Deaf

Sibings, Disability and My Brother, Dana

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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 allover 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.

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Only 15 months apart, he felt closer to me sometimes than my life-breath. 

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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. Roll down the mountainside in wild games of tag, twirling, round and round, the old oak trees soaring overhead.
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Through the years, where we lived changed, but not much did within our relationship. Instead of roaming wild on our farm, 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 occasional 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). Twice. Or was it three times? I can’t remember.

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My 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 about two years. It was hard. It was great. We 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”; 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 Swedish farming stock, you understand.

 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. 

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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. 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.

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

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

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 Trekkie who likes her coffee hot and black.
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22 Comments

  1. This makes me teary and so happy. I hope my Cooper’s siblings feel the same way about him. I’m pretty sure they will. 🙂 They already demand that he play with them and keep up with them. It is so reassuring to read the adult feelings of the siblings that don’t feel they were scarred or put-upon or whatever by their siblings with different needs. It is awesome. Thanks for sharing this!

  2. You too being close like you are is grace from God. It was always my deepest dream and prayer…Even when you were just a spark, a wish, a hope before you were even conceived…just as it is your dream for your babies….
    It makes me so happy to read this and see those photos again which bring back so many cherished memories.

  3. I am so moved by this, Meriah. I have tears in my eyes. (See, I can be a cryer!) What a lovely relationship you and your brother share. I am so glad that my Finn has all these older siblings who mostly just see him as one more of them. They don’t seem to see him as all that different from themselves, they don’t treat him as a burden at all (except to the extent that little brothers can be pains in the rear end for getting into one’s Legos and such), and I know that having Finn for a brother is shaping my kids in ways I never imagined. Positive ways.

    Thank you for sharing such beautiful memories, photos, and thoughts. I look forward to reading the rest of this series!

  4. Heidi Ehle Reply

    What an awesome duo I am sure the two of you were…and still are. This is an amazing post, Meriah. Thank you so much for sharing. I know that when I was pregnant with Liddy, I had big concerns about how the two other kiddos would deal with having a sister who was “different”. They aren’t anywhere near as close in age with each other or her as you and your brother but it has truly been enlightening to watch them together. Liddy already has a bad case of hero worship, and those boys adore their baby sister. I shouldn’t have worried. 14 months on this Earth and she has already changed a quiet and reserved 13 year old boy into an outgoing, fight for the underdog, compassionate young man.

  5. This was the most beautiful post I have ever, ever, read. Thank you so much for sharing this Meriah, I was so touched by it.

  6. That was beautiful! *sobbing* What a gift to be loved. I think my daughter and son are the same way.

  7. justsweetserendipity Reply

    Loved reading this! Thank you for sharing the beautiful relationship you have with your brother. It is so touching.

  8. Brit Montrella Reply

    What a wonderful post. Your brother’s words brought tears to my eyes.

  9. Oh, Meriah. This is just lovely. I think my husband heard my sniffled sob a second ago… Woops. So glad you gave Micah his little Moxie.. and glad they’ll both have Boo. I love my sisters like nothing else. (And I get to see one of them tomorrow! Woo hoo! Cora and I are escaping on the train out of here in the morning together for some girl’s time at a lake). Again, lovely.

  10. Mooncalfster Reply

    I grew up in the 70s and 80s with an older only other sibling who was disabled – classicly autistic. In a time where there was no knowledge of what that ment in the wider world, when there was absolutely no sibling supports. I loved Mark and played with him, (until he hit puberty and became violent) but it was traumatic being his sister. Some of my earliest memories are of ABA (applied behavioral analysis) a “therepudic” system which to this day makes me shudder.

    It turns out I was disabled myself, multiply so, at a time before we were good at diagnosing invisible ones. Way before IEPS. I was hyperactive, learning disabled twice over, epileptic. But next to Mark, I looked great. Recently, I also got an Autism diagnosis.

    Today, Mark and I are estranged, our mother compares our disabilities and finds mine wanting. She has come between us.

  11. This is truly the most beautiful post *ever.* The relationship between you and your brother is enviable, and one I hope anyone with siblings has. My brother is 21 years younger than me, and we never lived together, never grew up together. No other siblings. Samantha is also an only child, and, sadly, won’t even have the benefit of cousins or anyone else to grow up with, and that makes me really sad. I just hope she can make some life-long friendships along the way. To be honest, I think *that’s* what scares me most about her disability, something I’m unable to change.

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  16. Yuhan Hudson Reply

    Thank you so much for sharing! I really loved this post. brought a lot of tears and happiness. I really loved the relationship you have with Dad. Although it is a different circumstance with me and my siblings, I could not be able to imagine a single day without them. Siblings are the best!
    Love you Aunty Meriah!!

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