i did not hesitate one moment
to contribute to this years team genzyme runners and their auction supporting NORD.
how could i not embrace the chance
to use my passion, knowledge and abilities
to create something of merit.
after all,
the true reason i am still creating, teaching, sharing so vitally
comes from the very hope of NORD;
research culminating in therapies
for those who suffer the challenges of a rare disease.
how could i possibly know that while i searched for the perfect offering
someones thoughts where passing through the same current of hope,
to make a difference in the lives of others?
choosing a symbol became the more compelling task.
what would speak to the challenge of raising awareness and funds
to help others living with a rare disease?
what would honor the countless people who work so diligently
day after day at genzyme
in a myriad of tasks that together create the therapy
that has returned me and countless others
to a life well lived, full of meaning and hope?
should i paint? mosaic? sculpt?
beautiful in each regard, yet …everything pointed to stained glass.
the ideal format for transparency,
bold living colour,
the intimacy of mouth blown glass,
a place to incorporate a faceted jewel in honor
of light passing through each of us
and our resolve to transmit beauty and purpose.
how could i know someone was searching for a gift of inspiration
to place firmly in the life of her grand daughter?
a touch stone of strength, with the bright hope of planting a seed,
to encourage her own passion to weather a stormy future?
i thought about the famous 13 century stained-glass rose windows
in many cathedrals and churches through out europe.
their perfect geometry was regarded as being similar to the eastern mandala,
a meditative symbol signifying the paths to enlightenment,
the human desire for wholeness.
it seemed a simple and profound fit.
a single red rose.
one of the most recognized and revered flowers.
a symbol of love, honor, sacrifice, and perfection.
passion red for matters of the heart,
conviction, purity, devotion, loyalty, compassion.
leaves. yes, genzyme green, after all, what could signify
vitality and life more than the bold green lettering of genzyme?
a rose…once rare,
transformed by the hands of knowledge,
the study of cultivating, the ability to strengthen, enhance and offer new life.
some will see a rose
others, i hope, will see their triumph,
their perfect offering to the lives of others,
the way i see each of the workers at genzyme
and the inextricable way we are all bound to each other in
perfect concentric circles of energy and light.
how could i possible begin to image that as i created a window
in hopes of helping others who live with the challenges of
rare and debilitating diseases a door was opening
that would in return
flood my heart in impossibly profound ways?
Dear Rebecca,
I hope this email finds you well and that you had a wonderful Easter weekend. My name is Erin. Phillip Maderia was kind enough to provide your email address so that I can write you. I work at Genzyme as a Quality Manager. I have a beautiful 7 month old granddaughter named Lily who was diagnosed with Pompe just weeks after birth. At age 6 months she was also diagnosed with another rare genetic disorder resulting in Hyper Cardiomyopathy. What a special flower our Lily is!
I was introduced to NORD when I began working for Genzyme three years ago. I have pledged every year because my heart goes to those with rare disorders, especially to those where there is not yet a diagnosis, therapy or cure. This year really hit home for our family as I was wondering what I could possibly do not only for the organization but for my granddaughter as well.
“A Rose…” was then posted on the silent auction website. Wiping the tears from my eyes I thought what perfect timing! After I read what you wrote about this beautiful work of art I thought how wonderful, I can make a sizeable donation for a great cause at the same time procure a priceless treasure our Lily can hold dear in her life forever; a symbol of beauty, strength, courage, love and most importantly inspiration. Encouragement to help her find her inner strength as she makes her way through life and inspiration so that no matter what challenges she faces she can create and succeed at anything she has a passion for. This is exactly what her parents want for her.
Folks like you Rebecca will be Lily’s inspiration throughout her life. Exposure to examples of your courage, strength and love for life will help her develop the emotional strength she will need to lead a happy healthy life. I don’t know you but somehow it feels like I do because these attributes clearly are present in your glasswork and I thank you a million times over for that.
We hope you are doing well. I would like to stay in contact with you if it’s OK, just to check up on one another as now you have touched our lives.
On behalf of Lily and her extended family, I want to thank you from the bottom of our hearts for your thoughtful creation, a lovely piece we will treasure for many years to come. Her family now refers to this proudly displayed stained glass treasure as “Lily’s Rose.” A one-of-a-kind lovingly crafted gem just like our Lily. Our wish is that you can autograph the story you wrote about this piece and perhaps provide a photo of yourself so that Lily can have it as a keepsake and to share with others.
Wishing you well and warmest regards,
Erin
a rose.
the simple hope of helping others.
who could have imagined would align with the generosity of a
loving grandmother
to flood my heart with a budding friendship and the arrival of her magnificent
lily!
tomorrow recuerda mi corazon
will announce the opening of the shrine gallery of hope.
where artists from around the world come together annually,
in a virtual gallery
with great hopes of offering a brighter future to the
poorest of the poor
served by
oaxaca streetchildren grassroots.
imagine the doors that will be opened for young children
longing for an eduction.
imagine how their hearts will be lifted
when they realize people they may never know
wanted their dreams to come true too.
imagine roses and lilies and
the flooding of more
hearts.
and the doors your giving will in return open in you.
Rebecca. So much to say here. First of all, your heart must be exhausted as it works overtime loving the entire world around you.~Lily's Rose is so beautiful, the sparkly swirly light of hope. The deep bold colors of health (red) and life (green)This is what I see. Thank you for sharing this letter...and please oh please...send her that signed copy and a beautiful photo of yourself. ~blessings~
Posted by: deb taylor | May 31, 2011 at 10:47 AM
Lily's Rose is perfection. And yes to what Deb said. This post brings tears to my eyes for so many reasons. It's such a blessing for you to have concrete evidence of how far your love and compassion radiate into the world. We all know you're a treasure, but sometimes you might need a reminder -- when you're feeling tired and downhearted.
Posted by: Meri @ Meri's Musings | May 31, 2011 at 12:08 PM
Lily's rose and the story accompanying it are like the shards of light coming through my office window as I type this. So much suffering and sadness in the world, and yet, so much love and healing, too. I look forward to the opening of the virtual gallery soon.
Posted by: Fran aka Redondowriter | May 31, 2011 at 12:22 PM
Why does this place eat my comments? I came back to make sure the link works and guess what? So here, once again with the same loving feeling to let you know what one of my favorite singers can say a thousand times better than I could about what I feel looking at this gorgeous and lovingly created art piece. You already do, but now I am sure, Lily too will discover the secret of the rose:
http://tinyurl.com/3upk8wo
As always, you are in my heart.
Posted by: Allegra | May 31, 2011 at 01:06 PM
dearest rebecca,
How blessed we are that you are here with us. The light on Lily's Rose glows with your love. Your heart touches me deeply. You inspire me to want to do more and to be a better person.
LOVE you.
Posted by: gemma | May 31, 2011 at 08:18 PM
This is so awesome. My heart goes out to you and all that suffer. The rose is very special to me for other reasons, but this story and letter are a wonderful reminder that love conquers all.
I wish you a heavy dose of peace my dear friend.
Posted by: Spadoman | June 01, 2011 at 02:18 AM
words fail me... but my heart is full. i think you know how i feel about this...
Posted by: Leslie | June 01, 2011 at 09:03 AM
Dear Rebecca, Thank you for the invitation to come back here to see what gift you left here for me, for the world. I almost missed this post in my hurried day, and I am blessed, fortunate, and happy, that I did not. Since I am new to your blog, I didn't know you well, just that you are full of life, joy, grace, and beauty--that you make exquisite art and write words that move me deeply.
Now I can see even more why, and I want to thank you for opening my eyes, and my heart even further. I too don't have the words to express the blessing you leave with me.
Many people, including myself, turn inward with pain and illness; you instead turn outward to bless so many others. Thank you for making this choice and for the gift of yourself that you are graciously giving here and elsewhere--everywhere.
Thank you for allowing me to know you...I love you and wish you love today, Olivia
Posted by: Olivia | June 01, 2011 at 11:46 AM
Rebecca,
I am late in seeing this amazing post and this gift of life and love that you have offered Lily, her family, and so many who suffer. I am reminded of the Little Prince and his rose, the one that he watered, protected from the wind, the snails, the tigers and so many other dangers that might befall her by keeping her under a glass globe. "It is the time you have wasted for your rose, that makes your rose so important." “You are responsible, forever, for what you have tamed. You are responsible for your rose.” (antoine de saint Exupery). I believe that you have have been a faithful servant to that responsibility my dear friend. Blessings to you and your beautiful soul.
xoxox,
Noelle
Posted by: Noelle | June 01, 2011 at 11:23 PM
you amaze me.
humble me.
xoxoxo
Posted by: deb | June 04, 2011 at 05:00 AM