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.

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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.

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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!