Cri du Chat Syndrome

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    Community Voices

    A lil something for one of my friends.

    <p>A lil something for one of my friends.</p>
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    'Welcome to Holland' Parenting a Child With Cri Du Chat Syndrome

    When your child gets an unexpected diagnosis, kind and knowing people send you the “Welcome to Holland” poem. The poem, which many people like our family find comforting, describes what families of individuals with unexpected diagnoses experience. It references the surprise detour of visiting Holland instead of Italy. A trip to Holland represents a new and different future after an unexpected diagnosis, while a trip to Italy represents a now lost future and lost old hopes and dreams. Our family found out we were going to Holland instead of Italy in the middle of our flight. We were, metaphorically speaking, ready to land in Italy when the plane went wheels up, and we changed course to Holland. We hadn’t packed for Holland or done any research around the best places to visit or stay. We never saw ourselves ever traveling to Holland, so we knew nothing about it prior to our emergency landing. In the beginning, reading the “Welcome to Holland” poem helped us feel less alone. At least for us back then, the pain of receiving our daughter’s diagnosis was uncontrollably real. For the first few months, it was more than we could handle. If we were actually in Holland, you would have seen our Instagram posts about everything we were doing and seeing, but what you may not have known was that when we weren’t forcing ourselves to get up and go and do, we were in bed with the covers over our head in a puddle of tears. The first few months, again, at least for us, were the worst and hardest we have ever been through. And then, it slowly got easier. Over time, life got better. As we got to know Juniper and fell in love with her more, I stopped worrying so much, my sadness became joy, and my self-pity was replaced with appreciation and gratitude for our little girl. I realized that a lot of my initial worries were related to our family’s being different now, our future being unknown, and our life being hard. It felt as if literally everyone else was in Italy, and we were alone in a place we never knew we wanted to go. While these worries are not completely gone, they’re now little blips or twinges that happen from time to time. They no longer control me or our life, and they’ve been replaced only with fears that people won’t get to know or understand Juniper simply because she’s as different as she is. With all of her uniqueness, if there was ever a perfect Holland Tour Guide or ambassador for unexpected, yet wonderful travel, it’d be our Juni. And now, even this worry and pain that people may not love and see, really see, Juniper for how wonderful she is, doesn’t come every day.⠀Knowing all of this now, I wish there was a Part II to the “Welcome to Holland” poem titled something like, “You’d Have to Drag Me Out of Holland for Me to Leave” or “We Live Happily and Proudly in Holland Now.” The important thing for families to know is that pain and worry and grief subside. These feelings lessen because they’re replaced with appreciation and so much love. Once you’ve been in Holland for a while, you can stop worrying so much about how life is different or hard, and really just appreciate your child for the unique things she brings to the family (like any other family member). You don’t appreciate your child as your teacher or angel or anything like that (even though I believe they can oftentimes be these things), but you love her as a person and important member of the family — a worthy, perfect, contributing family member just like anyone else, diagnosis or not. You realize your child is the best travel companion you never knew you needed.⠀Over time, you take up permanent residence in Holland and settle into your new life of raising a child with a disability. Once you’ve made some new friends and know your favorite Holland places, your life focuses less on your child’s “special” ness and more on their “normal” ness (in the best meaning of the word possible). You get comfortable in Holland and start dignifying and appreciating your child as opposed to pitying, or fearing, or over-protecting, or babying her.⠀And eventually, you live for the pace of Holland. You see, the hustle and bustle of Italy doesn’t leave much time for enjoying things like windmills and Rembrandts. And, like the poem also says, Holland has tulips — and time to enjoy them. We live happily and proudly in Holland now. We choose to live here now, and we’re not going anywhere else.

    Community Voices

    Please Stop Trying to Make My Child Normal

    A couple of years ago we had a family over for dinner. (Sometimes it’s easier to be the one inviting than invited.) It was meant to be a time to gather around the table and connect. It had been a long time since we hung out. In fact, in the time since we used to see this family regularly, we had a child born with a severe disability. They weren’t entirely used to being around Nathan and they didn’t know everything we had been through in the last few years of his life.

    It was uncomfortable.

    It was uncomfortable because they were uncomfortable with our child and I couldn’t make it better for them. What we had five years to process and grow to accept about our child’s fragile body and delayed mind, they were trying to come to grips with throughout dinner. And by coming to grips, I mean just knowing how to interact with us and our child.

    The husband repeatedly kept trying to compare our son to his…when he was a toddler.

    Our son is tube fed because he can not eat very much food by mouth without aspirating. What he does eat by mouth, at the age of five, is comparable to baby food. I puree or mash up potatoes and avocados. I give him yogurt and pudding and applesauce. Mostly kid food, but it looks like baby food because it has to be a pureed consistency. At the dinner table, he commented,

    “Oh, that’s how my son learned to eat!”

    When Nathan would coo at the table and we would try to guess what he was trying to tell us. Or, when we used our limited sign language vocabulary with him he would say,

    “Oh, that’s how my son learned to talk!”

    And as he crawled around on the floor and pulled up on the countertops and cruised along the surface to try to get around the room to the best of abilities he again said,

    “That’s how they all learn to walk!”

    Now I know my friend’s attempts at conversation were intended to encourage me and make me feel like my son would develop because this is how it’s [typically] done. The problem is that he is on a WAY delayed timeframe and we honestly don’t know if any of his skills will develop beyond where he’s at right now. It’s just part of his disability. He learns some things and others he doesn’t. Sometimes he will develop a skill and then promptly lose it. I take nothing for granted in my son’s life and that’s why this house guests repeated attempts to normalize my child hurt.

    Of course, I want my son to learn how to eat more solid food and liquids by mouth. I want him to learn how to communicate, and if he learns how to talk, that would send me over the moon. And walking. What a bonus to be able to walk without the help of a walker. All of these things are important to me. But I do not live with my head in a hole that he is going to live a perfectly normal life. And therefore when someone comes along and compares the things he is doing at the age of five to what a neurotypical child does at the age of 18 months, it hurts.

    I want my son to be loved and accepted for where he’s at and who he is. Regardless of whether he walks, talks, and eats by mouth. His value is not found in meeting those milestones. It is found in his existence. His personhood. The soul inside his broken body, which is worth more in the eyes of God–and his mother–than any an entrepreneur who can raise one million of capital in his first year of business.

    There is a quote from the book Gilead, that has stuck with me over the years.

    “All that is fine, but it’s your existence I love you for, mainly. Existence seems to me now the most remarkable thing that could ever be imagined.” – Marilynne Robinson, Gilead

    Never forget sweet boy that I love you for you. Because you are mine.

    Cri du Chat Syndrome

    'This is Us' Triggered My PTSD as a NICU Parent

    I should have known. The popular TV show, “This is Us.” is known for its emotional drama. I think the writers believe if they can’t make you cry, then they haven’t done their job. Recently in the show, one of the “big three” siblings had a preemie. The baby was born 12 weeks early and is in the NICU. As you can imagine the parents are not handling it well, but especially the father, Toby. In a conversation in the waiting room a fellow NICU dad says, “You want to know something really messed up? You know Max and Louise… so, their baby’s organs are failing and they can’t do anything about it. So their baby is not coming home.” “That is messed up.” “No, no the messed up part is sometimes I think about them and it makes me feel better. I think, ‘well at least we’ve got a chance of going home. Better off than Max and Louise.’” “Dark.” Dark Emotions Happen in Hospital NICUs NICUs are an upside-down reality because you think you will have a baby where everything is perfectly new, little and lovely. When you are expecting, you imagine all the emotions to be love and joy and a bunch of baby cuddles. That is often not the case with NICU babies. Things get turned around and real dark real fast. When babies are born too early or very sick, everything is suddenly fragile and unknown. Brand new life is threatened to be replaced by death. When my son was in the NICU, I remember day-after-day not wanting to make eye contact with the other moms at the scrubbing station. I didn’t want to hear their stories because that meant I would have to share mine. I didn’t want my story to make other people feel better. That’s human nature. But I just felt mine was the absolute worst. PTSD Triggers For the most part I have moved on from those dark NICU days, but sometimes a sound, a scent, or in this case, a scene will send me back again. It can feel similar to how Toby explained going through the experience, “I still feel like I’m someone outside my body watching from above.” It takes time to grapple with the reality of a trauma. Although it is not always the case, it could redefine your life in some way. Now I look back on those NICU days and wish I would have known things would eventually get brighter. That’s the nature of love. I wouldn’t say my love bloomed in an instant when I met Nathan. I was scared to love him for fear he would leave me. And if he did live, how his life would be marked by disability. I had to fight to accept his new life, however short or long. But I now know this, even if Nathan never came home, his life would still be marked with love. Just because something happens that you are not expecting, that you didn’t sign up for, that you don’t feel qualified for, doesn’t mean something beautiful and lovely can’t come from it. As you go through the dark places of the NICU — in the present or as a form of PTSD — you learn that love is never, ever diminished by grief.

    Melanie S

    Advice for Someone Whose Baby Was Diagnosed With a Genetic Disorder

    Ella is almost 8 now and while in the scheme of things I guess that’s not very long, I still feel like I’ve got experience to share. Ella was 3-weeks-old when she was diagnosed with Cri du Chat syndrome. This post I’m writing is what I wish I had read, way back then. But this isn’t about me, dear reader, it’s about you. Maybe you’ve just received a diagnosis of a genetic disorder for your baby, or one of the umpteen other possible diagnosis out there. Welcome to the club that no one wants to be part of. I can promise you that this club, with all of its ups and downs, is full of amazing, inspirational and strong people. No matter how you’re feeling right now, in this moment, you can get through it. Here are nine things I have learned through my experiences, that I hope can help you along your journey. 1. Breath. Just…breath. Sometimes you’ll feel like you can’t do it, like it’s too hard. In eight years I’ve felt like I couldn’t handle it countless times, and you know how many times I’ve handled it? All of them (so far) and I’m nothing special. So take your moment, (hell, take 10!) to refocus your energy. And while your world may be falling apart, remember you are the world to a little person. So take your moment, scream into pillows, pace, rant, cry in the shower, do whatever you need to do…and then (this is the important bit) pick yourself up and continue to be the world for your child. You’re a bad ass, you got this. 2. Be kind to yourself. You’re not perfect, nobody is. You will make mistakes, you will falter, you will sometimes make the wrong choice. Try not to feel guilty for your feelings… they are valid, always. When Ella was diagnosed and I was staring down this dark barrel of the unknown and in my darkest moments, I wished things I’m now ashamed of. I felt like I didn’t want her, I felt like I had failed her already. Like I couldn’t do it. I was depressed. You can’t help the way you feel, and there is nothing wrong with getting help to work through those feelings until you can get to a place of acceptance. And don’t feel guilty for decisions you’ve already made. It might be a therapy that turned out to be useless, or a surgery that didn’t fix what it was supposed to (I had Ella’s tonsils and adenoids out when she wasn’t even 2, yet after being told it will fix her breathing issues…it didn’t). As long as you’re making the best decision you know how, with the information you have at the time, you’re doing OK. Remember, hindsight is always 20/20. 3. It’s OK to be mad. In fact, it’s probably really normal to be mad! Furious! Nobody likes it when their plans are changed without any warning. So go ahead and rage at the diagnosis, at the doctor who informed you, at the circumstance and the whole damn world. But if you find yourself dwelling in this place of anger, find some help to get passed it, because the best is yet to come. 4. Focus on the now. When Ella was diagnosed I remember reading all about Cri du Chat. I remember so clearly I was stressing what school would Ella go to. It went something like this… “OMG what am I going to do? There’s no specialist school in my town. Would she be able to go to mainstream? I’m going to have to move house, how will I afford that?” And it went on, and on, and on. Eventually while lamenting over this, another (much smarter and wiser) parent of a child with a disability laughed and pointed out that, “ Ella is 1-month-old you dill,” and not to focus on things that are five years away. So that’s my advice to you — focus on what you can. Whether that be only a year from now, a month, a week or even the next hour. The funny thing about the future is, it’s not going anywhere. 5. Don’t be afraid to say no! You are now an advocate. I will always advocate listening to the doctors, therapist and experts. They have hopefully studied and know all about your child’s condition, but you know your child. The experts can be wrong. For example, I was told Ella would never walk and yet by 5-years-old, she could! That being said, there were several times I stopped physio session half way because I knew she’d had enough, or pushed her to finish because I knew she could. So it’s OK to to say “no, he’s had enough,” or “no, he can learn this.” 6. Find your humans, ones you can turn to. The biggest thing is you’re not alone. There are others like you out there, you just have to find them. I thought I would never find anyone “like me” (swears, single at the time, drinks, acts young even though I’m totally not, coffee addict). I even wrote a post about it. But I did, I found people like me, and people that aren’t. Some are parents of typical children, some have children with disabilities and some aren’t parents at all. One of my biggest supporters is a lady that I used to work with many many years ago, who lives over the other side of the country. But she’s always the first to give me feedback and have a chat. So I can’t stress this one enough — find your support however that looks for you. It could be religious groups (totally not my thing, but some people find it so helpful), mothers’ meetings, therapy or Facebook groups. Find someone you can talk to. 7. Ask for help. Throughout the years I’ve learned that people want to help, especially your friends. But they might not know how. If you’re struggling, ask! Like I already mentioned, hopefully you have some support. Call your friends, tell them if you need help and (this is the hard bit) how to help you. You might need someone to do some laundry while you’re staying in the hospital, or someone to take the other kids while you have an appointment with your kiddo with a disability. You might even just need someone to come over for a coffee to listen, or take the kids while you get a rest. The bottom line is, you can’t do it all and you don’t have to. 8. Nothing has changed. Not really anyway. Something that’s always made me feel better is knowing the sun will set tonight, and rise tomorrow, and everything will carry on. Yes, your life feels like it has turned upside down. And the future might be very different than the one you once imagined, but he’s still the precious baby you loved yesterday, and the day before that, and the day before that. And you will still love him tomorrow, and all the days after. 9. It will be OK. No, really. It will. Have these tips been helpful? Is there anything you would add? Tell us in the comments.  

    leah Moore

    Managing Anxiety as a Parent of a Child With a Disability

    There was a ship and a dragon. Sometimes the ship was Pirate themed, sometimes it was right out of Peter Pan (the Mary Martin version) but it was always a dragon. It flew through the air with harrowing teeth, spraying fire, and every time, right on cue — it tried to eat my Dad. But I always woke up, just in time. The night before his work conference, it was especially gruesome. I lay in bed trying to count away my tears, knowing I should be asleep. I had a big test on the counties of New Jersey. I studied all night and even made up a song to remember them. Feeling terrified in bed would absolutely counteract all the work I had done until this point. It was a lot of studying for a fifth-grader. But I couldn’t expel the nightmare. I stood outside of my parent’s bedroom door. It had only been a few months ago I stood in the same spot with my other debilitating question: what day of the week should I wear my new bra? I worked up the courage then to knock, deciding training bras were best worn on Monday’s, a non-gym day. I could convince myself to knock again. But tonight, the knock on the door was different. This knock was two years before my first funeral. Before shiva started occurring almost annually. Before I experienced my first heart break. Yet the fear of the unknown was all consuming. I was terrified for my dad to get on his plane. I knocked. I can’t sleep. Something bad is going to happen. There is a brown chest at the foot of my parents’ bed.  It usually holds the afghans my great grandmother knit that still smell like 1900s Russia and pirogies. My mother, responding to my pitiful knock, turned off “Murder She Wrote,” took my small hand and led me to the chest. With labored breathing, I managed to croak out my recurring nightmare: dragon, fire, pirate, ship. Then finally, what if something happens to Daddy’s plane? Maybe she was used to my emotional outbursts or it was her training as a counselor, but her reply was simple, “If you spend all your time worrying about what may happen tomorrow, you won’t be able to enjoy today.” There is a joke in our house that every mother should have a Marmie moment. Louisa May Alcott inspired the “that should be embroidered into a pillowcase” type language that every mother desires; my mother could run circles around Marmie. I was struck by her honesty. Even at 9. She did not redirect me to return to bed. She did not overindulge my sadness. She did not promise me everything would be OK. It would be the same advice I later found in the pages of “To Kill A Mockingbird”: “It is not time to worry yet, I’ll tell you when to worry.” But on this night, she simply gifted me some of her own resilience. She had lived through unimaginable loss. Both of my parents had. They raised me to fight for the joy. This brown box turned out to be quite the fortune cookie for my parents. Years of advice followed: If you keep ignoring his calls, it probably means you don’t want to date him anymore. If you use the curling iron on wet hair, you will burn your bangs. If you invest in your 401K plan now, it will double every eight years. Solid wisdom. Throughout all the adages shared in my childhood home, the dissipation of my dragon nightmare is the only one I can remember. I remember the walk back down the hall. I remember returning to my bed. I closed my eyes and the vision of the dragon immediately appeared, like the bad guy waiting for you in a scary movie. This time it was purple with gigantic snarling teeth. I forced myself to open my eyes and clutched my beloved teddy bear. I spoke aloud, “I don’t need to be afraid of you.” I can make this different. When I closed my eyes, a new image appeared. My father was now riding on top of Puff the Magic Dragon and he was singing. He put his hand out to me and I hopped on the dragon’s back. That night I dreamed of flying. There were no flames following us. And I aced my New Jersey county quiz. Decades later, I lay my children safely in their beds, I am reminded of that dragon, of that brown box, of that advice. I am no longer preoccupied with the unknown fears, because I am swallowed by the ones I am currently living. Raising a child with a disability can do that to you. My mother’s Marmie advice wanes as I am worried about the future — constantly. Once my weary head finally hits the pillow, it just keeps spinning. Did I get the forms filled out for school tomorrow? Did I remember to write a note in the lunchbox? What day does the garbage go out? Did I forget Speech moved to Wednesday? Did I remember to grade Susan’s project? Was my observation lesson tomorrow? Did I ever send Lauren her birthday gift? Did I brush my teeth? How do we tell the family she is repeating the grade? I open my eyes, dizzy from the reeling thoughts and see a familiar face. My childhood teddy bear strewn on the floor covered in highlighter and a sock. He has survived decades of sleepless nights, a lice scare, and some rough years in college. Why shouldn’t he get to have another go of it with my own children? His worn face reminds me —  turn the monster into Puff the Magic Dragon. And I start slowly. I breathe out the latest doctor’s report and I breathe in the sound of my son’s ABCs. The nasty woman on the phone. Out. The Halloween parade. In. Thank you notes I never sent. Out. My niece’s birthday party. In. And slowly, the anxiety quells. I wish I could return to the days of memorizing: Morris, Essex, Sussex, to a time when my training bra was the big activity for the week, when I could waddle down the hall in my pajamas and have my parents make it better. But it is up to me  now. I can remember there will be plenty of worries for tomorrow, but if it’s all I focus on, it doesn’t leave a lot of time to fly through the sky singing MoTown with my Dad.

    Opinions Should Not Drive Our Advocacy Efforts

    I was sitting on the couch watching HGTV after having hip surgery. (That’s pretty much what I did for two weeks straight.) The doorbell rang and I asked my 7-year-old to look through the window and tell me who it was. I was hoping it was a friend for him to play with, but it was a grown up. So I hobbled on my crutches to the door. The person on the other side was an environmental activist. She was gathering signatures for a petition to prevent our city from removing the laws which protect our trees. First of all, I don’t sign petitions for issues I don’t fully understand, even if it seems like a great cause on the surface. Well, what kind of person doesn’t like trees? I do like trees. I have two, at least 100-year-old, Live Oak trees in my front yard and I love them… most of the year when they aren’t dropping leaves and pollen. Still, I want to fully know what I’m signing and not do it simply because of the insistence and persuasion of the person who desperately wants the signature. Second of all, I was very obviously on crutches and, short of telling her I didn’t feel well, I told her all variations of “no.” She proceeded to say to me, “Well can I at least use your bathroom?” So I let her. It was over 100 degrees outside and I felt bad for her. Once she got out of the bathroom she tried her pitch again. Now she was on the inside of my house, trying to convince me that I really needed to call my state rep about the trees at risk of being plowed down by developers. She said, “Are you even aware of the Governors special session?” I told her I was very aware of the Governors session because of my son. My cause is protecting the lives of medically fragile children. This technically would have been my perfect opportunity to launch into my cause, which is protecting the lives of  medically fragile children in our state. Children who are getting their medical and therapy benefits cut left and right due to budget and political issues, not because of what is right. I don’t know much about trees, but I do know a fair bit about children with disabilities. In our increasingly politically charged society, we all have a cause (or many) incredibly important to us. A cause that maybe isn’t to someone else. I’m just beginning to sort out how to use my limited time and resources wisely, according to what my opinions, beliefs and convictions are around different issues. The difference between opinions, beliefs and convictions. A person can have many opinions. I have lots of opinions — chocolate chip mint ice cream is the very best flavor, light tints are the best paint colors, and Live Oak trees provide great beauty and shade. An opinion is a view or perspective on something that is not necessarily based on fact or knowledge. Beliefs, however, are based off what is true. One of my specific beliefs is the Son of God walked on earth nearly 2000 years ago seeking the poor and the disabled (Luke 14: 13). He brought healing and hope to the lives of those who were not seen as much in the eyes of this world. Jesus cared for those with disabilities and therefore, I am convinced that I should, too. Convictions are firmly held beliefs. I have several convictions. One of my very firm convictions is for the rights of people with disabilities, in particular my son, Nathan. His life collided with mine on the day of his birth and I’ve never been the same. Nathan’s very life has convicted my spirit about the plight of the vulnerable. I became very firm in my belief that the value of a life is not based on its productivity. I will advocate that as a society, we should help protect the lives of the most vulnerable. Everyone has a different cause. The tree activist at my door probably cared for the disabled about as much as I care for trees: concerned but not convicted. This was not her cause. Trees are her cause; children with disabilities are mine. From where I stand as a middle-aged woman burdened with the responsibilities of my medically fragile child, I don’t understand how someone can dedicate their time to that specific cause. But it doesn’t mean I shouldn’t respect it, even if I’m simply respecting it is the way she is using her time. That day, I did the best I could. I listened, I stood on one foot for longer than I wanted, and I let her use my bathroom. I told her that my time and energy went into disability rights and that I don’t have capacity for much else. Then, I shut the door, and crutched back to the couch. It’s kind of ironic that, I myself, was disabled that day. Next time, maybe, I would do it different. Maybe another day I would have asked for more information about her tree laws. Maybe another day I would have told her a lot more information about Protect Texas Fragile Kids. Who knows? Maybe one day I will be able and willing to barter a deal where if she would call the Governor regarding medical and therapy benefits for children, I would call my rep about her trees. The Special Session is long over and the Governor decided to not reverse the therapy cuts, in spite of it passing through the house. That means that pediatric therapists will be reimbursed less for the their care of our children, which means that many of them may not keep practicing, which means that if our children aren’t given opportunities to learn independence they may likely become more dependent on the state in their adult years. I don’t know. It wearies me and I wonder if I’m doing it right at all sometimes. How can the voice of one person make that much of a difference in the things we care about? Who knows, maybe the tree girl feels the same way? I only know my opinions should not be driving my advocacy efforts. My convictions should. I firmly believe people with disabilities matter. On that, I am crystal clear.

    leah Moore

    The Connection I Feel to Other Parents of Kids With Disabilities

    The first time I remember it happening to me, I was reading a book by a community pool. My infant twins were blissfully asleep in the shade and my daughter was safely swimming with my husband. I was, in fact, relaxed. I looked up when I heard laughter coming from the baby pool five feet in front of me. A teenage girl with Down syndrome had gone under the “Do Not Enter” sign and was splashing in the center of the water. She was laughing vibrantly and cooling her face from the hot sun. I could see her mother in the distance running towards her from the other side of the pool. I gently stepped forward and used all of the techniques I have learned to transition this young lady into a safer space. Her mother arrived in record time and got her to successfully leave the pool. The mother smiled graciously at me and left. I couldn’t stop thinking about it. The girl was safe. The mother was polite. It was a calm scene. But I wanted to yell after her and connect with this woman. But my daughter was not present. There were no clues that I was also a parent of a child with a disability.   Until this moment, I had not realized how desperately I wanted it to be obvious, to be “labeled.” I was almost appalled at myself; I despise labels. I advocate as a parent and a teacher that children are above labels and are more than ability and diagnoses, and yet I wished there was an unspoken way to let her know, “I get it! You handled that beautifully!” It was the first time I realized how much of my identity was wrapped around being a parent of a child with a disability. For so long being a parent of a child with a disability felt like I wore it as brand on my body. There were many days I tried to remove it, but I felt its permanence. I then recognized it became something like a “badge,” mostly at doctor’s appointments and IEP meetings. I flashed it when needed. I like owning this “label.” I like sharing a knowing smile with other caregivers; it makes me feel connected. Helps me to shoulder the burden by knowing for each library, grocery store or park, there is a secret army of siblings, grandparents, or teachers that get it, too. But the longer I wear my “label” the more I want to share it. You don’t need direct experience with a child with a disability to have this “badge.” You just have to build a world where piteous smiles are replaced with compassionate ones. Where empathy is truly the connector. We want to hear your story. Become a Mighty contributor here . Thinkstock image by RobertoDavid

    Leah Moore

    Parenting a Child With Cri Du Chat: Climbing 'the Giant Slide'

    My daughter was recently invited to a birthday party at one of those inflatable lands of bounce. As a result of her rare diagnosis, Cri Du Chat syndrome, which includes hypotonia, this tends to be a place she spends more time giggling than bouncing, but nonetheless she has a wonderful time. For this particular challenge, she was determined to scale the “Great Slide” — four slides of varying difficulties attached together. The first three are the “up” slides attached to a culminating slide where the victorious mountaineer can descend. My daughter started on the most difficult slide. To be successful, she would have to run up the entire thing, cling to a small handle and propel herself to the top. Her little 6-year-old body enthusiastically jumped on and slid all the way to the bottom, giggling all the while. “Momma help me.” Off comes my backpack. Off come my shoes. We allow some tiny toddlers to scoot past us, flying up the slide. We got this. I place her in front of me. We take a running leap and quickly slip our way back to the beginning. Undeterred, she is up. Again. This time I have a plan. I can push her with one hand while holding onto the railing with the other, as to attack the slick surface. Attempt three, four, five. We come tumbling back to the start. All the while she is laughing. It is at this point, I notice the parallels. I am facing a physical symbol of this journey as her mother. I have to somehow guide her to the destination, while maintaining my own footing so we can both be successful. However, despite the rope burn, twisted arm, or small child landing on my head, we must uphold the laughter. I was told many things she would never do. But she wasn’t. It is not an option for her to giggle down the slide. Again. On the next running start, I learn if I carry her and dig my feet into the sides, we can get further than we did last time. I have never been more grateful to get up at 4 a.m. to go to the gym than I am for this moment. I am strong enough to get us both to the first handle. She clings for it – and misses. The next journey, she reaches but does not have the strength to hold on. I have learned to shift my weight to gain more balance, and I catch her. We dangle together while the toddlers once again lap us, and I choose to explain how the slide works. If I can hold both of our body weight momentarily, she can perhaps see more closely what she is trying to accomplish, therefore increasing her chances. She reaches towards the yellow handle and holds on. It is enough momentum to push her further and further to the top. She shouts, “I doing it, Momma.” We tumble over the top and land in a heap at the top of the slide. We did it! I look down to see a dear friend cheering us on. We did it! It may as well have been Mount Rushmore – we are overjoyed! We giggle our way to the downward slide and victoriously celebrate our achievements. Our cheering section is there to capture the moment. We jump. We celebrate. We found a way up the slide when everything told us we couldn’t. I’m ready for some water and a bench. Again. I am exhausted. It’s been work to get her to this point. I see the other children independently navigating the slide and the other parents making small talk. She can’t do it without me yet. And the accomplishment on her face cannot be ignored. We are faster this time. But we are not graceful. There are no awards for how you get there – just get there. We are lapped twice by a boy half her age, but we reach the top. And we slide down – cheering all the way. On our final trip, we pause at the top. I encourage her to look down to see how far up she is. She is using the same laugh she has when she tells her favorite joke, so I know she is ecstatic. I tell her to slide to the descending slide on her own and I will cheer her on from the bottom. I show her the fourth slide is the one that will carry her safely down to me. I know she can come down alone. I leave her safely perched on top of this inflatable mountain. I climb back to the bottom just in time to see her slide down. However, rather than crossing it to the descending slide #4, she has chosen to slide down one of the “up” slides. I panic. She will get hurt, there are things in her way. She will hit another child. Did anyone notice? She gently bounces off all the obstructions, ricochets past them, glides successfully towards the bottom. I run over to her. She can barely catch her breath from laughter. Again. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Zuberka

    Leah Moore

    Parenting a Nonverbal Child With Cri Du Chat Syndrome: What to Know

    It started in my basement. Each stuffed animal would sit on top of the ping pong table waiting to find out if they passed the spelling quiz. Beary could never spell “because” correctly and would have to stay after school to get some more help. Words were never his thing. Luckily for him – they were mine. So I used them. I wrote songs. Terrible, terrible songs. When two people are very close, they’re friends. They have friendship. Carole King, I wasn’t, but my mom was a big fan. I wrote stories. My 7 th grade English teacher told me the 87-page, hand-written, double-spaced, story about a woman looking for her daughter was a bit excessive – but it showed promise. I wrote letters. A 102-page ongoing note to my most trusteed 11 th grade friend. Perhaps I should have taken more notes on American history and less on the boy in the front row, but it was good practice. I loved words. I would use thousands of them a day. In fact, my whole family did – so my poor father rarely got to speak more than five a night. How was school today, girls? I kept on trudging through my uneventful childhood and found every opportunity I could to practice them. So, perhaps it was only fitting that these little entities became my livelihood. I am a high school English teacher, and I hear and read words everywhere. They’re on the papers I grade. The books I read. The grocery list on my fridge. The bills on my desk. They are everywhere. *** You’re pregnant. It’s a girl. There’s something wrong. We don’t know if she will ever speak. Cri du  Chat. It’s a new word in my vocabulary. In French, it means “cry of the cat.” In medical school, it means a genetic disorder. In the doctor’s office, it means tests and therapy. At my kitchen table, it means my daughter. So, we find words in new places. They are hiding in smiles, dance moves, and signs. They sneak in with “Mama” and “more.” They come out with pointing and listening and just knowing. And each day, we wait and wonder. Will there be a new word? Does she understand ours? And then the words form questions. Will she ask me where she left her shoes? Will she remind me to pick up more milk at the grocery store? Will she yell as she runs down the soccer field? Will she ever stress about where her thesis statement goes? And I don’t know. I am the girl who is shaped by words; I teach them every single day. The power of vocabulary. The derivation of a term. The perfect synonym. It turns out, maybe you don’t need them at all. Maybe there is something much more powerful. Something that encapsulates pride and fear, strength, and temerity, sadness, and joy, love, and comfort: being a mother and knowing how to speak to your child that cannot speak. And when they create the word for that – let me know. Follow this journey on The Cheese Bus We want to hear your story. Become a Mighty contributor here.