this goes the way I envision it, it would mean a lot to me.

If you got this far... thank you.

Brian's Half Birthday!...

Today we celebrated Brian!

Tomorrow, our little boy turns 4 1/2.  That's halfway to FIVE!!

(We celebrated today so we didn't collide with Father's Day!)  We have been celebrating half birthdays since Gavin was halfway to one.  Any chance we get to celebrate our children, we'll take it!

Brian had a great day.  He started off the morning opening all of his presents!  Naturally, most everything was Star Wars... except for a fun stop sign to use in the driveway.  A total impulse buy, but such a HUGE hit!!

We took some cute photos outside of the half birthday boy and the Dad of the year...

...and suddenly, a butterfly flew right in front of him and sent him chasing after it.  Yes, a butterfly.  It flew right in front of him.  It was almost like it knew that it was Brian's half birthday.  Hmmm...

At Brian's request, we spent the afternoon at Arnold's Family Fun Center - one of his (and Gavin's!) favorite places.  He hit the bounce houses, as expected... but he surprised us when he wanted to try something new!  Black Light Duckpin Bowling!

He and Ed played Air Hockey...

...and a video game.  Star Wars, of course.

We came home and I set up the Slip n Slide from last year.  This was such a huge hit with Gavin last year - and since it is a two lane slide, I could place Gavin on one side to play with the water while Brian jumped and slid down the other side.  It was definitely a wistful moment setting it up.  That is, until Brian started entertaining me with his prat falls and giggles!

The half birthday boy requested brownies over cake this year.  So I half made them.  Basically, I bought them already made.

Granny joined us for dinner and fun!

We had a great day celebrating our little monkey who is growing up way too fast.

We love you, Brian!!

The Gift of Life...

Gavin's legacy continues to spread.

This afternoon, Ed, Brian and I drove into Philadelphia to the Gift of Life Family House.  

We met two women that, until today, were just friendly voices on the phone.  Sara Cohen works at the Family House as the Development Coordinator.  She has continuously kept me up to date on the donations that are rolling in in honor of Gavin.  Lara Moretti is a licensed social worker and the supervisor of the Family Support Services.  Early on she made sure I had all the literature I needed - reading material for us and registration pamphlets for Gavin's funeral.  And, she acted as MY social worker one day on the phone when I needed someone to talk to.  I was so happy to meet these lovely women. 

The reason we were there today?  Well, Ed's very generous former co-workers and friends from Accenture pledged a ridiculous amount of money to the Family House so we could dedicate one of their beautiful guest rooms in Gavin's name.  We had three different rooms from which to choose.  I don't know if you believe in signs - but we do.  Ed and I completely agreed that Gavin chose his own room today - and made it very clear to us.  Honestly, even if you don't "believe" in signs - you have to admit that when things line up and just make sense, there's a comfort in that.

We chose room 407.  The plaque will say 

"In Honor of Gavin Leong"

"Accenture Friends & Alumni Memorial Fund"

The even numbered rooms face the city, a beautiful view.

But as soon as we heard what room 407's view was - that was it.  We knew this was Gavin's room.  The view is of the blue bridge in the distance.

 At night it's illuminated.  Gavin would have loved that.

And the view below?  The memorial garden which has a gorgeous blue fountain...

...and another trickling fountain in a garden of Hydrangeas.

A child's garden with adorable adirondack chairs surrounded by butterfly bushes...

...and the most beautiful butterfly stamped into the concrete.

Could the signs have been any clearer?  Lights... music... butterflies.

And then I turned from the window in their beautiful guest room and saw the blue print on the wall.  I had noticed the art in the other rooms - equally beautiful, but this was the only one with blue!

It just so happens - like icing on this already perfect cake - that their "Serenity Room" is on that floor and just around the corner from Gavin's room.  Our Buddha baby would have loved this zen-like room with a table top fountain and blue walls.

Yes, we believe in signs.

We are also able to choose a plaque to dedicate to Gavin on their Founder's Circle wall.  I'm working on something special for that.

Ed and I were really impressed with the Family House and have plans to volunteer there in some capacity down the road.  They provide an invaluable service to transplant families that otherwise would be sleeping in hospital waiting rooms or spending an exorbitant amount of money on hotels.  There has been a family there for an entire year while their loved one is waiting at a local hospital for donor organs!  (Please, please register to be a donor today!) They charge only $40 per family per night which includes so many amenities including food and snacks. a gym, playroom with toys and videos and games... you can even get your hair cut and styled there and so much more!

If you are still looking for a way to honor my birthday request - or simply want a unique way to honor Gavin - I have a great idea for you.  You can be local - or you can live thousands of miles away.  In my original "In Lieu of Flowers" request, I simply suggested making monetary donations to the Family House.  But today I found out they need so much more.  Paper Goods, Laundry Items, Kitchen Items, Gift Cards and Pantry Items.  If you are local, perhaps you could host a "Wish List Drive" - I may do this around Gavin's birthday at the end of September in my own neighborhood.  Then you could deliver it to the Family House and see Gavin's plaque and visit their beautiful memorial garden!  If you are not local, you could still participate.  Perhaps purchase items on Amazon for delivery - or a few gift cards to Wal-Mart, Target, gas cards, etc.  If you click HERE, you will see the items on the wish list and an address at the bottom if you'd like to ship a delivery.  Be sure you write that it's in memory of Gavin!

You can run with this and do something really unique as a way to remember this little boy of mine who, without ever saying one word, has spoken volumes to all of us.  Not about his death. Not about tragedy.  But how to live.

And how to give the gift of life.

Looks like the Gift of Life Family House has a brand new angel in the house.

Thank you to all of our friends and Ed's former colleagues at Accenture for this profoundly generous and important gift.  We feel honored that you would look to memorialize our sweet son in such a beautiful way.  And, beyond the money you pledged to do this, the experience is helping to heal our hearts.  You can't put a price on that.

Believing in Hope...

The morning of my birthday, waking up next to Gavin, I had this overwhelming feeling that I couldn't believe could possibly be true.  I just knew I was pregnant.  

I just knew it.

I've never had a strong feeling about gender with any of my pregnancies... but for some reason, that morning in Gavin's hospital room, I knew this baby was a girl.  And I knew her name would be Hope.

It had to be Hope.

Ed and I are so, very happy to announce that 

Hope Margaret Leong 

is our new daughter.

The genetic testing came back showing no major genetic issues.  As we well know, because of Gavin, anything can happen.  We have chosen to hold onto Hope... leave our worries behind... and embrace this beautiful gift from Heaven.

Because truly, this little girl was sent from Heaven.  And she will have two incredible brothers in Gavin and Brian.  I truly believe that Gavin already knows her.

Last night, I had my first real dream about Gavin.  (At least that I remembered)  It was so real that I woke up believing that it truly was that... real.  We interlaced our fingers and danced and he jumped up and down in excitement.  I felt him... I saw him clear as day.  It couldn't have happened at a more perfect time, this dream.  I needed to see him, to feel him again... and he came for me.

Thank you for believing Hope Margaret born this December!!!

(For those who are curious... HIS name would have been Dean Gavin Leong.  We were winners either way!)

Going Home...

Yesterday was a very emotional day.

Ed and I went back to the hospital that we called a second home for Gavin... the hospital where he lived many times... the hospital where he died... to say thank you.

I was literally shaking all day - all through my speech - all the way home - and all night.  I wasn't nervous about the people - they feel like family to us.  I wasn't nervous about talking - I didn't care if I messed up (and I did).  I suppose I was nervous about being there... about leaving again... about getting my message across in a way that would make them understand.

I just needed to make them understand how grateful we are.

It's hard to explain the experience.  They reserved a lecture hall for us and, at 4:30 on what I'm sure was a busy day for these medical professionals, they filed in like it was some kind of mandatory meeting.  For us.  They came for us.

Ed and I cried most of the way home - and last night I could barely think.  I had no idea what to write.  I still don't.  I went back and forth trying to decide if I should post my speech here.  This morning I've decided I will.  If anything, it will be preserved here in our blog/memory book.  It may not mean a lot to many of you - you won't know who any of these people are.  But hopefully the message will shine through.  If you get bored, please scroll down to the bottom - I have a few other important things I want to say.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Leong Family Thank You

June 12, 2013

My Dad taught me - "If you want something done, it's best to go straight to the top."  So I did just that a few weeks ago when I composed an email to Dr. Churchwell.  In the email, among many other things, I wrote:

The reason I'm writing is to make sure you knew something... and to ask a favor of you.  I need you to know how exceptionally well we were cared for during our son's last days.  From the nurses to the doctors - to child life to social work - to the respiratory staff to the clergy... we bonded with everyone.  We have always been well cared for at DuPont since Gavin was an infant... but those last four days will be etched in my mind forever.

The favor I asked of him was to reward all of you on our behalf.  I suggested brand new cars.  He said, "What the heck - I'm leaving soon - let's do it."  So… if everyone would look under your seats….

(If no one laughs, fake a fainting spell and that will get you out of going on with this speech!!)

I had to start with a joke because, truth is, I'm terrified.  The other truth is - he said no to the cars.  But I did write him that email… and thought I was asking for the impossible to meet with SOME of you.  To see so MANY of you is just overwhelming and we are so, very grateful today.

It's a little known fact that I dropped out of nursing school to become a flight attendant.  Actually, it's a little known fact that, because of my blog, there are very few "little known facts" about me anymore.  But I dropped out because I was getting too emotionally involved with every patient I encountered.  I thought it would wreck me.  Who would have predicted that I would give birth to a son with medical issues that would call on that nursing background?  Over the last five and a half years - as we spent more and more time in this hospital - I realized something pretty disappointing.  I was wrong.  It is clear to me that it's okay to be emotionally involved.  I know this has to be true because from our first stay here with Gavin - to our last - we have felt cared for like we were family.  We have felt that Gavin's doctors and nurses and administrative staff and support staff and everyone in the wheelchair clinic treated him and made decisions about his care like they would for their own child.  There is a very good reason why I said - when Gavin made it here by helicopter on April 10th - that I was so glad he made it home.  This hospital, to us, was like our second home… in all the best ways.  

We were sitting in a hospital room with Gavin when he was two months old.  He contracted RSV and was baffling the doctors at Bryn Mawr Hospital because he wasn't improving.  They came to us and said, "We need to transfer him to a bigger children's hospital."  They gave us the choice of CHOP or DuPont.  In probably my worst ever parenting decision - I looked at Ed and said, "Well it has to be DuPont.  You know I don't like driving in city."  I based my child's care on driving conditions.  As it turned out, it was the BEST worst decision I ever made.  Every doctor seemed hand picked as the perfect match for us.  Most of the doctors gave out their EMAILS which, until I found out everyone got them, made me feel SO SPECIAL!  And I used them - you can ask.  I bet any of the doctors who treated Gavin will tell you they've received an email or two or twenty from me - usually with photo attachments!  Gavin even experienced a huge milestone in this very hospital.  He sat up unassisted at 13 months on the altar of the hospital chapel.

Navigating life without him has been hard.  And parenting a little four year old who is grieving the loss of his big brother is even harder.  Brian has insisted on sleeping in Gavin's special needs zip up bed since he died.  On Gavin's closet door hangs a cheap, clear plastic heart… filled with glittery plastic gems… and it hangs by clear, stretchy rubber string.  The string is so clear, one could say it is almost invisible.  Every night we have a ritual.  Brian goes first - he walks up, cups the heart in his hands, closes his eyes and gently tugs on the string as he says "Goodnight Gavin!  I love you!  I'm sleeping in your bed tonight!  I miss you!"  Then it's Daddy's turn… and then mine.  This ritual means so much to all of us.  But as parents, we feel so happy that we can give this sweet four year old boy a tangible way of connecting to his brother.  I bring this up because something like this would never have entered my mind if it weren't for your Child Life department.  It was Jenn Jankowski that provided that entire concept to us.  I was pretty nervous about Brian coming in and explaining to him that his brother was going to die - but she had it under control with a book and crafts and a "way."  She created a foundation for us to build upon once we got home.  Brian believes in that "Invisible string" and somehow understands that a string he can't see still connects him with Gavin.  It's making us believers, too.  That cheap little plastic heart is now one of the most valuable possessions in our home.

And that got me thinking…

It's been a valuable invisible string that has connected us with all of you since we entered these doors 5 1/2 years ago - a string that stretched from Wilmington to Valley Forge.  Each of you have always had such a big impact on our family - and always will.  The string connected us…

With Dr. Raab who was always calm… never alarming… always honest… and empowered me as a Mom in those first months of Gavin's life.

With the nurses on 3E who were so kind and so patient and never batted an eye when I brought in just about every baby shower gift I received for Gavin into our small side of a room.

With Dr. Gripp, Gavin's hard working geneticist who to this day is looking for his diagnosis.  When I lived here for a couple months with Gavin, she would come in with her morning coffee just to visit with this scared and bored and lonely Mom.

With Dr. Gabos who's eyes always lit up when Gavin made progress that was unexpected.  His last amazing moment with Gavin was a little over two months before he died… Gavin walked across the exam room for him.

With Dr. Lehman who saw Gavin through several successful eye surgeries… who saved his eye after his corneal abrasion… who came in to meet us almost every day - even on the weekends - for a while to make sure his eye was okay… and who hopped an earlier flight home so she could see Gavin before he died.

With Dr. Costarino who was a recipient of an email every time Gavin was scheduled for surgery.  Because Gavin was always a risk under anesthesia, I went straight to the top to ask the Chief to choose his BEST anesthesiologist for him.  I always realized it was a game - I was a scared Mom who needed to feel some sort of control in a very scary situation.  He was a great guy that played along and always made me feel like he assigned his best for Gavin, acting like he was a VIP patient every time.  And he always made me feel comfortable… and comforted.  I was so grateful that it was him that was there for us to call Gavin's time of death.

With Dr. O'Reilly who always made us feel like Gavin was his favorite patient… that we were his favorite parents… that he hung on our every word… that listened to us so intently and made us feel our ideas and thoughts about Gavin's care were valuable.

With Dr. Bean who, with his black bag, made us feel the old fashioned care of our own pediatricians growing up… who calmed us after Gavin's first febrile seizure and cared for him so kindly during his last days.

And that very valuable invisible string will forever connect us with everyone in the PICU.

We hope you never know what it's like to stand in the corner of a room and helplessly watch as a team of people try to breathe life into your child - multiple times.  But if you do - we hope you have nurses like Ben or Patty to stand with you, calmly giving you a play by play, providing you with an invisible string to connect you with your child who seems so unreachable in that moment.

We hope you never know what it's like to sit in a room for four days just waiting for your first born son to die.  But if you do - we hope you have compassionate doctors like Dr. Meyer, Dr. Savage, Dr. Viteri, Dr. Penfil who were always approachable, always available, always honest.

We hope you never know what it's like to need so much from specialists - like hope and optimism, even when there is very little.  But if you do, we hope you encounter Dr. Falchek or Dr. Baffa who found a way to do just that for us.

We hope you never know what it's like to need a no pressure kind of quiet presence from a clergy member during the darkest days of your life - or the best hug in the history of hugs - but if you do, Scott Smith from pastoral care is your go to guy.

We hope you never know what it's like to need little things to hold onto while you await the unimaginable, but if you do… Jennifer Fenstermacher and Jenn Jankowski and Tricia Gonzalez are like your best "comfort concierges."

I hope you never know the desperate urge to mother your child who is dying - but if you do, I hope you encounter nurses like Jill and Holly and Emily and Abby and Dawn - and Walle from Healing Touch - who will not only allow you to mother your child, but will mother you just as much.

The night we arrived home without Gavin, we received a phone call from the transplant coordinators with a post surgery update.  At the end of the call, she wanted to let us know that Gavin's nurse, Dawn, was with him when they removed the ventilator and she lovingly cleaned him up and sang to him.

Hearing that… I was devastated.  We had been so grateful that we didn't have to remove support and watch Gavin die.  But I suppose we didn't think that, of course, that would happen at some point.  For me to hear that someone other than me, his Mother, was there for his final moments had me collapse into a dark and terrible meltdown.  I had to talk to someone.  I called the PICU hoping to talk to one of Gavin's doctors and, unfortunately, none of them were there.  The phone was passed to Dr. Stryjewski.  He hadn't been one of Gavin's doctors, but he knew his entire story very well.  What he did for me that night, I will never forget.  He patiently listened… he talked me through what I had already known but didn't want to accept - Gavin was already gone.  The ventilator was just a machine keeping his heart beating.  I had thought I had failed Gavin - who I have been beside every step of the way these past 5 1/2 years.  But hanging up the phone, I realized something.  If there was going to be a "stand in" for Gavin's Mommy in those last moments - Gavin's first nurse and his last, Dawn, was the perfect choice.  The fact that she sang to him - we have no words for that.

But the truth is… you have all been "stand in" parents for Gavin at one point in his lifetime.  We handed over our beautiful child and trusted you with his care… with his life… so many times.  And you've never betrayed us - even in his death.

For that - and for all the moments over the last 5 1/2 years - we thank you from the bottom of our broken hearts.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

After my speech, we got to visit with everyone and truly thank them one by one.  It was a profound experience and we were so grateful for the opportunity.  It was something we wanted to do for them - but I'm pretty confident that this is a huge step in our journey to healing.

Before the event, we had been asked if the hospital public relations department could interview us.  A lovely woman named Karen conducted the videotaped interview... first with me and then with both of us.  Ed snapped this photo of me sitting in their "studio" - it was pretty surreal.

Apparently, this was interview worthy because this doesn't happen very often - families wanting to come back to thank the hospital where their child received care... and in our case, eventually died.  I hope that this little entry encourages more families to give that some thought.  I am pretty sure that yesterday meant a lot to the doctors and nurses and other staff that were present.  And I know it helped us.  A lot.  Maybe today - or soon - you can express your own gratitude to your own medical professionals.  It WILL make a difference.  Don't wait until after death to thank someone for the first time.  Do it now.

I have one regret about yesterday.  

At the end of the interview, I was asked if I wanted to make an appeal - perhaps to solicit donations for Gavin's Trust Project.  Since I was at the hospital where I also asked for donations - for their Child Life Department - I thought that would seem a bit odd to ask for donations for anything else.  So I said I didn't have anything to say.  But I did.

If I could go back - I would make a very heartfelt appeal.  And it would be...

Please - become an organ donor.  If you have ideas about organ donation that worry you - the idea of being cut open, thoughts that you wouldn't be able to have an open casket at your funeral (not true), worries that it will upset your loved ones - learn more about it.  I bet if you do, your thoughts and feelings will change.  And your loved ones might be changed, too.  And for all of you parents - it seems unfathomable to make the choice to donate your child's organs.  Wrong on every level, right?  I sincerely hope that you are NEVER in the position that we were put in - facing our child's death in the face - but if you are, maybe preparing yourself for a decision about organ donation ahead of time will be helpful.

I can not emphasize enough how donating Gavin's organs helped us.  Helped US!!  The fact that it helped another human being live is even more incredible.  Our son died a hero, he really did.  And that was just one of the many gifts that was born out of this awful tragedy.

You don't have to wait to renew your license.  And you don't have to wait until a tragedy occurs.  Register to become a donor today by clicking HERE and finding your state. For my international readers (there are a lot of you!) - google "how to register to become an organ donor" in your area.  Be sure to tell those closest to you that these are your wishes.  And have a talk with your spouse about what you would do if something happened to your children.  It's always better to have conversations like this when there's nothing to worry about - not when you're mind is clouded with grief and anger and worry and sorrow.  Do it today.  Do it for Gavin.  And if you do decide to become a donor, please tell ME!!  It would make me so happy if Gavin's story inspired someone to become a potential donor hero, too.  Because that's what you would be.  Do you know that ONE donor can save up to EIGHT lives??  Wouldn't you want that as your lasting legacy?  I know I would (if there are any parts of me that anyone would want! Ha!)

And one last thing.  If you are interested in learning more about the other gift that will be born from this tragedy - our Project Hope - stalk the blog!  I will post another entry as soon as I get the call from the geneticist.  It should be soon!

I Have Made A Decision...

This morning I had another glimpse of hope.  Project Hope, that is...

He or she looks great.  At this point in my pregnancy, 11 weeks and 3 days, the baby's hands will soon open and close into fists, tiny tooth buds are beginning to appear under the gums, and some of the bones are beginning to harden.  If you look at the ultrasound, the white you see in the head area is actually his or her jaw bone.  And you can easily see the spine running down the back.  On some ultrasounds, the baby can be seen stretching and kicking.  Today, Project Hope was Project Snoozer.  Check out our little one...

Eleven days from now I will be in my second trimester.  Hard to believe.

I have made a big decision regarding this pregnancy.

I will stop worrying and continue to only believe this baby born.

This is really big for me... I hope you understand.  I have had loss after loss after loss, so no one would blame me for being scared out of my mind.  It doesn't help that I vividly remember the moment I felt safe enough to stop worrying during Darcy's pregnancy.  A month later, she was dead.

It is not a good feeling to constantly worry that the life inside of you is no longer living.  And I feel horrible guilt as a Mother for constantly thinking that my baby is dead.  The worry I felt was intensified with this pregnancy - as unplanned as it was - because of Gavin's recent death.  No one would blame me for being a complete freak-a-zoid.

But... no longer.

This child deserves to be celebrated by a positive Mommy.  I need to fully embrace this absolute gift from Heaven and just believe that everything will turn out the way it was meant to.  This baby already has an identity - is already a Leong - and already has a name lined up for when we hear the big news about the gender.  I will not expect this baby to die... anymore.  It's just not fair to him or her and it's really not fair to me, either.

I can find other things to become a freak-a-zoid about.

All that being said, we have decided to hold off for a while until we tell Brian.  If you ever see him, please don't mention the pregnancy.  I am feeling very protective of him and would hate to see him disappointed in any way.  More than that, December will seem like a lifetime away to him.  I'll hold off as long as I can... but that may not be too much longer.  Brian has already noticed that my chest has gone from zero to a hundred and keeps asking why.  I'm running out of answers... and fast.

The two of us decided to blow off some steam today.  Well, actually, I watched as Brian blew off some of his steam.  

We played outside and paid a visit to the tree that is apparently growing up to Heaven to bring Gavin home.

And then we took a trip to a brand new "Sky Zone" indoor trampoline park this afternoon.  After sitting on the sidelines and watching the "big kids" jump and do flips into a pool of foam blocks... Brian decided to jump right in and take a turn.  I was so proud of him for his bravery!!

He had a lot of fun, as you can see...

And I was happy to see him enjoying himself.