God Archives | A Million Beautiful Pieces

Disability Advocacy September 27, 2019

The Pen Is Mightier Than the Sword, but Kindness transcends them both

I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece.

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; 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 almost forty-four years old. Of that time I’ve been a mother for twenty-five years to a child with a disability, and two more children while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.

That’s twenty-five years of facing social systems where it has been inconvenient to include our daughter with a disability. Twenty-five years of reading cues in social 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?

Twenty-five years of giving people the benefit of the doubt, only to have Savannah made fun of dismissed by those who were entrusted to care for her. Twenty-five 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-five years of still having days when I go to bed weeping, 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, and that being kind is still worth it. 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 also write to remind other families that we are not alone.

While we bear up against it all, we can be united and be a source of comfort, hope and information.

Like the way, my children comfort each other when they are made uncomfortable because their sister is different. 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 other people.

Sometimes callousness takes the form of being given unsolicited advice. Other times it’s to point out to us, in Savannah’s presence, that God can do amazing things and He will make Savannah whole. I cry every time we hear that because of the 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. 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. His sufficiency is when Savannah comforts us, and when she laughs and loves freely and without restraint. That’s a testimony of faith and sufficiency.

After twenty-five years of this, I’ve learnt that many people need Savannah to be fit into their limited 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.

From left to right: Talisa, Eli and Savannah

But in our home, we know a secret. Savannah is a remarkable beauty; fearfully and wonderfully made like her siblings. While the world is designed to forsake us, judge us, dismiss us, persecute us, and remind us how we can’t fit in with their carefully organised systems; we know a God who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Kindness. A God 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 lady with walker at church. I feel sorry for her. My dad is sick. I am stressed about him. Look after my sister, my brother. Help my mum. Amen.’

When ignorance pierces my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different:

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.

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

My Story March 27, 2018

This is my story

I am a motivational speaker, an aspiring author and a blogger. I love, love to write but I had no idea that in my fortieth year, I would find the courage to take up my mantle as a full time inspirational speaker and writer. I did not begin my adult life planning to become an inspiration but God had his own plans for me.

I grew up in an unhappy home and by the age of eighteen I became a mother. Being a teen mother was painfully difficult but learning that my daughter, Savannah was diagnosed with cerebral palsy was even more so. It was a torrid period in my life. I was married and divorced by the time I turned twenty one years old. I mourned in silence the loss of my hopes and dreams for my daughter and for myself; as I slowly came to grips with the reality of her diagnosis.

Teenage pregnancies and sex outside marriage was frowned upon then just as much as it is now. It’s still astonishing to me that even now we don’t do enough to address the “why” young women look for love in all the wrong ways in the wrong people. My own self loathing and self doubt coupled with the taunts of those around me should have destroyed me. The assumptions that I would not be able to parent a child, and more so be capable to parent a child with a disability, chipped away at what little self-esteem there was left in me.

I have journeyed a long way from the 18-year-old who thought she always had to do what everyone else deemed right for her. I was forced to do what was right for Savannah first and in so doing I slowly learnt to let go of everyone else’s expectations of me. Being Savannah’s mother meant learning to fight for her in ways that took me to the ends of myself. I had to learn to parent her while I was still trying to figure out what being a whole person meant for myself.

This is an incredibly difficult thing to do, even for parents who planned their lives and had everything go according to that plan. It is a complicated struggle to figure out who you are as a parent when your child has a disability. Sometimes the battles are not just with other people. The toughest battles are often the battles that erupt within us. As a parent of a child with a disability, it was incredibly difficult to fight my own preconceptions and expectations of who I wanted my child to be. I am still learning all the time, as each new season unfolds how to accept the life that lies before me.

Savannah has become an inspiration to many people from many different communities, but non more so than to me. She is also autistic and struggles with complications from her physical disability. She is the reason that my husband Michael and I met and fell in love. We have two more children: a daughter Talisa (16) and a son Eli (10). Savannah’s life continues to test my faith in God, in myself and in people and over and over again I find that Faith, Hope and Love remain.

I started out as a parent at eighteen and went on to carve out a most unique career that is diverse as it is fulfilling. From talking publicly about raising my family in the face of disability, to working as an assistive technology advisor, to being a motivational speaker, to using my skill as a speaker to host events and to conduct trainings in various sectors; I found so many beautiful pieces in these experiences that make up this life I live today.

I was chosen as a South African to Watch by #SA Bloggers for 2018 and I was awarded the Most Inspirational Blogger by the #SAMommyBloggerAwards.

My family lived through more heartaches and struggles than my 18-year-old self could have imagined she would survive. And yet I did.

I learnt that life is frail and must be handled with care.

I learnt that there are heartaches that will never be healed, but living with a broken heart doesn’t mean you are broken.

I learnt that people need people, but not everyone wants to be the person who is needed.

I learnt that unconditional love is real and a rarity, and I am blessed to know it.

I learnt to trust the process.

I learnt that people are always more important than things, always.

I learnt that God does not give his strongest fights to his strongest warriors. He helps normal, everyday people to face their difficulties and He never leaves them.

I learnt that…… my true self…… is made up of A Million Beautiful Pieces.

To book me for an event please click here:

This Is What I Do

My Story February 5, 2018

The Safe House

‘‘Twas the night before school began and all was solemn and all was sad”.

Well that’s how it felt in my house. Talisa and Eli were feeling nervous as they prepared for grade ten and grade five respectively. Eli, a little more so because he was also beginning his school year in a new school.

My Story December 12, 2017

Peace be upon you

I matriculated from a Catholic School where mass always ended with Father Dryden’s greetings “Peace be upon you”, to which we replied “and also with you”.

Over these last few weeks that greeting resurfaced in my memory. In the middle of a storm in my heart that greeting became a rainbow. A promise of something I thought I would never know: Peace

As an ordinary Christian for the last 17 years I read many times about the Peace that Christ left for us. But I never understood it because in the reality of my life, Peace seemed like a fairytale.

This year has taught me so much about people, about love, about acceptance, about family, about my roots and about God.

I have spent too many years of my adult life trying to emulate the women around me especially the leading ladies in churches and the ladies in my social circle. I was never as miserable as those times in my life.

I felt more lonely, confused and wretched when trying to fit into their ideas of being a woman. As a parent to a child with special needs with a constantly changing diagnosis, I was always on the outside of their circle anyway and it took a mammoth effort on my part to just engage with other mothers.

Every now and then I’d be brought in from the outside of the circle for a hug and a measured out pouring of love which I gratefully accepted as my portion. Every now and then a head bowed in my direction in recognition of my potential. But when I asked for what I really needed or bared my very sad soul, their inability to handle my truth taught me then that as a woman, wife and mother, I was on my own.

This year, for the first time ever I found strength in that. Mentors are great when equality and respect flow both ways, but sometimes, for some, the only mentor good enough for the job, is God himself.

Now I’m no great theologian or scholar of the Bible but I’ve understood profoundly and soul deep that my life has been moulded by a master craftsman. I’ve survived too much heartache and have overcome unbelievable challenges for me to believe anything less.

This year was our greatest challenge as a family but we attended five weddings, three bridal showers, gave four parties and showed up for my extended family and friends whenever we could. I served on a board for an NGO while also being employed in a job where I witness deep heartaches and sweet miracles daily.

All this sometimes on too little sleep or no sleep; sometimes with a couple hundred invisible band aids on my fragmented soul I showed up and gave my very best every time.

As I recalled Father Dryden’s greeting, I realised I learnt a great truth this year. I finally knew what Peace felt like.

It is to accept the path before you, to look at it intently and to embrace it bravely.
It is to acknowledge that it will be frightening but not impossible.
It is to know that I don’t have to know everything and trusting that whatever comes, I am enough to handle it.
It is giving myself permission to walk away from what makes me miserable and to embrace what makes me strong.
It is finding myself again in dance. Allowing the music to move my body and help me turn bad energy into something beautiful.
It is to accept that some of us can’t be defined by anyone else’s interpretation of God’s plan. We are only defined by communion with Him and the courage to live our lives outside of the circle that others seek comfort in.

And even knowing this, sometimes in my loneliest moments courage fails me, and I wish for many things to be different. It is then I am stilled by this scripture “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

As Christmas draws closer, I wish you the best gift of all: Peace. May it be with you and cling to you like a favourite sweater or a great lipstick. May it help you rest and when you need to, may it help you rise.

Peace be with you.

My Story October 9, 2017

The Anchor

For Savannah Diwali, Halloween and New Years are very stressful days. So stressful that she is anxious months before when Spring begins. To add to her anxiety at the beginning of this September her caregiver left us without notice. At the same time both Eli and I fell ill and needed to have small procedures in separate hospitals just days apart. It was a rough time but not the first rough time that we have experienced.

We handled it because that is what you do. For us, we no longer believe that once we get through a rough spot life will get easier. We recognise that there is no telling what lies before us and just because we get through a challenge is no guarantee that we will not face something like that again.

What is that you say?

“God does not give you more than you can endure and remember He only gives his toughest challenges to His toughest soldiers”.

Well that is debatable. The high divorce rates amongst families like ours and the number of mothers on anti-depressants say otherwise. I think however well-meaning those lines are, they also place a burden of heroism on families. If those lines were followed by actions of friendship and support, they may actually have some tangible meaning for many families because God did not create us to deliver great lines. He created us to care for one another in a manner of humility and not for an opportunity to brag on Facebook. Mmmmm… I loaded that last sentence.

So yes, all I hear when people say something about my apparent super natural strength is:

“No matter how painful this is, no matter how much your heart is breaking; you are not allowed to break. The mother who is stressed that her child (without a diagnosis) is having a tonsillectomy or grommets or any other typical childhood ailment can break. Well, because you know she doesn’t have your super natural strength. But you whose child is facing life or death, or another painful surgery or whose child is going on strong meds too get those terrible seizures under control, or who can’t use the toilet at twenty years old or is peg fed at thirty years old; oh no you can’t break. Remember you were chosen for this. You have that special portion of strength”.

Actually we don’t. It’s more like what people need to tell themselves to cope with the reality of our lives. It’s not always helpful. We are not the toughest soldiers and no, we cannot endure some things. For my family the smallest change in Savannah’s behaviour, physical well-being or mental state can mean something. Too often we have had to fight for medical services when to the clinician’s eye Savannah appeared fine. Yet we knew something was wrong with her. And too often what was treated as a minor concern by doctors; has actually become a life defining issue for Savannah’s health. This is also true for many other families like us.

Where some parents worry about their child through an infection and then ease back into a more carefree take-every-day-as-it-comes lifestyle; we watch every movement, listen to every moan and take note of change of patterns all the time. And where most typical families experience intense emotions at medical procedures or when their child needs more help in certain areas; families like ours accept that hypervigilance is a normal way of life all the time.

And you ask: “However can you live like that?” In fact a mother of a typically developing child once said to me “I would never do what you do. You have too much patience”. Uh, it’s your child. But yes, each of us in the family have the choice as to how we care for each other while caring for Savannah. It is a decision that we as parents make to ensure that we don’t just live, but that each of us thrives. Not the “heroic” thrive that society wants to see but the thrive that your soul recognises and responds too. And in so doing my family have learnt that we can be:

Caring: It’s not just about the person with special needs but about each person in the family too. When we understand the frailty of life; care and concern is a way of life for everyone.
Careful: We are careful to hold each one close and sometimes especially for Talisa and Eli, we let them go a little too. We are careful too see each other in every moment and not only see Savannah. Only we understand the same unspoken beautiful soul secrets and the heartaches that lie deep within.
Respectful: Life isn’t a movie production just for Savannah. We respect each person’s right to thrive in their own story within the family. But yes, we have to take extra care that Savannah makes it to each moment.
Forgiving: We choose to live in a state of forgiveness. We understand that each of us can’t always be happy at the same time. One of us might be processing too many issues simultaneously or one of us might be worrying about something he or she cannot articulate yet or one of us might just be overwhelmed with the enormity of living against the tide all the time. And so we might not be as present as we should be. And that is okay. We forgive, we understand and we move on.
Joyful: We choose to be joyful. Sometimes like when I was sick and couldn’t get out of bed, I didn’t feel joyful. It annoyed me that I needed care and that I was a dependent instead of a carer. But listening to Michael and the children fool around arrested my soul. He was surviving on very little sleep but he chose to still be fun and engaging with the children. Joy is a choice and it isn’t as flimsy or as fleeting as happiness.

It is an anchor.