Stronger than…

Were I to wax metaphorical about her strength, to your ears it would sound like so much hyperbole.

No, I’m much too close.  I have borne witness to it, stood in its light and been seared.  I can’t be trusted to pace myself with any poetic flair, so just the facts…

Two pure souls brought into this world, and I see her instantly transform into a person that would pay any price to see them flourish.

Stronger than childbirth.

The devastation of learning her child will not flourish, not like other children.

Stronger than a metabolic diagnosis.

The endurance to cultivate the skills of speech and eating and walking and… when typical development is not promised.

Stronger than her child’s developmental challenges.

A pillar keeping the family upright while I repaired confidence in my professional career.

Strong for me when I am weak.

The utter lack of any hesitation to sacrifice flesh, ingest poison, absorb radiation, anything to be there for her family.

Stronger than cancer.

When faced with anxiety and depression she inevitably chooses the third option, to go forward.

We’ll beat this too.

Hello, is this Catherine?

Yes.

Hi Catherine this is S from Dr. C’s office. (sigh) Are you at home?

That bad huh?

Is anyone home with you?

Not now, but there can be soon.

That will be a good idea. I have your pathology report. I am so sorry, it is breast cancer.

 

I have breast cancer. Stage 2,  grade 3,  invasive ductal carcinoma.

I am having a hard time forming complete sentences from my thoughts and feelings, please bear with me. This post might be a bit of a mess. I’ll start with the fact I am not going to die from this. The cancer I have is very treatable and, fortunately, caught fairly early.

As soon as I heard “cancer”, I knew this was not going to beat me. Becoming a parent changes you. It changes how you value your own life.

My first thought was my husband. This man is a rock. He absorbs punch after punch and continues to carry his family and care for them with selfless tenderness. I have never met a tougher more confident person in my life. My first thought went to him: “I can not leave Dan to do this alone.” We are a team.

My second thought: “My girls need me.” Period, nothing more needs to be said.

My third thought: “I can beat this and still hold my new baby.” Exactly 3 weeks before this phone call we were celebrating the heartbeat of the new edition to our family. At the time of the phone call I was 10 weeks into my pregnancy.

We just endured an exhausting 10 days of doctor’s appointments, medical procedures and heartbreaking information.

• Wed: Breast needle biopsy
• Thu: Pathology results. Cancer.
• Fri, Sat, Sun, Mon: Process and inform loved ones.
• Tue: Surgery (morning) and Oncology (afternoon) appointments
• Wed: Perinatology consult, geneticist and ultrasound… unfortunate order because fetus has no heartbeat.
• Thu: Process and inform loved ones.
• Fri: D&C.

We were heartbroken over the loss of this pregnancy. It had been a light in the storm, something to guide us in the midst of cancer treatments. However, there was also a strange sense of relief at this loss. The heavy worry of saving my life and not harming my little bun in the oven was lifted off my shoulders. Dan and I were handling this stab to our hearts like we always do, together and with our eyes set on the future. We drove to the hospital for the D&C and I was scared. Not of the procedure itself, but of how I would feel after it was done. What will this do to me?

I woke up in recovery and all I felt was peace, closure and contentment. I was happy with my life and the two beautiful girls we have. I was ready to move forward and kick cancer’s ass. I suspect there will always be a little pain from this loss and I am at peace with that.

What’s the plan now? That is a two step process:

1. Epic spa getaway with my childhood best friend. More like sisters than friends.
2. Gloves on, hands up and knock the hell out of cancer.

The good far outweighs the bad in my life. My husband, oh Dan, I don’t even know what to say. My partner, my strength, my laughter, my love…you are my everything. (thank you for my new Kate Spade handbag and spa getaway!). This PM convo sums it up:

Do you know that you win father and husband of the year, every freaking year?!

#islay

I couldn’t do this fight without you.

I got you.

Always.

We have a long list of family and friends waiting for a word, any word, that would indicate we need help. Warriors waiting and ready 24/7. My wonderful parents drove down with only a days notice. I have two beautiful little packages of joy and hope, Natalie and Cara.

We’ll need love, understanding, patience, laughter and wine drinking buddies during this fight. What we don’t need is sympathy. There is a fight ahead but we are a happy and fortunate family. We aren’t new to medical battles and we’ll beat this too.

 

 

Afflict the comfortable to comfort the afflicted

With the diagnosis of PDH deficiency Cara is the victim of a staggeringly unlikely series of unfortunate events.  While it would be momentarily palliative to use this occasion to restate my own agnosticism that would be self centered and counterproductive. However, this event has still prompted me to think about what we as a family need to thrive going forward. We thankfully find ourselves in a wellspring of medical support and therapeutic interventions, but given there is no cure we’ll continue to need emotional reserves and spiritual support for the long road ahead.

Of course, pity and platitudes will not get us to where we need to go. I would even go as far to say that we don’t need friends on this journey insomuch as we need allies.  Conscripts in the fight to carve out a corner of the world where life need not be as difficult for Cara as it would otherwise be.  A place where folks have the courage to practice empathy. Simple actions like dropping the word “retarded” your vocabulary, holding the door for someone in a wheelchair, or joining the “Carawatts” our Energy for Life Walk team.

Innovations have a hard time flowing from environments where there is a culture of denial of the problem space.  You don’t have to bring solutions to the ongoing difficulties faced by those among us with atypical abilities. Having the conviction and awareness to not be part of the problem is enough.

Diagnosis

Leaving baggage claim and still high on our magical Disney vacation, I look at my phone and notice I have email. At the top, is an email from Dr. K, “DNA results update”.

We have a diagnosis.

After over four years of testing, waiting, testing, waiting and more testing and more waiting, we have a diagnosis. A year ago samples of DNA from Cara, Dan and myself were sent to Utah for full genome sequencing. A mutation was found in the “PDHA1 gene that encodes one of the proteins in the pyruvate dehydrogenase complex.  In other words she has pyruvate dehydrogenase (PDH) deficiency.”  We knew from previous tests, how she presented and her response to the ketogenic diet that there was an issue with pyruvate metabolism. Thanks to Dr. K, Cara has already been on the treatment plan, the ketogenic diet, and has been responding as we hoped. The other piece of news we received is that neither Dan nor I are carriers of this gene. This was just really poor luck for sweet Cara.

Pyruvate Dehydrogenase Complex Deficiency (PDCD) falls under the umbrella of Mitochondrial Disease. Walking at The Energy For Life Walk in Seattle on October 4th just took on a new meaning.

We received the news 2 days ago. I knew I wanted to write something but I have been, and still am, at a loss for words. Yes, it is nice to finally have an answer and to know that neither Dan nor I carry the gene and that Natalie is in the clear. At the same time, there is a deep pain in my heart for Cara. The pain is not new, it’s been there since the beginning. Most of the time the pain is in the background but it came rushing to the forefront this day. I am in a place that is hard to articulate – not happy, not sad, not angry just a “Yup, this is where we are.” I guess it isn’t that I am not feeling any one of those particular emotions, but rather, all of them at once.

 

 

Hey Cara, You Are 5!

My dearest sweet Cara,

5! You are 5 baby girl! Two days ago you had your first very own birthday party. We had so many friends from all parts of your life come to our house to celebrate you. The theme was The Wizard of Oz. You know that song you love so much, “Over the Rainbow”? That song came from the movie The Wizard of Oz! Everyone came because we are all so proud of you and we love you. Do you know what happens when someone welcomes you into their heart? You bring sunshine and a beautiful rainbow into their life. We all came together and celebrated the last 5 years. Celebrated getting through the scary parts, the ouchie parts, celebrated the happy parts, all the words you can say, all the things you can do, how you can scoot around the floor, how you pull things down from the windowsill, how you like to bother Natalie, your love of books, the messes you make, the faces you make (oh the faces!), the tickles, your laugh, all the joy and most of all your love for paper! We celebrated all of it because it is all a part of your journey and a part of you. Everyone came to celebrate our journey with you. 

There has been a few scary times. I am sure you have seen mommy cry, daddy cry and worried faces. I bet you have seen a lot more smiles though. I know sometimes there are needles and scary machines, but I bet there has been more times with giggles and toys. I know therapy can sometimes be hard, but I bet there has been a lot more fun! I know doctors like to move you around, touch you and their hands are cold! You know what else they like to do? Talk to you, smile at you and give high 5’s! I bet they would even like to give “knuckles”. Yes, there has been scary days and sad days, but many many more happy days. You makes us all so happy and are such a big helper through the tough parts.

Happy birthday my sweet treat! Here is my birthday wish for you: I wish for you to stay silly and keep using your voice! There might be more sad, scary and ouchie times and I can’t wish those away, but I can wish that there are many many more laughs, smiles and tickles. Silliness is always fun and funny! Tickles are pretty silly. We are a pretty silly family huh?

You have a beautiful voice. I love hearing it. “Voice” can also mean letting people know what you think and how you are feeling. It can be crying, it can be shaking your head no, even a big smile can be a voice. You are really good at letting everyone know if you like or don’t like something. Sometimes you say “yes!” and sometimes it is just a big huge smile. Sometimes you shake your head and sometimes you look scared and start to whine. Sometimes your therapists ask you to push buttons on your talker to let us know what you want to do or how you are feeling. All of this is your voice. It is really important to have a strong voice and you have one. Keep using it even if it feels like sometimes we don’t listen. We are listening, even if you say “no” and something still needs to happen. I promise you, we are listening and we want you to keep telling us.

I have another birthday wish: I wish that you will always feel like we are proud of you, just the way you are. However you get around, whether it be with wheels, a walker, on your feet, crawling or someone carrying you, we are proud of you. However you talk, whether it is through your stink face, talker, crying, or words, we are proud of your voice. We are proud of how you eat and taste, whether it is through your tubie, with a spoon, your fingers, big bites or little bites, we are proud of how you eat. We are proud of you! I don’t ever want you to feel like we are sad or disappointed because you don’t do something or do something differently. We are so proud of you and we know how hard you work! You make us very very proud.

So, CareBear I love you. I know I say that all the time and it is because there is just so much love that I just need to tell you. I love you.

Happy Birthday big girl! You are 5!

With all our hearts and lots of tickles,

Mommy and Daddy

Goals: A Toxicity Spectrum

By one definition, a goal is a promise to internalize a sense of failure until some future instantaneous moment of achievement… that may never come.  It is all too easy to focus on the achievement and overlook “the process” as the primary source of benefit from the practice of goal setting.  It is all too easy to lose sight of that component vector of true success and enrichment when monetary gain and social consequences are attached to an outcome, not the process.

How anyone could land a job at Facebook, a new house in the bay area and not find happiness is a long story…

#SuckItAetna

Commit Count != Impact, but…

…suffice to say I had several things that kept me moving forward after the stark realization that the future required backtracking.  I have an irreplaceable, indomitable rock of a woman by my side that kept the ship running at full speed in my emotional absence.  I had wonderful colleagues at Facebook that afforded me every opportunity to grow and excel at the company.

In retrospect, the goals of “working at Facebook” and “living in ‘The Silicon Valley'” were point accomplishments disconnected with the momentum and trajectory of the past 10 years of my career.  For the first time in my life I had set a goal, achieved it, and not moved “forward”.  It was actually entertaining at first, watching from a distance as my arrogance was mercilessly obliterated in an open field.  Decidedly less so and frightening when that faceless predator rounded on my self confidence…

In any event, I am happy these days.  Getting back on track with full awareness of my abilities and limitations is inexplicably empowering.  However, the point of telling this story is not as a cautionary tale of navigating the technical job market.  It’s a point of reference on the toxicity spectrum.  Yes, the ubiquitous American pastime of setting goals and achieving dreams has downsides.  To a parent of a special needs child, this folksy sentiment is exceedingly venomous.  “Goals”, to a parent of a special needs child, have the capacity to be more destructive than something that makes you move to northern California for a year.  The consequences of wielding goals incorrectly in this context are devastating and the method of deriving any benefit from them at all is counter-intuitive.

It is the rare person that, when I tell them my daughter may always need a feeding tube, may never walk, or talk, does not fall into a bargaining-denial loop probing me for a happy ending.  “Please, could you be so kind as to excuse me from my budding feelings of sadness and helplessness?”  Inevitably, when the questions cease, they end up making a face that is half pity and half annoyance that I don’t know how to play the “Blind Hope and Reassurance” game.  However that’s when I get to feel pity for them as yet another person who sees life as a bag full accomplishments… akin to how small children measure the spoils of their Halloween trick-or-treating.

No, as the parent of a special needs child I have no use for disappointment or anxiety, dreams or hyperbolic positive thinking.  It’s a quantum super-position of emotional states where my wife and I are hell bent on the pursuit of eating, walking and talking while having absolutely zero attachment to the end game.  Every step in that direction is another fruit ripening on the tree.  If a certain branch stops growing and no more fruit comes we pause, step back, give thanks, and take pride in our beautiful tree.  She has earned the right to never feel “I am a disappointment to my parents.”

…and then we notice “hey, what’s this new little branch over here doing?”.

So, the old adage “Never lose sight of your goals” is completely backwards.  *Always* lose sight of your goals, be on the lookout for branches that bear more fruit, and pray that you never reach the end.

How to Not Be a Dick to the Special Needs Community

But first, a test to find out where you land on the spectrum.  “Please don’t use the r-word (retard, retarded, -tard suffix, etc), it’s hurtful.”  If your response to that request is “ok.” then go ahead and move on with your day.  Sure, you might gain an insight or two about the community by reading this article, but you are likely in no jeopardy of ever being perceived as a dick with such carte blanche respectfulness.  If your response is “why?”, that’s actually great.  You may find some salient points here to help you probe that question.  Though, if your response is “sigh, why! …just another example of political correctness run amok!” then, sadly, there is a high likelihood that you are a hopelessly irredeemable asshole.  This article may be a waste of time for you.  The curious thing about people that espouse the PC-run-amok position is that they wear their ignorance and lack of basic human empathy like a badge of honor.  This loud proclamation is so very helpful, it makes PC-detractors easy to spot in a crowd so I can disassociate, de-friend, and distance myself from them and my family.  Please leave.

Ok, now that we have the right audience, let’s proceed.

Step One: Please don’t use the r-word, it’s hurtful, just find another word

Truth be told in 2004 when the Black Eyed Peas rephrased their song from “Let’s get retarded” to “Let’s get it started” my honest initial reaction was disappointment.  I’m ashamed that it took 6 more years and someone handing me a membership card to the community that finds the r-word offensive for me to finally see how fucked up that reaction was and to see how insidious and poisonous that word has become.  There’s no better article I’ve seen than Catherine’s on the R-word for illustrating why that word feels like acid poured directly on the heart.  I can only hope that if a friend had sat me down and explained it to me I would have made the change earlier, hence this article for you.

Now if you read the above and still say, “but ‘retard’ just means ‘slow’, I do not mean any offense by its use, it’s just english”.  Sure, I get it, you’re straining to rationalize your word choice because you’d rather feel righteous indignation than guilt.  Just be aware of the massive power imbalance of you being able to choose another word and the special needs community’s modest request for respect while they deal with an affliction that has no cure.  Please default to being respectful when it costs you nothing lest you be perceived as a dick.

Step Two: Accept the fact that you too are disabled

Don’t believe me?  Then please proceed with me to the dance floor where we will perform a Cha Cha routine.  I imagine many of you saying “Oh, I’d never do that I would look totally retar… …foolish”.  By the way, thank you for catching yourself.  Yes, it’s a simple fact that we many times avoid attempting tasks that make us look foolish.  Now imagine that the tasks that revealed your disability were the ones we take for granted for living life.  Beautifully complicated tasks like maintaining balance while sitting and motor planning to grasp an object.  Truth is, those of us without neurological impairment are granted the gift of not having to consciously hold our frame and balance while sitting.  “Retarded” is deprecated as a medical term precisely because it is actively ignorant of reality.  Someone with neurological impairment appears “slow” attempting this simple task, but what that term denigrates is the beautiful capacity of neuroplasticity and the feat of compensation taking place to actively maintain body stability, route around the brain injury, and find another way to do what we all take for granted.  Be thankful for the privilege of avoiding tasks that make you appear disabled.  When you do attempt something where you feel foolish I hope that people offer you encouragement and understanding as you struggle, those that don’t you can rightly call a dick.

Step Three: Maintain a healthy skepticism of your ability to classify people as inside or outside of the special needs community.

Some families struggle for years to find out what is afflicting them only to lay a child to rest before being granted a label.  Others are lucky to get the label and, similar to how you and I actively hide our own disabilities, do their best to keep their disability private.  Sometimes they do such an effective job of pushing through the pain that they are rewarded with nasty-grams from people that believe they are committing fraud when they consume disability resources.  Rest assured that borrowing your grandmother’s disabled placard or renting disabled children to cut in line at Disneyland most definitely makes you a dick.  However, the only time I would trust your judgement to identify such abuse is if you witness Lebron James slipping into the last disabled parking space while Stephen Hawking is forced to circle around.  Outside of that I cringe at the injustice of you clumsily and literally adding insult to injury.

This cuts even deeper for parents of children with behavioral disabilities.  Sans a wheelchair people tend to turn off their compassion for disabled persons.  It’s sad and perverse that I occasionally feel grateful that my daughter has an obvious disability compared to the struggle of parents with children on the spectrum of behavioral disorders.  Certainly, for disabled and unaffected families alike, there is nothing more annoying than unwanted parenting advice.  Shocking, yes, well meaning *advice* can be unwanted and uncomfortable.  With that in mind I can only imagine how painful it is for a parent when that “advice” becomes admonishment and blame.  More obstacles lobbed in the path of a family struggling for and mourning a “normal” life.  Please don’t be a dick to these warriors.

Our lives, yours and mine, special needs or not, are already hard.  Just try your best to not make things worse for someone else.  Apologize if you make a mistake.  Be comfortable feeling uncomfortable that you don’t fully understand what special needs folks are going through.  Try your best to be respectful and you will easily be considered part of the solution.

I feel Lucky

While at physical therapy with Cara on Friday, I saw a little boy, with the use of a walker, take his first steps. He must have been around 3 to 4. His mother had her hands over her mouth and her tears flowed silently. For a few moments, I sat Cara on my lap and together we watched the boy slowly move his walker forward. He made sounds that didn’t resemble words, his hands grasped the walker in an awkward way and his steps were slow. It was a beautiful sight. His face and voice filled the entire space with joy. I squeezed Cara and let myself fill with hope. On our way out, I couldn’t help but put my hand on the mother’s shoulder but a large lump in my throat prevented words and all I could manage was a smile. She patted my hand and nodded in understanding and appreciation. My tears broke through the moment I shut my car door. There is a powerful connection between parents of special needs children that transcends all differences and divisions. I don’t know this boy or this family, but I was so proud of him. She has never met me, but she knew what I wanted to say. I know that this mother and I see a beauty that many are oblivious of. We are some of the lucky ones.

The world is full of “retard” jokes, people laugh at those they feel are lesser than and many selfishly navigate the world with little to no awareness of people around them. When I witness this, initially I am angry, but at the end of the day I feel lucky to have had my eyes opened and heart softened. I feel lucky that I see beauty in a special needs/differently-abled child or adult. I feel lucky that I feel hope and pride when I see a special needs child take his first steps. I feel lucky that I see the awkwardness of those steps as more beautiful than the grace of a ballerina. More powerful than an Olympic sprinter.

A couple of weeks ago I took Natalie with me to Cara’s appointment with her neurologist. Sitting in front of us in the waiting room was an older girl with special needs. She wore a bib to catch her drool, her hands curled closed, she kept turning around gesturing at Cara and saying, “baby! baby! baby!” in that stereotypical voice we all made fun of (and some still do). When the girl left the waiting room to go to her appointment, Natalie looked up at me and said “mommy, that girl was really nice.” My eyes filled with tears of pride, I just hugged her and said “yes, she was a really nice girl.” I feel lucky that my eldest daughter saw this girl as just nice and nothing else.

Being a parent of a special needs child is very hard. It is a lifelong roller coaster of constant highs and lows. I have never felt so sad, happy, hurt, angry, hopeful and hopeless as I have in the past 2 years. Most nights I go to bed exhausted. I can’t remember who I was before I had Cara and my world is not the same place. But, I am lucky. I am lucky to be the mother of a special needs child. I am lucky because there is beauty in this world that only someone who loves a special needs child can see. We, as parents of special needs children, are lucky because our children have made this world a special place for us.

Why not?

On April 13, my family and friends will walk in Golden Gate Park for hope, for energy and for life. We are walking to raise funds for research for mitochondrial disease. Walking to raise awareness. Walking for more effective treatments. Walking for a cure.

It has been months since my last entry. I would like to wrap up 2012 and write our thoughts for 2013 and that entry will come soon. Right now, it is more important for me to reach out for support and donations for our upcoming walk. It has been hard for me to come up with what to write. I don’t like asking for anything and I like asking for money even less. When I start to think about it, I realize that I gain nothing from your donation. Nothing, yet, everything. I, personally, do not need a cure for mitochondrial disease. Yet, I feel like there is nothing in the world I need more. A cure means my daughter’s life. This is why I am asking without reservation and with pride. This is why I am asking you now, please donate. Why not?

Cara is doing wonderful on the ketogenic diet. Over the last 8 months she has not only regained skills she started to lose, but can babble, roll, sit with less support and is interested in exploring the world around her. For those that knew Cara before we started the diet, you know how amazing this is. There was a time where I wasn’t sure if I would ever be able to hold her on my hip and now she can sit in a toy car by herself. She still needs basic head and trunk support but she is gaining strength and control over her body very quickly. The diet has completely turned things around. As long as Cara has mito she will need to continue the diet for the rest of her life. The neurologist that is keeping tabs on her progress and maintenance while on the diet looked me in the face and with a clear voice said “This is not a cure.”

Cara, despite the neurological damage that has caused her current difficulties, is a healthy and happy 2-year-old girl. This diet is not a cure. There is still a chance that Cara will have a rapid decline in health. All it takes is one bad illness, a high fever, pneumonia, an infection or the diet is suddenly not enough. One bad illness that throws her out of ketosis, her acid level rises to levels that are difficult to control, her seizures are not manageable and her body is not able to create the energy it needs to continue. One bad illness or infection could easily mean I lose my daughter. There is no other treatment options. There is no cure.

The vast majority of children that show symptoms of mitochondrial disease at a young age to do not live past their teenage years. Many do not live to see their teenage years. The abnormal MRI that started us down this road was at 4 months. Cara is one of the lucky ones. We have the keto diet that has made a huge difference and hope and pray it continues to, but, it is not a cure.

We are happy to help Cara overcome all difficulties she will have in life due to the damage that has already been done because of this disease. We are happy to be her legs if she needs them, be her voice if she needs it, fight for her, help her live life to the fullest. We are happy to do everything we can but we can’t cure her. We can buy equipment, drive to therapy, meet with doctors, be vigilant to prevent her from getting sick. We can’t cure her.

I have a feeling that there would be more and higher donations if Cara were “sick”. That is too late. There needs to be more awareness and funding for more treatments and a cure before the fight for life. We need to enter the fight with more to fight with, or better, not ever get to that point.

I have read too many stories of those suffering from this disease that lived years, even decades, feeling full of energy and healthy only to suddenly find themselves in a wheelchair, tube fed and their bodies quickly shutting down all in a matter of months. I have read too many stories of children that seem healthy then after the flu, pneumonia or an infection take a trip to the hospital and never leave. Too many stories of too many lives lost.

This is not so much of a rare disease as it is an unknown disease. Every 30 minutes a child is born that will be diagnosed with mitochondrial disease before the age of 10. Half of those with mitochondrial disease are children who showed symptoms before the age of 5 and 80% of these children will not live to the age of 20.

The organs effected most by mitochondrial disease are the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Mitochondria are responsible for 90% of the energy our body needs to sustain life. Mitochondrial dysfunction has been linked to autism, Alzheimer’s Dementia, Parkinson’s disease, Huntington Disease, Amyotrophic Lateral Sclerosis (ALS), deafness and blindness, diabetes, obesity, cardiovascular disease, stroke, multiple sclerosis, Sjogrens syndrome, lupus, rheumatoid arthritis and even cancer.

My daughter has a disease that is progressive, fatal, very limited in treatment options and without a cure. I don’t know what else to say to encourage you to donate. If you haven’t donated already please ask yourself: Why not? Any amount helps.

If you are in the San Francisco area, we would love for you to join our team and walk with us. If you are not in our area, you can join our team as a virtual walker and help us collect donations and spread awareness.

Please support the Carawatts as we walk for awareness. Walk for treatments. Walk for a cure. Walk for hope, energy and life.

http://www.energyforlifewalk.org/sanfrancisco/carawatts

“R” word

I have been thinking a lot about the word “retard”. It’s a word that I used all the time to insult, make-fun and when joking around. It’s a word that rolled off my tongue with little effort and little thought. This is the problem, I didn’t think. It took having a special needs child to realize how much damage I caused to the world and to myself by saying retard. I made myself and the world around me less sensitive, less caring, less loving and less accepting. It is shameful that it took Cara for me to realize this. Shameful that we are comfortable making fun of special needs children and the differently-abled. Shameful that we, as a society, are not only comfortable with this but we laugh.

Think of what a retarded person looks like. Picture this person in your mind. Helmet? Involuntary movements? Drool? Speak with a slow muffled voice? Maybe they walk funny? Maybe they laugh funny? Remember how you would imitate a retard as a kid? These images you laugh at are real children. These images you laugh at are children that face challenges that would likely break you. These children conquer these challenges and continue to love life. They don’t judge you for making fun of them.

There are children that struggle to walk and coordinate their movements because the damage in their brain causes abnormal muscle tone. These children fight through hours of therapy a week. You should see them, they look totally retarded.

There are thousands of children and adults on feeding tubes because they aren’t able to or it is dangerous to eat like we do. What a retarded way to eat.

There is a little girl who brought tears to her parents eyes because she said “ma ma” years after the rest of us did. You should hear her though, she sounds so retarded.

There is a boy who is bound to a wheel chair, the simplest things make him laugh and he will need someone to care for him for the rest of his life. He is such a retard.

There is a disease where children have seizure after seizure and the only way to stop them is a medically induced coma. Many of these children die due to these unrelenting seizures. What a retarded way to die.

There are children that will go to school and be called names, have items thrown at them, laughed at and ridiculed not only by the children that attend the school but by parents. Oh my god, they are so retarded.

The way retards talk. The way retards move. The way retards look. The way retards live. It is all so funny isn’t it? The struggles they face and ugliness people throw at them is just hilarious. I mean, look at how they die? Look at how people have to care for them? Look at how much joy in life they have despite how we all make fun of them?

We all pray that our babies wont be born like them. We all pray that our lives wont be plagued with this burden. So, why not make a joke of it? Why not just throw around an offensive term because we don’t mean harm?

Just because we don’t mean it to be hurtful doesn’t mean it doesn’t hurt. Just because we think we can separate our jokes from a real community doesn’t mean you aren’t causing damage. Just because you haven’t called a special needs person a retard doesn’t mean that you aren’t making fun of them. ;What exactly did you mean when you thought you looked “so retarded” in that picture you didn’t like of yourself?

Why do you want to use the word? You don’t know? Why use it? Use another word, or try a compliment.