Calliope Joy Carr, age 2, August 2012, on the family's Make -A-Wish vacation to The Winnetu Resort in Martha's Vineyard. Photo by Audrey Le Tesson.
Because of the passage of Pennsylvania's Hannah's Law and New Jersey's Emma's Law, doctors will be able to save the lives of 66 children born each year with globoid cell leukodystrophy, or Krabbe disease.
With your help, doctors have the ability not simply to cure the disease, but to
ensure these children never become ill. Finding children before they lose the ability to swallow, walk, smile, breathe, and feed themselves is critical for treatment since once symptoms develop there is no way to reverse the damage to the brain.
The Calliope Joy Foundation is helping our partners at The Children's Hospital of Philadelphia become a national leader in the treatment of orphaned neuruological diseases like leukodystrophy. In 10 years, hundreds of children will be in school and celebrating birthdays
because of what we made possible today.
Help us give children their childhoods and
change the world with cupcakes.
#EatCake & #HelpKids
Monday, November 10, 2014
Helped a family get a specially adapted van.
Shipped care packages to children all over the planet.
Provided funds for a family to renovate their home to care for a child with leukodystrophy.
Established the Cal's Wishes Fund at the Kind Pediatric Hospice Unit (one of five children's hospice units in the nation).
Made gifts to extraordinary families to help make birthdays extra special.
Established a research fund at the Children's Hospital of Philadelphia to identify unspecified leukodystrophy cases in 62 children.
Funded a summer fellowship for a student to work at the Children's Hospital of Philadelphia with researchers and clinicians in neurology.
Supported CHOP's Pediatric Advanced Care Team who care for medically fragile, neurological patients.
Worked with our partners at The Children's Hospital of Philadelphia to build a Leukodystrophy Group to care for children identified through newborn screening with globoid cell leukodystrophy.
#EatCake and #HelpKids
Cupcakes can change the world....just watch what you help us do next.
Thursday, November 6, 2014
Wednesday, November 5, 2014
The old me, as a scholar and an intellectual, could appreciate the clear-headed and reasoned arguments made by right to die advocates.
But, in this matter, my view does not come from religion or abstract theory or even sociology, I am the mother of a dying child, and all I feel is despair over Brittany Maynard's choice.
Don't get me wrong, there is good reason to fear death and dying, the vast majority of us should contemplate "the great silence" more than we do. Humanity would be in better shape if we did. But, it seems that the Maynard debate confuses our fear of death with the fear of dying. Dying requires pain (but lots of things do, like childbirth and love) and death is something beyond this world.
Most of us (believer or non) view death as absolute stillness, and quite possibly nothing and everything all rolled into one.
And, my anger comes from a nagging question: I can't help but wonder what Brittany Maynard would have thought if she had spent a day with Cal and me.
Brittany Maynard feared pain, losing control over her faculties, body functions, the ability to move and speak, all these things were lost to Cal years ago.
Even now, as it requires three adults (one nurse, Stephanie and I) getting Cal dressed, carrying her limp body downstairs, Cal has pain and discomfort because of the nerve damage and muscle atrophy when we touch her. And yet, even though there is pain and suffering required for getting her positioned in an specially adapted stroller so she can go to her big brother's Halloween parade: there is still joy.
So what would Brittany have made of this spectacle, would she say Cal is not dying with dignity?
Please understand, as terrible as an inoperable brain tumor is, as frightening as sickness and pain were for Brittany Maynard and all of us, on the day she drank the barbiturates Brittany could still eat and kiss her husband and sit in the living room and laugh at a movie on TV. There was so much life left.
And yet, at my house, we work so hard each and every day for the smallest signs that Cal is comfortable and happy. We are overjoyed if she tolerates her feed, moves her bowels, empties her bladder and laughs in recognition at the sight of her sister or brother.
I would give up a limb to watch my daughter enjoy a piece of birthday cake, swim in the ocean, or just be able to wear a pair of shoes (since her muscles are so stiff shoes fall off) and go out to church wearing the beautiful dresses I loved picking out at the store for her.
It pains me that Brittany's fear of death blinded her to the joy of living, the meaning of life, and the fact that love and connection could never be destroyed by a glioblastoma. It wounds and saddens me, that Brittany could not see the value in the life my daughter has.
I am offended that Brittany chose to leave before things got hard, and that this choice is applauded as brave.
My daughter is brave, and my children and husband are brave to face every day and seek out the meaning in Cal's life even as this disease steals more and more from all of us each day.
Cal's nurses and aides are brave because they care for and love Cal in the face of a disease so determined to take everything.
When Cal was diagnosed, I refused to succumb to the idea that giving up and curling into a ball and embracing the great silence were my best options.
The wisest words anyone has ever said to me in all in this ordeal came from Father Peter Clark, a Jesuit, who spends his time working with the doctors and families in the St. Christopher's NICU, trying to help medical teams and families figure out when it is time to let go. Father Peter explained after Callie's diagnosis, "I promise you if you have the courage to be present with children like your daughter, they will reveal to you the meaning of life."
I am so very sorry that Brittany could not understand what my 4 year old daughter seems to grasp so purely, the beauty of being in the world, surrounded by people who love her and the transcendent power of giving back only love.
So many of us weep for Brittany because she underestimated joy and love's power to defeat everything.
And I wish she had met my Cal...maybe Cal could have shown her a way to go on...
Sunday, November 2, 2014
Technology now allows us, with the 20/20 clarity of hindsight, to time travel, at will, to the precise moment we recorded with a photograph. The thoughts, feelings, and whimsy of the moment can be pulled up instantly. But I have noticed how mothers like me torture themselves with Timehop on the leukodystrophy social media traffic,
I have my own Timehop.
As a rule, I steer clear of revisiting what was.My survival depends on not thinking of what might have been for Cal and mourning my fantasy. And, if you visit our home, there are precious few relics from our old life. Over a period of several months we have removed all the toys we used to play with. The most significant image of Cal is the painting Perky Edgerton painted that July I met Amy Waldman. I prefer to think of July 5th as the day my life collided with Amy Waldman's rather than to revisit why Dr. Waldman and I had to meet.
As I was planning the fundraiser with Jim Kelly, I was thinking how powerful the juxtaposition of those photos could be. When confronted with the photographic evidence of how Cal was and what MLD has done, it seems to be that most human beings would find it impossible not to write a check to eradicate this disease from the planet. We would not need to host a fundraiser at all, just get powerful and influential people in a room and s torture them with photos recording what leukodystrophy had stolen.
But, I must confess, there is one simgular photo that is tucked away on our fridge that represents all that we lost.
At our house, the fridge is covered with school notes and the magnet collection we started in grad school. We have magnets from every state or city we traveled to, but Pat and I rarely make these trips for work. So the newer magnets include phone numbers to call in case Pat's home infusion goes wrong or if we need hospice to come over. Our fridge is a collection of our life's memories, as precious as any photo album, my personality has never been one to organize scrap books, I have always had a hoarder documentarian's aesthetic.
Anyway, on the corner of the fridge you will find my most cherished photo of the family. It is a perfect moment, its perfection resides in the fact that I had no idea this was a pivotal moment. I can recall, with distinct clarity the first time I saw the photo, I liked it, but I remember being self-conscious about my appearance and arrogant enough to assume this would be one of many photos of Cal celebrating a long line of happy moments.
We were dressed up to celebrate PJ's kindergarten graduation. PJ had gone to the barber with his father. My Camille is so stunning and still a kid, just a year away from having her father's cancer diagnosis end her childhood so prematurely.
There is Cal, about 6 months old and still nursing and so chubby and smiling. PJ is a beaming big brother who loves to show off his baby sister to his classmates, and no one makes Callie happier than PJ.
and pushing Pat to give me the money to remodel the kitchen.
I had just gotten a promotion at work, and I was pretty insufferable: three kids and 3 books in 10 years at Saint Joseph's. I would complain about not having enough time for myself and feeling trapped by the time required to care for three perfect, healthy children. I got to be annoyed because my in-laws will be with us for two weeks for a visit. It is hard to remember how I could manage so much clurlessness about my marvelous life.
The photo is now so remarkable because it is proof we used to be so unremarkable.
Now I look at the photo, and I seem so unburdened, so carefree and pretty. Yes, there is a pretty photo of me. Women with dying children are not pretty, the horror of our lives alters our DNA, and we get these sunken eyes, dark circles , and this look of pain that never leaves....and what was a really bad day in our lives before illness and grief would become an unimaginable level comfort for our current life trajectory. We are always weary, and no matter what we do, nothing gets better.
I look at this photo and now see it for a perfect moment of exquisite happiness, I had no idea what was coming and didn't have the good sense to be grateful for my wonderful life. And so I let myself see this photo each day, just for a moment, to remember I am not allowed to complain about my life since it once was more than I deserved.
Monday, October 27, 2014
I am breaking a rule and writing about Pat and his family, but, since I cannot be at the wake or the funeral, here are my Olive recollections. But, I hope I get a pass from the Carrs since I have just come to realize Pat was right and I was wrong.
My mother-in-law, Pat's mother, died last night. Pat had rushed home to be with her when a recent doctor's visit had revealed total kidney failure. She had been unwell for months, there was a bout with a respiratory illness that had left her homebound earlier this year.
Olive had always been a sort of charming hypochondriac, regularly updating a "how are you?" with a detailed list of aches and pains. And, Pat knew something was wrong when he would call lately and she would say she was fine and sort of trail off.
His instincts were right, the doctors would confirm how gravely ill she was a few days ago. So the trip to Ireland that was planned for December got moved up to this week. Pat hated leaving the children for Halloween, his birthday, and PJ's big basketball game, but, he had to go home. Pat wondered if he should pack his suit, the suit he had worn to his father's funeral. I nodded, hoping he would get Olive stabilized and be home in a few days. Neither of us believed it. Kidney failure is something people don't bounce back from....I live with nurses and that's how my dad died, it was just like last year with Dad all over again..
So Pat packed his bags and left. He told the children his mother was sick, but not that she was close to death. He couldn't tell them about my father-in-law or my father, the same would be true with Olive.
Pat was a devoted son, and Olive was an Irish mother. Pat was the prince and his crown came with burdens only sons of beautiful women demand.
Olive was stunning, and even until the very end, she got her hair done. She stopped eating and walking but her stylist came each week. My favorite photo of her is in my house, she is holding a two year old Pat's hand in the garden of their house at Peter Street. She looked like one of those sixties starlets with her hair in a twist and wearing a shift dress. She was a young mother with two children, but, even with the hard times of Ireland in the 60s, she stood out, you could see why Paddy had fallen in love with her. Her face was perfectly symmetrical and her eyes smiled in spite of the lingering sadness, like so many women of her time, she carried the pain of the child she had lost (a little girl who died from spina bifida) but since it was unseemly to speak of such matters, she mentioned this child only once to me.
In another time , I don't know if she would been a housewife. I think her temperament was more of a career woman. She loved clothes and jewelry and was always drawn to just a touch of sparkle and flash. When she picked out PJ's christening gown, I had assumed a linen cotton outfit would arrive in the mail, much to my surprise, she had selected a satin unitard with a surprising amount of embroidery.
My favorite Olive story is about the day Pat and I went to Drogheda to tell his parents we were getting married. Pat and I had a huge fight on the day we were set to fly out of Boston because I was wearing this loose, empire waist dress and Pat said I shouldn't wear it because the cut of the dress made me look like I might be in the early months of pregnancy. I burst into tears and was not sure whether I was upset because he thought I looked pregnant or that he believed his parents might think Pat had to get married. Then, my father, came in, upon hearing the argument, and sided with Pat saying "well, that dress does make you look pregnant."
My mother kicked Dad out and I did change the dress, I am sorry to say. I was too young to appreciate how much fun it would have been to get the rumors started in Drogheda. How the tongues would have wagged.
But, anyway, we arrived in Ireland, I was so young I didn't really understand what a big deal this was, to go to another country and meet a family and then announce an engagement. It was hardly surprising Pat, who fell in love with America as much as he did with me, would follow the great migration of Ireland's young and educated to America and England.
But, marrying me meant his life in States was not a youthful adventure that would come to an end after graduate school.
So, Pat took me into the kitchen where his mother was doing her morning routine of peeling the potatoes for dinner. Back in the Ireland of the 1990s, Paddy and Olive ate potatoes everyday, the only reprieve might be a meal of smoked salmon and with sliced brown bread. But otherwise, there was never rice or pasta, always spuds covered in butter or that dreadful margarine that we all pretended was healthy until the world learned the ugly truth about trans fats.
And hand peeling spuds on a cold Irish morning and is an unpleasant task, and Olive did it in such a way that I nicknamed her food preparation style: rage cooking. She would stand over the sink, her cigarette trailing ash as she peeled dozens of potatoes. Her hands were stiff and bloodless from the water and the damp Irish air, even in June. And, Olive was not a big eater, so all this food was for everyone else. If the Greeks and West Indians view food as a stand-in for love and a source of their matriarchal authority in a family, for the Irish, especially Irish woman of my mother-in-law's generation, it was a symbol of the burden of a world that gave women more obligations than opportunity.
So, Olive, stood over the kitchen sink peeling potatoes and Pat took a deep breathe and said, "I have something to tell you....[pause for effect and to give himself the energy to get the words out]...Maria and I are getting married."
Looking back, I was too clueless to understand what these words meant....why Pat was so anxious. And what happened next counts as my favorite Olive story.
In my house, as the oldest daughter who had not dated and who had seemed on track for a fulfilling single life as a college professor without kids (minus the cats since I hate cats), the news of my engagement was met with unabashed relief from my father who loved Wellesley College but worried how this expensive education might have made his eldest daughter unmarriageable.
Keep in mind, my sisters were engaged at age 20, and I was 25 when Pat and I met.
But anyway, when Olive heard the news, she swooned and collapsed in a chair. Somehow, and maybe this is my memory playing tricks on me, but the cigarette stayed dangling all the way through the move from the sink to the kitchen table across the room, even as one arm grabbed a chair and another arm fell across her chest. Olive managed to pull it off with a grace and style that made me think she had used this choreography before.
The message was loud and clear: Pat marrying me was going to kill her.
Olive had the heart and soul of an performer, or at least, one of those beautiful women who could make things happen just the way she wanted without ever saying a word. It was a power I admired and dreaded.
There were moments Olive would express her displeasure with minor things, but no huge blow-outs. Olive was more subtle, I understood that she needed her son and on what came to be known as "The Paddy and Olive tours of America" when they would visit us, I let her have her son back. Pat would fuss about his parents, make sure they had their cigarettes and an evening at a nice pub. I thought it was very Irish for Irish tourists to visit America and recreate Ireland somewhere else, and it was easy to do this in Philadelphia and Chicago.
When Camille was born, and then PJ, and both children loved Ireland and their grandparents so very much, Olive was overjoyed. I might have been the American interloper, but my children, her grandchildren, were beautiful and tied to Ireland and the family. She had won them over with magical Ireland and crisps and all the Cadbury chocolates she hid in her pantry. Olive had fallen in love with the chubby Carr babies the moment they showed up at the house, they might live in America, but they fit in just fine in Drogheda. Cal was the only one not to make the trip to Ireland and stand on the beach where Pat had spent so much time as a boy. I often wonder if failing to bring Callie to Ireland meant she was not protected by the 500 years of the Carrs in Drogheda. Did I mention Pat was the first Carr to leave Drogheda?
All was well until Pat got the chance to go back to Dublin to be the Chair of the Sociology Department at the University College Dublin. The job would bring Pat home and provide Olive with endless bragging rights about her brilliant son and the impressive post. But, as a dual career couple, moving to Ireland was good for Pat but it was professional suicide for me. Pat had a great job at Rutgers, and the job at Dublin was a step down for me, I would be a trailing spouse with no job security. Ireland was expensive and we struggled to find a school for the kids. The only thing good things about Ireland was the stuff that would happen for Pat and his career, for the rest of the family, it would mean painful readjustment and struggle. So, I pulled the plug and made the call not to move.
In the long run, this choice was right. The Irish university system would go into a free-fall with the economic crises in Europe, Pat would have gotten a paycut and they would have terminated my contract. Without an EU passport, an American who writes books about America would have been unemployable. But, more than that, the long waits and cutbacks in the medical system there meant that Pat's cancer probably would not have been treated as quickly, or as successfully as it was at Abramson. It took months for the doctors to confirm my father-in-law's cancer, and if Pat had spent weeks waiting to see specialists, he might not have survived, or at the very least, he would have ended up on dialysis.
Pat begged me not to tell Olive about the job in Dublin. But, I liked Olive too much to keep such a secret. It had been a long time since the Marlene Dietrich scene in the kitchen, two grandchildren would purchase good will.
Surely she would understand. But, for Olive, not going to Ireland was a betrayal. I had broken our arrangement over how we shared Pat. She never spoke of the matter, but she was more distant and Pat took to visiting Ireland with the children and without me for the years that followed.
My first real and sustained anger with Olive came when Pat refused to tell her about his cancer, and then, Cal's diagnosis.
It made no sense to me that he could hide such huge parts of his life from his mother. The first thing I had done was call my parents with Pat's diagnosis and then Cal's. I was not sure they could do anything to help, and my parents didn't exactly rush to the hospital, they could not face Cal's illness. Daddy and Mom came down to help me when Pat got sick, but for Cal, they stayed away. Dad's cancer had progressed, but, more than that, Daddy couldn't face Cal's disease and mom was trapped between her dying husband with cancer and a granddaughter with a terminal illness. In fact, Daddy never saw Cal after her diagnosis. It is something that haunted him in his death and the only moment in my life where my Dad let me down. I can forgive and understand why it happened, but, God help him, he was not there.
But, I thought it was unfair for Pat never to give his mother the chance to take care of him with his cancer and share the sadness of Cal. I still don't fully understand why he didn't tell his mother, but given how my father dealt with Cal's illness, I now wonder if I made the right decision. Pat's willingness to shield his mother made things harder for him but safer for Olive. My point was that not that Olive would make things better, but that she had a right to know.
But there will be a cost to paid for this decision he made three years ago. And now I fear Pat's grief over his mother will be much rockier. He cannot say goodbye with the knowledge that there was nothing left to unsaid between them. My father disappointed me one time when he did not come to see Cal after she got sick. But, then again, as my father was dying he had visions of Cal as an angel who was waiting to take him to the other side. The dreams he shared with me about Calliope were his reconciliation with me and him asking for our forgiveness.
But, as Pat mourns the beautiful and complicated woman who was his mother, I try to console him with the fact that Olive knew he was the most devoted son, a son who took care of her until the very end. Even if he could not say goodbye to her yesterday, the truth is now out. The fact is Olive finally understands all the pain and love Pat must carry forever because he longed to protect her.
Olive was keenly aware of how pain and love were inextricably linked.
I might be Pat's wife, but Olive was his mother, and me marrying him never diminished his love for her in the way she had always feared.
So, yesterday, PJ cried and begged for me to take him to Ireland so he could tell his Granny how much he loved her. And in the lovely Camille, Olive has a beautiful young woman, who understands the pain and suffering love requires...has just a perfect amount of the complexity and drama from Olive that will live on.
And now that Olive is gone, and Pat protected her from the knowledge of his cancer and Cal's illness, it feels right to let her go without knowing the pain of it. It was a kindness and gift I could not give my own father, and, it seems to me, Pat understood his mother better than I understood my father. And, God help me, but Pat was right and I was wrong. I wish I could have saved my father from the anguish of it all.
Friday, October 24, 2014
For me grief feels like being possessed, an out of body experience that makes me wonder if all of it is a dream. So, this conversation was quite helpful. On April 9th and 10th the Leukodystrophy Alliance will come to CHOP to evaluate what the medical teams can provide to the care of children with leukodystrophies....from palliative care, integrated care, and gene therapy perspectives. In all the excitement over Hannah and Emma's Laws, I think I needed to remember that these treatments are still only successful rarely, and that most of the children will not improve and some will die faster because of complications from the procedure.
I am somewhat ashamed of myself for getting swept up in the intoxicating belief in miracles. I should know better.
Our little Foundation now sends families to Italy and we send care packages to families when families lose a child or are having a tough time. There is so much need, and it felt good to run away with Amy Waldman's enthusiasm because of newborn screening. It is astounding to consider some children might be saved after decades of no hope or no options. But, it will take years before the new gene therapy treatments in Leukodystophies become available in the US and many children will die between now and then. I think the thing that has thrown me off kilter is to see the children Milan has helped. No one is saying they are cured, but, when I look at what Leukodystrophy has done to Cal and I see children who can open birthday presents and go to school, it is not a sense of guilt, but a belief that Cal's life has to mean something that consumes me. I want to believe I am supposed to do something to harness Cal's suffering and accomplish something. It is the only thing that makes me not check into a hospital and check out completely. I hear stories of the mothers who just go to bed and cry and give up, and I am frightened for them but then I wonder if I have ever given myself a chance to really feel what is happening. Maybe I have chosen the wrong path. Maybe going to bed and crying all day is healthier, or more realistic, than this superhuman mom trying to change the world path.
So, anyway, the great news is that Cal is much better, though, we can't get her up to the number of feedings she had before the tube fell out. But, her energy is good and she is doing better than she was at the Challenge. I fell down on Tuesday in an effort to start walking to work to get some exercise in and I tripped on some uneven pavement and because of the way I fell, tore a ligament. Being at home all week keeps me alone with my thoughts a bit too much. Then, we just got word that my mother-in-law is in kidney failure and she is not expected to live very much longer. So, Pat is heading off to Ireland, missing and
his three month follow up Abramson for his multiple myeloma, and helping his mom after spending all week bathing and caring for Cal on his own since I can't hold Cal with my ankle all messed up from my unsuccessful attempts at exercising.
It's been another crappy sort of week, and maybe I have no business planning fundraisers with Hunter's Hope, but, between holding Cal and crying and worrying about Pat's check ups and making sure my older children are as okay as they can be....a fundraiser with one of the greatest football players of the last three decades who wants to help kids like Cal ain't a bad way to get through the day. Or, that's what I keep telling myself.
Epilogue: So here I am, freaking out, trying to figure out what the right thing to do is. And then, Vicki posts her speech in Harrisburg the day they signed Hannah's Law. Hope is not rationale, it is reckless and dangerous, but, this is all we have. And the alternative makes life unbearable...
This is Hannah's mom, Vicki.....