Date: August-November 2014
When I started this blog back in November 2012, I was less than 2
months into my career as a volunteer. I
tried to keep up with my posts and for the next few months was current with my projects,
meaning that readers would know what I had been up to in a very timely
fashion. Then as my activities
increased I started falling behind, so much so that at Thanksgiving I am
reporting on events from June. I have
never deviated from this linear timeline and some folks have even asked what I
have been up to recently, considering the last update they had from me was through
a post of an event months ago. It is sad
that this is what our world has come to - over reliance on social media for our
updates. But that linear narrative is
interrupted for today. I will return
back to June after this post, but this is a story that needs to be told right
now. It simply cannot wait.
Back in Spring of 2013 I went
through the Make-A-Wish ‘Wish Granter’ training
and in couple of months was assigned a ‘Wish
Partner’. We received our first
assignment and despite months of trying, we were unable to complete that
wish. Subsequently we have been assigned
another ‘Wish Kid’ and I am happy to
report – more details in a future post – that the process is going well and our
kid will soon have their wish fulfilled.
During this time my friend Michelle, who is a fellow ‘Wish Granter’, approached me to see if
we wanted to take on a wish together.
Her partner is from the suburbs and so they have done several wishes
over there, but she wanted to do a wish in the city. I got permission from my partner to do a wish
“on the side” and so Michelle and I
started seeking a ‘Wish Child’. We did not have to wait long since one of
Michelle’s colleagues brought to her attention her friends 3-year old child who
had been approved for a wish and who was awaiting ‘Wish Granter’ assignment.
We applied and were approved immediately. The child’s name was Kyler Reddick.
Michelle and I scheduled a visit
with the family and had a narrow window on a Sunday in August. Our cab ride turned out to be eventful and we
were dropped off in a location which was miles away from where we
were supposed to be. We walked about for
a bit in the unfamiliar surroundings and since our window was closing fast, we
even considered cancelling. But that
should never be an option with ‘Wish
Granters’ and we managed to get another cab and arrived at the family’s
home, knowing that we would have a short time to meet with them. We had read in Kyler’s file that he was a big
fan of ‘Pixar’ and ‘Disney’ and the living room was a proof
of that. The TV was playing a ‘Pixar’ film and there were toys all
over the place. Kyler himself was
sitting on the couch with his parents, Carey and Rebecca, and at first glance
it was clear that he was a happy child.
I had a feeling that his wish would have something to do with ‘Disney’/‘Pixar’, but we needed to be sure.
BY asking him the right questions and with some help from the parents,
we settled on a visit to ‘Disneyworld’
in Orlando, where he could meet his heroes ‘Woody’
and ‘Buzz’ from ‘Toy Story’. The other
option was a visit to ‘Pixar Animation’
itself in California, but there were some complications there.
Kyler had been diagnosed with
brain cancer and was undergoing extensive treatment. Although this had taken a toll on his body,
looking at his great spirit you would not have guessed it. He was smiling throughout our visit and was
playing with his toys. Rebecca mentioned
that they were waiting to check if they would get accepted for an experimental
trial in Memphis and if so, they would have to leave very soon. This would make a trip to the West Coast a
bit challenging and thus we settled on a short visit to Orlando. They were excited about that and we filled
out the paperwork, including a request for Kyler’s grandma and uncle – his best
buddy – to visit as well. Needless to say,
the entire trip would revolve around his acceptance into the program and we
knew that not only would MAW need to be ready fast, but the family would also
be required to travel at a short notice.
The paperwork is usually mailed
to MAW within a couple of days of the visit, but I have always been a big
proponent of the “personal touch”. So I hand-delivered the papers to MAW offices
and met with Amy, the ‘Wish Manager’. I tried my best to communicate what we had
seen at Kyler’s place and why this wish and its timing were so critical. One of things I brought to her attention was
Rebecca’s picture on the copy of the driver’s license that we are required to
submit. The picture had been taken a
year ago and in it she was a smiling and radiant young woman, far different
than the worried and tired person we had seen. The picture was a testament to the toll that this had taken on her and Kyler deserved this wish...all of them in the family did. I am sure Amy receives such messages every day from other ‘Wish Granters’ and to her credit she
listened and promised to expedite. Within
a few days Kyler’s wish had been assigned to a ‘Wish Coordinator’, Nikki, and Michelle and I worked with her and
Rebecca to schedule the family’s visit to Orlando. Kyler was going to ‘Disneyworld’.
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| Off to 'Disneyworld' |
The Reddick’s were scheduled to
depart from O’Hare airport on August 27th around 7 am. Michelle and I decided to split some of our
duties, where she went and dropped off a “goody
bag” a couple of days prior to the departure. I decided to go to the airport and was
scheduled to meet with the family at 5:30 am.
I arrived at 5:15, thinking that I would be ready to welcome them, but
saw that all of them, dressed in their MAW shirts had already checked-in and
were ready to go inside. I walked them
to the security and the last thing I heard before they walked through was
Kyler’s excited voice saying, “I’m going
to Disneyworld”.
Day’s went by and by following
the
blog that Rebecca maintained – since Kyler’s diagnosis – I was able to
see their pictures from the trip, including Kyler meeting various
‘Pixar’ characters. He seemed on the top of the world, as did the
rest of the family. But it wasn’t all
good news on the blog. I came to learn
that Kyler had been denied admission for the trial and over time the doctors
recommended that he be under the care of a nurse at home. In the meanwhile MAW
“closed” the wish, meaning my association with this wish was
over. But it really wasn’t. Rebecca continued to post updates and
following that became a part of my daily routine. I saw how Kyler’s health was on the decline
but despite that he continued to fight, never losing his love for all things
‘Pixar’.
While all of this was undoubtedly exhausting for her, Rebecca
continued to let us all know what happening, perhaps this being the one outlet
for her to express her frustrations at the extreme injustice that life had presented
her family.
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| The candle at 'Cathedral of St. John's The Divine' |
I love visiting New York city and
try to go there as much as possible. One
of the places that I visit without failure is ‘Cathedral Of St. John The Divine’ on the upper west side. Growing up I was never religious and did not
much believe in the power of a prayer.
That attitude was further reinforced as I pursued a career in
science. But then I came across MAW and
through the ‘Believe’ program that I
proudly participate in each year, I came to myself “believe” in the power of a wish…the power of hoping for a
miracle. One such afternoon I found
myself in my favorite place in New York city and the first thing I did was get
candles at the visitors shop and light one up for Kyler’s health. The situation may have been grim, but there is
always hope for a miracle. The struggles
continued and through Rebecca's blog I continued to follow Kyler – and his parents –
heroic battle against cancer. And then,
on Friday, November 21st I got a phone call from Michelle. Kyler had lost his fight.
It is never easy to accept that
something you have been used to for every day of your life does not exist
anymore. I couldn’t even begin to
imagine what it must be like for Rebecca and Carey. They had known for some time what was going
to happen, but it’s never easy to accept is it?
On Saturday I went for the annual ‘UIC
Children’s Hospital Festival Of Thanksgiving’ and I spoke with Dr. Schmidt,
whom I had met the previous year. She
once again reiterated how a few hours of this party make a huge difference to
the children and their families who are undergoing a tough time. That day more than ever before, I felt the
importance of that message.
The family had arranged a
visitation on Monday evening and Michelle and I had decided to attend. Rebecca had posted on the blog a request for
everyone to wear grey as a support for cure for brain cancer. She also posted a blog entry titled "3 years 5 months 3 days 6 hours and 12
minutes” in which she described the last few hours of Kyler’s life. I have read some heartbreaking things in my
time…some through MAW programs. But
nothing comes close to reading a mother’s anguish about a lost child. It is one of the most courageous things that
I have ever seen in writing. I also learned
that Kyler had been born on June 17th 2011. That was the day I had come to Chicago to
look for my new apartment since I was moving here. I remember that day very clearly. A day which had probably been the happiest one for Rebecca and Carey.
I had rented a car and Michelle
and I arrived at the funeral home at the outskirts of Chicago on a cold, snowy
evening. This was my 3rd
visit to a funeral home in 3 months and you never know what you are going to
encounter. As we entered the room, we
saw that there was a basket of grey ribbons and guests were once again,
encouraged to put them on. I saw Rebecca
and Carey being comforted by visitors and there were a roomful of them. It was a closed casket visitation, meaning
there were children around us and I saw a toddler running around playing as
only a toddler can. In that setting, it
was perhaps the best thing for all of us, to see that child’s behavior. But there was something even more striking in
that room. Throughout the entire place,
Kyler’s photographs had been put up – hundreds of them. They were from when he was an infant, right
up to the final difficult days. And in
all of them one thing was common – his brilliant smile. There were pictures
from ‘Disneyworld’ and from other
family outings or just pictures from his home.
Plus, the room had been filled with Kyler’s toys – almost all of them
related to ‘Disney/Pixar’. We walked around the room, seeing all of the
pictures, but the most poignant for me was a picture where Kyler had put his
face through a cardboard cutout of an adult surfer. I thought that this would be the one which
would haunt his loved ones forever. It
was a picture of the man Kyler would have grown up to be…the man he would never
be. We met with Carey and Rebecca, who
broke down as she thanked us for making his wish come true. We had just done a small thing really. For on that day, in my mind it was absolutely
clear who the real heroes of this world are.
One of the great movies from the
classic era of ‘Hollywood’ is a
picture called ‘Sullivan’s Travels’. It is a story of film director who is known
for making comedies and in his quest to make a more “serious” movie, he comes to realize the importance of making
someone laugh, for sometimes that is all that there is for some people. Chaplin knew it. Keaton knew it. P.T. Barnum, the man who gave us the gift of
the American Circus once said, “The
noblest art is that of making others happy”. And nobody does a better job of that than the
people working under the banner of – what in my mind is the greatest name in
history of cinema – ‘Walt Disney Studios’
and ‘Pixar Animation’. We know them as makers of children’s movies
and the theme parks which are visited by millions. But now that I have had a chance to work with
MAW and have seen kids like Kyler and others who have made these characters their
life. I often wonder if the people at ‘Disney/Pixar’ have an idea on the
impact they make of the lives of all kids…no all people. Yes, the movies and parks are successful and
yes millions of pieces of merchandise are sold, but their contributions go far
beyond that. They make children
happy. I mean truly happy. People need to remind them of
that. At the end of ‘Toy Story 3’ there is a scene where a grown up teen hands over his
box of toys – including his favorite – to a little girl so that through her
love those toys would live forever. As
some of the families walked over to comfort Rebecca, I saw her hand the kids
some toys from a basket. Perhaps it was
time for these toys to find a new home.
There have been a few moments in my life of extraordinary clarity and at
that moment I knew that for the rest of my life I would always be indebted to
the heroes at ‘Disney' and 'Pixar’.
It was time for us to leave and
we walked over to pay our respects to Kyler.
No casket should ever be this small.
It is a strange fate that those who want nothing more than to live are
gone too soon while some others continue to suffer long years in a prison of
pain. We stopped to give our condolences
to Kyler’s uncle and grandma and they both thanked us again and the grandma
even said that she had time on her hands and would love to volunteer. This is something that we have seen a lot
with MAW where the affected families and kids usually find a way to give back
through one way or the other. We
returned back to our daily lives wondering how much time it would take for
Rebecca and Carey to achieve some sort of mental peace to go on with
theirs. The next day I put up the grey
ribbon in my office wall, next to a picture of the family on their way to ‘Disneyworld’; a picture where Kyler has
the biggest smile on his face. Now, there was one final thing left to do.
I had come home on Saturday to
find a hand written sympathy card from MAW, which every staff member had
signed. I pretty much lost it then and
knew that it is easy to take an organization like that for granted. I wrote to the ‘Wish Coordinator’ Nikki that I would like to come meet her at MAW
offices. I went over at noon and told
her how much of a difference MAW makes in the lives of people like Kyler. I am sure it’s something she and MAW have
heard many times over, but it should never get old. They had literally managed to grant Kyler’s
wish in days…days. If I owe people at ‘Disney/Pixar’ a debt of gratitude, I do
not even know where to begin with MAW. It
is my life’s greatest privilege to be a ‘Wish
Granter’ with this organization or even be associated with them. As I had walked out of the funeral home, I
had picked up a card with Kyler’s photo on the front and a poem on the
back. I gave one card to Nikki and she said that she would put it up in her desk. I learned through a search that the poem is written by Vicky Holder and is often
used for occasions such as these. There
is nothing more I can say than to reproduce it in its entirety below. Yeah,
there’s nothing more left to say, nothing other than, "Goodbye little buddy. You’re
now in the great Disneyland in the sky."
They say memories are golden,
well, maybe this is true.
I never wanted memories,
I only wanted you.
A million times I needed you,
a million times I cried.
If love alone could have saved you,
you never would have died.
In life I loved you dearly,
In death I love you still.
Inside my heart you hold a place,
no one could ever fill.
If tears could build a stairway
and heartache make a lane,
I'd walk the path to heaven,
and bring you home again.
Our family chain is broken,
and nothing seems the same.
But as God calls us one by one,
the chain will link again.
Vicky Holder
For Kyler
June 17, 2011 - November 21, 2014
