I Wish I’d Known All This the Day My Daughter Was Diagnosed With Rett Syndrome

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February 27, 2012 was the day my daughter, Lucy, was diagnosed with Rett syndrome. Almost three years have gone by since then. I remember saying to my husband a week after receiving the news, “Well, a week has passed, and we are still here.” It felt like we literally just wouldn’t make it at times in that first week. I imagine it feels this way for all parents who receive a diagnosis that will change their lives forever. What I wish I’d known that day was that yes, this was going to be a hard life for all of us, but it wasn’t going to be as hard as we first imagined.

I recently read a post by a parent who’d just received the Rett diagnosis, and they rambled off a list of questions, clearly looking for hopeful responses that might indicate their daughter will have a different path than most children with the disorder. Questions like, do all girls have seizures? Does everyone lose the ability to walk, talk and use their hands? Does every child have a rapid regression phase? I’d done the same. I wanted desperately to understand what her specific mutation meant, and I wanted someone to tell me exactly what was going to happen to her. At the time, the uncertain future was mind-numbingly heartbreaking. What is going to happen? That was all I wanted to know.

image1 (1) A lot of things both good and bad did happen. Lucy slowly lost the ability to turn the pages of her board books and then suddenly lost most her ability to functionally use her hands. Her body’s movements and muscle tone suddenly changed to the point where she couldn’t consistently sit up on her own anymore without back support. Lucy’s breathing became irregular, first with hyperventilation, then changing to breath-holding. Gradually, over the course of a year, Lucy lost five pounds and the ability to maintain proper nutrition by eating 100 percent orally and had to get a feeding tube. And last fall, out of the blue, she had her first seizure. I will never deny that these past three years have been hard. Hard for her, hard for my husband and me, and hard for all the other people who love her.

However, in spite of all of those hard things, Lucy has become the strongest, bravest, most amazing human I’ve ever known. We took Lucy to a Rett syndrome specialist who educated us on her condition. Because we became experts ourselves, Lucy was able to thrive. At 2 and a half years old, she began using a communication book called PODD. She learned to nod her head for “yes” and turn it for “no.” She’s learned to use a Tobii eye gaze device in conjunction with the PODD to communicate with us all day long. Lucy is funny and happy and loves Tinkerbell, dinosaurs, Barbies and the Avengers. She rides an adaptive tricycle, makes gorgeous finger paintings, and loves to swim and garden. She tells us when she wants to go somewhere and when she does and doesn’t like things or people or the food I’ve made for her.

What I wish I had known that first day  was that I was going to have to accept a lot of things about life I never would’ve thought possible. But, that I was also going to be constantly surprised and amazed and proud of this child we’d made, in spite of this monster I was just told was lurking inside of her. I wish I’d known that yes, it was going to be hard, but that we could and would handle it. Life was going to suck sometimes, but it was going to make us feel so grateful for the times when it didn’t and when wonderful things happened. I wish I’d known that while Lucy was going to live a life full of challenges, she was going wake up each morning and take them on like some sort of little viking warrior.

I wish I’d known that Rett syndrome would get easier and easier to accept and live with, but that also sometimes my heart would break all over again with no warning. I wish I’d known it would be like that. If I’d known that even though I’d be sad, I’d be very happy, too, it may have been a little easier. If I’d known that life would be hard but so very joyous, perhaps I would’ve felt slightly less anguished. If I’d known that Lucy, by being so brave, would force me to use every bit of strength, patience, perseverance and ingenuity I never even knew I had, I would’ve known everything was going to be OK. If she could be tough, so could I. If she could wake up and smile each morning, so would I. Back then, on February 27, 2012, I just didn’t know yet how resilient we all are.

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For all of January, 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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why You Should Write About Your Traumatic Experiences

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On the day you find out that you (or a loved one) has been diagnosed with a serious illness, you walk down the street feeling like the world has changed. You see the smiling faces of people engaged in conversation, and you believe a wall has now been put up between you and them. You will never again be one of those carefree people enjoying a frivolous discussion with a friend.

And yet, if you could peer into the pasts of each of those happy people on the street, you would find a range of tragedies and obstacles. It just isn’t possible to get too far in life without being touched by divorce, illness, death, financial hardship or violence.

When we think about how we’d react to a diagnosis or when a diagnosis first happens, we cannot imagine life will ever have light, laughter and happiness in it again. As the psychologist Dan Gilbert points out, though, we don’t always take into account all the factors in life that influence our happiness on a day-to-day basis. As a result, we don’t always recognize the many ways those factors will lift us up, even in the saddest times.

When your life is affected on a daily basis by your own illness or that of a person close to you, that illness doesn’t define you, and it doesn’t determine every interaction you will have. When you interact with other people, there are moments of connection, of silliness and humor and contentment. In many ways, the fact of the illness becomes a background condition in life and the day-to-day moments are the ones that affect how you feel.

The Mighty’s stories are a wonderful example of the ways that the lives of people touched by illness are rich. These are not stories of people who occasionally transcend the pits of despair to feel fleeting moments of happiness. These are stories of people whose lives are happy, joyous and fulfilled. On those days when an illness in your life drags you down, these stories are great reminders that many days will be good days.

Of course, a diagnosis is still a shock, and that can be a traumatic experience. Lots of research suggests that these traumatic experiences are stressful and that stress can get in the way of healing.

If you’re feeling that stress, the research of my colleague Jamie Pennebaker suggests that you should write about it. Pennebaker’s research demonstrates that people who spend three days writing about the pain and difficulty of traumatic experiences have less stress later on than those who write about topics like time management.

The idea is that any traumatic event — like a chronic illness — tears at the fabric of your life story. Those disruptions of the narrative of your life cause you to think repeatedly about the problem you face. But these thoughts just cycle without end. Nothing gets resolved.

By writing about the trauma, though, you get it outside yourself. You start finding ways to weave the new information into the tapestry of your life. Over time, adding this information to your life story makes you less likely to engage in that cycle of thoughts. Ultimately, that lowers your stress.

So, don’t just read the stories here. Write your own. Whether you share them with anyone else or not, you are helping yourself to heal.

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If We Had to Go Through It All Again, I Would Choose Her Every Time

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Four years ago, I sat in the hospital holding my 2-year-old baby girl, adopted just six months earlier from Ethiopia, when I heard the word “Leukodystrophy.” I’d never heard that word and was told not to Google it. But I knew by the doctor’s tone, it was very, very bad. If I could take myself back to that day, this is what I would tell myself.

You will cry every day. You will cry more than you ever knew possible. You will cry when you’re asleep, you will cry when you’re eating, you will cry. But then you won’t. You won’t cry every day. You will be surprised when you don’t. And you will smile. And eventually you will smile more than you cry.

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No one will formally give you the diagnosis. You will have to request the hospital records to learn the official diagnosis. It’s too terrible. The doctors and nurses have grown to love you and your girl. No one wants to be the one give you the diagnosis.

You will be surrounded with people who love you. At first. Then they will leave. Your best friends you consider your family. Your church. The ones who should always be there. They won’t be. You will tell them you need them. You are losing your baby. You shouldn’t have to lose your friends. They will say they are sorry. They are busy. They love you and pray for you. They promise to do better. They don’t. You will give them specific ways they can help you if they choose. Maybe they just don’t know how to help. You will forgive and move on, because holding on is only hurting you. There is still pain, but there is freedom in forgiveness.

People you don’t know very well and people you haven’t seen in years will show up in big ways. They will amaze you. You will make new friends because of this disease, and won’t be able to imagine your life without them.

She will outlive her life expectancy. You will have to work. She will continue in school because they love her. Your friends at work and at her school will take care of both of you. They will make sure your freezer is stocked so you have something to eat when you’re too tired to prepare it. They will learn to take care of her so you can work. They will come watch her so you can run or go to the store. They will bring you meals and money for meals while you are in the hospital. You will be surprised at their kindness.

You will have to fight for everything. Even her food. You will be exhausted because she will not sleep. And it won’t be the kind of exhausted that comes with having a newborn baby in the house, though well-meaning people will compare it to that. The closest thing I can compare it to is to being in the PICU every single day and night.

She will get too sick for school. Your friends in other states whose kids have this disease will tell you get a nurse to help you take care of her at home. Your doctor will tell you she is doing amazingly well. You are a wonderful mother. You are a wonderful advocate. You are taking care of her while working full time and aren’t sleeping. You need help. You have to move so you can both get help. You will sell your cute little house and you will move. It will be impossibly hard to start over. But it will be good. She will have good nurses every day and night. She will have good doctors. They will love you and trust you as much as her first doctors did. You will sleep. You will work. You will make friends. You will feel somewhat normal for the first time since diagnosis.

Your life will be so very different than you had planned. But that little girl, the one you are holding, the one who has been so attached to you since the first day she met you, she will be a joy. She will be comfortable. She will be happy. Her smile will continue to light up your life, and the lives of others. You will love her more than you ever thought possible. And you will know that if you had the chance to go back and do it all over, you would choose her again and again.

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For all of January, 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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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During My Talk About Raising a Child With Cerebral Palsy, an Audience Member’s Question Struck Me

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Late last year I gave a talk about my son, Sam, who has cerebral palsy, and myself to about 80 pediatricians taking part in a training day at the Royal Society of Medicine. I had 20 minutes to give “A Parent’s Perspective.”

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They were a receptive audience and gasped (“Sam had 157 appointments last year”) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of perceptive questions at the end. But one really struck me.

“What do you wish you had known, or had been told, when Sam was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and, here, I will expand on it.

When Sam was in hospital just after he his birth, I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman who I’ll call E, who’d expressed for over six months because her child had difficulty feeding.

Once Sam came home from hospital, I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came around for a cup of tea. She told me she thought I was doing brilliantly, which was incredibly encouraging.

Meeting her in the first few months of Sam’s life was hugely important. Her son was different from mine, with a totally different condition, but there were similarities between our lives. For example, the shock of realizing things are not (and probably won’t ever be) as you expected.

Most important, she was heavily pregnant with her second child. The idea that she’d been able to accommodate all the difficulties of her first child sufficiently to decide to have another one gave me hope — that it might be possible to have another child and that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically. It was comforting and fun.

This kind of camaraderie is not unique to parenting a child with a disability – new parents need solidarity and someone who understands the challenges and joys of a brand new baby.But finding yourself talking to a parent of a child with a disability is a bit more niche. There’s huge solidarity and comfort in talking to people who have experienced similar difficulties, who you don’t have to explain everything to. It’s most uplifting if those people are thriving, but actually any contacts will do.

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I’ve since met many other mothers of children with disabilities. I tend to find these conversations are accelerated – there’s no need to do as much explaining. We’ll quickly be discussing private feelings and traumatic experiences. We recognize the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I just have a chat about purely practical matters. No deep connection. Sometimes having a child with a disability in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going well, and I just need to hunker down and get through it and not talk to anyone.

Over the years, these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I’ve valued these connections hugely.

So if I met myself five years ago, I would say, find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours and many who have thrived. You are not alone.

(You could always send me an email)

This post first appeared on Stories With Sam.

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When the Internet Told Me the Way I Talk With My Daughter Isn’t Considered Communication

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helicopter5 My daughter, Mae, is still little, and while she’s had what feels like a language explosion lately, she doesn’t have a large vocabulary compared to your average 4-year-old. If you go her therapist’s word count, Mae’s used her little voice to say somewhere around 200 different words over the course of the last 14 months. Sometimes that’s nearly 50 spontaneous words in a therapy session.

Outside of therapy, it’s different. Outside of therapy, she might only say one word all day long. It might be “mermaid.” She might say it 50 times or hardly at all.

Sometimes now she says, “Help me!” She learned the phrase from her 2-year-old brother. He walked around for a week saying it dramatically. He didn’t want to climb up onto the couch, even though he easily can, so he threw himself on the floor and screamed “Help me!”

She doesn’t say it like he does though. When she uses words, it’s for something serious. It’s for something that she wants so much that she needs to catch my attention. “Help me!” is reserved for important things like trying to convince me she desperately needs to eat a cookie, or 12, before dinner.

mermaidgirl More and more, though, we’ve had other moments, like when she and I “paint” on her bedroom window with water and paintbrushes before she goes to bed, and she begins to say word after word, glancing over at me and smiling widely when I say the right things back.

You see, there are “right” responses and “wrong” responses in these interactions. I need to know the words to play the part that’s expected of me. It’s not a lot. I don’t have to recite Shakespeare.  C is for Corn. W is for Waffle. And M, of course, is for Mermaid. Sometimes it’s just “grape, grape, grape, grape.” She says it; I say it. We revel in the awesomeness of the word. I didn’t know that it was an awesome word until she showed me, but it is. At least it is when she says it.

Some days she brings me a little, worn, wooden caterpillar toy her brother got for Christmas when he was barely a year old. She points to the colors one by one and I say them. Or I look at her and raise my eyebrows and she says them. Sometimes we both say them.

Some days she’s patient with me when I can’t figure out exactly what she wants me to say. Other times she gives me a look that lets me know she can’t believe I still have figured out what it is I’m supposed to be saying. It took me an entire week to get C is for Corn and she had to bring me over the little C letter piece from her therapy session and press it into the palm of my hand before I understood and finally got it right and her entire face lit up with joy.

Last week, after all the kids were tucked into bed, I Googled “scripting.” I’d heard the word before but knew basically nothing about it. I wondered if it was something like what we were doing, since there were clearly phrases I was supposed to be saying. She says something and waits for me to respond back in a certain way. When I get it wrong she repeats it in the same tone and waits again. When I get it right she beams with happiness.

I found an article. And then another. I began to read. And then I closed the browser and set aside my computer. There was a lot of advice there. All of it was devoted to shutting down scripting.  Scripting is not communication, I read. Stop it. Redirect.

I turned the idea over and over in my head. I didn’t believe it.

I don’t believe it. Scripting may not be the type of response or communication that’s being looked for in a given moment, but it absolutely is a form of communication. It might be related to the situation at hand, or it might be a response to stress, an attempt to cope with something that’s hard to process, but you can’t tell me it’s not communication.

When Mae was first diagnosed, I looked around in a panic, desperate to find some way to help her. Therapies and appointments were swirling around us, but I wanted to learn what I could do, how I could help her learn and grow, how I could reach out and bridge the distance between our different ways of processing the world around us. The month after her diagnosis, we were accepted into a study at the local university. It was designed to teach me to learn how to teach her.

In the first session I was instructed to imitate her. Everything she did, every move she made. I copied her singsong little chirps and picked up the same toys she picked up. She watched me out of the corner of her eye at first. And then suddenly she turned and faced me and stared into my eyes and laughed and hugged me and then laughed some more. She was delighted by the exercise, and while the way we were communicating didn’t look like a typical mother’s conversation with her 3-year-old, we were communicating all the same.

skipping That moment changed the way I viewed communicating with my daughter. I could have insisted she communicate on my terms and only my terms. But we wouldn’t have gotten anywhere. She’d been trying to communicate on the world’s terms her entire life and the signals were getting garbled and mangled in the process.  As we progressed in the program there were times when she would use words to make requests, but that initial imitation practice was a safe place we could always go back to if she was feeling overwhelmed.

The advice I’d read about ways to shut down scripting made me feel extremely uncomfortable. I couldn’t follow it.

Here is a child with certain tools, and the only advice I could find was to take those tools away and shut the communication down. If I were to take them away and say “No, you can only use these tools, and you may not be comfortable with them or really be able to handle them at all, but they’re what you’ll use because I say they’re better,” I would likely get nothing.

When we meet in the middle in a place where the language is not solely mine or solely hers, when it’s an amalgam that can only be described as “ours,” that’s where I’ve found the progress truly begins. A look, a gesture, a sign, a squeal, a script, a word. We fit these bits and pieces together, piece them into a language we’re both trying to understand, making sure that neither of us is left behind.

And those moments, the ones when I’m listening hard to what she’s saying without words, also tend to be the moments when she’s happy and relaxed and actual words begin to fill the room.

Slowly but surely my daughter is teaching me that communicating isn’t nearly as cut and dry as I imagined it was before she was born, and that ideas of there being right and wrong ways of getting the point across are incredibly subjective.  And as we slowly make our way along this winding and sometimes confusing path, I find myself less eager to label any behavior as “uncommunicative” and find myself more likely to search for the explanation just beyond my understanding. It’s worth the effort when I finally realize what she’s been trying to tell me and her entire face lights up with the very real joy of finally being understood.

Follow this journey on A Woman’s Place

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Train’s Music Video Gave Me a Mommy Memory I’ll Never Forget

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My 4-year-old and almost 6-year-old came out of the playroom dressed up in matching Princess Tori outfits, little fake high heels, matching Barbie guitars and crowns (that were on crooked). They were, as my 4-year-told me, “ready to rock out!”

She strums the Barbie electric guitar, and the doll’s voice rings out and agrees with her: “Let’s rock out!” Suddenly every mom’s favorite (not) song comes on: “I’m a Barbie girl, in a Barbie world. Life in plastic, it’s fantastic…” My 4-year-old’s service dog is present for the act, too. He’s like the back-up singer; the girls a pink boa comfortably on him. This doesn’t faze him, as he wears his service dog vest every day at school. He watches “his girl” as he always does and wears the boa and every once in a while glances at me — I swear this dog is super-human; it was like we both were thinking, “Yes, the kids are adorable, but, dear God make this song end.” Then again, it’s hard to take seriously a dog wearing a pink boa.

As the song was drawing near: “Imagination, life is your creation,” I saw the concert quickly turn south. My 4-year-old lifted her guitar above her head, alla The Who’s Pete Townsend. My right hand went up as I saw a flash of a pink boa fly by me. “Woof!” Then I heard my oldest daughter say, “Ouch!” Too. Late. Pink boa and I were about five seconds too late. Tommy-can-you-hear-me had planted her guitar flat on her sister’s head. Let the tears and fights begin. This is a normal day in the household of a 4-year-old on the spectrum, a 1-year-old service dog, a just-about-6-year-old (going on 25) and a single 40-year-old mom. This is how we rock out.

After the band broke up, my eldest’s ankle decided to break up. She was bouncing in a bouncy house and her ankle broke… two weeks before her 6th birthday. My daughter had broken this same ankle on the playground one year prior while at school. I couldn’t believe it. She couldn’t believe it. Last time, it wasn’t what they called “severe,” and the cast was off in four and a half weeks. She was brave. I was hoping for the same turn out this time. We went off to Urgent Care, where the people there confirmed the break but also confirmed it was a “for real break.”

The next morning, on my way to work, the orthopedist called and said to bring my daughter to them. So I turned my car around with Audrey and off we went to get a cast at the big hospital. The two toughest parts of the hospital trip were worrying if there would be any shots/needles (there were none) and worrying what color cast to get. Audrey settled with “hot lava pink,” as they couldn’t accommodate her request of “sunburst yellow.” I was nervous and full of worry; she was wearing doctor gloves and goofing off with the hospital staff. She was their “assistant.” She was rocking it. She’d already moved past the broken ankle and was enjoying the thought of showing her cast to classmates for the next six weeks. How Mommy brains and little kid brains operate so differently! She shifted gears immediately on the car ride home to, “I want to stop and get Sharpies so everyone can sign my cast. I want everyone’s autographs.” Of course. What rock star wouldn’t? 

A weird thing happens to you when you become used to rocking out. You actually rock out so much that you stop sharing the news of your world tours. No phone calls, no on-the-road selfies, no live updates. Suddenly it’s you and the team rocking out and doing what you do. 

When my 4-year-old got home, she saw the cast and was flat-faced about it. This is not unusual for her. She ran over to her sister and grabbed the cast and touched it and began to say, “Oh! does it hurt? Did it hurt? You can’t wear high heels! But you can wear a sock. Let me get a sock. A big sock.”.She asked me for a big sock. I a green striped one and we put it on Audrey’s cast. Somehow this is making it “all better.” 

My youngest is singing throughout the whole thing: ” Hey, soul sista! Hey soul sista! Mista mista!” She loves this song by the group Train. She sings it constantly. I thought she would get sick of it. For a while she sang Katy Perry’s “Firework” and then moved on to Train. But she has yet to move on from Train. She totally rocks out to Train. She watches this music video on her Kindle Fire, and she sings at the top of lungs. She loves the dog in the video. The video is harmless and cool to watch, and song is cool (and Mommy likes it, so that is cool, too). Her favorite part is (as she sings it): “lipstick stain… corner of my left side brain… Hey! Soul sista… mista mista! Radio… Stereo… Hey soul sista!” Sometimes she starts the video over before it’s over, sometimes she watches it over and over and over. Other times she just sings it to herself. She just rocks out to it. But when big sis came home with a cast – little sis gave her some soul sista rockin out love by singing to her: : “soul sista! Hey da mista mista… radio! stereo!” That was her version of a Get Well card to her big sister. The best way she knew how.

It got better. “Wait! Wait!” my 4-year-old yelled, ran to get her Kindle and told her big sis to sit down.

Right there on the kitchen floor, the two of them sat. My little one used her little fingers to manipulate that Kindle faster than a speeding bullet. Long behold, there came that dark haired handsome Patrick Monahan (Train’s lead singer). “Hey… hey .. hey…. hey… hey… hey… Your lipstick stains, on the front part of my left side brain. I knew I wouldn’t forget you. And so I went and let you blow my mind. Your sweet moonbeam. The smell of you in every single dream I dream. I knew when we collided. You’re the one I have decided, who’s the one of my kind. Hey, soul sister…” It was awesome.

They sat arm and arm on the floor watching Train and didn’t move a muscle. They’ve seen the video 100 times. My little one rarely sits still. My older one likes other songs much better. But in that moment of arrival home, the older usually well child, who suddenly was not well, sat with the younger special needs child, and they were soul sisters rocking out and loving it out.

And I couldn’t have loved them (or Train) any more.

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