Feminine Bureaucrat
Do we require a museum of political stupidity

Sarah: not just an inspiration, more a life teacher

InspireEVAH KUAMIN

| An entry in the 2019 Crocodile Prize Award for Essays

"I know what your weakness is mum!" my nine year old daughter, Renagi, told me the other day.

"Oh, and what is that?" I asked her.

"It's Sarah!" she replied.

I smiled to myself and gave her a really big hug.

"Yes darling, you're right. It's just one of those days."

We all have good days, bad days, overwhelming days, too tired days, I'm awesome days, and I can't go on days. And every day, you still show up.

I know I’m not the first person to say my child with disabilities has inspired me.

My eldest daughter, Sarah, has been bed-ridden for over five years. She had a first diagnosis of TB meningitis, a further diagnosis of hydrocephalus, cerebral palsy and then the most recent, focal epilepsy.

Sarah has been my teacher in life in so many ways. She has taught me courage, hope, perseverance and grace.

Every time she struggles or has a seizure, it makes me think about the times I wanted to give up.

But my Sarah has done more than inspire me. She has pushed me and she keeps pushing me to be a better person. And she challenges my thinking. This is the privilege I have: to influence my daughter and in turn allow her to influence me.

Some time ago, a friend asked me if I found it more fulfilling to parent Sarah rather than Renagi.

She asked what I found rewarding parenting a child with special needs.

I thought about it and said, "Well you see, it's not a luxurious job and it's very tedious and stressing. But it’s my role as a parent to love and care for my child, regardless whether they have special needs or not."

It is not about the rewards being greater, or bigger rather about it being different.

As a special needs parent, I know that I don't have the power to make life fair.

But I do  have the power to make life joyful and as comfortable and loving as possible for my daughter.

This is because I understand that children are not a distraction from more important work. They are the most important work.

When my daughter Sarah fell ill in 2015, she challenged a life that centred around me: my hopes, my dreams and my future.

Suddenly I had to put her first. I cared, and still care, more about her needs than mine. She has helped me become less judgmental because, yes, parenting a special needs child is not easy.

All in all I have been humbled through my experiences and journey with Sarah. Being a special needs parent gives me a different perspective of life. I learnt so much more about myself from having to focus on someone else.

After Sarah's surgery in 2017, she challenged what I viewed as perfect, worthy, important and valuable in life.

I accepted her broken and impaired condition, only to realise that through it all I was the broken one. I began to see her differently.

This was a child coming from hard places, struggling to live each day. I learned that you have to do whatever it takes to fight for your child with special needs. Literally, you always have their heart in the palm of your hands.

Giving up is is never an option, even when things are hard.

I mean, this is my daughter. I have the privilege of being her mother.

My Sarah is a person and she is more than just an inspiration, she is courage, hope, perseverance and strength.

She is a teacher about what matters in life.

You see, when I limit another person to be just a message or a lesson, I take away their relatability and suddenly they are not a person like you and me.

My daughter is capable of making good choices, bad choices, hurting someone's feelings, having attitude, being angry. My child is a friend, a sister, a granddaughter. She has favourite foods, favourite music, her own interests and things she likes to do.

My Sarah can be stubborn and difficult and wonderful and kind. She is a kid, just a kid, nothing more and nothing less.

Sarah has a disability but she has the same essence and God-given image as everyone else. She suffers, she fears, she questions, she sins.

She is not perfect, nobody is perfect. Her message is not more significant than anyone else's message; it is simply hers, unique to her.

My daughter one day might do something that is inspiring, someday she might have a message or a lesson for the world, but it will come from her.

And I can tell you what my child's purpose is, because it is the same purpose that you and I have: to live a life that pleases God, to honour Him, and to make Him known.

It's that simple. My child's purpose is not about me, or you, or her, it is about the God who gave her life.

I am a mother who has slept in a hospital chair, skipped meals, cried from fear and joy. I have become an expert on my child's condition.

I am a strong advocate and have had to make life-changing decisions.

I am the parent of a medically complex warrior.

Comments

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Caroline Evari

What a beautiful story Evah. Sarah's message is already being told through you.

Konio

Such a moving story - it's your story and Sarah's but it has lessons that readers can learn from to be inspired, to pass on, to hold at heart and be encouraged if they have a similar situation. Well written and definitely from the heart.

Philip Fitzpatrick

That's a very inspiring story to read on a Thursday morning Evah. Congratulations on telling it so well. And make sure you let Sarah, and Regina too, know how many readers appreciate them.

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