Why I fight, why I protest, why I keep opening my big mouth

21 Jan

 

For this crazy lot.

I fight for them.

I protest so they don’t have to.

I open my big mouth when they can’t.

It’s not just about Maura and her disabilities – even if there’s more to fight for her than the other three kids. But when I fight to ensure Maura had a better life, I’m also fighting so that her siblings have a better life.

Someday, they will be her caregivers. I know that. They know that. They’ve known that for years.

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photo by Elisha Clarke

Collin, my oldest, has always watched over his littlest sister. He was aware of her lack of progress before most adults were. He keeps her safe. He looks out for her. He always has.

So I make sure that someday, when care giving is left to him, it’s as easy as possible. Which means I fight to ensure that Maura has the best education she can get, learns all the life skills she can. The more independence Maura gains, the more independence Collin will have someday.

I fight to give them both that.

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Sean and Maura 2011

Sean has always been the brother to play with Maura. He he’s been hefting her up since she was tiny. He still helps maneuver her when she can’t. He spent so much time following her on playgrounds, up climbing structures, letting her have freedom I couldn’t give her because of my anxiety. He was always willing to spot her on things, and let her expand her boundaries. He’s always ready to catch her when she falls.

I fight for Maura’s independence so Sean doesn’t always have to spot for her. Even though he always will.

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Mim and Maura after Mass – 2015

Miriam has always been the spectacular big sister. Even when I was worrying that Maura’s disabilities would keep them from having a close relationship, Miriam excelled in her role as big sister. She makes sure Maura gets to have all the fun she wants – and is by her side doing so. If Maura wants a tea party, Miriam will bake the cake for it. If Maura insists Miriam should put on a pink dress, Miriam puts on the pink dress. She is the best friend Maura has.

Someday, Miriam might be Maura’s primary caregiver. For now, I fight to ensure that Miriam gets to be just the sister.

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Maura and Mom – 2014

I open my big mouth for Maura, because she can’t always advocate for herself. She doesn’t have the words, so I speak as her representative. I fight for her rights. I fight for her future. So that she can have what she needs, what she deserves.

Maura deserves as much as her older three siblings. She deserves to have a fantastic life where she reaches her full potential, and is happy.

All my children deserve that.

So I fight for Maura. I fight so we all can win.

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4 Responses to “Why I fight, why I protest, why I keep opening my big mouth”

  1. nanis January 21, 2017 at 3:38 pm #

    Phoebe, I have to honestly say that you are an inspiration for me. Every time I start to think that life is just too hard, you come out with a post like this, and I thank god for how easy my life is. I know you are not trying to be a hero, you are just doing what needs to be done, but you are a hero, at least to me.

    Thank you for this wonderful blog, and for being a role model for me.

  2. 3sistersabroad January 21, 2017 at 5:17 pm #

    We have to keep fighting, speak for those that can’t not speak. Thank you for this blog xx

  3. Sandra January 21, 2017 at 8:06 pm #

    A good friend has a profoundly autistic teenage boy whom I look after occasionally I have profound respect for her and for you as you struggle to get good long term outcomes for all your children. It must always play on your mind what will happen if something happens to you.
    You’re a great mum.

  4. pearliejqueen January 22, 2017 at 10:45 am #

    Fabulous family pictures, well done you.Advocacy is the best present we can give to our children, each other and pour world.A voice for the voiceless.Thank you.

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