A Superhero Sleeps Here...

We made it through night one.

Thank you to everyone that came to honor Gavin.  It was a very difficult night - but so moving to see so many people who were inspired by our sweet little boy.  We were told there were a little over 400 people there.  Unbelievable.

Please pray for us tomorrow.

And the next day.

And maybe, well, for a long time.

Good night, Moon.

Dear You, When It Comes To Funerals...

Dear You,

I hear you're coming to one of Gavin's special services.  Whether you're coming to the viewing tomorrow night or the funeral Tuesday morning, I want to say thank you.  And I also want to say... I know you are probably nervous.

So am I.

I remember my first (and only!) memorial service for a child.  Way back when, when Gavin was an infant, the two of us lived at Nemours A.I. DuPont Hospital for Children for a few months.  He was very sick with RSV and Botulism and I was also very sick with worry and fear.  During our stay, he contracted a bad stomach virus.  This was the worst case scenario for me.  I never liked to leave him alone - but with all of his blankets and clothes from home I was forced to do wash in the hospital's laundry facilities they provide for parents.  I would wait until he was sound asleep - BOLT down the hallway and throw my wash in - BOLT back to the room - repeat.  One day, breathless from my run and tossing laundry into the washer, I met Amy.  She introduced herself and asked why I was there - I told her my tale of woe about Gavin's illness and now the stomach virus.  She told me she was there with her daughter, Arden, who was fighting Neuroblastoma.  I always tell people that you can't compare pain - that everyone's battles are important and scary and all uphill to them - but I won't lie... in that moment I felt like a big jerk.  I had very little to complain about next to Amy.

I said goodbye to Amy and my washing clothes and BOLTED back to Gavin.  He woke up and things went south for a while with him which required my attention... and I just forgot about the laundry.  Amy did not.  A while later, the nurse carried in a pile of perfectly folded clothes and said, "Amy from the laundry room wanted me to deliver this to you."

Grace.

Unfortunately for Amy - and the world - sweet Arden passed away.  I was crushed.  I knew I wanted to go to her memorial service and support Amy in any way I could.  Ed was out of town and I was pregnant with Brian.  The thought of going alone induced major anxiety.  But I kept thinking of Amy - and her grace.  I knew I had to do this.  I decided I'd feel better if I had a job, so I nervously approached Amy and asked her if she wanted me to photograph the service so she wouldn't forget any of the details - pictures of the church, the photo boards, the weather... anything.  I ended up making her a video that evening - it made me feel less helpless.

Driving to the church that morning, I was shaking and crying the entire way.  I remember rehearsing what I would say when I saw them.  When I got to the parking lot, it took me about 15 minutes to get up the courage to get out of my car.  I was SO nervous to see them... ESPECIALLY nervous to see Amy.  I really assumed I would find a broken Mother who needed someone to hold her upright.  I couldn't believe it when I saw her and she seemed to take on the role of comforter to everyone who approached her.

Grace.

Dear you,

All this to say, I have been there.  A child's funeral is awful.  Please don't be nervous to see us.  Please don't worry about trying to figure out what to say.  We know there is NOTHING you can say that will reverse the order of events that brought us here.  But also know that it's possible you'll fumble and say the absolute wrong thing.  We don't care.  There is no right - and there is no wrong.  You being there to show your love for Gavin and our family is enough.  A simple silent hug works for us.  We love hugs.  And don't worry about trying to hold it together - if you're like us, it's sometimes hard to hold it in.  We won't expect you to.

Me?  Right now I am falling apart.  Yesterday and today were very difficult, emotionally, and I have been struggling with pretty bad anxiety.  It's been very busy - my sisters and nieces and Mom have been here helping with photo boards and entertaining Brian (who has been having a great time with his cousins over the weekend) and ironing my dress and hugging me and helping me edit a program that, thanks to Meghan from hope.joy.photography, looks more beautiful than I could have imagined.  She was so generous to donate her time to design them - and even had over a hundred people on my Facebook page wanting to donate to her paypal account to pay for them.  Something I didn't expect - but too many people were wanting to help.  She is planning to give the leftover money to one of the charities we chose in honor of Gavin.  And our wonderful friend and the boys' regular hairdresser, Silvia, made a house call today to trim my hair in my bathroom. People are amazing.  We have been surrounded by love.

I am hoping I can learn from Amy and have even a fraction of the grace that she showed at her beautiful daughter's service.

But I can't make any promises.

Love,

A Mommy with a very broken heart.


P.S. - You know how people make photo boards for funerals?  Do you also know how many photos I take of my children?  Imagine combing through each day over 5 1/2 years - multiple photos.  I had a very hard time choosing - so there are two photo boards for each year.  You might want to come early if you want to see everything.  And please humor me and tell me you looked at every single one?  I remember every moment in every photo - what we were doing, where we were, why we were laughing... and that says a lot for this old lady with a bad memory.  I can't remember my passwords, but I remember every moment with all of my children.  They are ingrained in my heart.

My Worst Fear...

I just want you to know that "something happening" to Gavin was always my worst fear.  I feared that he'd get hurt.  I feared that he'd be overlooked.  I feared that I wasn't getting his teeth brushed well enough when he'd fight me.  I feared that someone would say no when I asked for anything to make Gavin's life easier (luckily I rarely heard no).  I feared that his fragile left eye that survived the severe corneal abrasion would tear again.  I feared that he'd choke - or aspirate on bath water when he insisted on putting his face in the water.  I feared a repeat febrile seizure after last year's seizure that Ed and I both described as the scariest moment of our lives.  I feared that we'd die without us having something in place for him - someone to take care of him.

I took some criticism along the way.  I was a "helicopter mom."  "Overprotective."  "Dramatic."  

I'm not gonna lie - I'd like to punch those people in the arm right now.

Today I got through Gavin's first three years and lovingly chose photos to display at the services.  My sisters helped assemble them on display boards.  I struggled through his memory box pulling out tiny hospital bracelets and special keepsakes.  Miss Sara took Brian to my wonderful friend Patti's house for a playdate with her twins.  A co-worker of Ed's brought dinner.  And then Miss Sara and I went to the mall to find me something blue to wear for Gavin's funeral.  I was sleepwalking.

Now I'm home - in bed - listening to the pouring rain pound my window.  It's like the Heavens are giving me permission to grieve.

And so I do.  

"Something happening" to Gavin was always my worst fear.

But I never imagined he'd suddenly die.

For the last five and a half years my identity has been wrapped up in him... in protecting him... in fighting for him... in my fears for his safety and well being and his future.  But in the end, I was helpless and useless.  There were no letters to write, appeals to begin, strings to pull.  I couldn't help him.  And he died.  My very worst fear.

Tonight I feel like it will rain forever.

A Meeting Orchestrated From Heaven...

I've been feeling like I'm starting to sink... sink into the depths of despair and sorrow.  My anxiety has become so bad I am now on medication to help me walk through the days and be present for Brian.  And we are present for Brian.  He needs us.  Ed took him out before dinner last night to "Love Bomb" him.  They went to Arnold's Family Fun Center, where Brian reminded Daddy was the place we all were just recently for Gavin's "Half Birthday" celebration.

He bounced in bounce houses and went down huge blow up slides and played duck pin bowling.  It was good for both of them.  With me at bedtime, after our book, I walked to the door to turn off his light and I heard, "Oh!  I forgot!"  He jumped out of bed and walked over to the little plastic heart that he made at the hospital that hangs on his closet door by the "invisible string."  He shook the heart, gently tugged the string and whispered, "Good night, Gavin."

I'm not sure how I'm going to do this.

The planning is good and bad.  It keeps me busy, but then I suddenly feel like I'm drowning in decisions and plans.  I was so grateful that some of Ed's former co-workers took over handling videography for us.  They will even come up with a way for me to share it all online for all of you at some point in the future.  And I have a wonderful woman that will be taking the programs off of my plate.  I'm feeling a little lighter this morning.

But there are some things that bring me a lot of comfort.  As I see (or am told) about the incredible impact Gavin's story has had far and wide, I feel so proud.  I have always thought that Gavin was sent here to teach and change people.  And I can say for certain that he accomplished his mission on Earth.

As you know, I was completely devastated when I learned that Gavin's liver wasn't able to be transplanted in that little "three year old boy from Texas."  I worried so much for the Mom of that boy as well as the boy, himself.  Although it's customary in organ donation for them to give very little information about the donor and recipient - I do not think it was a mistake for them to tell us the age of this boy and the state that he lived in.  I am one that thinks nothing is by accident.

I went back and forth for a while deciding whether I should share this.  I am not, in any way, looking to get anyone in trouble.  When I weighed the pros and cons, I felt the good outweighed the bad tremendously if I did share it.  Organ donation is very important to us, for obvious reasons, and by sharing openly our journey I hope to inspire people in a lot of ways.  I hope people are inspired to sign up to be a donor (which you can do here:  http://www.donors1.org/registry/ )  I also hope that it changes people's perspective around organ donation.  But one of my greatest wishes is that donors and recipients - past and present - are offered a special glimpse into the other side.  There are high emotions on both sides - and if I can help lift some of the burden off of the hearts of either side, my job will feel complete.

With all that said...

The other night, still numb from hearing about Gavin's failed liver transplant, I sat in bed and looked at my personal email.  I sighed when I saw there were over 400, knowing that I'd never get to all of them. At least not that night.  So I scanned down the list and felt my heart stop when I saw one with the subject line:  

3 Year Old Liver Recipient Family from Texas 

As I read the letter, tears streaming down my face, I felt the burdens of the failed liver transplant lifted from me.  I was so grateful for this beautiful letter - profoundly changed, actually.  I had been so worried about this mother and her precious three year old son - so her email was such a comfort.  And, after speaking with my new friend, the mother of this three year old little boy, we both decided that it should be shared.  Our hope - both of us - is that it will help more people who are traveling the emotional journey of organ donation.  That it will bring hope to people.  And, probably most importantly, that it will raise awareness and encourage people to become donors.

With so much love and respect, allow me to introduce you to my new friend - the actual mother of the "three year old little boy from Texas."  (I removed all names)

I’m not quite sure how to start a letter such as this but I will try my best. Forgive me in advance if the words fail me as I’m not even sure there are any “right words” to use.

I believe we may have been your son’s intended liver recipient yesterday.

We have a 3 year old little boy who we found out about a month ago has liver cancer (his twin had the same cancer 2 years ago).  We live in Dallas, TX and yesterday morning around 7:30AM, we received the call we had been waiting for; there is a possible liver donor match for our son. Within 30 minutes, we were driving to Houston in preparation for a possible transplant surgery.

Before I say anything further, I want to express my sincerest condolences for the loss of your son.  I do not know you, but as a parent also dealing with a chronically ill child, I can imagine what a long, difficult journey this has been for you and your family.  I read just a few of your most recent blog posts and I take comfort in knowing you have so many people surrounding your family with support and love.  I hope the love you are surrounded with helps comfort you during this tremendously difficult time.  It sounds like your family has been through more than your fair share of turmoil and yet, I can tell by your eloquent words, you have handled it all with dignity and grace.

I had received the link to your blog this morning from a friend through Facebook who put two and two together. I have been thinking about your family all day.  It sounds like from your post, you knew it was intended for a 3 year old little boy in Texas.  All I really know is the surgeons flew out to Delaware and upon further evaluation, the liver could not be used.  They never supplied a reason why.

My son has quite an extensive medical history in his short 3 years (liver cancer is just the most recent diagnosis). He was a previous 25 week twin born with chronic lung disease and came home after 9 months in the NICU, trached and on a ventilator. But, that is not the real intent of writing this letter.

I wanted to let you know, whether we were the actual intended recipient yesterday or not, that the decision your family made in the midst of your grief and own personal suffering is amazing. Other words that come to mind are: Inspirational. Courageous. Brave. Selfless. Beautiful. Beyond generous. A true gift. In fact, the best gift someone can ever give; the gift of life.  I read you are holding out hope that Gavin’s kidneys could be used.  I will pray for that gift to happen since I can see how much it meant to your family and I understand what it can mean for the recipient family.

Even though we did not receive a liver yesterday, you have given another gift in its place.  A gift of hope and understanding.

I would like to explain. I was devastated when I learned of my son's cancer diagnosis.  My heart, shattered into a million pieces.  We had already fought so hard, so valiantly, over the last 3 years to get our two boys healthy. Then, when I learned a few weeks ago he would need a child liver donor to have a chance at his own survival, it was a double blow to my already broken spirit.  I cannot quantify how many hours of sleep I have already lost, knowing when we get the call for his liver, it means another family has lost their precious child and has made the ultimate sacrifice.  I have been guilt-ridden for weeks over the thought of what saving his life will mean for someone else.

But, after reading your blog, the guilt I had been carrying around is a little less. The heavy burden I was carrying around, a little lighter. I understand and can see the perspective of a donor family so clearly now. The pride you feel towards your child and the honor it is to be able to provide such a gift.  Thank you for sharing your story so openly, so completely. If you had not, I would never have read what I did this morning.  In time, I may now be able to obtain a new level of acceptance and appreciation for the process I could not have gained anywhere else. So even if this is all total coincidence, I still learned a great lesson today. If we were the intended recipient, please know just the gesture alone meant the world to us. We just were put on the liver transplant list 6 days ago so he has time for another potential match.  We were warned ahead of time there is a chance we could get the call and then the surgery might not happen.  I tell you this so you know we are ok. It sounded from your post you were genuinely concerned about the recipient family. If I can help ease your mind even in the smallest way, I wanted to reach out and do so.  

Please do not feel the need to respond in any way.  Please focus on your family and healing during this difficult time.  I just felt compelled to let you know that if we were the intended recipient, even though the surgery itself did not happen, you have inadvertently helped me more than you can possibly know. I do have continued hope that one day there will be a match for our son and you have provided me insight I may have not gained otherwise.  I have hope that there are other wonderful families like you out there in the world and that one day, I can share with him what incredible, selfless people we have met during his journey to recovery and remission.  

The organ donation process is set up to protect identities so internet sleuthing and meetings like this won't happen.  But to be honest, I think this meeting was supposed to happen.  I truly believe it was orchestrated from Heaven by my sweet and generous son... his way of continuing to help others and save lives.  I am so grateful for this chance meeting and the impact I know it will have on the world.  Thank you, Gavin.

Please, in Gavin's memory, remember our precious "three year old little boy from Texas" in your thoughts and prayers.  We are rooting for you!!

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:

http://www.giftoflifefamilyhouse.org/support/giveagift/

Or direct
 https://secure.acceptiva.com/?cst=841eb8

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:

http://www.donors1.org/registry/

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.

In Lieu of Flowers - Part One...

Let me tell you a little story about two brothers, a wonderful woman and an invisible string.

When we knew that Gavin wasn't going to make it, my immediate thought was Brian.  How in the world were we going to tell this sweet little boy that his brother wasn't coming home?  I was so nervous.  Brian had seen Gavin in the hospital before - even very sick in the intensive care unit.  But this was different.  Gavin was completely unresponsive and his appearance each day was changing for the worse.  We finally decided to have him come in after having a discussion with the wonderful Jenn from the hospital's "Child Life" department.  She told me about projects she could line up, books they could read, how she could explain what Brian could expect when he saw his brother... I was sold.

Brian came in with Miss Sara and we met Jenn from Child Life in an empty conference room.  The first thing she did was give us all white butterflies.  Brian... me... Daddy and Miss Sara all got one and we each colored them with markers.  Jenn told us all that we had to whisper a wish on our butterfly.  She explained to Brian that once we got to Gavin's room, she could whisper that wish in Gavin's ear.  Then, only Gavin and Brian and the butterfly would share that wish.

Next she pulled out a wonderful book called "The Invisible String."

 The book beautifully explains how there is an invisible string connecting us with ALL of our loved ones.  And, at any time, you can tug on your invisible string if you want to bring someone closer to you.  We all laughed as we practiced tugging on each others invisible strings.  Brian loved this story (and I ordered it  from Amazon before Jenn reached the last page).

After the book, we filled clear, plastic hearts with shiny gems and attached a translucent stretchy piece of string to the top.  Brian made one for himself and for Gavin.

Jenn told him that the stretchy string could be like the "invisible string."  Maybe he could hang it in his room and pull on it any time he misses Gavin.  (That's just what he did)

She asked Brian if he wanted to get messy - and, even though Brian isn't a messy kid, he seemed to understand that these activities were important.  He chose his color (red) and she placed it all over his hand so he could make a handprint on the canvas board.

It turned out beautifully.

It was time for us to go back to see Gavin.  Jenn got down on his level and lovingly explained to him some of the things he might see.  The tubes, the beeping, the wires.  She told him she had another surprise - a teddy bear.  There was one for Gavin and one for him so they'd always have the teddy bear between them.

As we walked into Gavin's room,  I felt Brian's hand grip mine a little tighter.  I swallowed the lump in my throat as I heard his little voice below me saying "Shhh....quiet. Gavin's sleeping."

He sweetly gave his big brother the teddy bear, saying "Here you go, Gavin!"

I lifted him up so he could give Gavin a kiss and he told him he loved him.

Jenn got to work on Gavin's handprint.  Brian chose blue - which is the color we love on Gavin.

I will treasure these side by side handprints of both of my boys.

Brian's experience was profound.  The Child Life department does such a great job - not just for children who are going to lose a brother or sister, but for all the patients.  Gavin has enjoyed toys and videos and stuffed animals delivered to his hospital rooms by the wonderful Child Life staff in previous visits.

We really bonded with Jenn, our Child Life specialist.  So much so that she came in over the weekend when she wasn't working to see us.  She thought we might like a ceramic casting of Gavin's hand.  We were so touched.

I can't express any more than I already have the overwhelming love I have for these two boys.  My constant goal as their Mom was and is to make things right for them.  I wanted to be consciously aware of their emotional needs just as much as their physical needs.  Having the support of the Child Life department - and Jenn - helped me so much.  She lessened my anxiety about bringing Brian in to say goodbye - Jenn worked with Miss Sara to help her handle questions from Brian after the two of them left for home - and she gave me lasting keepsakes.

Ed and I are so, incredibly grateful for the beautiful experience Child Life gave Brian... Gavin... Miss Sara... and us.  We want to give back to them as our way of saying thank you. Jenn ended up convincing me that it would be okay, and I'm so grateful she did.  I would bet that Gavin was the most grateful, actually.  I am sure he was waiting for Brian.

Maybe someday one of them will let me in on their butterfly secret...

So, if you feel so moved - please consider giving to Nemours Child Life Department instead of sending us flowers.  You can give money by going to the Nemours website and clicking on the "Make a Gift" tab.  It will bring up a secure form and you should check the "other" box in the Donor Designation section.  Then, down below, you can type in "Child Life Department" in the Designation Note.  You will also be able to tell them that this is in memory of Gavin, which we would love very much.

If you'd like to help in a more concrete way, here is information from Jenn on what their department does and what their greatest needs are...

It is the job of Child Life Specialists to help patients and families cope with the journey of hospitalization from the youngest of children through teenagers.  Sometimes, that means a quick hospital stay and sometimes it is a very long stay.  Our gifted donations help provide toys to use for comfort as well as for distraction purposes during medical procedures.  Birthdays, holidays, and other special events are spent in the hospital and Child Life Specialists strive to help families celebrate these moments and utilize donations to make this happen.   There are also times when families need assistance coping with the end of their hospital journey.  Child Life Specialists use very specific tools tailored to individual family needs including special books as a therapeutic tool.  Often, families choose to have Child Life Specialists help in creating memory items to encompass a special life including plaster hand molds and handprints created on canvas with paint.  It is through thoughtful donations from wonderful people that help supply Child Life Programs with the resources to provide families with these powerful tools.  Whether it is a single rattle, a bottle of paint, or something larger, we appreciate and utilize all of our donations.  Thank you so much for considering us.

It is never easy for a child to be hospitalized, but your thoughtfulness and generosity will allow many of our patients the opportunity to 'just be a kid' and not think about their illness or injury.  A gift of toys, games, books, or crafts can do wonders to brighten a child’s life while they are in the hospital or clinic waiting room. Our Child Life programs at Nemours offer activities designed to help children cope with their hospital stay.  Child Life specialists in our hospitals are trained to work with children who have serious illness or are recovering from surgery — often using toys, games, and crafts to allow them to express their fears and hopes and regain a sense of mastery and control. 

We do ask that all items be new, clean, and unused for infection control purposes.  Currently, we are most in need of infant/toddler items and baby dolls.  Rattles and teethers are always great.  Also, any toys that are made of plastic instead of cloth (so we can clean them), toys that light up or play music, anything that makes noise, and the 'Little People' figures (not the sets, just the people) are all items we need.

Alaina Norvell

Child Life Assistant

Nemours/ Alfred I. duPont Hospital for Children

1600 Rockland Rd.

Wilmington, DE 19803

Phone: 302.298.7047

Email: anorvell@Nemours.org; Fax: 302-651-4073

TOYS

Infant

Crib Mobiles (all plastic)

Crib Mirrors

Crib Projector/Soother

Rattles

Teethers

Toddler

Stackers

Little People (just the people)

Disney Toys (Princess, Cars, Minnie/Mickey, ToyStory)

Music & Light up toys:    http://www.toysrus.com/product/index.jsp?productId=13148214

Cause & Effect Toys: 

http://www.fisher-price.com/en_US/brands/babytoys/products/42985  

4-6 year olds

Baby Dolls (all vinyl or plastic—no cloth)

Duplo Blocks

Single Matchbox Cars

Plastic Tea Party Sets

Little People/ Wheelies

Fisher Price Medical Kit

6-12 year olds

Barbies

Small Lego Kits

Action Figures (Spiderman, Marvel)

Play Food (Melissa & Doug)

Dress-up Kits

Video Games—Rated E

Teens

Headphones

Nail polish kits

New Release PG-13 DVD’s

Teen Video Games—not mature rated (Xbox kinect/360, Playstation II or III)

Sport Team items

Movie Tickets

GAMES

Playing Cards

Uno Cards

Connect Four

Sorry

Candy Land

Battleship

Operation

ARTS AND CRAFT

Coloring Books
Crayola Crayons, Markers, and Colored Pencils (8, 16, or 24 count) Beads Non Latex, Acrylic Paint   Paint Brushes
Bubbles- small individual bottles
Play-Doh
Melissa & Doug Craft Kits
Glitter
Model Magic
Sand Art Scrapbooking Supplies

ELECTRONICS

New Release DVD’s-- Rated G, PG, and PG 13—No R-Rated Movies

X-Box 360, Kinect, Wii, Playstation II, Playstation III, & GameCube Games-- Rated E & Teen—no Mature Rated games

Nintendo DS & Games-- Rated E & Teen—no Mature Rated games

CD Players

Ear buds/ Headphones

Robots/ Robot Dinosaurs

Miscellaneous

Rubbermaid Storage Containers with Lids- (S, M, L, & XL sizes)

Books, DVD’s, & CD's in Spanish—No R-rated DVD’s

“The Invisible String” book: http://www.amazon.com/Invisible-String-Patrice-Karst/dp/0875167349 

Music Therapy Items

Wind Instruments

Alto Recorders

Train Whistles

Plastic Rainmaker/ “rain stick”

Percussive Instruments

Jingle Bells

Sleigh Bells 

String Instruments

Acoustic Guitar

Electric Guitar

Bass Guitar

Ukulele

Mandolin

Violin

Electronic Instruments

G-Project - G-Go Portable Wireless Bluetooth Speaker

ION Audio All-Star Guitar for the iPad

ION Audio Piano Apprentice for the iPad

ION Audio iDJ 2 Go for the iPad

Electronic Keyboard (Yamaha or Casio)

Portable Karaoke Machine

Headphones

Microphones

CDs for CD Pharmacy

Relaxation CDs for Kids

Radio Disney CDs

Children Music CDs 

Karaoke CDs

Sing-A-Long CDs

Princess CDs

Dancing CDs 

World Music CDs

NOW CDs

Holiday CDs

Movie Soundtrack CDs

Musicals CDs

TV Show CDs

Books

Hal Leonard The Easy Disney Fake Book

The Easy Disney Fake Book: Melody, Lyrics and Simplified Chords

Hal Leonard: The Disney Fake Book for Piano, Guitar and Vocals

The Easy Children’s Fake Book: 100 Songs in the Key of “C”

Hal Lenoard How to play from a Fake Book for Keyboard

Hal Leonard The Folksong Fake Book C Edition

Fake Book of the World’s Favorite Songs

**We are most in need of the Highlighted items**

Two more "In Liew of Flowers" requests will be posted tomorrow.

Thank you, as always, for loving our family.