Thursday, June 13, 2013

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!


  1. I read your blog every day, but don't post. This post was so heart felt, it brought me to tears. The consideration it shows toward the medical staffis overwhelming.You truly gave them a gift. I have always been amazed at your ability to parent both of your children. You have done an outstanding job. I pray every day for Project Hope. I don't always understand God's ways or timing, but I am so thrilled that this new baby is on the way. I believe this child is such an incredibly special gift to a wonderful family!

  2. Wow- what an absolutely amazing speech. I was in tears the entire time reading it- it was so open, honest, caring and heart-felt. I am a relative newcomer to your blog but I absolutely love hearing about your family and I am right there with everyone else believing your Project Hope born! You have inspired me to find a way to say thank you to my children's pediatrician who gives them such great care. What a wonderful blog post today and thank you for doing/writing what you do! :)

  3. You are such an inspiration, Kate. From one angel mommy to another, thank you for always sharing your lives with us. I am already a donor and had planned (had Jay Jay passed in a hospital) to donate his organs as well. SuperHero Gavin made such a difference in this world, what more fitting way is there than saving lives, too? Sending lots of love to you and your whole family.

  4. Beautiful beautiful words. You are such a gifted writed, mother, wife.

  5. I am a recent follower also. Kate, the speech was beautiful as I sit here reading the speech. My husband and I are organ donors. I have never given it any thought what I would do if I was in the horribly place you were in. I know now, thanks to you, if anything unimaginable were to happen to my 2 girls I would donate their organs to feel the same healing you have written about.

    Thanks you for making me always feel grateful.

  6. I've always known about being an organ an adult. But the concept of child donors is new to me because of your blog. This morning I have dicussed the issue with my kids who are old enough to understand, and then registered all five of my children as donors in our state. Thanks for opening my eyes to a great need.

  7. Kate,
    I know you hear this many times over but you really are an amazing woman. You have an amazing family. And that Gavin. I can't even put into words what I feel about your special boy! Please continue to take care of yourself, your family and Project Hope and know that your special Gavin is smiling so big when he sees how well you all are carrying on.
    Love from a total stranger,

  8. Kate, this was lovely. It brought me to tears. This had to mean so very much to the medical staff at DuPont. I am a psychologist, and spent many years working in state hospitals. Not a fun place for people to have to spend time. When we would hear from patients after they left our care, it was wonderful, and we would all share the information and the memories and our favorite stories. Those calls or letters or cards did much to remind us why we went into our profession in the first place - to help others. I can only imagine the feelings of the staff members who were able to be there to hear you yesterday, and those they will tell about it - they must be walking on air, as well as grieving mightily for this incredibly special little boy and his family. Thank you, Kate and Ed and Brian - for sharing this with the rest of us.


  10. This was so touching, I could barely read it. Beautifully done and I'm sure your message will stay with all those who heard it forever. We became organ donors because of your family. How wonderful that you were brave enough to go back and deliver such a personal and powerful message to everyone who was with you through Gavin's journey. You did GOOD!!

  11. What a PERFECT speech Kate! Give yourself credit. It was just beutiful. I just can't stop crying. When my sister died last year, my mom NEEDED to thank everyone. All those angels that helped all of us... It is a beautiful thing!

  12. Dear Kate,

    I just wanted to let you know that after reading your post I registered as an organ donor in my state. I've always supported organ donation but you and Gavin gave me the push to finally register.

    I lost my infant son due a full-term placental abruption in November 2011. Somehow through the babyloss blog universe I found my way to your site. I am so sorry for all the heartbreak you have been through, and especially the recent loss of Gavin. He is such a beautiful and special boy. My son spent all 8 days of his life in the NICU... I very much relate to your gratitude and appreciation. These people are amazing! It's wonderful that you took the time and emotional effort to recognize them.

    I'm hoping for Project Hope with you.

  13. Dear Kate, That was a beautiful speech. You have such a beautiful heart and all of your children have been blessed to have you as their mommy. Praying for Project Hope and for you in your decision to rebuke fear and to just trust and believe and live in expectation of good things for this new baby.

  14. I cried harder reading this than I did the day that Gavin entered into the arms of Jesus. God bless you, Kate. This was beautiful.

  15. Oh, pass the tissues! That was beautiful Kate.

  16. I read your blog everyday. And everyday I can't believe how strong and amazing you are. And I can't help but think that God choose you to be Gavin's mother because He knew that you would be the best mom for him. God Bless!

  17. Thank you! Oh and I am an organ donor!

  18. Such a tribute to Gavin and your family that all those busy professionals turned up to hear you say thanks.

  19. What a beautiful, brave thing of you to do.

  20. I have to stop reading your blog on work breaks. It makes everything I am doing seem a little stupid. If I could post a picture back to you it would be of a small pile of crumpled tissue gathered on the side of my keyboard. I am so sorry for your empty arms

  21. I am curious how the doctors and other professionals reacted? I'm sure there wasn't a dry eye in the room.

  22. I am a stranger who loves you and your family and is stalking your blog waiting for the test results!! Praying

  23. Your speech was absolutely beautiful!

    Also, I just signed up to be an organ donor in my state and plan on talking about it with my husband tonight! (In Michigan, the family doesnt have to follow through with it if you are a registered donor, so I'm going to make sure that he will in case anything were to ever happen.)

  24. I can only imagine what Gavin and Darcy & your Dad were doing in Heaven during your speech....."That's MY MOMMY"......"That's MY Little GIRL KATE".....

    I have already signed up to be a donor the last time I renewed my state ID.
    I have Muscular Dystrophy *Limb Girdle type 2A ...I was just at the U of M MDA Clinic on Monday for my yearly visit. My favorite Dr John Day that was the very first Neurology DR that told me back in 1971 that I had Muscular Dystrophy is no longer there. This was my first visit to see the new DR. and He is from Greece. He was everything I hoped for and
    more!! They asked me if I would be interested in having a punch press biopsy done for further research of my Limb Girdle 2A ...I was scared Gavins Honor...I SAID YES!!!! I DID IT !! The Clinic was so thankful that I would let them use my biopsy for the special research project going on right here at the U of M in MINNESOTA. I also asked them what paper work I would need to file so that at my time of death that I could donate any muscle tissue for the benefit of finding a cure to my specific type of MD !! This new Greek DR that I just met said " OH WE WOULD BE SO HONORED TO HAVE YOU DO THAT FOR THE RESEARCH TO HELP FIND A CURE ONE DAY.

    You see I come from a family of 4 girls. Both of my parents were carriers of the gene but they id not have MD. So I got one gene from both of my parents and I got the two bad genes and as a result I myself have the Limb Girdle 2A disease. My oldest sister is only a carrier but my two younger sisters also both have the disease. We were told only 1 out of the 4 of us should have gotten it and well we change all that history stats and 3 of the 4 were diagnosed with MD. So all of our children are carriers now also. The 3 of us girls with the MD each have 3 wonderful and healthy children that God Blessed Us with!! My oldest sister that does not have it only had 2 children but I guess God had other plans for her because she is the only one not in a wheelchair and then her husband early in life had a car accident and became paralyzed and also got MS later in life and she was able to take care of him only because she was not in a wheelchair herself because she is only a carrier.

    Funny how each of our journey's in Life take us down so many different paths that we never thought about when we were little girls. We all ran and played and did everything like 4 normal little girls. It was mot until we were in our late teenage years when we first started noticing
    that something was wrong with our muscles. It broke our parents hearts
    but we each went on and got married and now have beautiful healthy children of our own. only if our children would marry another spouse that has the gene that it would ever put them into a wheelchair. But by then I pray that with my donation of my organs and muscle tissue i can
    one day save some other little girl or boy from going through what we had to do.

    So the next time you are out and about will you do a favor for me.....
    Stop and hold the door open for the person in that wheelchair trying to get into a bldg. Help them push at electric door opener when it's raining and they are getting wet waiting to get into that store. And when you do this for me you will also be honoring GAVIN :)

    Kate I enjoy reading your blog and I want you to know that Gavin has made me be braver in living out my life also with muscular dystrophy
    and he will always be MY HERO !

    Love from my tiny town in Minnesota
    Janice Kay / Granny B I now have a beautiful little grandson that is 2-1/2 don't forget to celebrate those 1/2 Birthdays because every day is so very precious.

  25. We did the same thing. After losing my grandfather my aunt, grandma and step dad when back up to the ICU where he spent five out of his six last days and thanked each and every one of his nurses. Some of them even showed up at his memorial service! I agree the nurses, doctors, specialists, etc get enough thanks especially after the loss of a loved one! And most of our family is already registered as organ donors! The way I see it is they can't possibly do much good in the ground.

  26. Amazing-- what you did for the medical staff at DuPont...your words leave me breathless. I am an organ donor and will now see to it that my child is one as well. I am so HOPEFUL for Project Hope, I stalk the blog too :)

  27. I was an ICU nurse for 8 years and I know how much it means to be thanked by a grateful family. What you did for the staff at DuPont is amazing. Your story is so inspiring. I have been a registered organ donor for some time. Thank you for reminding everyone about this beautiful gift of life. Wishing you all hope, joy and peace, Alisa Kelley

  28. I registered just now as an official organ donor in my state. Your words brought me to tears today (as your stories do most days...your words touch me so often!)

  29. What you did for the staff at DuPont was beautiful. As a nurse I know how even the words of "thank you" can mean the world, knowing you made some difference in someone's life. You are a great inspiration and a beautiful person.

  30. I will be an organ donor, if something happened, my kids would be as well. I can't imagine it any other way! Thank you for sharing your speech for the hospital staff. I can't fathom how much it touched them to hear the impact they have!

  31. I am sitting here on my son's bed at AI Dupont hospital, reading your post with tears in my eyes. I walked down the halls today and stumbled upon the child life center with my other younger son. He was happy to see the fish. I just stood in awe of the room. and thinking about Gavin. I wondered if I was looking at any of the staff that took care of him. I wondered if they knew miss sarah.

    we will all definitely be organ donors, should it come to that one day. my cousin got a kidney transplant, I know how important it is. Gavin is going to save many many many more lives, because you are getting this message out to so many people, you are helping people change their minds about organ donation. and then some of those people will go on and save lives in Gavin's name.

    Blessings to you Kate. sweet prayers and blessings for you and your precious family.

    As I sleep my first overnite in dupont, I will think and pray for you and gavin and brian and ed and hope and darcy!

  32. I can't imagine there was a dry eye hearing or reading this.


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