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The Bliss Blog

The Bliss Blog

Sara’s Smiles- Lift The Cloud, Inspire The Joy

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The Philadelphia Flower Show is an annual event that heralds the coming of Spring. This Winter weary woman who hadn’t attended in decades, was eager to immerse in beauty. Little did I know that it would go far beyond the blossoms and butterflies that lent their color and wonder. I was offered the opportunity to volunteer at a table for Sara’s Smiles.  A few friends were already on board with it, and although I had limited knowledge of the purpose of the organization, I did some research and then leapt into it, wings spread. Greeted with hugs by Jennifer Kogen Burke and Alison Kogen Feldman and draped with a bright feather boa, the better to attract attention of passersby, I was given a brief run down of what our delightful task would be.  We were to invite folks to sign cards with inspiring messages for children in hospitals up and down the East Coast of the United States who were living with cancer. Vividly hued markers and cloud shaped cards were scattered across the tables. By the time I left the convention center, my feet were tired, but my heart was light.

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This activity was in honor and memory of Sara Burke who had passed in 2008 after courageously facing the disease with the support of her loving family and friends. Jennifer is her mother and Alison, her aunt who continue to champion the cause of bringing as much joy as possible to other families who are in the same situation that they unexpectedly found themselves in.

I had the pleasure of interviewing Jennifer afterward.

Please share some background on Sara’ Smiles.

Sara’s Smiles began before Sara was even discharged from the hospital in 2008. As we were approaching the end of her treatment, we began to talk about doing something to give back to CHOP (Children’s Hospital of Philadelphia). It was our home away from home for seven months and almost every person there- no matter what their role- had a special place in our hearts. When Sara had been declared “in remission,” the staff would tell her that she should celebrate with a party. Sara would always add, “and a fundraiser!”

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That enthusiastic response was typical for Sara. Every day in the hospital, she would want to know what was on tap in the fun department. We filled every waking moment (and many nights) with arts and crafts, games, and activities. The staff always loved to come to our room because it was decorated with messages of love, artwork, and party lights.

We also searched out any and all resources available to us during treatment. For instance, “Chemo Angels” provided Sara with secret Santa-type pen pals who would send messages and small gifts. “Super Sibs” supported her siblings at home, reminding them that they were special too. Small pick-me-ups like these made a big difference in our days.

We came to realize early on that not everyone took this approach to their stay in the hospital. Some people just couldn’t imagine having fun in the hospital. Others didn’t have a support system nearby or at all. Many were just too overwhelmed to even know what to do. This quickly became our focus. We wanted to reach out a hand to others in helping to create a warmer, more personal, more fun, and thus more empowered experience for children diagnosed with cancer as well as their families.

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When she passed, what helped your family continue on as you did?

First and foremost, the support of our family, friends, and community helped keep us afloat. Knowing that Sara was aware of how much she was loved gives us tremendous peace of mind. Although there is a great deal of pain, we are fortunate to have that peace. Our family, friends, and community continue to be there for us and that supportive circle continues to grow. It’s not any particular act of kindness that has helped, just the knowledge that people are there, that they are trying to understand, and that they are willing to do whatever is necessary. The hard part is never knowing what is necessary on our end. It’s always easier to help others than to help ourselves. Identifying our own needs is surprisingly difficult

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Developing Sara’s Smiles also helps us to continue on. It is the best way we know how to honor Sara’s memory and a piece of Sara’s spirit is in everything we do. Our mission is very “Sara” and we know that she would heartily approve of our mission to help others find joy in each day. The ability to focus on Sara’s Smiles diverts our attention from our own pain to helping alleviate the pain of others. It’s important to use our experience to make it better for those walking in our footsteps.

What can people do who feel uncomfortable being around those who are grieving, especially around the illness and death of a child?

It is tough to help those who feel uncomfortable around those who are grieving and/or dealing with illness because each and every person who is coping has unique needs and responds differently to the efforts of others. Some are very private, others are an open book, and some just don’t even know what to ask for or how to deal with being the focus of attention. Emotions run the gamut as do responses to what may seem like simple statements and/or offers. The most important thing is to just let the friend/relative/community member that you are cheering them on. Offering concrete services such as driving siblings to practices, shopping for groceries, or offering to take a walk if and when needed with the “coper” is always better than saying “let me know if there’s anything I can do.”

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There is no reason to feel uncomfortable around someone coping with illness or death. That someone is human and needs to know that people care. A simple note or phone call can accomplish that. Silence can make a loud statement. Avoiding the subject or remaining silent can feel like abandonment at a time of need. It is better to reach out than to do nothing at all.

How does Sara live on in the work that you do?

We feel strongly that a piece of Sara’s spirit is part of everything we do. Despite the variety of grueling circumstances that each day brought during Sara’s illness, Sara was looking to have fun. Every morning she woke up wanting to know what was on tap for the day ahead. Sara crammed in as much joy as possible, regardless of her disabilities, treatments, or setbacks. We took advantage of every opportunity we had to keep her spirits buoyed. As a result, we have many happy memories on which to look back. We want others to have that same experience. It is important for both the patients and their families.

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Are there particularly moving stories to share about what you have seen since the organization has begun?

This is a difficult question because the story of Sara’s Smiles is somewhat open-ended. Currently, we deliver our kits to the hospitals who, in turn, distribute them to patients as they are admitted to the oncology floor. We rarely have the opportunity to see patients respond in person. We have heard many personal stories at events we’ve attended though. It feels good to be able to offer a ray of hope to someone who has been plunged into what feels like a different universe.

Hearing the diagnosis of cancer can simultaneously feel like a swift punch to the stomach and landing on mars. Cancer is a new world with its own rules, terminology, and landscape. It helps to have someone aid in navigating the new, and frequently scary, terrain. There is beauty along the journey, it’s just found in different places than we’re used to looking.

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In your wildest dreams, what would you like to see happen?

In our wildest dreams, we would like to see every pediatric oncology patient receive a Sara’s Smiles Inspiration Kit, take advantage of the resources on our website, and know that they are connected to a caring community, despite their physical isolation. We want every child to feel empowered, find happiness, and know that they are loved and not alone.

How can people be of support to Sara’s Smiles?

There are several ways that people can be of support to Sara’s Smiles. The most important thing anyone can do is share our website, www.saras-smiles.org, with others. It offers a comprehensive list of valuable resources such as games and activities, strategies to manage pain and stress, glossaries of oncological terms, and ways to connect with others with similar diagnoses.

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People can also host or participate in an Inspiration Station. Sara’s Smiles provides hosts of Inspiration Stations with cloud-shaped Inspiration Cards to be filled in by volunteers. The Inspiration Cards are crammed with colorful, uplifting words, phrases, and pictures. The cards offer an extra measure of love and support to the patients and families who receive them. They can also be used to add a spot of cheer to the walls of a child’s room. Inspiration Cards act as a constant reminder of the strength that lies within each child and the unbroken, loving connection to a community that cares about them.Donations, of course, are always a method of supporting Sara’s Smiles. Contributions fund the packaging and delivery of Inspiration Kits to children diagnosed with cancer. Our kits provide a sampling of the resources found on our website. They contain items that help families to stay organized, entertained, connected with others, and to explore creative ways to encourage smiles. We believe that engaging children not only brightens their spirits, but empowers them as well. Currently, Inspiration Kits are delivered to children receiving treatment at fourteen hospitals in six states and we hope to significantly expand our reach over time. Kits can also be delivered, free of charge, to children who are diagnosed with cancer but receiving treatment at hospitals other than those with whom we are partnered.

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Jennifer,  Edie and Alison at the Sara’s Smiles table at the Philadelphia Flower Show

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We Never Know Who We Will Touch With Our Words

It is no secret that I am addicted to words. As a career writer, I live and breathe their essence. They delight me to no end. They are the beat of my heart and the blood that flows through my veins. They are a source of emotional, spiritual and physical support. They feed my right livelihood work that pays the bills. They have kept me sane and vertical and reminded me in the midst of the dark nights of the soul, that the sun will come out tomorrow. I write because I can’t NOT write. I write also because, so I’ve been told, that it makes a difference in the lives of those who take in the words and make meaning out of them for themselves.

When I cast the words out in the blog-o-sphere, I send with them, a prayer that they reach whoever they are meant to and, because I am human, I would love to receive positive feedback. I like seeing the numbers go up on the little counters on some of the pages of the sites for which I write. Not being totally altruistic.

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Today, I had cyber encounters with two talented writer friends. One of them was responding to an article I had written for The Huffington Post called The Perils and Pitfalls of Being a Prodigious Writer. I had quoted her in it and she was astounded that I had mentioned her, since like many writers, she too questions who is reading her stuff and whether it is having an impact. Theresa Byrne’s writing is clever, engaging and gleaned from her own life experience. Her articles and memes always spark me to action.

The other is Kurt Koontz whose book A Million Steps chronicles his journey along The Camino. He sends out a regular newsletter with short snippets of insights that always connect to issues with which I am either grappling or in which I am splashing about playfully. Today’s was no exception. He was writing about the concept of placing moats around ourselves so as to keep out what we fear. He encouraged folks to ‘de-moat’ themselves. I think in metaphors too and that one is apt for my own healing journey, even though I can’t see myself literally traversing the long walk he took. My own ‘Camino experience’ looks different and I need not get physical blisters on the soles of my feet from it. I can certainly say that emotional blisters have resulted from having pebbles in my soul shoes.

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My response:   “I think my moat has been work and co-dependent relationships. Hiding behind what looked like dazzling and tapestry draped walls made it appear that all was well. I would let the drawbridge down and invite folks in to the castle where there would be all manner of luscious banquets spread and musicians and heck, even a court jester. The thing is, much of it was illusion. Smoke and mirrors. Sadness masquerading as joy. Now that I am facing those addictions, the hospitality is genuine. The joy is genuine. The Lady of the castle is revealing the real.”

Thank you, Theresa and Kurt and a gazillion other wordsmiths who keep me honest.

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Inhaling and Exhaling

Breathing is necessary in order to sustain our corporeal existence. Inhaling and exhaling, over and over. The average human takes 12 breaths per minute which comes out to 17,280 each day. This doesn’t factor in times of exercise. It is something that most people do without even thinking about it, unless they are subject to respiratory conditions. At age four, I was diagnosed with asthma. It was not generally exercised induced, but rather, would sneak up on me when I experienced emotional stress, or with no obvious precipitant. That was when my parents would help me to calm down and rest until my galloping lungs could catch up; it was called ‘stridorous breathing'; with a raspy, wheezy sound. At night, when the breathing got even more precipitous, my mother would take me into the bathroom and turn on the shower as we would take in steam until my lungs would be more receptive to air. She would sing and talk to me to ease things. That went on for several years and improved when our family doc recommended swimming as a way of expanding my lung capacity. I joined a swim team and that became part of my joy as I competed from ages 11-18 and then coached for the following three summers.

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Since I have found that nothing happens in isolation, I notice a parallel between my ability to give and receive love and support and my ability to take in and release air. We are relational beings who, unless we live in a cave all by ourselves, need to interact with and rely on others for our survival and growth. For some, it is easier to give and for others, to receive. In order for a complete cycle to take place, we do need to engage in both activities. I had become accustomed to being a giver; believing on some level, in the proverbial “It’s more blessed to give than to receive.” What I had come to recognize is that it is easier and somehow safer to give, since when you are in that role, you are in charge. You get to decide how much, what, to whom you give. When you are the receiver, it places you in a vulnerable position, since you are at the mercy of another’s whim. It also occurs to me, that there is a tinge of vulnerability on the giver’s part, since it is possible that the prospective recipient may not want what we are offering. I am learning to be both a generous giver and gracious receiver.

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Back to the breathing analogy. My pattern was to have difficulty exhaling, rather than inhaling. I rarely breathed out completely; fearing that I wouldn’t be able to take in another one. There wasn’t a conscious fear of death. More beneath the surface going on. I would hold on, rather than let go. That has been another pattern. Not quite able to surrender to the ebb and flow and natural progression of life. A need to control outcome, which has proven outrageously difficult. We never know what we will face and when we attempt to grab hold and hold on, it is like water that drips through our clenched fingers. It is when we hold experiences in an open, cupped hand and the breath that sustains us in naturally expanding and contracting lungs, then we live full out. I love the word inspire which comes from Middle English enspire, from Old French inspirer, from Latin inspirare ‘breathe or blow into,’ from in- ‘into’ + spirare ‘breathe.’ The word was originally used of a divine or supernatural being, in the sense ‘impart a truth or idea to someone.’

I call myself an ‘inspirista’ and love the idea of being breathed by the Divine.

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Love Is All I Am

Lately, the Muse has been waking me up long around 4 a.m. Not sure why, but when that happens, I know it is important to take dictation. And so I do. A name came through first- Tyler Goldsmith. He is the lead singer for one of my favorite folk/rock groups called Dawes. Then the words “Love is all I am,” followed. Not a new concept to me and I use it often as a reminder of our true identity, beyond appearances of anything remotely different that we might believe about ourselves. There must be some reason, I pondered, that this came through so loud and clear this morning. It kept tumbling through my mind until I walked into the kitchen and through blurred eyes, wrote them on the white board on the wall. Someone needs to see it. I needed to write it.

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Many spiritual traditions teach us that we are sinful, flawed, imperfect. How, I wonder, if we perceive God, by whatever name we invoke Spirit, as perfect and complete, whole and holy loving  and we are made in It’s Image, can we be anything BUT that? A conversation arose this week while I was at ACIM- A Course in Miracles Study Group at my friend Nancy Nagle’s shop called Nangellini that religions tell us we need to jump through hoops, follow teachings, do all of these rituals, say all of these prayers, with the idea of experiencing heaven/redemption ….. what have you and STILL never quite get there. What’s that about?  In my mind, it is about earthly control, not heavenly hosts singing hallelujah. It is fear based and not love infused.

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After easing back to peaceful slumber with that thought as my blanket, I awoke a few hours later, inspired to write this. I listened to the Dawes song by that name and share it with you as a wakeup call to carry you through your day. May we all overcome our spiritual amnesia as we know for certain that love is all we are.

 

“Love Is All I Am”

 

I need a silent, true way to admire,
like you as a sunset and I as a wildfire.
And I can’t let the day go.I’ve locked up these words in fear that I’d say them wrong.
Is it love as a mountain, or love as a simple song?
And the moment that the two meet
has now laid itself at your feet.And love is not convenient.
It does not cease at your command.
You might take and leave it,
but love is all I am.
Love is all I am.

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I need a boundless, soft way to commend,
like you as a temper and I as its tender end.
And however long your fits last,
I will live within your shadow cast.

And love is still your stranger.
It does not respect how much you’ll stand.
You might be love’s reminder,
but love is all I am.
Love is all I am.

I need a graceful, proud way to let go,
to smile and accept the things that you don’t know.
The losses and the gains blurred
the weight of these as last words.

And love is not excitement.
It’s not kissing or holding hands.
I’m not some assignment,
no, love is all I am.
Love is all I am.
Love is all I am.

 

Previous Posts

Sara's Smiles- Lift The Cloud, Inspire The Joy
  The Philadelphia Flower Show is an annual event that heralds the coming of Spring. This Winter weary woman who hadn't attended in decades, was eager to immerse in beauty. Little did I know that it would go far beyond the blossoms and butterflies that lent their color and wonder. I was offe

posted 8:01:28am Mar. 26, 2015 | read full post »

We Never Know Who We Will Touch With Our Words
It is no secret that I am addicted to words. As a career writer, I live and breathe their essence. They delight me to no end. They are the beat of my heart and the blood that flows through my veins. They are a source of emotional, spiritual and physical support. They feed my right livelihood work th

posted 2:31:37pm Mar. 24, 2015 | read full post »

Inhaling and Exhaling
Breathing is necessary in order to sustain our corporeal existence. Inhaling and exhaling, over and over. The average human takes 12 breaths per minute which comes out to 17,280 each day. This doesn't factor in times of exercise. It is something that most people do without even thinking about it, un

posted 9:39:37am Mar. 23, 2015 | read full post »

Love Is All I Am
Lately, the Muse has been waking me up long around 4 a.m. Not sure why, but when that happens, I know it is important to take dictation. And so I do. A name came through first- Tyler Goldsmith. He is the lead singer for one of my favorite folk/rock groups called Dawes. Then the words "Love is all I

posted 8:24:27am Mar. 20, 2015 | read full post »

Leap of Faith in the Face of Doubt
In the past few months, I have become increasingly aware of the power of spiritual practice to keep the rudder on my 'ship of dreams' guiding me steady on, so that I don't run it ashore. Just when I think I can be complacent and  refrain from keeping a watchful eye on the direction it is going, an

posted 10:14:29am Mar. 19, 2015 | read full post »

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