Her Rare Disorder Could Have Done 1 of 2 Things to Our Family

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image2 (1) Dear Alagille syndrome,

You have snuck into our lives like a thief, determined to cause fear and pain. You shocked us with your presence in our daughter. We weren’t aware of you or the other lives you’d filled. After we discovered who you were, we wanted to deny your presence. You looked far too scary, and we didn’t believe we’d survive you.

You have came with the intention on bringing havoc in my daughter’s body and in our family’s life. You’re difficult to manage and so rare that our own doctor didn’t know who you were. You’re different in every person, making you unpredictable and difficult to treat. You’ve created an invisible pain itching in my daughter’s body that causes day-and-night suffering. You keep her body from growing and thriving. You keep us from sleeping and resting. You threaten so many parts of her that it’s hard to keep up. You came to destroy and steal the joy from our lives, but we won’t allow it.

We realized your presence could either destroy us or make us stronger. We reached a crossroads, where we wanted to give up, but instead we were given the strength to keep going. Since we’ve made that choice, our lives have changed for the good. We’ve grown so much stronger. We’ve witnessed amazing love. We’ve connected with other families you’ve affected, and those relationships have enriched our lives. We’ve felt so determined to combat the troubles you cause that we became driven to advocate about you and other rare syndromes. We want to prepare our daughter for this life with you by reminding her that you don’t define who she is. You are just a part of her; you aren’t her.

Out of this desire, we began creating encouraging apparel for families affected by rare diseases and disorders. We know how difficult it is to live with you and know there are more syndromes out there like you trying to discourage others. We hope to be a voice that lets everyone know they don’t have to be afraid — that they can use other syndromes like you to become who they were made to be, that they can use you to do something amazing.

Alagille syndrome, you thought you would take the best of us, but I’m happy to say you haven’t. You’ve lit a fire in us to help and support others. You’ve changed the lives of our family and friends. You’ve given us the opportunity to live with a great purpose. So for that, I say thank you.

Sincerely,
An Alagille Mom, Kristen

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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When I Thought My Daughter’s Muscular Dystrophy Crushed All Our Dreams

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Dear Congenital Muscular Dystrophy,

You came into our world and crushed all our dreams. You changed the way we perceive a lot of things, the way we think about a lot of things. You forced us to alter our definition of “normal.” You made me cry rivers and gave me heartache I didn’t know was possible. Then you broadened my mind, my way of thinking.

Between January and September 2013, I would draw pictures in my mind of my daughter and her soon-to-come sibling holding hands and walking side-by-side, chasing each other around the house, laughing and playing. Then you stormed into our lives unannounced and walked all over my dreams, ripped my heart out and told us you were here to stay. Forever. I didn’t quite grasp that initially and did everything in my power to ignore you, pretend like you were not there staring me in the face all day, every day.

Eventually I guess you grew on me. I learned to accept your presence in our lives and started to see that maybe you weren’t entirely to blame for my misery and distress. Once that happened, you started to gradually alter my perception of my dreams. My daughters still laughed and played and held hands. You showed me it wasn’t you who crushed my dreams — I, in fact, crushed my own dreams when I was ignorant enough to believe that Celine’s entire life depended on bipedal locomotion.

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You shed light on Celine’s incredible mind, her bubbly personality and her sense of humor, which was apparent before she even turned 1. You reminded me that it was the brain that achieved miracles, not the legs. Walking is merely a form of transport, and if her legs can’t transport her, a wheelchair will do the job.

I feel bad for despising you so much initially, CMD. I can’t say I love you or that I don’t wish you would miraculously disappear, but I don’t think your so bad anymore. You’ve only been with us for 18 months, so maybe it takes more time; maybe I need to put in more effort to accept you, but I’m doing everything I can. Maybe over time as Celine achieves more, I’ll build more strength and be able to put in more effort. Maybe. I don’t know…

Sincerely,
Celine’s Mama

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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 the Decision to Blog About Your Special Needs Child Is Never an Easy One

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“Don’t wash your dirty knickers in public.”

My grandmother’s advice is ringing in my ears. I was brought up not to talk openly about private family matters; it was very much frowned upon. That’s why my recent decision to start blogging about my son’s birth brain injury (hypoxic ischemic encephalopathy or HIE) hasn’t been an easy one. 

I’m filled with doubt and questions. Should I really be doing this? What would my son, Leo, want me to do? What will he think if he reads it when he’s older? Which parts of this story are mine to tell and which bits belong to him? 

In the early days just after his birth, I knew there was a risk that any blog would be driven by too much pain, too much raw emotion. I thought of my grandmother’s advice and was afraid to embarrass myself. But the thing that’s always frustrated me is how little people on the outside understand what this journey feels like. How little I understood what it was like until it happened to me.

Leo is now nearly 3 years old, and it feels like the right time to talk. It seems everywhere I go, I’m reminded that it’s something I must do. 

For example, today I took my son to the hospital dentist. As we waited for our turn, the door opened and a woman came out with her adult son. He has cerebral palsy and was in a wheelchair. I could see they looked stressed; they were having some sort of disagreement. “Mum, I can do relationships!” he shouted. Immediately, she started whispering at him to be quiet. I tried to make eye contact, to smile at them. “It’s OK,” I wanted to say to her. “You don’t need to feel awkward in front of me, I am one of you!” But she didn’t see me, and they left.

I know from an outside perspective my child probably doesn’t “look” disabled. You can’t see the scar on his belly from the feeding tube, I don’t carry around the telephone book-sized piles of medical notes we have at home. At first glance, you wouldn’t know the journey we’ve been on and the challenges we face. I feel caught between two worlds – the disabled community and the “typical” one. I don’t know where I fit.

Our culture tells us that disability can be easily spotted – we’re told that all people with cerebral palsy are like this, all people with autism are like that. We assume that disability is fixed, that it’s black and white. It isn’t. Disability can be a changing picture, things can go forwards and back. It’s difficult to put it in a box — it’s complicated and confusing. Perhaps this is why as parents we shrink away from labels. Labels are one way of cutting through the confusion, a short hand to help explain it all, but they don’t really mean much to us. They don’t describe our children.

When I think of my son’s label – HIE – I realize he’s just one small part of a diverse group. In wanting to tell my HIE story I know I can’t possibly encompass it all, I can’t do it justice. There’s no way I can describe what it’s like for everyone who finds themselves with an HIE diagnosis; all I can do is say how it is for us.

As parents of children with disabilities, we must be brave and bring our stories out into the light. It’s only by showing people what it’s really like that they can start to understand. Maybe they aren’t listening, maybe they don’t want to know. But at least if we try, we’re beginning to break down stereotypes and build a world where the word “disabled” doesn’t feel so alien.

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3 Years Ago, My Letter to Autism Would Not Have Started This Way

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Dear Autism,

Thank you.

I know, right? I’m just as surprised as you are. If I’d been asked to write this letter a few years ago, it might have started out more along the lines of “f*&ck you.” Amazing how much your perspective can change in just three and a half years.

That’s right. It’s been three and a half years since you first officially entered our lives. Three and a half years since my son was first diagnosed “on the spectrum” (pervasive developmental delay – not otherwise specified).

A lot has happened in three and a half years. My son has grown and learned and changed. I’ve grown and learned and changed. The others members of our family (my husband and my daughter) have grown and learned and changed as well.

This morning, I was dropping my kids off at school. We stopped outside my son’s classroom so I could help him change from his boots into his sneakers. We got one shoe on successfully, but just when I thought we were finished, he looked me in the eye and said, “Mom, my shoe is uncomfortable. Can we try again?”

Let me break that down for you. He looked me in the eye. He spoke to me using words. He used those words in a calm voice. There was no yelling. There were no tears. The uncomfortable shoe remained on his foot as he waited patiently for me to respond to his words. It didn’t get yanked angrily off his foot. It didn’t get thrown across the hallway. It didn’t get pounded against the floor, the chair or me.

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As the mom of a child on the spectrum, I see my son face challenges every day. His brain is wired differently, so there are many things that come easily to others (making eye contact, using words to express feelings, remaining calm in a stressful situation) that are challenging for him. And you know what, autism? That used to make me really, really mad at you.

I’m not going to lie, I’m still a little mad at you for all the challenges you present to my son. It’s not fun to always be thinking and troubleshooting about how the little bumps in the road and unexpected schedule changes are going to affect our predictability-obsessed little guy. But I’ve gotten to the point where the joy I feel in witnessing my son overcoming his personal obstacles far outweigh the stress of those moments.

So now I’ve told you about the challenges linked to my son’s neurology. But, that’s not all there is to you, is it, autism? That same neurology that makes some situations and tasks so difficult is also at the root of my favorite things about my son. The way he vibrates with bouncy, flappy excitement when he’s engaged in an activity he loves. The way he explodes into giggly, chortling belly laughs when he finds something funny, even when it’s something he’s seen or heard a million times. The way he gives hugs so powerful he almost melts into me. The way he says, “I love you, Mommy” with such complete devotion it leaves not one inch of doubt.

And so, autism, I can safely say that while I don’t enjoy the ways you make my child struggle, I can appreciate the satisfaction and pride that comes with seeing him overcome obstacles. I can appreciate the joy that comes from small accomplishments I might have overlooked if they hadn’t been so hard-won. I’m grateful for the opportunity to love someone who engages in the world in such an intense and uninhibited way.

I’m also grateful for the way you’ve helped me grow and learn and change over the past three and a half years.  As I’ve done what I’ve needed to do to help my son be successful on his unique path, I’ve become more empathic, more flexible and more patient. I’ve learned to accept and even embrace things I know I can’t change. And I’ve learned to passionately advocate for things I can change. I’m proud of the person I’m becoming, just as I’m proud of the person my son is becoming.

A lot of that growth is because of you, autism. I don’t know what the future has in store for us, autism… but if the last three and half years are any indication, I know you will provide many opportunities for us all to learn and to grow into people we never dreamed we could be.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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Angelman Syndrome Is One of the Biggest Influences in My Life. And I’m OK With That.

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I’d never even heard of you until Sean was 7 months old, but you were there all along. Actually, that’s when I learned you weren’t there. How could one little gene on chromosome 15 matter so much? We have something like 24,000 genes in our body, so how could missing just one little gene cause so many problems? Thanks to Dr. Harry Angelman’s discovery, we call you Angelman syndrome.

I struggle with my relationship with you. I hate you for what you’ve done to my son, but I love my son for exactly who he is and can’t imagine him any other way. Because of you, Sean will need 24-hour care throughout his life. I’ve never heard him speak a single word, and I know he has so many thoughts he’d like to express but struggles to do so. You’ve come close to taking his life with seizures. He’s had several surgeries and countless hospitalizations.

Without you, I wonder what kind of mom I’d be. When I became a mom, I became a special needs mom. I don’t know what it’s like to parent a child who doesn’t need your constant presence. You affect our entire family and every major decision we make. If Sean wasn’t missing you, what would his life be like? What would my life be like? Would my marriage be any different? How have you shaped my other children’s lives?

But I’m certain of a few things. I see the world differently now. I’m a better person for knowing you. I don’t sweat the small stuff. Life is all about how you handle plan B, and I know how to wing it. I have a deep appreciation for the amount of work it takes to achieve what others may take for granted. Sean began walking independently last week at age 14! I know you’re one of the reasons my marriage is strong. My younger three kids don’t know life without you. You have no doubt shaped their character traits. They too know how to go with the flow. They’re compassionate, caring, sensitive and loving individuals.

I think about all the amazing people you’ve brought into my life, not just through mutual connections we have but because of other genetic anomalies. I was inducted into a special club. I went in fighting, and now I can’t imagine leaving. These people have enriched my life in unimaginable ways. I’ve formed lifelong friendships with moms and dads, teachers, physical therapists, occupational therapists, speech therapists, music therapists, aquatic therapists, doctors, nurses, pharmacists, case managers and even our UPS delivery guy who delivers all of Sean’s supplies with gentle care.

It doesn’t do me any good to think about the what-ifs had our paths never crossed. You’ve been one of the biggest influences in my life, and I’m OK with that. I wasn’t always OK with that, but I am now.

Sean’s Mom

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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Don’t Be an Autism Troll

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My class informed me that I’m a troll.

At first I thought they were referring to a hideous creature that hides under a bridge in fairytales or the troll from Harry Potter or maybe Fiona from Shrek. Then I learnt it was for another reason.

I told my class I was going to post a discussion forum online between 9 p.m. and 9:15 p.m. so they could pick tutorial subject options. I created the discussion but forgot to hit the “publish” button. Unfortunately, some kids were still awake at 11 p.m. waiting for me to publish it. They said they could imagine me sitting at home laughing like an evil super villain. So now, I’m the internet troll teacher — someone who causes trouble on the Internet just for fun. IT WAS AN ACCIDENT!

Why am I talking to you about this? I’m now going to introduce you to a weird creature — a twisted, nosey, irritating creature. This creature is the autism troll. Autism trolls lurk in the workplace and sometimes, in your own family. They may strike at any time; they will blindside you, and try as you might to forget it, their comments resonate.

One autism troll was a family member. Upon learning that Mr. H had been diagnosed with autism, the troll declared, “Oh yes, I know.” Um, how would you know? “Oh, you can just tell something is wrong with him.”  Boom, troll tries to make a hit; it grazes the chin, but Mom bounces back. I’d been obvious to me that something was going on with Mr. H, and it was probably obvious to some other people, but you don’t say that out loud!

Another autism troll’s habitat is the workplace. Upon informing the troll that Mr. H had been diagnosed with autism, this troll used the opportunity to tell everyone about the diagnosis and inform my boss I wasn’t coping in the workplace. Boom, troll tries to make a hit, but Mom deflects. Not much damage done. Lesson for that troll: Don’t mess with me! Believe me, I took care of business there.

The final autism troll I’m going to discuss also lurked in the workplace. I was in the staffroom, photocopying and chatting when a lovely non-troll asked me how Mr. H was doing. I explained things were going great and out of nowhere the troll said, “My husband has been doing some reading and do you know your son is autistic because you got him vaccinated?” Boom, troll makes a hit. We’ve got a stunned mom down, we’ve got a stunned mom down. All I heard was “Did you know you gave your son autism?” I’d never been spoken to like that before. Dear friends have asked me about the link between vaccinations and autism, and we’ve had some discussions but, I mean, who says that?

What you say and how you say things to a parent of a child with a disability does matter. Be a friend, ask questions, be supportive, but don’t be a troll.

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