Maria Kefalas

@maria-kefalas | contributor
Maria Kefalas lives in Bala Cynwyd, Pennsylvania, and blogs at Excruciating Joy under the name The Recovering Supermom. Her essays have appeared in The Huffington Post, Slate, STAT, The Root, The Washington Post and The NY Times’ Motherlode. Beacon Press is publishing her memoir about being Cal’s mom. She is a professor at Saint Joseph's University and is the founder of the Calliope Joy Foundation.
Maria Kefalas

Why I'm Inviting Members of Congress to Meet My Daughter

Caring for my terminally-ill daughter Cal has made me wiser, braver and kinder than I ever imagined possible. So, two weeks ago, as Cal lay in a hospital bed at the Children’s Hospital of Philadelphia, I wrote a letter to my members of Congress. I invited my senators and congressman to come and spend time with Cal at our home to meet the doctors, nurses and aides who care for her with such devotion. You see, I believe that if powerful and influential people come and spend time with my daughter, they could learn so much. An Invitation for Members of Congress to Meet My Daughter In 2012, I went from being a soccer mom with a minivan to a recipient of public assistance. The fact that my husband and I held advanced degrees, earned salaries that placed us in the top 10 percent of the income distribution and had good insurance benefits from our jobs did not matter when our youngest child was diagnosed with a devastating neurological disorder. A medical catastrophe resulted in us becoming one of the millions of Americans who benefit from Medicaid and the Affordable Care Act (ACA). As a scholar and professor who had written about poverty and inequality in America over two decades, I never imagined that I would join the ranks of the families I studied. Everything changed on June 28, 2012, the day my youngest child, Calliope — “Cal” — was diagnosed with late-infantile onset metachromatic leukodystrophy (MLD) at age 2. MLD (similar to Tay-Sachs disease) is a degenerative neurological disorder. My daughter no longer had the ability to walk, talk and eat within three months of her diagnosis. Cal was not expected to live beyond the age of 6. One in 100,000 newborns is diagnosed with Cal’s disease. But even though our daughter’s condition is ultra-rare, the economic situation our family found itself in is hardly unique. More than 25 million Americans are affected by almost 7,000 rare diseases. In 2012, there was no treatment for MLD. The only thing the doctors could do for us was arrange for a Make A Wish vacation and enroll our family in Medicaid. I asked the hospital social worker, “Why would we need Medicaid?” She explained, “Medicaid provides supplementary insurance to cover expenses your insurance plan won’t.” It’s been five years and Cal just celebrated her 7th birthday; I am indebted to the American taxpayers for what they have made possible for our family. My husband and I did not have to sell our home or quit our jobs or cash out our 401Ks. We also benefit from the ACA’s concurrent care provision for terminally-ill pediatric patients. Unlike adult hospice patients who must choose between hospitalizations and hospice care, Cal can seek treatment from a specialist and, simultaneously, receive home-based hospice care. Cal’s doctors and nurses coordinate with her hospice team to oversee her care and treatment. Working together, Cal’s doctors and hospice team manage her dozen medications and work to avoid costly emergency room visits and hospital stays. Cal has not been admitted to the ICU in two years. There is no question that Medicaid and ACA have saved Cal’s life and our family from economic and emotional ruin. I am writing to invite any member of Congress to our home to spend time with Cal. You can meet the neurologist who treats hundreds of children like Cal and the aides earning $15 an hour who care for a terminally-ill child with a devotion that will leave you speechless. When you spend time with our family, I believe you will understand how the policies you debate on the House and Senate floors matter to children like Cal. I believe you will see the immense good the government programs at the center of national debate can do. And I believe you might gain the wisdom and grace you need to act in ways that serve the American people. Cal with her parents Maria and Patrick. Photo appears courtesy of photographer Ed Hille. We want to hear your story. Become a Mighty contributor here .

Maria Kefalas

Finding Treatment for Your Child With Metachromatic Leukodystrophy

Cal. Three years have passed since I published “Mothering Cal” in Slate, just before Mother’s Day 2013. It had been 11 months since my daughter Cal was diagnosed with leukodystrophy, a fatal degenerative brain disease. Cal is named after the muse Calliope, the goddess of music whose divine power is to inspire beauty in the world. The last time Cal would sing for me would be in the hospital, two days before a brain MRI revealed Cal had metachromatic leukodystrophy, or MLD. It is one of 50 forms of leukodystrophy affecting 1 in 5,000 people (making it more common than ALS, the neurological disease that inspired the 2014 ice bucket challenge). MLD is a diagnosis so grim that back then, all the neurologist at the Children’s Hospital of Philadelphia could do for us was arrange for a Make-a-Wish vacation. MLD would rob Cal of the ability to speak, walk, and eat within three months. This monstrous disease is caused by a faulty gene that controls a protein needed to keep our nerves intact. The disruption leads to a breakdown in communication between the nervous system and the brain. Cal was 2 when she was diagnosed; the genetic counselor working with us told us that most children with this form of the disease do not live more than four years after the symptoms start to show. It would take me years to understand that grief is a metamorphosis: The pain must change you. Cal is now 6 years old. We are in overtime with this disease. In that first year after Cal’s diagnosis, the madness of grief consumed me. There was nothing anyone could do or say to “make it better,” so all the people who loved me could do was witness a series of miniature nervous breakdowns that ranged from the heartbreaking (fits of crying so intense they made me choke and vomit) to the absurd (writing letters to Adam Sandler asking him to sing a song he performed on “Sesame Street” for Cal’s fourth birthday). It would take me years to understand that grief is a metamorphosis: The pain must change you. There is no way to escape losing a sense of who you once were. And after a year (or two), you wake up from this transformation and realize that you were not actually dying; you just felt like you were. And then you must make a choice. One option: You can give into the horror of it all and retire to bed. No one would blame you; it is a tempting alternative that lurks at the back of my brain from time to time even now. The other option is that you take the pain and harness it to do things you could not imagine ever possessing the strength to accomplish. Being around children like my daughter will teach you the very meaning of life. The first thing Cal showed me was there was no time to mourn the life we had expected. My children, husband, and I have a form of amnesia about our old life, when Cal could walk and talk and stuff her face with meatballs. Short visits to our old life are permitted, but we cannot lose ourselves in our fury and despair by imagining how things were supposed to be. Living with leukodystrophy requires an unforgiving discipline. As the disease takes more and more from you, you must find joy and happiness in what it cannot take. Three years ago, a good day was an afternoon in the pool or a walk to the park. Now it is a day with no seizure activity and making Cal smile at least once. It astonishes me that I find joy in simple moments, such as watching my son practice his guitar for his little sister or marveling at my oldest daughter reading Eric Carle’s “The Very Busy Spider” (and even doing all the animal sounds) to Cal. My husband, children, and I have worked very hard to create a normal life. Normalcy requires banishing pity from our lives. Normalcy was not what it had been before leukodystrophy, but with the hospice nurses, doctors, social workers, and our friends and neighbors, we have figured out a way to go to school and work and celebrate the holidays. Even the medical equipment that replaced Cal’s toys could not undermine our pursuit of this normal life. Sometimes the siblings of children with a terminal illness feel compelled to be perfect children to shield their parents from any more worry. So I am relieved when my children whine about dinner and argue with me about doing their homework, because their sister’s illness should not mean they cannot be kids with normal problems and feelings. We even got a dog. The head of the nursing team worried that a dog might alter the ecosystem of normalcy in our house. But the dog, an adopted bichon named Brody, sleeps with Cal and taught himself to bark when she has seizures. He takes the edge off life for my older children and even makes me get my daily 10,000 steps with long walks on the beautiful nature trail near our home in suburban Philadelphia. Dogs really do make everything better. My daughter has taught me when the worst possible thing happens, you have nothing left to fear. She has taught me that fearless people are maddening and relentless, and if we are fortunate, we can find a way to honor our children by changing the world. She has taught me that when you have tamed your fear, you harness its power to do extraordinary things. In the end, the only way to save yourself from the grief is to find a way to help other families. So what could a family caring for a terminally ill child do to help other people? It sounds nuts, but we started selling cupcakes for $1 each. My children and I live in the community where the late cancer patient Alex Scott reinvented cancer research fundraising with a lemonade stand. And so when my 8-year-old son suggested we could sell cupcakes to help kids with leukodystrophy, we had a role model in the Scott family. We sold cupcakes in parking lots, church halls, school playing fields, and one time at a street festival when six inches of snow fell over two hours. It was hard to talk about Cal and explain a rare disease that most people knew nothing about. In fact, we had never heard of MLD before Cal’s diagnosis. My husband and I were completely shocked, therefore, to discover that we were both carriers of the dormant gene that triggered it. This meant that all of our children had a 1-in-4 chance of inheriting MLD and a 1-in-2 chance of being carriers like us. The cupcakes helped us raise awareness of leukodystrophy and build a supportive community. It would not take long for the cupcakes to become a  real charity . In 2013, our friends and neighbors at the school where Cal would have attended kindergarten this fall hosted a whole daylong celebration of cupcakes called Cal’s Cupcake Challenge. Eight hundred people attended, and we raised $9,000. Nine thousand dollars is not a great deal of money for rare disease research. But what we did with that money changed everything. In 2013, Dr. Alessandra Biffi (now the director of gene therapy at Boston’s Children’s Hospital) published unprecedented results of a gene therapy trial in the prestigious journal “Science.” The treatment, pioneered in children with MLD, is already saving lives and is proving to be a game-changer. Dr. Biffi and her team are replacing the faulty gene that causes MLD with a working copy of that gene. Since naked DNA cannot be directly injected into our cells, the scientists use a virus to deliver the new genes. Viruses have naturally evolved to infiltrate our cells and deliver their genetic payload into the very heart of them. Therefore, the researchers have gutted a virus of its harmful genes but kept the useful ones intact. Dr. Biffi first withdraws the patient’s own stem cells in an operation similar to a bone marrow transplant. These cells are then exposed to the modified viruses, which, in effect, infects them with the functioning genes. The patient’s corrected cells are then re-infused into their bone marrow, and gradually they start to produce the crucial protein needed to keep our nervous system intact. Once upon a time, this research sounded like science fiction, but today doctors at the Children’s Hospital of Philadelphia and research centers all over the world believe gene therapy could defeat leukodystrophy within the next decade. Children who otherwise would be nonverbal and paralyzed are riding bicycles and attending school. Cal would never have benefited from gene therapy, because the treatment can only prevent damage to the brain; it cannot reverse the process once the disease starts. One day, newborn screening via a heel-prick blood test will find children with leukodystrophy at birth. Cystic fibrosis and Tay-Sachs are among the few dozen genetic conditions currently screened for in newborns, but there are hundreds of other fatal, rare diseases that are not part of the standard newborn or prenatal testing. That is why the children Dr. Biffi treated were so very special. In every case, like us, the families only found out about MLD when their child was diagnosed. By this stage, as with Cal, the disease will have progressed past the point of treatment—but it will also raise the possibility that their other children, even those who had no symptoms, could also have MLD. Caught early enough, gene therapy can prevent MLD. Even if MLD took an older child, it would mean that his or her younger sibling would be eligible for Dr. Biffi’s trial. The doctor who diagnosed Cal, Dr. Amy Waldman at the Children’s Hospital of Philadelphia, suggested that we use the money we raised from selling cupcakes to help another child with MLD fly to Milan for this treatment. When Dr. Waldman proposed this, I was astounded. It had been impossible to imagine helping other families when Cal could not be saved. But in August 2014, we got our chance to help a family in Omaha, Nebraska, travel to Milan with their 1-year-old. We packed a care package of a new iPad, toys, and blankets, and a check of $2,000 to help with expenses. The family had lost one child to the disease the year before. The baby would become the 10 th child in the world to undergo the treatment in Milan. In the past two years, the foundation we created in Cal’s name and the cupcakes we sell in a school playground have helped five families and their pursuit of miracles. It’s possible that children all over the world will have a chance to do all the things I dreamed of for Cal — going to school, dancing in a recital. Helping these children is our investment in a miracle. And Dr. Biffi’s research continues to live up to its promise — five years after treatment, Giovanni Price, the second child treated in Milan, started kindergarten. I have had the chance to spend time with three of the children, and two of them have attended Cal’s Cupcake Challenge and have met Cal. Because of the cupcakes, we are now working with researchers and doctors to get this revolutionary new therapy to the United States as quickly as possible. Cal’s neurologist, Dr. Waldman, now leads a Leukodystrophy Center at the Children’s Hospital of Philadelphia. There, leukodystrophy is no longer an orphan disease — instead it is a major initiative, with 35 specialists and researchers championing these children. On a few days a year — such as Cal’s birthday or the anniversary of her diagnosis — I allow myself to imagine the future I had wanted for my daughter. Helping other people’s children will never be enough to make up for losing Cal. My deepest wish is still that I had never heard of leukodystrophy, that my 6-year-old daughter would be running around my house and driving us all crazy. The thing is, until Cal, I didn’t understand miracles. We don’t get miracles because we wish for them or even pray for them — miracles must be earned through sacrifice, hard work, and struggle. In these past three years, my daughter has helped me realize the profound gift of witnessing a miracle and playing a very small part in creating one. This post originally appeared here on Slate We want to hear your story. Become a Mighty contributor here .

Allyson Buck

Struggling With the Terminal Aspect of Vanishing White Matter Disease

I am jealous of kids with cancer. I know, I know, I know. This makes me sound like a heartless person. I am not, I promise. Let me explain. The other day on Facebook, I saw a post about a child going for their third round of chemo. Instead of feeling sympathy or sadness, I felt jealousy. Then, of course, I felt guilty. This child is suffering. The parents and siblings are suffering. The situation is terrible — but this child also has a chance. No matter how slim, there is a chance the treatment will work and they will live a normal, happy life. That is what I envy: a chance. Nearly three years ago our youngest son, Sam, was diagnosed with a very rare brain disease called vanishing white matter disease (VWM). It causes the white matter in his brain to disappear over time. And if he has head trauma or fever, it causes him to lose motor control. There is no cure for this disease. There is no treatment for this disease. VWM is terminal. We know our son is going to die long before he should, and we know we are going to have to watch it happen. Because it is so rare, there is little hope for a treatment for Sam. There is little money for research and little awareness. Sam doesn’t really have a chance. When I hear about kids undergoing treatments for their disease, I am jealous. Jealous they might get a shot at life, jealous of that little bit of hope their families can grasp onto. Hope I so desperately wish I had. That said, hope can be a double-edged sword. Hope can make you put your life on hold, waiting for the treatment to work. Hope can cause you to put off until tomorrow what you should have done today. Hope can keep you mired in your grief, waiting for a miracle. In many ways, we are lucky. We have very few doctor’s appointments because there is nothing any doctor can do. We don’t spend our days in and out of hospitals, our child doesn’t have to undergo debilitating treatments and we do not have to watch our child in pain in order to get better. We are able to enjoy the time we have with Sam because we are so aware that the time we have is finite. We know this is a gift. The lack of a chance has in many ways allowed us to be happy, happier than we were before Sam’s diagnosis. We are so much more appreciative of everything we have, so aware we are lucky in so many ways. But I am still jealous of those kids. Jealous they might have a chance at life, jealous of the hope they feel, jealous of the treatments they undergo. And for this I am very sorry. I wouldn’t wish what they are going through on anyone. I would, however, give almost anything for a chance for our son. Instead, I will focus on making every day count. Follow Sam’s story on Facebook and on Twitter or Instagram. The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here .

Maria Kefalas

I’m Sad She Won’t Have a First Day of School, but These Words Helped Me

Back-to-school season is nearing. Supermarket aisles are filled with lunch boxes, and the department store flyers advertise backpacks and shoe sales. The world assumes if your children are school-aged, they will need new sneakers for running and playing and backpacks for carrying books and lunches. The thing is, when you child is paralyzed, you don’t have to buy sneakers. And if your child eats with a feeding tube, you have no need for lunch boxes. Our youngest child, Cal, would have enrolled in kindergarten this fall, but at the age of two, she was diagnosed with late infantile onset metachromatic leukodystrophy, a degenerative neurological disorder that has robbed her of the ability to walk, talk, swallow, feed herself and see. Cal is not expected to live beyond the age of 6. On the first day of school this fall, she will be at home in our den where she is cared for by hospice nurses and my husband and me. In my head, I can conjure up the first day of school that will never be. There would be a sign at the school’s main entrance for kindergarten check-in. One by one, anxious parents would bring the children into the massive building. Aides and the other staff would introduce themselves and make sure none of the children were lost or scared. Some of the parents might linger in playground and marvel at the beautiful building with its open landscaping and the massive mosaic of an owl, inspiring children to learn and soar in the pursuit of knowledge. Children would wear outfits specially chosen for this important day. There would be girls wearing perfectly woven braids and long, coltish legs. The boys would wear shorts and the bright-colored socks and sneakers that all the athletes wear right now. Cal would be wearing leggings or maybe shorts and sneakers, since she was never a frilly, dressy girl. I know she would want to run after her older brother who is one of the big kids in sixth grade. Cal’s curly hair would be wild and uncombed since before she got sick, she would never sit still long enough for me to brush her hair. How clear this vision of a thing that will never be is. How well I recalled just assuming all these things would happen when I became a mother for the third time. When the official letter from the district arrived in the mail wanting to know if my daughter would be enrolling in kindergarten, I didn’t know if I should just ignore it or call the district to explain why our daughter wasn’t going to school. I explained how we would only require home-based services. The woman was kind and thorough, though, she too was at a loss for words. She couldn’t help but ask, “Are you sure Cal is too sick to go to school?” I explained the risk of respiratory infection was too great and Cal’s world had to be our home and her nurses. It makes me sad Cal can’t go to school and learn. The paradox in all of this is that this child who isn’t going to school has taught our family and our community so very much. Cal has given my older children and our entire community a powerful lesson in how to live with a terminal illness. Even as the disease takes more and more from Cal every day, Cal smiles when the children speak to her and sings along during the spring concert. Cal never complains or gets angry. If she is in pain, she cries out, but she’s incapable of anger, cruelty or mean-spiritedness. Cal’s illness requires many people to work very hard to take care of her. But the truth of the matter is that Cal gives everyone much more than she asks of us. The children at the school have written a book about Cal and neurological diseases. Teachers and students at the school — where Cal will never be a student — have raised $37,000 to support children’s hospice programs and research in pediatric neurology. One day, when I told the guidance counselor at the school how much it hurt that Cal would never get to go to school there, she corrected me. “Cal is very much a part of our school,” she said. How could I have not realized this before? Cal had touched the lives of so many children, and they would never forget her. She had been a part of the school all along. The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

Maria Kefalas

I’m Sad She Won’t Have a First Day of School, but These Words Helped Me

Back-to-school season is nearing. Supermarket aisles are filled with lunch boxes, and the department store flyers advertise backpacks and shoe sales. The world assumes if your children are school-aged, they will need new sneakers for running and playing and backpacks for carrying books and lunches. The thing is, when you child is paralyzed, you don’t have to buy sneakers. And if your child eats with a feeding tube, you have no need for lunch boxes. Our youngest child, Cal, would have enrolled in kindergarten this fall, but at the age of two, she was diagnosed with late infantile onset metachromatic leukodystrophy, a degenerative neurological disorder that has robbed her of the ability to walk, talk, swallow, feed herself and see. Cal is not expected to live beyond the age of 6. On the first day of school this fall, she will be at home in our den where she is cared for by hospice nurses and my husband and me. In my head, I can conjure up the first day of school that will never be. There would be a sign at the school’s main entrance for kindergarten check-in. One by one, anxious parents would bring the children into the massive building. Aides and the other staff would introduce themselves and make sure none of the children were lost or scared. Some of the parents might linger in playground and marvel at the beautiful building with its open landscaping and the massive mosaic of an owl, inspiring children to learn and soar in the pursuit of knowledge. Children would wear outfits specially chosen for this important day. There would be girls wearing perfectly woven braids and long, coltish legs. The boys would wear shorts and the bright-colored socks and sneakers that all the athletes wear right now. Cal would be wearing leggings or maybe shorts and sneakers, since she was never a frilly, dressy girl. I know she would want to run after her older brother who is one of the big kids in sixth grade. Cal’s curly hair would be wild and uncombed since before she got sick, she would never sit still long enough for me to brush her hair. How clear this vision of a thing that will never be is. How well I recalled just assuming all these things would happen when I became a mother for the third time. When the official letter from the district arrived in the mail wanting to know if my daughter would be enrolling in kindergarten, I didn’t know if I should just ignore it or call the district to explain why our daughter wasn’t going to school. I explained how we would only require home-based services. The woman was kind and thorough, though, she too was at a loss for words. She couldn’t help but ask, “Are you sure Cal is too sick to go to school?” I explained the risk of respiratory infection was too great and Cal’s world had to be our home and her nurses. It makes me sad Cal can’t go to school and learn. The paradox in all of this is that this child who isn’t going to school has taught our family and our community so very much. Cal has given my older children and our entire community a powerful lesson in how to live with a terminal illness. Even as the disease takes more and more from Cal every day, Cal smiles when the children speak to her and sings along during the spring concert. Cal never complains or gets angry. If she is in pain, she cries out, but she’s incapable of anger, cruelty or mean-spiritedness. Cal’s illness requires many people to work very hard to take care of her. But the truth of the matter is that Cal gives everyone much more than she asks of us. The children at the school have written a book about Cal and neurological diseases. Teachers and students at the school — where Cal will never be a student — have raised $37,000 to support children’s hospice programs and research in pediatric neurology. One day, when I told the guidance counselor at the school how much it hurt that Cal would never get to go to school there, she corrected me. “Cal is very much a part of our school,” she said. How could I have not realized this before? Cal had touched the lives of so many children, and they would never forget her. She had been a part of the school all along. The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines.

My Daughter's Rare Diagnosis Helped Me Find My Purpose

When my daughter, Maddy, was 13 months old, our neurologist walked into the room and said, “She isn’t making myelin in her brain. This is very serious.” Then she gave me such a gift, and said, “Some kids get better and we don’t know why.” I knew the entire world was closing in around me, but I hung onto those words for dear life. “Some kids get better and we don’t know why.” I think, in the back of my mind, I thought I was going to figure out why. My daughter has a form of leukodystrophy. She has a devastating diagnosis, and at the same time, she has no diagnosis. She has been tested for every known leukodystrophy and doesn’t have any of them. The doctors think she has a brand new one. They’re doing gene sequencing on her now. Let me rephrase that. They’re doing gene sequencing on her, always. Since her diagnosis, she’s been tested for this and that, and now they are testing all her genes at once. We’ve been searching for seven years. That blows my mind. Maddy doesn’t walk or talk. She can’t hold a spoon and has little seizures all day. She has a hard time holding her head up. And she has big blue eyes and this infectious laugh. She really does light up our lives. I never thought my life would be so full. I could never have known at that diagnosis that what seemed like a lonely time would become a wonderful world of people who love our child just as much as we do. There are so many people who care and want to help. She has her own team of therapists, teachers, cheerleaders, caretakers, friends and family. She loves when I ask her if she wants to walk in the Upsee or when her dad throws her up in the air above the ocean waves. She even likes it when her little brother misbehaves and gets in trouble. My life has changed so much for the better. I was blissfully happy to be a mom before we noticed her problems, but there was something that kept nagging at me. I didn’t understand what I was doing here on Earth. I would be anxious and feel like I was supposed to be doing something and would get tired from being anxious. Then Maddy’s diagnosis came, and I snapped into research mode. I’ve been reading and learning and trying different diets and non-invasive therapies, and some have helped.  While she takes horseback riding lessons, I get to sit and relax in the fresh air — something I probably wouldn’t have done before she was here. I have an appreciation for life that I didn’t have before, and I’m so thankful. I would give anything to give her a normal life but am so grateful she gave me a purpose I wouldn’t have otherwise had. She’s this incredible little puzzle, and I need to find out why she isn’t making myelin. Maybe what we learn from her can be the reason some kids get better. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

Maria Kefalas

The Day I Found Out My Daughter With Leukodystrophy Wouldn't Grow Up

We all have our diagnosis stories. No matter how long ago it happened, every parent like me remembers the days their hopes and dreams for their children ceased to be true. It was June 26, 2012 at 7:45 a.m. when a doctor and a social worker walked into a room at the Children’s Hospital of Philadelphia and told me my beautiful little girl, who had trouble keeping her balance and had stalled in learning to speak despite the therapists coming to our house, had late infant onset metachromatic leukodystrophy. There was nothing to be done, and Cal would eventually lose her ability to walk, speak, feed herself, hold up her head and see. This disease will take Cal one day. Most kids with late infant onset metachromatic leukodystrophy don’t survive beyond their 5th birthdays, and Cal turned 5 on December 23, 2014. It was a diagnosis so grim it made you wish for a brain tumor. The day I heard the word “leukodystrophy” for the first time, I was anything but brave. I wanted to leap out the window of the hospital. I collapsed on the floor. I cursed the nurses and the doctors. All the while, Cal, who was just 2, wanted to snuggle and read books and sing. When you learn your child won’t grow up, it’s astounding how quickly your old life ends. You mourn this old life as much as you grieve over your child’s prognosis. And, if I could go back in time — and I do from time to time when newly diagnosed parents email or write to ask for my help — I do my best. I now get to tell versions of myself what I needed to hear that June. The first thing I say is that getting this news is terrible, the worst thing that can happen, and it will feel like you’re dying. But I promise you, you’re not. And after a while, once the shock of it gets absorbed into your system, you will put yourself back together and find that you’re superhuman. You will be astounded by your courage and clarity. Even though you will find you can do amazing things for your child, pace yourself, ask for help and understand the limits to your power. You must stop and find time for yourself and sleep and take a shower and leave the house. Surround yourself with people who can be there. You will be surprised by the people who are good at helping you and by the ones who are not. Forgive people for not being able to say or do the right thing. You will need a sort of tunnel vision. Please don’t dwell on the life you dreamed of for your child. But take brief visits to your old life. Figure out what the disease or disability can’t take away, and create joy and fun around what is possible. For children with leukodystrophy, there’s so much pleasure to be found in sharing a story or a movie, having a bath and being around people who can engage with them on the right level. This year we celebrated a birthday with a sing-along with all my daughter’s favorite songs. She laughed so hard she got the hiccups. It’s true she couldn’t open presents and eat cake, but it was still a celebration. Making a child comfortable, keeping away the pain and making her laugh and smile each day requires great effort, but, unlike before, you will take none of it for granted and you will be astounded at how much pleasure and comfort will be possible in things you hardly noticed in that old life. I’m afraid you will be angry with yourself and the other parents who take it all for granted. Create lots of memories, take photos and don’t just use your phone — get a professional photographer or even an artist to paint a portrait of your child. Your house may fill up with medical equipment, but these things will not make your home a hospital. The machines and medicines are there to help you give your child the best possible life. They are tools for you to do what you need to do. Your child will reveal to you what’s required of you. If you can have the courage to be present, these children will teach you the meaning of life. But, no matter what the disease does, your child loves you and you love your child. Your child will be blessed to have parents who care so much. Your love will consume you, but it’s endless, so you will never run out of it. Love will be your secret weapon in all of this. Look for the beauty and joy. Our house is always filled with people, music and children, more so now than before Cal got sick. Please don’t hide. The room where my daughter spends the day is the center of life in our house. Her nurses are like our family, and we enjoy birthdays and Christmas and music and the Super Bowl just like anyone else… maybe even more than we did before. Create physical beauty and keep it close. Our house has a gorgeous painting of Cal and her sister hanging in the dining room created by the most wonderful artist. On the hospital bed where Cal sleeps is a beautiful handmade quilt, and in the living room, I have the book third graders at my son’s school created about Cal. These treasures will protect and inspire you. Write a blog, find old friends, tell anyone who will listen you and your child’s story. The only way to endure grief is for it to become a story that you can tell yourself and others. And if you are comfortable, use social media to connect with the parents who are going through what you are. Realizing you are not alone will save you. Follow this journey at The Calliope Joy Foundation. The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.