Thursday, May 2, 2019

If You're Worried Your Child With a Body Difference Will Feel 'Different'

You have a child who was born with a body difference, maybe even a disability. Or maybe they were born with both.

Doctor's appointments.

Specialists.

A diagnosis – or even several diagnoses.

Medications.

Surgeries.

Pain.

This isn't what you envisioned for your child.

You introduce your child to the world and you get mixed reviews.

Joy.

Uncomfortable stares. 

Love.

Harsh comments.

Why aren't people more compassionate? Why doesn't the world see your child the way you do?

Oh sweet moms and dads, I see you. And I hear you.

"Will my child be accepted by the world? Will they always feel different because of their physical difference and medical complexities?"

Those questions cry from my screen more often than not. And living with a facial difference and medical complexities with rare diseases myself, I hope I can offer a few words of encouragement.

Born with half a purple face caused by a port wine stain birthmark, and Sturge-Weber syndrome, there was no way to avoid the world's stares and comments. My parents instantly started to hear them the moment they took me home, and as a married 27-year-old, I still hear them today – and so does my husband. They're unavoidable.

My image was once stolen online and I went viral to 30 million people around the world, and I was cyber bullied as a result. I've been called names. Doctors have refused to treat me because my birthmark "got in the way."

In addition, my difference doesn't just affect my appearance. It affects my bone structure, my teeth and gums, my brain and eye. I've had glaucoma since I was 8 years old and I've had about 53 laser surgeries. Migraines started when I was 6 because of the birthmark's affect on my brain (which is really caused by blood vessels), and I've had a neurologist on-call since. There are gum bleeds, nose bleeds, and root canals.

My story? My medical condition? Yes, sometimes they're hard. It can be frustrating. And sometimes it's complicated.

But oh my lanta...Let me tell you.

My life has been beautiful. It is beautiful.

Yes, sometimes there is pain. Sometimes there are surgeries and root canals and specialists. Yes, there is fear I may lose my vision one day – and yes, I do take medications for the migraines my condition causes.

But do I always feel different? No way.

I mean, I have my moments, don't get me wrong. It's nearly impossible to ignore people staring or making unkind comments about my appearance – even though I have embraced who I am, as I am. But day-to-day? I can and I do forget that I'm "different" than the rest of the world.

As a child I grew up with a family that treated me just as that...A child. They never treated me any differently just because of a physical difference.

Yes, they had to take precautions with sun exposure on my face in the summer and they couldn't protect me from the world's hurtful intents. But my childhood wasn't just full of surgeries and eye exams. My photo albums and memories are filled with images of me playing with Barbies, traveling to the family farm in Florida, and swimming every chance I had.


As a child, I mostly forgot I looked different. I mostly forgot I was medically complex. I would go to the hospital, do my thing, and go home to my life – school, friends, toys, and laughter.

While sometimes it makes me hit pause, my medical conditions never stopped me from living my life.

It wasn't until I was 18 years old and in college that I realized my "normal" isn't most people's normal – and even then, it took a really big moment for me to have that light bulb moment. Most people haven't experienced the same medical complexities and surgeries, needing the same surgeries and receiving the same diagnoses at such young ages. And the stares and comments I get on the regular? Those aren't a part of most people's stories. Yet, it's my normal. It's my childhood, my medical chart. It's my everyday, my story.

I know everyone's story is different, and I can't speak for everyone with a body difference and/or a disability. I can't tell their future and what their story will write, or what their health journey will hold. That's impossible. All conditions and disabilities affect every body and child differently. But, my hopes are that your child has the same beautiful kind of life I've had.

I hope they have days, months, years, and seasons where they forget about being "different" because they're living in their normal...A normal filled with love, friendship and laughter – with a few appointments and surgeries sprinkled in-between. And I hope that feeling different doesn’t come until much later, if at all.

Because at the end of the day, they're a child first. Medically complex second.

And will your child be accepted by the world?

In a perfect world, yes. But sadly, we don't live in a perfect world.

That being said, maybe not by everyone. But that's OK. Your child? They're accepted by you. They're loved by you.

Keep loving them. Keep encouraging them.

Don't just focus on their medical charts and upcoming procedures.

Remember to also invest in their passions and talents. Remember to take them to the family farm in Florida, and to take them swimming every chance they have.

Make them the very best, well-rounded human they possibly can be.

Because with your love, your encouragement, and your investment in what makes their hearts sing?

...How can they not be loved by this world?

The Travelin' Chick,
Crystal

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