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The Impact of Disability on Siblings : The Story of Dana and Meriah

The Impact of Disability on Siblings : The Story of Dana and Meriah

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Here is the story of growing up with my brother Dana, first published on March 12, 2012.

Dana left this world on Labor Day, 2016.

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I went through the windshield of a car when I was four years old, back in the day when seatbelts were charming accessories. The glass shredded my face, the head-on collision gifted me with brain injury coupled with a quirky auditory processing disorder. My deafness came later.

Events of great magnitude seem to have a way of silencing the world and oneself.

The accident silenced 4-year old me, made me still inside.

I remember the change and I recall my world shifting, the confusion that I felt,the isolating pain of experiencing the shift within others.

The world, you see, doesn’t quite know what to do with little girls with blood-red scars all over their sweet little freckled faces, with their strawberry-blonde hair shorn off their heads. It felt as if the world took one look at me and turned away, embarrassed, muttering something about my “pretty eyes.”

But my brother knew what to do.

He knew me. He had always known me.dana and meriahdana and meriah: a small boy and girl stand, hugging

Only a year apart, he felt closer to me sometimes than my life-breath. 

He knew the person that I was before the accident, the person that I still was after the accident, and didn’t see much in the way of a difference.
He wanted – demanded even –that I play with him, that I be his buddy, ever-ready to hop in a puddle of messy mud on our rural sheep ranch.
dana and meriah: a boy and a girl playing with an umbrella over them
Roll down the mountainside in wild games of tag, twirling, round and round, the old oak trees soaring overhead.

two children hold hands while facing the sea

dana and meriah

Through the years, where we lived changed, but not much did within our relationship.

Instead of roaming wild on our sheep farm in northern California, we were combing the coral reef in front of our house in Levuka, Fiji, then bicycling with wicked speed down the streets of the capital city of Suva.

My vision, always incredibly poor, ceased to be so much of an issue as my coke-bottle glasses were put aside each day in favour of contact lenses.

This, right at the same time as my hearing was getting noticeably worse.

He’d tell me what people were saying, my automatic translator of sorts. I’d simply look at him with a question in my eyes and he would tell me what was going on. It wasn’t a big deal but it happened a lot.

In the meantime, I showed him what I thought to be the “cool” dance moves.

We practiced together in his room with our ancient, giant FM radio.

We had our separate groups of friends – sometimes we ended up all playing together and sometimes we didn’t and it wasn’t a big deal. It was just about having fun.

He made me feel better when I was sure no boys would ever like me. He brushed off my tears when people teased me or when I realized that I was more like Dawn Weiner from the movie Welcome to the Dollhouse than I was Veronica from The Heathers.

Without reservation, I loved my brother more than anything in the world.

Many decisions in my life were made from that love.

My decision to go and live in Taiwan to help him out (or, as I later joked, provide him with slave labour – my brother is a notorious workaholic).

Dana and MeriahTwice.

Or was it three times? I can’t remember.

siblings and disabilityMy decision to major in Elementary Education in undergrad –he did too, and at the same time.

We’d stack up credits, divvy up classes, splitting focus (I paid more attention to the ones I was “responsible” for; we’d compare notes and hold tutoring cram session with one another on our respective areas), which got us both out of University, Bachelor’s in hand, in two and a half years. It was hard. It was great.

dana and meriah siblings and disabilityWe worked well together.

My decision to have more than one child was without question from my relationship with my brother. I couldn’t imagine not giving my child, my beloved little Sprout, a sibling to love and grow up with.

 I just didn’t picture that the sibling I would gift my son with would, like me, have a disability.

I didn’t think that my son would be in the same position as my brother – an older sibling of one who had needs that were less common than most. The doctor who delivered my daughter’s prenatal diagnosis said she’d be a “burden for life”; in his urging us to terminate her life, he told us that we should consider our son, as she would be his burden after we are gone.

It spun me around.

My memories of growing up with my brother… Was I wrong in thinking that my brother and I were such a team? Was I imagining everything, casting a lovely golden glow on our lives simply because they were memories? Was growing up with me really horribly hard for him? Was early life some unmitigated series of various burdens for him? Was I his burden

We’ve never really talked about it, you see. We do not talk about things like that. We’re from that Celto-Scandanavian farming stock, that don’t get into things like “feelings”.

So I asked him. In an email. This is what he said:

I really find the question funny!  Growing up I never looked at you as deaf or scarred.  You were my sister.  We fought about everything but that just brought us closer in later years.  

When we were young you had a hard time understanding other people and in many cases even mom and dad which made you naturally look at me and I would say the same thing again and you would get it. You naturally taught me to speak slower than most people and clearly.  

Growing up I really never thought about it as a chore or looked at you as disabled in fact I thought you were tough and courageous. I remember teaching you how to fight and then you decked that big Fijian girl who was teasing you.  You really didn’t let anyone push you around! 

When we were young maybe because we moved quite a bit we weren’t able to develop a lot of friendships with others so it was basically you and me – partners in crime.. [here he talked about crime stories I don’t want known]

I have so much to thank you for – your “disability” taught me so much growing up – to be more patient, understanding, and protective… you are and always will be my little sister. 

***

We become so scared of the unknown in our cozy American world. Scared of what we don’t know – and disability is such a great unknown for most of us.

When a doctor tells us that our unborn child who has received a prenatal diagnosis of a disability (- be it Down syndrome or another) will be a “burden” for other children, for ourselves, it so easy to slip into the fear those words bring.

Because, well, we don’t know what it’s going to be like.

And yet… in the end, what is a “disability”? Isn’t it just a different way of functioning?

Not necessarily any more or less of a burden than we make it to be.

I think the real burden is living in a world without love. 

The Impact of Disability on Siblings

And that is something my son will never be burdened with.

________________________________________________________
Dana, I miss you.
dana and meriahRead More

this was the last photo of us that I have. He took it on his phone and sent it to a friend of his who posted it on Facebook after Dana died

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Meriah
Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a cat-loving Trekkie who likes her coffee hot and black.
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Gemma

Wednesday 5th of September 2018

Wow. That left me feeling all emotional! What a fabulous team, you and your brother. He sounds like a great partner in crime to have. I too have a disability, I was born with mine. I have a younger sister, it’s easy to feel a burden, but I think that when you’ve always known a person, they just are what they are to you. We all have differences. Lovely piece, thank you for sharing.

Kali Williams

Thursday 24th of August 2017

Meriah it's a bit after 3 in the morning and Lord knows how I found myself here! I don't know. Perhaps it was my love of your words or the photos of your beautiful babies. But THIS post...wow... I'm trying to cry quietly less my husband grow suspicious ('Looking at pics of Jason Momoa again...wondering what could have been?!' Cause, that's been known to happen.)! I love this! I love you! I love your brother...! I love everyone after reading this! And that's what it's all about, right? Spreading love? Thank you. And thank you for sharing YOU! XOXO

Meriah

Thursday 24th of August 2017

thank you, I love you, Kali. xox

Kelly

Monday 14th of August 2017

I am so happy for you that your brother resumed your sibling bond as is. My daughter suffered a severe TBI as the result of a horrific car accident but her older sister hasn't been as accepting as your brother. They are now 19 and 21 but I hope that with time their relationship will improve.

Meriah

Monday 14th of August 2017

when did your daughter's accident happen? when they were children or later? xo m

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