But For a Simple Twist of Fate

Tell me-Is she not the same as any other child happy to be on a swing?

Tell me-Is she not the same as any other child happy to be on a swing?

By default, having a special needs child, BEING a special needs child, makes you immediately different. For some, the differences are very obvious-a cleft palate, facial deformities, dwarfism, Down syndrome, wheelchairs-these things jump out. Most people think these things are jumping up and down, waving their imaginary arms shouting “Look at me, go ahead and stare, forget your manners, I’m different. Come on offend me, go ahead, ‘cuz I’M DISABLED.” There are people who are literally afraid of our disabled children, like it’s possible to catch it. I’ve had people walk across the street in order to avoid my child. People who freak out because there’s a bib to catch drool, or because some children can’t control their movements, or their tongue is always thrusting out. But, they don’t get it. I want to shake people sometimes and say “Ya know, but for a simple twist of Fate, this could be YOU!”

So, while it’s important during this month of Rett Syndrome Awareness to highlight the truly horrific things that our children go through and what families go through, I want to take a moment to make people aware that just because our children are “different”, doesn’t meant they aren’t the same as others in many ways.

Our children feel deep emotion. They are so empathetic and caring. They cry when they get their feelings hurt. They smile smiles a mile long when they are happy and surprised or a cute boy walks by. They get mad at the same things that make others mad-they are made to do something they don’t want to, someone is mean to them, they don’t get to watch TV at 2am (just kidding, I think this is specific to Rett Syndrome, lol), they want to stay in bed on a rainy day and can’t. Our children get lonely and sad and miss people when they’re gone.

Our children have favorite things. They have favorite colors (Katie’s is orange), they have favored people, they have favorite foods and foods they can’t stand. They have favorite animals and books and TV shows and movies.

Our children love to be the center of attention; they like babies and puppies and presents. They laugh at funny things, and think farts are just about the funniest things there are. They like to be hugged, they like to be talked to and don’t like to be left out. They get hurt, fall down and get up, over and over.

Some like to swim, ride horses, go sledding and swing. They go hiking and camping (or not). They have preferences, wanted experiences, unwanted experiences, some love the snow and others, not so much. THEY ARE JUST LIKE YOU AND ME.

So, next time someone thinks our children  are silently screaming “HEY YOU, bet you’re afraid of ME in this wheelchair, ha ha” or “Come on treat me like I’m an infant, even though I’m 21, ” I’d like them to remember that but for a simple twist of Fate, my daughter could be them and they her, instead; inside, in our children’s hearts and minds, where it matters the most, they are just like everyone else.

A long time ago, I wrote a poem about me being white and my friend being black and while it’s not the “same” as being “disabled and non-disabled” the sentiment is very similar-we are really all the same despite our outward differences.

But For a Simple Twist of Fate

On the Serengeti, I am sure, the drums

Beat with his heartbeat, one-by-one,

While mine keeps time with Irish song

Echoed in forests forever gone.

Our ancestors came upon the waves,

Mine as immigrants, his as slaves;

And though the struggles of our families

Are not the same-this I believe-

That, but for a simple twist of fate,

We could be the other’s race,

And though we are different in many ways,

This man is my brother, just the same.

Yes, his skin is black and mine is white

But we both have the same birthright-

To live in Freedom without fear,

To laugh, to love and to care.

What matters to me the color of his skin?

It’s more important to look within;

And in his soul I believe I find

One that is gentle, sincere and kind,

One that welcomes my children in

And doesn’t care about the color of their skin.

So, even though we are different in many ways,

This man is my brother, just the same.

For we each try as best we can

To believe in the brotherhood of Man,

We hope, we pray, that in the end

No one will care about the color of Men

And one day all will see

That each is a part of Humanity,

And that but for a simple twist of fate

We could be the other’s race.

So, I do not care about the fact

That I am white and he is black

Nor that we are different in many ways

This man is my brother, just the same.

M. Lancaster

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