Wednesday, April 17, 2013

In Lieu of Flowers - Part Two...

Today has been a very difficult day for me and for Ed.  This morning, after a fitful night, we met with the funeral director.  The only thing that made it easier is that we know this funeral director personally.  He handled the arrangements for my grandparents... my father... and our sweet daughter, Darcy.  It's comforting to know that someone we love is in charge of Gavin's body.

The funeral arrangements have been 100% confirmed.  Everything will take place at Epiphany of Our Lord Church in Plymouth Meeting, PA.  There will be two visitations - Monday night from 6-8pm and Tuesday morning from 9:30-11.  Then there will be a funeral mass and celebration of Gavin's incredible journey starting at 11am.  I have one small and seemingly silly request.  Please try not to wear any perfume or cologne or anything scented. I was always very protective of Gavin around strong scents as it often caused a skin flare up.  It's also dangerous for kids with respiratory issues.  I think if I smell things, my instinct will immediately go to protecting Gavin which will lead me to remember he's not there which might provoke a meltdown of epic proportions.  So... thanks for your understanding.

There are so many decisions to make and things to plan - it's truly overwhelming.  On one hand, staying busy is keeping me upright.  On the other hand, I'm stretched so thin and am afraid I'll forget important things.  I have been very grateful for the outpouring of support and generosity.  Late last night, while trying to read just some of the thousands upon thousands of messages and comments and emails, I happened to open one from Gene McGonagle - the owner of Ambler Flower Shop.  To honor my birthday request, he said, he wanted to pay it forward and donate all the flowers for the funeral.  He even drove to our house today to walk us through the planning.  We chose a lot of blue hydrangeas.  Gavin looked the most handsome in blue.  I also have offers from videographers that I need to comb through - I mentioned that I wanted to videotape everything and share it online one day.  One, because there are so many people that are invested in our son's story and it's only fitting that they be part of the final  celebration of his life.  But mainly my wish is to have something for Brian to see when he gets older.

I also started to see glimpses of some of the birthday projects people have been doing.  Teachers are having their entire class do projects in Gavin's name... others have written about small acts of kindness... everything I saw overwhelmed me with gratitude and lifted my spirits.  Gavin was such a special child with such a giving spirit - I know all of these acts are making him so proud right now.

Today I would like to tell you about the two other organizations that mean so much to us that we would love for you to consider donating to in honor of Gavin.  The first one is Gift of Life Family House.  But before I tell you about this organization - let me tell you some incredible news.

Gavin's kidneys - both of them - were transplanted into a 40 year old man last night.  Today, he's recovering nicely.  We are rejoicing with him and his family today.
If this man received his transplant in an area away from his home, the Gift of Life Family House would provide a "home away from home" for his family during and after his transplant.  It's similar to the Ronald McDonald house in that they charge a very small fee for a place to stay, meals, support and more.  Here's a short (and emotional!) video that can explain more about who they are and what they do... including offering home cooked meals by volunteers every night!  

From the Gift of Life website:

Gift of Life Family House serves as a "home away from home" for transplant patients and their families by providing temporary, affordable lodging, home-cooked meals and supportive services to those who travel to Philadelphia for transplant-related care.

Families staying at Gift of Life Family House are asked to pay a nominal guest fee of $40 per night per family in exchange for their room, meals, secure parking, van transportation to/from area hospitals, communal kitchen and living room areas. No family is turned away due to their inability to pay.

For online contributions:

By Mail: 
Gift of Life Family House 401 Callowhill Street Philadelphia, PA 19123

Thank you again for selecting Gift of Life Family House as the beneficiary for Gavin’s memorial contributions.

Now I have something to confess.  Last night, when we got the news that Gavin's liver turned out to be unusable for transplant - I was completely shattered.  Like, collapsed to the floor in sobs kind of shattered.  I cried for the three year old little boy... I cried for the hope that I had... I cried for Gavin.  I really had to dig deep to change my focus.  And then... I opened an email titled "From a Transplant Mom" and read this: 

When my son was 9 months old, he received 5 organs- stomach, spleen, liver, pancreas and small bowel. So many nights I have dreamt what must have happened on the "other side" of our story. What that family must feel or even how the process works. I think being the mom of chronically ill child, the details and procedures become very important. Or it could simply be the control freak in me that longed to know. Your words gave me peace knowing that your son was carried into Glory a HERO. I could hear the applause as I read. We don't know our donor and we may never know whose precious child saved ours, but I felt so connected to you and your words. We are very involved in our local organ bank and transplant world here in Dallas, but I have never heard a donor family describe with such grace- "it was our privilege to wait" -wow. It's easy to be on my side and receive the call, but to know you are comforted by your giving just spoke to me. 

Your son and your decision did save someone's life. Maybe his organs didn't get transplanted, but someone standing in that hallway clapping for your hero will remember him and maybe they will have the opportunity to save a life, someone reading your blog who never thought of organ donation will sign their card and send it in. And a mom like me, who has finally found normal after fighting so hard for my baby will remember your incredible son and his gift and hug a little tighter and give thanks more often. 

Your sweet Gavin changed the world.

 It would mean the world to us if you would make a contribution (even five dollars!) to the Gift of Life Family House in Gavin's honor.  Down the road, we will get a letter of the total donations and all the donors names (without your donation amount!).  We will always have a special place in our heart for the Gift of Life program.

Whether you give or not, I hope everyone is inspired by our journey through the organ donation process.  It is my greatest wish that part of Gavin's legacy is helping to change people's perception of organ donation... opening people's eyes to the great need... and motivating them to become an organ donor and express those wishes to their loved ones.  You, too, can become a superhero like Gavin Leong.

Become an organ donor now by following this link:

The final organization we are asking for donations in lieu of flowers is one that is important to Gavin and me.


When Gavin was two months old, he developed RSV and Botulism.  (To this day we don't know how he got Botulism)  In total between two hospitals, the two of us spent 10+ weeks side by side in a hospital room.  Two weeks in, a volunteer stopped by our room... lent me a laptop... and told me about CaringBridge.  It's a free site (run on donations) for people to create a personal page where they can update friends and family on their health issue.  I started writing one night - wrote every single day - came home with Gavin and kept writing - and, as you know, I never stopped.  CaringBridge is what accidentally made me a blogger. 

You can click here to get to my original CaringBridge site.  In those first months with Gavin - dealing with hearing aids and feeding tubes and night oxygen and nursing care and on and on... CaringBridge became my lifeline.  I would pour my heart out or I'd ask for advice or I'd celebrate one of Gavin's "smilestones" as I called them... and people would be there.  I barely left my house in those days, but because of CaringBridge - I never felt alone.  

Along the way, I became friendly with some of the staff and they always made me feel like Gavin was their special star on the site.  They even featured our story on their website...

We would be honored if you would consider donating to CaringBridge as a tribute to Gavin.  You can even go right to Gavin's CaringBridge page to make a "tribute donation" - and, again, no amount is too small.  Small acts of kindness often make the largest impact.  
Gavin, Mommy is so heartbroken.  This still doesn't seem real.  But I'm trying to do right by you, as always, and I will make sure that no one ever forgets you.

You have my word, Bugaboo.


  1. You are just an amazing woman. I can feel the love you have for your son in your words. Every time I read your words they bring me to tears but not tears of sadness, tears of love, hope and strength. I wish I could of met Gavin, he was a hero though out his whole life, even at the end of his life here he showed bravery and courage way beyond his years. My heart and prayers are with you and your family.

  2. I have thought of your dear family daily - sending prayers up to heaven multiple times a day. Your strength is incredible. My family has decided to make a monthly donation to the Child Life Department in honor of Gavin. After seeing this post I will also make a donation to both of these as well albeit small but my hope is to be able to make a larger donation in the future. God bless.

  3. Sending you, Ed, and Brian so much love and many prayers throughout all of this. Thank you for sharing Gavin with us even now. Gavin's story is spreading so far and reaching people all over the world.

  4. Kate, I can't imagine what this day was like, as I have not been able to imagine what any of the past days have been like, but I hope that thinking of the kidney donation (allow me to just say AWESOME) and the many acts of good that are happening around this country and the world help lift you. I was just thinking today about CaringBridge and how we first connected there and how many people already adored you there. I will be so glad to donate to it and Gift of Life Family House. [Hugs] [Many]

  5. Hugs and Peace with Love from enid Oklahoma!

  6. I am a volunteer at our local children's hospital in a hospitality room for the families of the patients. We offer free food, coffee, computers, and a listening ear. I had been really excited about my almost weekly shifts for the first 6 months, but this spring as the weather has been warming up and life is getting busier, I was getting more reluctant to give up my time and have been dragging my feet to sign up for more shifts. Your story and honest sharing about your experiences in the hospital with Gavin reminds me that my time is much more valuable spent helping a few weary family members a few hours at a time than catching up on the latest tv episode or doing an extra load of laundry. Thank you for the reminder to focus outwardly. I am amazed that you are able to have such clarity and caring for others during a time when you have every reason (and right) to focus only on your own sadness and loss. My thoughts are with you and your family, especially Brian. Thank you for sharing your journey and Gavin's story.

  7. My family has also used Caringbridge, and still do, to update friends and family. Our foster daughter has Sturge-Weber Syndrome and the website has been invaluable to us. I have made a donation for precious Gavin tonight. Bless you and your family.

  8. Think of Gavin and Darcy together in Heaven and what happiness they must be sharing together. They are where we ALL aspire to be. It's so happy for them, but oh so sad for those left behind. As a mother of three, my heart physically aches for you and I cannot get through one of your posts without crying. I sympathize with the longing, aching you must feel in wanting to hold him. I pray for you and for all parents out there who are enduring the same burdens as you. May you release sadness and find peace of some sort in the coming weeks. You and your family are an inspiration to so many. God Bless you all! -Amber in St. Louis

  9. Kate, I am so sorry for your loss. You and your family have been so courageous, Gavin most of all. Thank you for sharing your story so that others can celebrate the joy that is your little boy.

  10. I am in awe of you. When I envision myself in this same, unimaginable situation, I see me curled up in a ball or jacked on Ativan. You inspire me to be a better mother and person.

  11. Like so many others, I am in awe of you. Although I had never heard of or read your blog until another blogger shared your link within our group, I have checked for daily updates since learning that Gavin was ill last week. It takes a woman of great faith to do what you have done over the last week.

    Your babies were blessed to have been given to such a wonderful mommy like you. Of course, their daddy must be pretty special to have undergone this walk with you.

    May God carry you through the next few days, weeks, and years through your hardest days and help you to always rejoice in the victories of that small Super Hero named Gavin!

  12. I have always felt strongly about organ donation for myself. Since I was 16 my drivers license had the special organ donor sticker. I have talked with my husband about it numerous times to make sure that if something ever were to happen - he knows that is my wish. We have never talked about our sons. What would we do if something happened to them? My husband has never been as committed to organ donation as I, so I never pushed the conversation with him. I want you to know that after "meeting" your family and witnessing your courage - well, that conversation is going to happen now. I want to make sure he knows that it is important to me that our boys continue to live on in others.
    Dear Kate, Ed, Brian, and Miss Sara: you have been in my thoughts constantly for the past weeks...I hope that you all feel the love that is surrounding you as you usher your precious hero into Heaven's House. You are a testament to true courage and a walking talking (written) reminder of the selfless love we should all strive for. May your newest guardian angel bless you with comfort as you navigate this next chapter of your lives.

  13. I have only met Gavin for the last three weeks...and I miss him...
    I was so happy when you shared that he had shown he was communicating...and so sad when he was ready to leave us.
    I hope you can find some comfort and love and 'heroness' and sweet and love tears and friends...and smiles and Gavin
    I hope you can find them all, over and over again...
    So so heart breaks for you
    Kate, Ed and Brian you are Gavin's heroes.

  14. I made a donation to Caring Bridge in Gavin's honor. Rest in peace, sweet boy. Kate and Ed, I am so sorry for your loss. Your son's legacy will live forever.

  15. Made a donation today to the Gift of Life House in celebration of Gavin. We are so sorry for your enormous loss. It is a honor to do a small bit of good in Gavin's name.


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