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The last few days, our eldest daughter Savannah was excitedly preparing to celebrate Valentine’s Day. This happens in two parts: exchanging presents and baking for the actual day, then a Valentine’s party with Savannah’s squad on the weekend. Talisa and Eli love this celebration because Savannah’s energy is directed at making them happy. Yesterday afternoon, we should have been enjoying the fruits of Savannah’s labour. Instead Valentine’s Day was not what we planned: Heartbreak.
 
As we are still figuring out how best to help our children through this, I am not going to disclose which one of my children it is. Nor will I explain where this happened and who was involved. We are affording our child who experienced this horrible interaction the opportunity to recover.
What happened was this:
One of my children was in a group with other children of the same age and an adult was present. An unplanned discussion happened about people with disabilities. One person made the following statements:
*People with disabilities should not be kept alive because once their parents die, they become a burden to their siblings.
*If I had to choose between having a physically disabled child and a mentally disabled child, I would choose a mentally disabled child because there are medicines to help them.
*Being disabled is no quality of life because they are suffering.
*What did Reeva Steenkamp see in Oscar Pistorius, because in his normal body he only came up to her waist? 
*People born without limbs are pointless.
 
I can’t write all of what transpired out of respect to my child who had to endure this. The rest of what was said is even more shocking. Up until this point in our lives, Michael and I faced the prejudice, bigots, ignorance, and stupidity as Savannah’s parents. Now Talisa and Eli have to face this. 
I worked in the disability sector. My brother Darren Moodley is an amputee. Our lives have been almost fully immersed in disability issues. Therefor my children do not know what different is. In fact they hold to the premise that everyone has some form of “disability”. It could be emotional, spiritual, something unseen. Most just cover it up well. Yesterday, my children realised just what prejudice looks like. It’s a trident that pierces and causes unbelievable pain. Now they are bleeding. 
As Savannah’s mum, I can’t fully capture the emotional highs and lows I have experienced because I am ill-equipped as a person to support her. I can’t explain all the ugliness I’ve faced within myself. In learning how to be Savannah’s mother, I lost many things and I was never perfect. But always and without a doubt being Savannah’s mother taught me what unconditional love looks like.  Not that I have been good at giving unconditional love myself. God gave it to me and Savannah lives it out for us everyday. Within all my times of complaining and in all my failures and mistakes Savannah only ever sees the best in me.
 
Savannah and I
And that is the greatest gift Talisa and Eli have: their sister loves them and believes absolutely only the best of them. She finds no fault in them. Some would think she is an inconvenience to their lives. Siblings of children who are different know that love and convenience do not go hand in hand. Love is messy, unpredictable, confusing, frustrating, intense, forgiving, rejuvenating, strengthening, courageous, fearless, and necessary. This love teaches them the meaning of life: Mercy and Grace. Talisa and Eli understand this in a profound way that many adults struggle to grasp. When a person is without mercy and grace, then I can only weep for them. What a lonely, painful fall to reality they will face!
 
There is a saying within our community of people who are differently-abled “Having a child with a disability is not the worse thing to happen. The worst thing to happen is to raise a child who is cruel to people with disabilities.”
Savannah and Talisa
Please understand this. The world is changing. Mothers and Fathers and Brothers and Sisters are standing behind the community of People who are differently-abled. We are not sitting in the corners, cowering in fear. We are proudly out and about, displaying the beauty and glory of our community. Please empower your children with what is appropriate behaviour and speech about people who are different. Please ensure that your schools, social groups and religious organisations understand the rights of people who are different. Insist that your children understand and practice basic human courtesy and care. For the love of God, just be KIND!
The world is changing.
For today, my family will weep that we must suffer not because of who Savannah is. Because of who other people are.

I DO NOT CRY FOR WHO YOU ARE (Author Unknown)

Tears have stopped falling
On the fragments of my dreams,
I no longer mourn illusions
Of yesterday’s reality.

Tears that fell so often,
Almost every day,
But that was when the rain poured down
And the sky was always grey.

Now I feel the sunshine,
And the sky is blue again,
I’m living on a rainbow,
But I still cry now and then.

I do not cry for who you are
Nor what will never be
My pain’s in the confusion
And the vulnerability

My frustration’s with a society,
That cannot see you’re mine,
My anger’s to the ignorance,
That will never try.

My fear is from uncertainty
That increases over time.
My guilt is deep inside my soul,
Each time they make me cry.

I do not cry for who you are
Nor what can never be
I cry because they look at you
But never really see

They don’t see how the differences,
Could make the world complete,
They can’t all live on rainbows,
It’s just not meant to be.

You are not responsible,
For all that we’ve been through,
I would not change you for the world,
I would change the world for you.

Wow! I don’t often use exclamations in my writing but Sade’s winning blogs give voice to the experiences we often don’t want to talk about or don’t know how to express our emotions about it.

When I worked as an assistive technology advisor in the disability sector I witnessed so many stories of success and triumph. I also witnessed so much suffering. Both physical and emotional. I think the most complex was when a person with profound complications who was unable to care for themselves, eventually died. People think that the family would be relieved but so often even I, after assisting in as much as I could, would collapse at my desk in tears when I learned that the person had passed away.

Sade’s posts about her brothers tragic drowning at the tender age of three years old, and her mother’s heart wrenching death in 2017 after years of drug addiction; is an insight into the lives of the people left behind. Sade’s experiences of tragedy as a sibling and then later as a daughter, written while she is mommy to her beautiful son gives a face to what people survive to become the best versions of themselves.

Sade understood inexplicable pain already when she was six years old, and watched her family unravel in the face of her baby brothers drowning. Then she lost her mother to drug addiction and eventually to death.

Please read Sade’s beautiful posts and let’s remember that people who become addicts are also just people who are struggling to cope.

Sade thank you for your bravery, your honesty and your life. Your mother gave the world an amazing woman. For that, I honour her and you!

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