The Pen Is Mightier Than the Sword, Second Edition
I wrote the first part to this piece six years ago and shared it a few times since then on other platforms. Today I am sharing a further edition for the first time on A Million Beautiful Pieces.
As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability (Savannah); it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is Grace that keeps filling my life with Faith, Hope and Love.
Then there are those who are embarrassed that now they know what they would rather not know, and try to make me feel bad for writing it. I can’t help you besides suggesting that you stop reading my work.
I am forty one years old. Of that time I’ve been a mother for twenty-three years to a child with a disability, while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.
That’s twenty-three years of facing social systems that let my family know how inconvenient it is to include our daughter with a disability. Twenty-three years of reading cues in social gatherings and religious gatherings of whether we are wanted or not. Or how long before they push us aside when they realise that Savannah is a 24/7/365 commitment for us, and they absolutely will not be made to feel awful because they can’t commit to having her for a few hours.
Twenty-three years of being condescended to or asked to stop overwhelming people when we try to educate them. (Notwithstanding that I’ve been overwhelmed by the weight of my life for as long as I can remember, and the added weight of feeling guilty when requesting help to survive my life). Twenty three years of giving people the benefit of the doubt, only to have Savannah made fun off by those who were entrusted to care for her when I needed time out. Twenty-three years of having to deal with mothers who let me know how grateful they are that their children aren’t like Savannah. There’s that pat to Savannah’s head and pronouncement that ‘They are such a blessing.’ I keep thinking to reply ‘I hope God blesses you as much as He has blessed me.’ But my fear of extending the unwanted encounter holds me back.
Twenty three years of still having days when I go to bed weeping (less frequently now), frustrated or lying awake at night wondering what will happen when Michael and I are no longer here. So why do I keep writing about the hard stuff?
Simply because I am still inspired by my children to leave behind encouragement and evidence for them to know how hard we tried. I write so that my children will know I tried to change hearts and minds. In my first edition of this post, I wrote that gaining Acceptance within society was the reason I wrote. Now, in the aftermath of the Esidimeni tragedy, and the continued lack of services and support our community faces, I write to remind other families that we are not alone. And I write for every parent who prays for God to call them home with their child; because the isolation and constant fight for services and inclusion in society imposed by people can be too much to bare. While we bare up against it all, I hope to offer some comfort.
My other children Talisa (almost seventeen) and Eli (almost twelve) are older now and by too much experience, their hearts are finely tuned to discern discrimination against their sister. As Christians, they use the frequency of our faith which is the Bible. It’s a sad day or a glorious one (whichever way you choose to look at it), when your children can explain the love of God in spite of the callousness of people, including fellow Christians. This is not an attack on any faith. Just our plain truth.
When I was pregnant with Talisa, someone thought to say to me that I should keep the new baby away from Savannah as she might learn Savannah’s weird habits. When we attend social events as a family, it is always amazing to Michael and I, that there is almost always someone who wants to give us advice for Savannah. Usually it’s to attest to us that God can do amazing things and He will make Savannah whole. I feel like crying every time we hear that because of severe lack of insight that statement contains. The testimony of God’s sufficiency to my family does not need to be proven by Savannah being made into anything other than to be exactly who she is. His sufficiency is proven in our diligent commitment to her care and well being, even on days when we are overwrought by her complex and beautiful mind, and that we do it again and again. That’s a testimony of faith.
Through the years, I’ve learnt that most people need Savannah to be made into their understanding of God’s goodness for THEIR faith to be affirmed. It feels like they see Savannah as broken and someone who should be “fixed” to match their idea of a whole person, so that they can feel affirmed that God is good.
But in this house we learnt a secret. Savannah is a remarkable beauty; fearfully and wonderfully made. While everyone forsakes us, judges us, dismisses us, persecutes us, reminds us how we can’t fit in their carefully organised systems; we know a God who gave us a rainbow as a sign of hope. One who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Love. One to whom my children speak to like this:
‘Thank you God for the patience you give us. Now please can you give the same to the parents who are racing in school traffic when we are all going to the same place at the same time’.
Or‘Lord, thank you for Savannah. I realised today that she does an amazing thing. She can still choose people who won’t choose her’.
Or Savannah’s prayer, ‘Lord, Thank you my life. Please help man with crutches at church. I feel sorry for him. Thank you my dad, Tali, Eli, my mum. Me have good life. Amen.’
And at the end of this long and taunting week because I let ignorance pierce my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different, and with a special verse:
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 gray.
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.
Father, forgive them for they do not know what they do. Luke 23:34
With all the Love that I’ve found in the Million Beautiful Pieces that make my story, Desirae