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.
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.
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:
http://www.giftoflifefamilyhouse.org/support/giveagift/
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.
http://www.giftoflifefamilyhouse.org/support/giveagift/
By Mail:
Gift of Life Family House 401 Callowhill Street Philadelphia, PA 19123
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.
CaringBridge
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.
