Sunday, June 30, 2013

Ashes to Ashes...

The journey we have travelled since Gavin's sudden death could be described in so many ways.  While you'd think it would be easy to describe in one or two words - words like awful and painful - it's so much more than that.  Yes, it's true that our journey has been painful... and awful... but it's also been unique and beautiful and heart wrenching and filled with surprises and covered in hope.  We have been able to see beauty in our most painful moments, for which I am so grateful.

Yesterday was no exception.  Brian and I drove to the funeral home with Gavin's urn and we finally had it filled with his ashes.  Cremation was a very personal decision, but one we felt comfortable with.  Brian is not aware of the cremation or the ashes and we are following his lead with that.  We have been very honest with him all along and, when the time is right, we will gently explain to him (in a developmentally appropriate way) what cremation means and why we chose that for Gavin (and Darcy).  
The way I see it, we are all SO much more than our physical bodies.  They are merely suitcases carrying our most precious cargo - our spirit and our soul.  We really have no use for our bodies once we die - so why not let others benefit from what our bodies have to offer by donating organs if we can?  I've said this before...and I'll say it forever...donating Gavin's organs brought us great comfort.  Once that was over, cremation was the next step.  In a way, the cremation was a symbolic gesture to show how Gavins' physical body, which often failed him, was only a small part of what made him special.  Probably the smallest part.  Gavin had this light that shone from the inside out - and he let everyone see it.  His spirit was strong and his soul was kind and loving.  

Everyone makes their own end of life decisions based on what makes them the most comfortable - and I certainly don't think there is a right way or a wrong way or an only way.  But I will tell you something pretty selfish.  I couldn't bear as Gavin's Mommy to leave his body in a cemetery.  I wanted his remains home with us.

The truth is, Gavin is everywhere...and I know that.  We see signs of him every day and we don't need to be in the presence of his ashes for that.  But for some reason, it just feels better to have his ashes with us.
I hope, when the time is right, that we are given the wisdom and the grace to explain to Brian - and someday to Hope - why we made this choice and what it means.  But more importantly, I hope they walk away knowing that even though a body might die...that person's soul and spirit lives on forever and will never leave them.  Ever.

I believe that.  
And I'm holding onto that every single day.

Friday, June 28, 2013

He Can't Be Put Away...

Yesterday was a rough day.  I have been on a roll lately getting things organized around the house...something that makes me very happy.  But the one thing that threw me yesterday was deciding to put some of Gavin's clothes "away."  His closet and dresser are still filled with the clothes he was wearing for the Spring season.  But in the spare room I had all the clothes he had grown out of or was going to be wearing this Summer.  Every day they stared at me.  Mocked me, even.  Typically, I would either give away or sell the outgrown items in a consignment sale I participate in twice a year.  But I won't be doing that this time.  At least not yet.

With Brian safely in the playroom watching a "Veggie Tales" movie, I kneeled on the guest room floor - soon to be Hope's nursery - and I slowly and painstakingly placed each item in a plastic bin.  With each article of clothing, I hoped for a memory to flash through my mind of a happy time.  Instead, I got flashes of the last days.

The second he stopped breathing in the emergency room.
The crowd of people around him and on top of him trying to bring him back.
The jerking of his tiny body when he started seizing.
Saying goodbye...only to soon have hope once again.
Watching his eyes travel in different directions that night and just knowing...he was gone.
Watching his skinny body swell with fluid.
Knowing we would soon say goodbye.

In the hospital on those long days and nights, I actually flashed forward to the day I would start "putting Gavin away" at home.  It seemed inconceivable.  Wrong.  A betrayal.  I left a tear on every piece of adorable clothing as I put it in the bin.

But the truth is, Gavin can't be put away.  He is in every corner of our home.  His spirit invaded our bodies from day one.  His room is now Brian's room - whether it's temporary or permanent is up to Brian.  The truth is, I would have put these clothes away or sold them or given them away if Gavin were still alive.  But typically I look forward to buying new things to replace the old - and there will be no new clothes for Gavin.

I kept it all to myself when Ed got home from work.  We had dinner, did our nightly bedtime ritual with Brian and then went our own ways.  A little while later, I got an email from Ed about a 4th of July sale at Pottery Barn Kids that started that day.  I'm not much of a shopper so I typically ignore these sale emails because I don't want to buy anything.  But for some reason, I clicked onto the website.  And that's when I saw this...
I knew it was Hope's.  And it really felt like Gavin had a part in choosing it.  Everything about it was perfect.  The trees are just like the big trees in Gavin's bedroom.  The big owl and the little owl - like Brian and Hope - with a butterfly flying over them.  I showed Ed and he wholeheartedly agreed.  We had to get it.  (The best part is - Ed had a $200 Pottery Barn Kids gift card that he won so we got this so, so cheap!)  

Then this evening, the three of us went to the Carter's store.  What I wanted to do was exchange a brand new pair of sandals that Gavin never had the chance to wear and choose a new pair for Brian to replace them.  As I was choosing the new sandals with Brian, Ed wandered away.

I walked through the store and froze in my tracks when I saw where he was.  The newborn baby girl section.  As I got closer, he turned to me with a sweet terry sleeper in his hands and a tear in his eye.  
It is really just amazing - improbable - that anyone could find beautiful and hopeful moments after the loss of a child.  But we have been so blessed with Hope... and hope... in more ways than one. 

But you know, it's more than this baby.  We refuse to give up hope.  We refuse to give up joy.  We refuse to give up love... and laughter... and happiness.  Is that easy?  Not always.  But doing anything else would be a disservice to Gavin, who found joy and laughter and happiness in his every day.  Through each painful moment, we remember and honor him by holding onto hope.

Gavin will always be in this home.  He can't be put away.

Wednesday, June 26, 2013

The Journey Of A Lifetime Continues...

Today I received the final edit of Gavin's funeral service.  We are so, so grateful to former co-workers and friends of Ed's from Accenture for arranging the professional videography for both the visitations and the entire funeral mass.  Videotaping a funeral might seem a bit... odd.  But I have documented every moment of Gavin's life - both the good and the bad.  This felt so normal to me.  I also didn't want us to forget the details that grief can sometimes bury - the people that came, the touching moments, the eulogies, the music and the flowers.  But more than that, I wanted yet another keepsake for Brian.  This video will be visible proof that his brother touched so many lives.  And he'll see himself there, lest he forget his big brother's funeral when he's grown.

The video is 49 minutes and 45 seconds, so I don't expect many of you to watch the entire thing.  But if you do, there are a few things I wanted to point out so you understand the meaning.  Everything in this service was specifically chosen by us.  I'm attaching the program below as it looked in the design phase (all the photos ended up being in color).  In the program you'll see that the eulogies were given by me... Miss Sara... and my siblings, Tom and Bean, who are Gavin's Godparents.  My brother Mike and my oldest niece, Emily, did the readings.  Ed wrote and delivered the "Prayers of the Faithful."  If you read the personal note from us on page 11, you'll see that we included all of Gavin's therapists and aides that helped him over his entire life.  From his very first therapist, Patti... to his very last teacher, Miss Megan... we wanted them all to have a special part in the service.  Our home helpers brought up the gifts... and each therapist and teacher of Gavin's carried up a single flower to place in front of his photos.  It was so important to me to include them in a big way.  Over the years, I've heard a lot of "I don't know how you do it!" or "You're so amazing" or "Gavin has come so far because of you!"  I never felt that was totally accurate.  Ed and I both feel we stood on a LOT of shoulders since the day Gavin was born - and we owe all of these women so much for helping us help Gavin.  

The other special things worth mentioning are the donated items.  This program was put together and printed out by Meghan Krevolin from Linked Forever Photography - and she accepted donations from many of my readers who generously wanted to contribute to make it so special.  We were so moved when we heard that.  Also, the gorgeous flowers you will see in the video were generously donated by Gene McGonagle from Ambler Flower Shop.  He went above and beyond - even clipping branches from our cherry blossom tree in the front yard (which was planted in memory of Darcy) to include her in the tribute to her brother.  Unbelievable.  The mass was said by Father James Kelly from Epiphany of Our Lord in Plymouth Meeting, PA.  I was baptized in this church...we were married by Father Kelly in this church...and Father Kelly baptized both of our boys in this church.  We were so grateful that he agreed to say the mass and he did such a wonderful job with his homily.

(If you click on this first photo, you can click through all the pages and you'll see them larger)

Finally, we want to thank Cinemacake Filmmakers for putting this video together so beautifully.  They do such incredible work (as you'll see on their website).  In a few days they will get me our video from the viewing the night before the funeral.  In that video you'll see all of the special touches - the photo boards, mementos and more.

Thank you for watching...for honoring Gavin's memory from your own home tonight...and for loving our little family.  Because of all of you, we feel surrounded every day by love.  Thank you.

Tuesday, June 25, 2013

Kinda Wordless...

I thought I'd try to make this a "Wordless" post and share all the amazing (I mean TOTALLY amazing) photos from Brian's successful (and I mean TOTAL turnaround from yesterday!) swim lesson.  He had the time of his life.  See - I'm already failing at being wordless.  I'm too full of words.  If you get through all the photos, I have a few more words for you at the bottom that you might like a lot.

The morning started off a little rocky and Brian was crying at the side of the pool.  I decided to pretend I didn't see him (which felt horrible) every time he looked my way.  I just kept a perma-grin, excited look on my face.  Next time I looked his way, he was doing this...
...and this...
...and raising his hand to go "first"...
...and I've saved the best video for last.  Be sure to watch until the adorable end...
Wow - so much for wordless.

Anyway!  I decided to do something special every Monday on my Chasing Rainbows Facebook page. Yes, I know that today is Tuesday.  Let's move on.  I can make it right next week.  (Hopefully on Monday.)  Here's my great idea.  Every day I get many, many requests from people hoping to share their causes, facebook pages, blogs, voting links... what have you.  I had to make the difficult decision to say no to everyone - because I couldn't say yes to everyone!  And there was no way I could or would pick and choose.  To me, everyone is important.  The only things I share are those things or people that I have a personal connection with.  Truly, if I said yes to everyone - my page would be completely filled, every day, with other people's links and pages, etc.  

So...from now on, every Monday, I will post this on my Facebook Page:

"Share yourself!"

Then, you are welcome to post your blog, your page, your cause, your website - whatever you want as a COMMENT under that post...and that post only, so everyone will see it.  Then everyone can read through and discover new friends, inspiration, people who need help...etc.  It seems like it's finally something I can do that will allow people the exposure they are seeking without changing my page.  My page started out as a small page dedicated to my blog - which is dedicated to my family and our story.  I really like it that way.  But I really like this idea, too!  So, I'm off to create that post tonight... and I hope to see you Share Yourself!!

(Wow.  I am really bad at this wordless thing.)

Oh, and one more thing.  Gavin's school is on a summer break at the moment, which means that the first plans for the funds in "Gavin's Trust Project" are not completed yet.  Last time I communicated with them, they were still working on figuring out items they would need for new students starting in the Fall.  They are not rushing into purchases, which I appreciate!  I will be SURE to give a great update with lots of details when decisions are made!  I can't tell you how grateful they are for this incredible fund that just keeps growing and growing.  I am still open for donations - anytime - and you can find the link always on the right side of this blog.  Gavin will be part of so many lives of kids like him...hopefully for many years to come.

A true superhero.

Monday, June 24, 2013

We Can't Stop Living...

Today I was going to write about the things we did this weekend that brought me joy... and brought me down.

I was going to write about our trip to the movies with Brian to see Monster's University and how he was dancing in the aisle when the credits were rolling (seriously, he was!)...

...and how bittersweet it was that it was our first family movie without Gavin.

I was going to write about how Miss Sara generously gifted us with a night of babysitting so I could have dinner and see another movie with Ed.  And how we both cried over Gavin during our meal.

I was going to write about how I got Brian out of the house on Sunday to go to "Bounce U" to give Ed a break and when I got home I found him working hard planting Gavin's funeral flowers.  The only two remaining that we're hoping to save.  He planted them right outside the playroom window so we can see them every day in our favorite room.

I decided not to write yesterday because I was too busy hugging Ed.  And feeling sorry for myself.  And letting Ed hug me.  And so on, and so forth.

And I was realllllly tempted to write at length about Brian's disastrous first swim lesson this morning.  How he started off looking confident and excited like this:
But spent the entire lesson sobbing uncontrollably and refused to participate.  (By bedtime tonight, as I was excitedly telling Daddy about how brave Brian was and how I heard the other boy in his class tell his mommy that HE wanted an Angry Bird bathing suit like "that kid" - suddenly, Brian was looking forward to going back in the morning.)
Truth is - I've been having a major pity party and I've been feeling very emotional because I'm missing Gavin.  And my post would have been a pretty major whine-fest.  No one needs that.

Actually - I didn't need that.  If I gave into it, it would have festered and I would have received a lot of sympathetic comments from readers who are so kind and just want to make this better.  And truth is, that would have fed the monster that just wants to be sad.

Over the past couple months, we've had so many people say things to us like...

"If this happened to me, I couldn't go on."

"I don't think I'd survive the loss of a child."

"How is it even possible to get through this, let alone get past it?"

"I would rather die."

But you know what's interesting?  None of those people have ever lost a child.  I know others, unfortunately, who have lost children.  None of them told me, "I wanted to stop living."

We can't stop living.

It's true that the WORST possible thing that could happen to a family happened to us - we lost a child.  A sweet, innocent five and a half year old boy who had already endured so much.  Who had SO much potential.  Who was really the healthiest person in our house, which makes his death just that much more difficult to understand.

But if we stopped living because of this event, what purpose would that serve?

Lots of things can happen to us over the course of our lives.  Heck, lots of things have happened to me!  And it may seem that one... or two... or many things will "bring you down" or "take you out."

Don't believe it.

I'm sure you've heard someone say - "When you get to Heaven, you'll find out the reasons...the answers...behind your suffering here on Earth."

I don't believe that.

I don't think that one should walk around in life miserable and resentful of things that "happened to them" and wait their entire life until they're dead to understand why.  That doesn't make any sense to me.  And the only purpose it serves is to continue victimizing and torturing yourself.

Maybe instead you can look your life circumstances right in the eye:  death of a loved one, abuse, divorce, loss of a job, loss of a dream, addiction, infertility, betrayal, miscarriage.  Look it straight in the eye and realize that within that life circumstance lies the answer.  You don't have to wait until your dead.  It's right there in front of you.

It's right there.

Repurpose your pain, your suffering, your hurt into something that will work for you.  If you take control and decide to learn and grow and help others BECAUSE of your'll find that you start feeling less and less pain yourself.

Yes, things happen TO you in life.
And it sucks.
But things happen FOR you as well.  

And sometimes, even though it's hard to see, those things are one in the same.

Friday, June 21, 2013

Getting There and Getting Nowhere...

I'm calling a "win" for this week.  I tried to step up my game in the Mom department by coming up with some fun activities to do with my little man.  We explored a few new playgrounds... we went out for lunch (at one of those places with a built-in indoor playground that I NEVER would have gone to when Gavin was alive... and now I know why.  Yuck!)... we had fun in the yard... and yesterday we tried another indoor bounce park called "Bounce Town."  (They even served a snack halfway through!)  
Brian had a lot of fun at Bounce Town, but there was one bummer.  There was a group of young kids there - but they were in their own groups.  They never sought to include him, as much as he tried to entice them with his charm and his "COME OVER HERE!" screams.  On the way home he announced that he liked "Bounce U" better (where we were last week) because there was a group of boys that completely included him like he was one of them.  I totally over-think this and really shouldn't relate this at all to Gavin.  If Gavin were alive, we wouldn't be doing many activities like this - and if we did, Gavin wouldn't have been able to participate much at all.  We'd be in the same boat with Brian looking for someone to play with. 
 My over-thinking can really do a number on my emotions if I let it.
I'm also super proud of something else...

I RETURNED DISHES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  WOOT WOOT!!!!

I also wrote a few more thank you notes and I made a good dent in the dining room sifting through the funeral items and gifts. And in an impossible and emotional task, I chose ten photos (about) from each year of Gavin's life to give to the videographer.  Choosing such a small amount of photos was pure torture for me, let me tell you.  And going through the photos was both painful and wonderful.  Like remembering this one, when I was so pregnant with Brian and life was still completely centered around Gavin.
The videographer that taped the funeral (which I'll be getting soon and placing in a post for those who'd like to see it) is also making a "Life Story" type of video about Gavin's life.  She had so many incredible ideas to make it a very powerful video... but it involved me asking people to be in it and coming up with a theme and, basically... it would have required me to think.  In a move of which I am both SHOCKED and proud of - I finally said, "I can't."  I don't often say that.  I'm a yes girl...sometimes to a fault.  I promise too much and then stress about delivering.  But this time I threw in the towel (as much as I would love a video like she is envisioning) and said "I just can't..."  And I'm okay with that.  It's actually a relief.  It's one less thing off my list of 99 things and it just has to be okay.

This afternoon, Brian and I met my friend Drew and his son, AJ, at a nearby playground.  The boys had fun and, when it came time to go, Brian was not happy.  He didn't want to go home.  The entire car ride home he reminded me that he didn't want to leave... that he wanted to stay... that he didn't want to go home right now... and then it morphed into when he did get home he wanted to ride his bike... and swim... and so on and so on.  By the time we pulled into the garage I felt an epic meltdown coming on. Not Brian... mine.

I told Brian we needed to go inside to have a little break and then we could go back outside.  He started to complain a bit and then I turned around - a single tear streaming down my cheek.  He got very quiet and knew that this was serious.  I told him that Mommy needed to go inside and cool off and take a break... and he was just going to have to be a good friend and be nice to me.  That I was doing the best I could to make sure he was having fun but he can't expect me to say yes to everything.  Sometimes Mommy has to say no - and he has to just deal with that.  (I immediately felt horrible for this guilt trip)  He dropped his head and said, "Ok, Mama."  We went inside...I turned the TV on Disney Junior...and I went into the kitchen and quietly let it out.

(Edited to add:  Brian does hear no.  But truthfully, I rarely have to say it with the force I did today.  He's typically a go with the flow kind of kid and he's pretty easy to convince that "Plan B" is just as fun.  I don't say yes to everything - I swear.)

I needed a moment.  I'm trying very hard to be there for Brian, push through my arthritis pain, deal with pregnancy exhaustion, tackle my to-do's which truly only I can do, and grieve.  There are days where I feel I fail miserably - when the TV is on more than I'd like or I say yes to extra snacks because in that moment I just don't care.  Then there are days when I don't and I hold onto those to stay sane.  In the middle of my meltdown, the garage opened.  Ed was home early.  I tried to calm myself down to greet him, but it was futile.  I spilled it all - told him about my anxiety - cried and cried.

He said he'd clear his calendar for the rest of the afternoon and stay with Brian if I wanted to get out of here.  Normally, I'd say "No, that's ok!" because I'd feel bad putting him out - especially on a work day!!  But this time... I said yes.  I grabbed my keys, kissed them and went nowhere fast.  Out there alone I could breathe - and cry - and breathe - and spend some money in Target.  (If you're wondering what I bought at Target - maternity clothes!  I have a very serious and official looking baby bump and I want to stop freaking people out in public when I dramatically unbutton my pants and let out a big sigh of relief.)

I can't believe I said yes.  But I'm glad I did.  And I'm glad I have a husband who recognized that I needed a break.

This road is not easy... but I'm getting there.  It feels like I'm getting nowhere...but I know I'm getting somewhere.  And I know it will be ok when I arrive.

Thursday, June 20, 2013

Choosing An Urn For Your Child...

 There really aren't any "rule books" or "how to" books when it comes to grieving the devastating loss of a child.  Trust me, I looked.  And that's especially true when it comes to choosing an Urn.  It's, quite possibly, one of the worst jobs ever.

Early on, I asked for help from my readers.  On my Facebook page I put down some of the things we were looking for, hoping that if many people quickly googled - it would spare me having to "Urn Shop."  Boy, did everyone come through.  And then some.

But here is the thing - they all looked the same.  I kept getting the same suggestions over and over because the reality was - there wasn't a lot out there.  Some looked too feminine.  Others looked too "grown up."  None of them looked like something that would remind us of Gavin.

That was the most important quality this Urn had to have.  It HAD to be unique... like Gavin.  

Finally, I found what I was looking for.  A custom Urn.  The website I found was called "Sacred Journey Vessels."  But the new friend I found was the artist, Sharon Hornstein.  We were sure we wanted a metal urn (Can you even begin to imagine a breakable one - with children in the house?  Yeah.  Us either.) and Sharon works with bronze.  We knew we wanted some blue - but other colors as well so it coordinated with the colors in our home.  We knew we wanted the inscription from "On the Night You Were Born" which I often read to Gavin... which Miss Sara read at his funeral... and which is inscribed on his memorial prayer cards.  We also knew we wanted a butterfly - but a masculine looking one.  I gave Sharon the link to my blog and over the weeks that she was working on his urn, she got to know him... which meant a lot to me.  I *think* I had mentioned his love of water... but I kinda don't think so.  I never imagined it could be incorporated into work on an Urn.

To say that Sharon came through with everything we wanted and then some would be a huge understatement.  Take a look.  
 On the bottom is the swirling waves of the ocean that blends into the heavenly blue skies above.  And the glittery paint she added, to me, just adds to the magic that lies between - his life.

My photos really don't do the urn justice.  It's more beautiful in person.  The inscription you see on the top says:

...and the night wind whispered, "Life will never be the same."  Because there had never been anyone like you... ever in the world.
Even the top is gorgeous.
It's something no parent ever wants to think about... let alone do.  For us, leaving Gavin's body in a random cemetery we have no connection to was unfathomable.  And we also believe that Gavin was so much more than his body, which failed him in many ways.  We celebrate his spirit... his soul.  Those are the things that invoke the greatest memories for us.  Having his ashes home - next to his sister's tiny Urn on the mantle - seemed the most appropriate.

This custom Urn is one of a kind - like Gavin.  You'll never see another one like it - just like you'll never encounter another child like Gavin.  It was worth waiting for.  Gavin's ashes have been safe in the home of our Funeral Director all this time.  We will bring this Urn to him to fill and he'll give us a small amount for us to bring to the beach.  We have not wanted to go to the beach until we had Gavin with us.  There was no way we'd leave him behind for our first trip there.  I'll also have some ashes to fill a locket - just like the one I wear every day with Darcy's ashes.

I miss Gavin so much.  It's still just unreal that he's dead.  I can definitely say I never thought I'd be blogging about choosing an Urn for my five year old.

Thank you again to Sharon from Sacred Journey Vessels for helping me through this process.  You have found your calling... what you give to others through your art and soul is a true gift.

Tuesday, June 18, 2013

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

Monday, June 17, 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.

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