Our Mission

The Calliope Joy Foundation started the way many charities do, with a bake sale. That bake sale has grown into Cal’s Cupcake Challenge with 1000 people, 5000 cupcakes and 45 young, amateur bakers competing for the title of Cal’s Cupcake Champion. Now your gifts to the foundation make it possible for us to provide: travel grants for families seeking life-saving treatments, summer research fellowships for promising college students to work alongside pediatric neurologists, Cal's Care Packages for children facing extended hospitalizations, Cal's Wishes Fund aiding families caring for children in the end of life, and major gifts to the newly established Leukodystrophies Center of Excellence at the Children's Hospital of Philadelphia. No one draws a salary for their work to help children and families through The Calliope Joy Foundation, and so no gift is too small. We remain committed to supporting research, care, and families. In a fast-approaching future, children will be attending school and celebrating birthdays because of what our supporters have made possible. #EatCake & #HelpKids

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    Friday, March 27, 2015

    I feel better

    The moment I realized something had shifted came unexpectedly when one of Cal's hospice nurses, Karen, came to visit last week.  Karen is trained to pay attention to everything, and though she cares lovingly for Cal, she checks up on Pat and me as well. This week, as she walked in the door, she stopped in her tracks and declared:"Maria, you look great." Now, Karen is was being too generous and she is comparing me to her patients and other caretakers and how I have been for the last two years. But, since Karen has seen me at my worst, and she never holds anything back, I was grateful she had noticed.

    You see, a few weeks ago something happened, maybe it was the friend who held no punches about how much weight I have put on or the young man at the store observing me shopping in the Plus size section who muttered on his breathe "cow" as he saw me hold a sweater up to me in the mirror. But, really, I prefer to think as my course change as something far more internal. A few weeks ago I decided to care about myself again. 

    I suddenly enjoy the gym and my trainer, Jeremy, who has worked with me off and on for a year, and most recently, after a bad fall that resulted in a torn ligament has marveled at my change in attitude. He used to remind me to get the gym and forgive all my (very good and legimitate) excuses about why I couldn't work out again.

    Jeremy noticed the shift immediately, he noted my determination and daily appearances at the gym.

    Now, let's not run away with ourselves. I am still huge, I still need plus sizes, but like a slowly deflating balloon, I am shrinking. 

    I am astounded by this and why it is happening now.

    I think that part of it is the dinner and the pressure of having my photo taken, but it is suddenly caring enough about myself. For three years, I didn't care because I felt as though I was dying.

    Turning on this switch to give a shit again has spilled over into other parts of my life. I am little bit more forgiving of my students and colleagues.  There is more calmness and less volatility, and even a touch more patience for the clueless people who don't know how good they have it.

    It is easier to be forgiving and patient (with people including myself) with Cal doing better than I might have hoped for a year ago, but, I think I have figured something out. I figured out how to be sad and not to give up. I have figured out how to be grateful and I have figured out how not to be scared all the time.  I can tell something has come back, or something about me has changed. About a year ago, I sensed that I would be able to endure what lay ahead, and now, three years into the end of my "old life" I have proven to myself that I am just as amazing as people have been telling me I am. And, for the first time in my life, I feel like I deserve the love people give me.  When Cal got sick, I was astounded by her life just became about nothing more than the love she gave and received.  I studied it from a distance and maybe what has changed is that I have finally figured out what Cal has, that all you can do is love and be loved. And for the first time in my life, I have figured something about myself out. 

    Saturday, March 14, 2015

    The loneliest moment

    “The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly.”
    ― F. Scott Fitzgerald, The Great Gatsby

    I came upon this quote in my copy of The Great Gatsby recently. It is a feeling I still remember so clearly from three years ago. And now, I find one of the most meaningful parts of my life is guiding other families as they collide with the news their child has leukodystrophy. I regularly relive this loneliness with strangers as their worlds fall apart. It has taken me years to understand that the cure is so heartbreakingly simple: you just need to show people they are not alone. 

    Life is not measured...








    I am a sucker for an inspirational quote these days, and this one just stuck with me.  It explains our life with Cal.


    Everyday Cal wakes up,  I am overcome with gratitude.

    Cal's life is not what it was supposed to be, and it will be far shorter than we would have hoped, but because of this and so many other truths, my daughter steals my breathe away each day.

    Lately, when people are brave enough to ask how Cal is doing, my response is: "Cal is doing better than we might have expected."

    Most people don't understand what that truly  means, but families who have lived with this illness and the doctors and nurses who care for Cal surely understand. There were times in the last few years we thought we might lose Cal. Her declines were like nose-dives that we would turn out of.

    And yet, here we are with spring coming and Cal's third anniversary of herdiagnosis approaching and she smiles and laughs each day.

    And, with the way Cal has taught me how to be grateful and brave alongside our sadness, the things that take my breathe away increasingly beyond my own family.

    Just yesterday the 7th child we have worked with got admitted to the gene therapy trial in San Rafaelle.  BBC is working on a documentary about the sixth child and his family, and dealing with the sacrifice of an older child to save the younger. This sacrifice is one of the unique cruelties of these diseases.

    Over the last year, every child that has gone to Milan with the Foundation's help has been our investment in a miracle: we care for the Milan families like they are our blood. For each family we send a travel grant of $1000.00 per child and two care packages over the months in the hospital so far away from home.


    When I tell my friends at the Post Office why I am packing up boxes with toys and books headed to Italy, the weary people working there bring extra care and attention to their tasks. After all, everyone wants to be a part of a miracle. 


    The latest child to get admitted is a sort of turning point as well, and her story has taken my breathe way for a different reason. Another MLD family got us in contact us to alert us to a  four year old  newly diagnosed child, and the family wanted our advice about Milan.

    This would be the first time I told a mother about Dr. Biffi and  her team. The doctors working with the family had not heard about Milan and told the parents to take their child home from the hospital since there was no nothing to be done.

    My suggestions must have seemed like a complete shock. I told the mother, "There is no time to waste. While a symptomatic 4 year old would not be a clear cut decision for Dr. Biffi, there was a treatment available. Children who should be in the end stages of the disease were showing no neurological damage. We could not say it was a cure, but it was a chance, a real chance."   I found Dr. Biffi's email and told the mom that I had met the children who had gone to Milan and spoken to doctors who worked with the family, so I could say this for a fact.  I think I even might have written, " if I were you, I would get on the next plane to Italy with your daughter the minute Dr. Biffi agrees to meet with you."
     

      I did not hear from the family for months. Then yesterday,  a note from another family got posted to my Facebook page. I was being thanked for getting the family "in touch with the right people."  The mother would later recall how a phone call changed their life, and it took me a while to realize how I had made this phone call. . When I went through my emails, I could see I had called and given Lindsay all the information I had.  With Bailey I would get to do what I longed to have done for Cal had I had the chance she had now.

     Not long after the conversation I , as it turned out, this family had left Maryland  and returned to Indiana. 
    It seemed that the family had worked to see Dr. Biffi, and after months of waiting and hoping, Ospedale San Rafelle's world renowned gene therapy team invited her for a final evaluation, and on Sunday March 15th, the doctors will start treatment.

     I wrote the mother immediately to tell her about how we would send a travel grant. She was so grateful and surprised by the help we could offer with the care package and money. Things had moved so quickly, she never taken us up on the offer of help from the Foundation. Most newly diagnosed families are like this, they just keep running and hardly even process our offer of assistance until I reach out to them again to tell what we can do.

    I was sitting in the car when I saw the note expressing gratitude for me getting this family "in touch with the right people" and read about how the family had moved back to Indiana when the doctors told them their daughter would die. And now, because of a chain of events, in which Cal played a key role, this family was on a very different journey.

    It took me a while to process how a chance encounter with the grandmother of another MLD family had led them to the Foundation website, me,  and then Dr. Biffi.   Of course, I am not the doctor or a researcher who could win the Nobel prize, I am just a mom who raises money by writing letters and selling cupcakes.

    Regardless, I still found myself crying because I had had the chance to play a small part in this family's chance at a miracle, I could be a part of their hope. 

    The whole story  has demonstrated once again how Cal has made it possible for me to be extraordinary. And, her secret for changing me has been that she takes my breathe away each day she is with us.


    That's a pretty huge thing  for someone as driven and intense for me to figure out.

    And the insight I have now calms me.

     And so, here we are three years after the life I wanted for my family and my daughter was decimated...and in its place is a life that takes my breathe away each and every day.

    And on incredible days like yesterday, I can sit in the car and have a child I have never met take my breathe away because of what my Cal has made possible.
     

    Sunday, March 1, 2015

    Why I love kids so much (now)




    I have a confession to make, until very recently, I was not great with kids.

     My sisters Nicole and Cathy, as my most relentless fact-checkers, would tell you how I was a dreadful big sister, utterly disinterested in my younger siblings, babysitting, and playing with babies. I liked dolls, not the real things.

    When my mother brought home my youngest sister I was 5. I remember stating matter of factly  how Nikki looked like a doll and then leaving the room. You see, Nikki had ruined my Christmas by being born on December 23rd, and so my mother (aka Santa) could not get the presents under the tree in a timely matter: I was annoyed.

    For quite a long time, children were a mystery I was not too interested in solving. Even as a child, I preferred the company of adults. I was one of those people who talked too much and too loudly to children, acting as if the typical three year old was someone I might meet at a cocktail party. Instead of chatting about politics or music, we would debate their views on the Tellytubbies and the significance of that weird, smiling baby.

    When I had my own children, I got better at understanding children and caring for them, but, I was still happy to hand off a baby to my friends or a sitter.

    One day several years ago, a long retired secretary at my office went on and on about how she loved caring for her "grandbabies." Her sixties and seventies would be consumed by the joys of raising children all over again. As a mother of young children,  I was counting down the days until I never had to change a diaper again. In my imagined future, I cast myself as the cool grandmother who travelled and sent funky presents and postcards, I would not be trailing along for every sporting event and birthday party.  A professor friend encouraged me in this view: "you can get back to writing and being a scholar full-time when they get to 4. You will be able to write all the time." And, for a long time, this was something I looked forward to.

    And then, when Cal got sick, all I wanted to do was be around Cal and hold her. I now hated myself for not savoring every moment with my older children when we went to the park or they learned to tie their shoes. I had been so inpatient for potty training and kindergarten to liberate Pat and me. But now MLD had revealed to me the errors of my ways and I was so angry with myself for missing the best parts of parenthood.

     Once I realized MLD could take all the things that I had taken for granted, in a moment, I found myself overwhelmed with the wonder of children.

    Every child, from the one one having a fit in the supermarket or to a  child who was ill in a hospital bed, seemed just so magical and wonderful. I wanted to hug them all, and, when the children saw me, they all laughed and smiled and wanted to play. They seemed to recognize my joy at being in their presence, and, much to my amazement, they responded to it.  Now, I find that holding babies and making them smile, things that I once had so little interest in doing, bring me immense pleasure. I am never frightened or annoyed or overwhelmed by children.

    [Note: this is not to say I am some saint who never gets upset with Camille or PJ, but, it is different now. Cal is about a close to a saint as any human I have ever encountered, so maybe her sweet perfection has just taught me be how to tap into the amazing parts of me.  I might be tired or exhausted or overwhelmed, but, no matter what is going on, I can never forget how my children could be taken from me so it is impossible to take anything for granted. And when you realize how fortunate you are to be telling the 15 year old to do her homework or reminding the 11 year old to practice his viola or stop playing X-Box, you just can't be annoyed or angry the way I once was].


    And after three years of living with Cal's diagnosis, and resisting the idea of being around other children like  Cal, fearing the pain would be too much, I now find that I can't get enough of the children whom I would turn away from in the supermarket or tell my children not to stare at.

    So many people have commented on this photo of Daniel and me, and I am struck by the obvious and rather instant connection.  You see, not very long ago, I would not have been any help to a mom like Susan or me. Not very long ago, I would never have thought of myself as someone who rushes across the room to grab the child and hold them and comfort them and make them smile. I was not the mom who understand how to connect with a child who doesn't speak or smile or laugh. 

    I might have been a mother but I was not really maternal, I loved my own children but the rest of the world's children were not my concern.

    And so, I am just amazed how much Cal has changed me.


    Sunday, February 15, 2015

    Letting myself go



    The author's photo taken for my book dust jacket. (2008)
                                           

     When you find out your child is sick and will die, you must go crazy. As a sociologist, I have taken to studying the madness grief brings.  There is no singular form of it, some people cry, others vomit or lose control over their body functions (you might actually pee, or worse, in your pants), some stop eating, others eat constantly. Some wail and cry all the time, others barely speak and hardly shed a tear.  More than a few try to run away from the horror show, thus the 80 percent divorce rate among married couples who lose children.

    You get the idea.


    Once, I had judged those people who lost their minds as weak.  After Cal got sick, the shattered were the only sorts of people I understood.

    The fact that I would lose Cal meant I would never fit in again, and, as a result, a liberating lunacy descended.  Charles Dicken's Miss Havishem sitting in the ruins of the her life wearing a wedding  was no longer a literary device, but a lifestyle choice.

    My husband Pat took in my breakdown with a silent stoicism. He knew there was only futility in trying to prevent it, so, God help him, he let it follow its course.

    In this mix of resignation and choking despair, I found myself studying the ladies you see in the market, the ones with their blush put on like a child's red crayon scribblings, the ones who smell funny and dress in wool sweaters during August.  I kept my own inner-bag lady in check because of my children, but she was always there.

    I took valium and anti-depressants to tell myself I was doing something to stave off the crazy. All the pills did was smooth out the jaggedness. On the good days, I am just not so acutely aware of my anguish. Walling  off the worst of my agony meant I managed to drag myself into the shower most days of the week to avoid smelling too bad and forced myself into the office for work. I would actually tell myself, "you should not wear pajamas to Wawa at midnight to get donuts because you are letting the inner-bag lady show too much." I cared enough not to seem too crazy and broken, that's hardly the same thing as being okay. Most days, appearing okay is a self-conscious performance for the benefit of others who find it too hard to face the real me. 

    A few friends waded into the swamp with me, but even the most courageous could not stay too long. Who could blame them? If I could have never had this happen I would save myself and never think about leukodystropy  and CHOP and hospice ever again.

    For me, insanity was letting myself go, and just not caring anymore. Besides the manic plans and letters to the Duchess of Cambridge, there was the eating. 

    I have not been trim since my college days. When I fell in love I stopped eating, but even though I stayed in love the eating like a bird didn't last. After Pat and I married, the life of a graduate student was so sedentary and it was fun and easy to cook and eat. I gained weight for my three pregnancies that I never bothered to lose. I had enough confidence in myself not to care about such standards of beauty. I would laugh at the women who starved themselves to be impossibly thin. Here among the yoga pant- clad Main Line moms, I  stood out with my size 16 self.  

    But after Cal's diagnosis, it was different. 

    It was not binge eating so much as a lifestyle without structure or order when it came to the consumption of food or drink. If I wanted a donut or a cupcake, I never denied myself. When I couldn't sleep at 3 in the morning, I would eat something that made me feel better. I found myself indulging in my favorite cravings from pregnancy: bowls of cereal, toast and peanut butter, cheese and crackers...But I ate at all times of the day without any thought to the consequences.

    Before, even though I was overweight,  with make up and a stylish outfit I looked and felt pretty from time to time. People would say I looked nice  and I could believe their compliments. After Cal got sick, it was impossible to be pretty.

     Even my internist,  Dr. Kearney (a mother of four who could probably fit into her high school prom dress),  who once joked that a woman with my intelligence surely knew there were no fat old people, ceased her scolding about heart disease and diabetes after Cal's diagnosis. As far as my doctors were concerned, the fact that I was still standing was a medical miracle and no would deny a woman like me whatever solace I could find. It seemed cruel to suggest I join Weight Watchers.


    But, three years in, I find want to reclaim my old self.

    I look at the photos of myself and am horrified at how the pain and grief seems to seep out of my pores and just lingers in my eyes.  Now, I long for someone to say I look nice and for it to be true. I hit a bottom (not the bottom just a valley) a few months ago when I threw out all my clothes. I have taken to wearing a uniform of my late father's sweater, a rotation of three pairs of fat pants that don't pinch too much,  and the Ugg boots that I wore when I was pregnant with Cal. 

    It was my equivalent of the black dress my Greek grandmother wore every day for the rest of her life after her husband had died. 

    And yet, without any explanation, vanity started trickling back.  I started to notice if I wore the same sweater and pants two days in a row when I taught my classes.  I went to the hair dresser to take care of my roots and even returned to the cosmetic counter to save my skin from the worst of three years of neglect from not using a moisturizer or sunscreen.  I went back to the gym and resumed a modest routine. 

    Then, about a week ago, I started to be rather choosy about what I ate, and thing that made me tackle food was the dinner with the Kellys. Jill Kelly is one of those beautiful women who even managed to look lovely and stay trim when she was living in a hospital when her husband underwent radiation.  Jill Kelly's  genetic good fortune and the resources of an above average income surely helped, but, I told myself that if Jill Kelly could be pretty, I could do.

    So, I stopped eating the junk food and drinking the wine.  There has been no dramatic change, it's just a different direction. There are bad days when I want to get that food to feel better, but, overall something has changed and I can make myself feel better without the antidepressants, valium and it is a just bit easier to say no to the donuts.

    A friend asked me what was different, I said I had gotten used to the grief. He suggested a different explanation, as he took note of me eating a veggie burger on salad greens instead of my usual cheeseburger with sweet potato fries, "Have you considered that maybe you have just figured out how to be grateful about what is possible and seeing how well Pat is doing well and that Cal is okay and comfortable. Maybe you are just spending less time being afraid?"

    "Yes, I have just gotten used to it." I said  again.

    "No, I hope you don't get used to this. It's something else." My friend insisted.

    "More managed, maybe. Is that the right word?" I said, poking at my salad.

    "That's better," my friend said, "managed."

    As I thought more about it, that wasn't it either, as I kept searching for the right way to explain it. 

    I think the person I was before Cal got sick isn't totally gone, there is enough of the woman I was who is still there, and, to my great amazement, she is trying to come back.




    Friday, January 30, 2015

    The amazing true story of the cupcake quilt

    by Pamela Boatright at Pamelaquilts.

    Every quilt I make  has some kind of a story. Some of the stories are simple - I loved the fabric and wanted to make something out of it.  Some of the stories are more intricate, and reach beyond my sewing room into another person's story.  This is one of those quilts: It's not a complicated quilt, but it is a quilt that is a masterpiece to those it touches. It is a happy and colorful quilt that was created by a community- my skills were simply those that that brought it all together in the end. All the beauty of this quilt is from the people who contributed their love. 

    Taken separately, each square is lovely in itself.  But all together it is more.  It speaks of joy, of love, of community.  Read here to see what 5000 cupcakes, 1000 people and One Cause look like.  And read here to see What Cupcakes Can Do.  You can see that every small donation matters, because it all adds up to something more.  We can help.  I hope that some of you will choose to make a donation to this cause, because it can make such a big difference in what the future holds for children with these neurological diseases.  

    I started on the path to making this quilt earlier this summer.  I got a custom request in my Etsy shop from a mom who wanted a quilt and a couple of pillowcases made for her daughter.  It would be used on a hospital bed for her little girl who was on hospice care.  
    My heart hurt when I read that and I just had to take on the request - Maria (the mom) had some cute fabric picked out with cupcakes, so I ordered it and got the project finished for her as quickly as I could.  I didn't want to be nosy and ask for the whole story about her daughter, so I just made the quilt as requested, and when she asked if I could donate a baby quilt for the fundraiser she was planning I was happy to use the leftover fabric to do that for her.


    Then, Maria came up with the idea of sending fabric squares to be colored, then sewn together for another quilt.  It sounded like a great idea, so I jumped on board with the plan and cut out 100 squares to be used for the project.  I still didn't really know the whole story about Maria's daughter, but I know I was doing something to help and it felt really good to be a part of that.


    After the fundraiser, the colored squares came back to me to be sewn together.  Her friend Julia also sent me the logo for their foundations and asked if I could add that to the quilt.  This was when  I learned about the Calliope Joy Foundation.  I read about a family that has seen more heartbreak than I can fathom.  About a sweet little girl that is so loved by her family and community.  About a mom that is dealing with something that most of us cannot imagine and is finding the strength to not only go on each day, but is also determined to do something to help other families and children.



    As I cut all the sashing and sewed the squares together I smiled as I saw each block.  How carefully the children colored and printed their names.  The bright and colorful colors are so happy, this quilt cannot help but make you smile when you look at it.  I added a few pictures of Cal and her beautiful smile as well - because this quilt really is all about her!


    I am so glad I had the opportunity to work with Maria, to help bring some joy and beauty into her family's life.  Quilts can be such a comfort, and that's just one of the reasons that I love creating them!

    Tuesday, January 27, 2015