Inspiration Archives | A Million Beautiful Pieces

A Million Beautiful Pieces July 19, 2020

Are all children a blessing or are only children with a disability a blessing?

I am asking this question for myself and on behalf of other parents to children with a disability: Are all children a blessing or are only children with a disability a blessing? Often when people learn that I have a child with a disability they reply with “she must be a blessing”. Well, all children are a blessing.

And, they contradict the above and confuse me when expecting a baby either by pregnancy or adoption and say: “as long as the baby is healthy and please God has no challenges”. Doesn’t everyone want a blessing?

For years I have had to bear up against ignorance, unkindness and the veiled arrogance that accompanies a belief that another parent must be better than me because their lives are not touched by disability. Too often people repeat socially acceptable phrases about their wish for an unborn baby without thinking about who is listening to them. They babble themselves into a verbal quandary and then when they realise a parent like myself is part of their audience, we are stuck with having to process the funk created between us.

Such funk moments can be made up of and are not limited to the following:

1. “Thank God (my baby/her baby/their baby) doesn’t have any problems.” – Please if you must say this, do not say it in the presence of a parent whose child actually is a person with a disability. Parenting children brings different challenges. Believe me, I know. From parenting a child with a disability to parenting two non-disabled children, there are days I’m more thankful for the challenges I face with Savannah. Talisa and Eli have no issue with me saying that, because equally I can be heard expressing that sentiment when Savannah tries my patience. That’s the reality of being a parent.

It is challenging in the best of families. After having worked with families whose children acquired a disability later in life due to a medical condition or accident, I witnessed first hand how remarkable and unfathomable the love of a parent can be. How in the face of tragedy, a parent can cling to blind hope for years. So maybe when faced with sharing news of a new baby, we can try to say “Please God grant the parents strength and wisdom as they learn to love unconditionally”.

2. “You are amazing. A SuperMum.” – Please don’t dwindle my sacrifices, moments of heartache, frustration, resolution and tears in our fight for Savannah’s right to equality to “Super” anything status. When in truth we are not welcomed into society as Superheroes usually are. SuperMum, I am not. Just Savannah’s mum; doing and being what she needs so she can live a life with dignity and respect. It comes with a ridiculous load of heartache and loneliness. Not perks of a Superhero. I know by walking with Savannah through this life, trusting God’s love for her and for myself, that we both have discovered an extraordinary universe of faith, hope and love still unbeknown to many Superheroes.

3. “Oh wow autistic! Your child must be a genius.” – Why yes, if your definition of genius is being able to remember what every member of her family wore to church every Sunday for the last few years, then Yes! But said child may also be unable to work out how to dress appropriately for different weather conditions. For example, said child can wear shorts and T-back when the weather is below five degrees celsius.

People have different abilities and a parents’ love is not measured by what level of ‘genius’ their children may or may not possess. Frequently I have to debunk that genius definition of autism with: “No, she is not like Temple Grandin or the guy from Rainman. She is amazing in her own unique way, just not like those people.”

4. “You make it look so easy. But I couldn’t be like you”. – No, you can’t be like me. You can only be like you. You can only be the parent your child needs, not who my child needs. Statements like this, while intended to be flattering actually have the opposite effect. They convey the idea that there is a limitation on a parents’ capacity to love and those who exceed that capacity belong in a special group. It just adds to making a parent of a child with additional needs, feel more alienated and increases the likelihood of depression and loneliness. So please for all our sakes, parents and expectant parents, lets just go from the premise that parenting is the most profound role anyone can ever have, without making it about standards or comparisons.

My daughter, Savannah is a woman with a disability and can be frequently heard praying for other people and never for herself; because she sees herself as “Whole and Happy”. Talisa is an almost adult dreaming of her future where “Whole and Happy” will not be precluded by having a child with a disability. Their experience as sisters and as women who appreciate their own individuality without being made to feel that one is more of a blessing than the other, is rich and deep. So much so that when Talisa starts planning her motherhood journey, it will not be overshadowed by the notion of what she can’t be to someone she has yet to meet.

In my different areas of work and service, I get to speak to women from different ages and walks of life who are struggling with their own womanhood, motherhood and identity. Their stories matter and take up a great deal of my heart. But it is my own daughters who already have a residency there.

So I wrote this for my daughters, for when the world tries to rob them of their joy as women who understand a little something about ‘extraordinary’. I wrote this for women whose lives touch mine. For the expectant mother somewhere who needs to know this. And for the mum who is considering leaving her baby somewhere, anywhere because someone or something gave her the idea, that she is not capable.

I wrote this for the child who cannot fend for themselves and who may never be able to do so or may need much help because of having a disability. I wrote this because tonight they will be left in a hospital or a park or in a drain, unwanted by their parents but equally unwanted by the same society that will demonise the parents for giving them up. My own lived experience teaches me that too few people support parents with children with disabilities and even fewer will ever be heard confessing to welcoming such a blessing into their home.

A baby who is differently-abled, will need their family and their community to show up for them in remarkable ways. A child who is going to need extra help, extra support, extra anything, can also be the catalyst for ‘extraordinary’. The ‘extraordinary’ that changes our definition of success from counting accomplishments to being unable to count the depth of love a parents heart can hold while it tethers between heartbreak and joy over and over again.

This is the closest example of how much God loves me and what grace is available to me: That I am able and willing to love sacrificially and unconditionally.

This is also why I believe a blessing awaits anyone who welcomes a child. No further description of the child is needed. Selah

I have three children: Savannah (23 years), Talisa (17years) and Eli Michael (12 years). Savannah was born when I was eighteen years old. I was a single mother before marrying Michael. Savannah is autistic and is a person with cerebral palsy. She cannot live independently and I am her primary caregiver. I worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and am now employed in the child safety sector. I work for a non – profit organization that is a place of safety for babies who ultimately are adopted. I am also affiliated with another non – profit organisation supporting pregnant women in crisis. I have the rare insight of holding a space where these three groups meet – disability, unwanted babies and pregnant mothers. In facing my own parenting struggles and through my faith journey, I learnt a great deal about what people say they believe and what they actually believe. And so I write for the purpose of sharing different perspectives. I write to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. I write because I know what hopeless felt like when I believed the wrong words. I write because I know that Faith, Hope and Love abide.

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

A Million Beautiful Pieces February 11, 2019

Our Lives Are One Big Puzzle by Erin Hanson

When we measure life by success and failure, we lose so much of everything in between. We lose the essence of the Million Beautiful Pieces that make the puzzle that is our grand masterpiece. Erin Hanson is The Poetic Underground and she writes a beautiful reminder about being present in every moment of our life.

“Our lives are one big puzzle,

We don’t know how many pieces we’ve got,

There are people that fit in quite nicely

And people who try but do not,

We’re constantly adding more pieces,

All the memories of things we’ve been through,

We add laughter and tears and adventure,

And the lessons we’ve learnt to be true,

Everyone has their own puzzle,

There will be ones where you do not fit,

Don’t you ever dare make your piece smaller,

Just so you can live there for a bit,

If you keep cutting off all your edges,

One day you won’t recognize what you see

And you’ll forget the person you once were,

Before the world told you who you should be,

Make the most of each piece in your puzzle,

It’ll be a grand masterpiece when it’s done,

So you won’t have to look back when it’s over,

And realize you’ve left out the sun.” -e.h

Sometimes we need to be reminded that this life is not about meeting a set of criteria set by other people. It is living in tune with who God created you to be: A Grand Masterpiece.

A Million Beautiful Pieces December 31, 2018

A New Year Has Arrived by Erin Hanson

On this last day of 2018 I am filled with gratitude as I recount the amazing year I’ve had. Turning forty years old has been my year of re-awakening, re-aligning and re-learning. Thank you to the people who blessed my life this year, especially to everyone who follows A Million Beautiful Pieces.

Your likes, shares and recommendations helps to put Faith, Hope and Love into the world. Without your support, I would not be able to use my gifts and my story. You are the Wind Beneath My Wings. Together we will soar through 2019 and make it a year that will count.

I’ve been saving this poem by Erin Hanson just for today. You will want to save this to remind you not to pick up again what you must leave behind in 2018.

Take down all your trouble
And wrap up your regret
Tie them to the rays of light
The sun sheds as it sets.
Whisper all that was
To fleeting seconds as they pass,
But hold onto your hope
For something new is here at last.
Beg your own forgiveness
And then grant it in one breathe,
Lay the year down softly
As it waits to face its death.
Then sit with eye turned skyward
As the night-time comes alive,
All that’s been is over
And a new year has arrived.

-e.h

Happy New Year, my friends. Let’s make 2019 count.

My Inspiration November 27, 2018

My Inspiration: There is ALWAYS Time to Dance

Today Savannah is reminiscing about the wedding last year when I was the MC and I danced a special dance.

Now that I work from home, it is a mixed blessing.

My children and my husband love having me around and I find we are using our time more productively. I wake up everyday excited to meet the day. I can’t remember ever feeling like this in my whole life.

For those families who have a child with a disability, you will know why this dynamic is precious. My daughter Savannah is witty and funny and kind and thoughtful. She is also different in her way of thinking and feeling.
She is my ever-long learning course. Teaching me all that I don’t know and often after working hard at understanding her point of view, I come back to the realisation that I just can’t reach all the depths that her mind wanders too. As an autistic person, she sees life in a way that I work very hard to understand; only to find that I fail.

So often I fail. My struggle to keep up with the “normal” world collides with trying to grasp her view; and I become frustrated, and angry at myself. At her. At this life and it’s persistent demands. Yet, I have to live in both worlds. I have to try so hard to keep up with life so that I can be part of it’s rat race and try to earn a living to provide for all our children.

Governing all that we do, like so many families like us, is that we must try very hard to earn more than a living.
We must provide for Savannah long after we are gone. And that is what keeps me awake till the early hours or gets me out of bed long before the sun rises. Working from home while also being a caregiver, a companion and all that encompasses being Savannah’s mother, is my “more than a conqueror” daily challenge.

If I could stay at my desk all day, I would not eat or drink because truly writing feeds me like nothing else does. But my reverie is broken every time when Savannah calls me. Sometimes what she needs is reasonable and makes sense that she called me. Other times, she calls me to tell me something so far off base from the moment that we are in, that I throw my hands up in the air and proclaim out loud that I don’t need to know the tit bit of information that she is supplying. She doesn’t grasp that I can’t know what goes on on her head and so we tussle with memories until I either get what she is on about or I give up and walk away.

For example, a month ago she suddenly jolted to March 2014 and for several days, she recounted everything she remembered about that time. Everything. Details like what earrings I wore and who we saw. People who I have long forgotten. She remembered their earrings, their watches and who said what, when and where. As I fight back the urge to weep for what feels like the hundredth time that she calls me to say something that I cannot see the relevance in; I ask myself if anyone else lives in so many spaces all at once? And if so do they survive themselves?

Right now, I am in the middle of writing about Domestic Abuse for the UNWomen’s Campaign and it takes me back to times in my life that I have closed the door on. Yet, now at forty, the shock of what I was allowed to be privy too as a child, washes me afresh. I have several other writing projects underway and a new client who I have to do some research for. So my mind is a little more than preoccupied on a daily basis.

Then Savannah calls. Again. Not being sure if she needs physical assistance or if it is just another newsflash from the past; I walk to where she is because that’s my life.

Looking back over the years, I’m most in awe that while I was trying to glue my heart back together as a teenager who learnt too much about the hypocrisy of the adults around her, I somehow kept my sanity as I became Savannah’s mother. Over these twenty-two years I’ve listened to the same story that my heart didn’t have the words to utter when Savannah was little. Parents grappling with the heartbreak of the unknown as their child begins life in a world designed to set itself against them. The most competent of people, crumble as they understand the force that will be required to help their children live their best lives.

Each time, I’m stunned anew that a girl like me became Savannah’s mum. What was God thinking to trust me with her? It has never been easy. There are days when I wish I did not know of the things I have to know. But I survived and I have learnt how to thrive right where I am. Having Savannah at eighteen was probably the worst thing to happen in a life already falling to pieces. Yet years later I understood that being Savannah’s mother saved my life. Who knows what I would have become, had I not have to fight for her in all the ways imaginable and unimaginable? Would I have known how to fight for myself or for that matter would I have known that I could change the course of my life?

Even now as I try to juggle housekeeping, children, writing, keeping up with everything, Savannah calls. She is now remembering December 2017. She wants to play the song I performed at my cousins wedding. I’m not in the mood for this and I grumble something to that effect.

As I walk away from her with the clock ticking and the checklist running in my head of all that I have to get done today, I hear her say: “Pretty mum the wedding. My mum good dancer. Well done.”

Savannah and I decked out at a wedding last year.

I can’t help looking back at her as she gives me a big grin. Maybe I am wrong again. I don’t think I am looking after her at all. I think she is looking after me. Drawing me away from the square boxes everyone is fighting to fit themselves into.

If you have heard me speak you will know that one of my key points is that there aren’t answers to everything that life throws our way. For those moments, there is always dance.

And so as Savannah played the song “Tere Bina” from the Bollywood movie Guru for the umpteenth time this morning, I took my own advice; and I danced. She clapped and squealed and made her happy sounds.

No one ever tells us that the lines of our broken hearts, make for the most polished dance floors. Or that dance is meaningless unless someone gives you a beat to dance to.

Disability Advocacy November 20, 2018

Parenting: Being Courageous even in Uncertainty

This past weekend we attended our friends sons’ birthday party where they had an amazing Wild Animals Educational show. My daughter, Savannah and the birthday boy, Kurt have been friends since they were little children. We have attended a few parties at his home and Maggie, Kurt’s mum throws the best birthday parties for him. When I told Savannah that we would be attending the party, she immediately inquired if there would be animals. She remembered that Maggie usually has an animal show for Kurt’s parties. This made Savannah a bit anxious because unlike Kurt, she does not like animals very much. The only animals she loves are our two Labradors.

Yes, that is a Tarantula on my hand. And yes, it is alive!

As a person with special needs, Savannah requires a fair amount of support in some situations and this time was no different. We had to make sure that she was emotionally and mentally prepared before the party to cope with her anxiety and concerns. One way of doing this was to reassure her that there would be no pressure on her to engage with the animals. We discussed with her that her daddy would sit with her as far away as possible from where the animals would be. She was happy with this arrangement and began looking forward to the party.

On the day of the party, Savannah did not back out from joining us as she usually does and was excited and happy to attend. Kurt, Maggie, her family and friends are some of the nicest people we know and Michael and I were looking forward to being in their company. As expected the party was relaxed and easy for Savannah. She was also very happy to see Kurt. Before the animals arrived, she repeatedly confirmed with Michael that as agreed, he would sit with her away from the animals.

Julian from the WILD ONES Educational Show arrived in his bakkie (South African word for a small pick-up vehicle) full of cages and containers. We watched Julian set up, and Michael and I with some trepidation watched Savannah, watching Julian set up. A few years ago at Kurt’s party, Savannah clung to me for the duration of the party and was miserable and cross because she was so mortified by the animals.

As an autistic person, Savannah’s perception of some situations is different. What might feel fun and exciting to us can be uncomfortable and frightening for Savannah. In order for the whole family to enjoy life together, Michael and I had to make peace with the fact that Savannah will always require some level of support in many situations. Fear is a debilitating emotion and we know that Savannah’s fears are real enough for her, and therefore warrants our respect and patience.

That was the mindset that we had at the party but to our surprise and delight, Savannah decided to join everyone in the area of the garden where the animal show was going to take place. Julian kicked off the show by introducing us to a tarantula. Yikes! I know. I never thought I would hold a spider nor one as scary as a tarantula. But Savannah was watching Michael and I with keen caution, and so I held out my hand and took the spider. Then I held a bearded dragon and a barn owl and the list goes on.

Eli let a Corn Snake coil around him as Savannah watched in amazement.

Then he coaxed her into touching a bunny which we named Peter Rabbit for her benefit. That was one of her favourite childhood books.

Michael who is by no means an animal lover delighted her by holding a tarantula and whistled to a Cockatiel, coaxing it away from my shoulder to his shoulder.

I struggled to fight back the tears when we met the barn owl. Some years back she was caught in a trap and had lost one leg. So she cannot fly and is fully dependent on Julian for her food. As a mother to a daughter who uses a wheelchair and a sister to a brother who is an amputee; that little owl represented the vulnerability and the tenacity that I saw in my daughter, in my brother and in Kurt. More than that, Julian’s care and commitment to this sweet bird spoke volumes about something all of us at the party understand but rarely see outside of our lives as families of people with disabilities.

That is the act of simply caring for one another. Not based on what we will gain or what we will lose, but only for the reason that we are human and we have compassion.

Often people look at Savannah or Kurt and they feel pity. Understandably so because they see themselves as having more abilities than our children do. Often we as families are judged from their limited viewpoint about what we are doing and what we are not doing for all our children. Here’s the thing though: We are here caring until forever. We are constantly finding delight in life no matter what fears and unknowns and awkwardness and frustrations we face. So the pity we get is actually misguided. It belongs to the rest of the world. While our lives take us to difficult places in our hearts:

we know what “unconditional” means.
we know what depths of love and care truly exists in the human spirit, and
we know just how shallow so many lives are because they have not yet learned to give without counting the loss or the gain.

We knew from the beginning that parenting would be a daily exercise of giving of ourselves. It would be letting go of fears and showing up for our children no matter how we were feeling.

What we learnt was that parenting a child who has special needs is sometimes about giving all of yourself. It is about conquering those fears every moment of every day and learning to live with passion and joy knowing full well that your worst fears for your child can become your reality.

We do not know when Savannah will be keen to attend another event so we soaked up the afternoon with Kurt, his family and those glorious animals. We were carefree and delighted as we held tarantulas and snakes. Now that is a great paradox for the life we live, isn’t it?

Being courageous even when our hearts are uncertain.

A very special “Thank You” to Kurt, Maggie, Kevin (Kurt’s dad), Gabriella (Kurt’s sister) and their extended family for being one of the bravest, nicest people we know.

A Million Beautiful Pieces November 7, 2018

I Am Weighing In On The Weight Issue

It’s the most wonderful time of year. Or is it?

Are you dreading the holiday season? Seeing family or friends who you would rather not see? Having to attend or host dinner parties you would rather not be part off? Trying to accommodate your spouses’ family while your own family have their expectations of you?

Maybe you already know that financially this is going to be a tight Christmas, and you can’t say that out loud without feeling like Scrooge? Or maybe you have gained a few pounds this year and the thought of going home for Christmas when you know that aunty “I must comment on your weight” will be visiting; is petrifying you.

And that is where I will start off this series of blog posts as together we wind down this year. For today I want to share some thoughts and ideas about how to deal with unsolicited comments about physical appearance. Over the next few weeks we will get to the other stuff like depression, isolation, and how to look after yourself when your life doesn’t look like the Hallmark Christmas Movies.
But for now let’s just weigh this important issue.

Firstly, why oh why is this even a topic of conversation? I’ve never understood why I’ve had to hear comments like “Oh my word, you are so fat” or “That dress is lovely but sleeveless is not right for you. Your arms are too big.” Or the other way “My word, you’ve lost so much weight. Is everything okay?” Or “I was telling ______________ that you look so much better now that you lost weight. You were looking terrible last Christmas.”

I entered Mrs South Africa after loosing some weight but I was still not exactly a “small” lady.

Why would anyone ever begin a conversation like this? Or for that matter even bring this up in conversation. Its mind-boggling that these interactions are still part of our social contexts when we are living in an age when both men and women have emotional issues that stem from having a poor body image of themselves.

We are taught from a young age to make excuses for family and friends who taunt with their crude comments. We tell ourselves that it is only cultural or that is just the way they are. I will also include here that even negative comments about skin colour, choice of clothing or hair style, comments about how a persons’ body has changed due to pregnancy or after medical issues or actually anything to do with physical appearance of any sort; are simply not topics of conversation at any time of the year, let alone during the holiday season.

Of course genuine, positive comments like ”You look lovely” or “I’m so glad to see you and I love your dress” or simply “It’s so good to see you” are perfectly fine and it makes spending time with our family and friends so much sweeter. When comments are unflattering, one cannot imagine the unnecessary hurt that it causes.

I’ve been in this situation a few times, and one incident is still so clear in my mind. I was collecting Talisa from school when I noticed an old family friend. He was an older gentleman, who I hadn’t seen in years. I was entering the school gate with many other parents when I saw him and I greeted him. He boomed out, “Oh Desirae it’s you. Oh my word. I didn’t even recognize you. You’ve put on so much weight.”

I was stunned to say the least. I had no idea how to respond to this in front of the other parents and particularly as I was feeling really depressed during this time. Savannah was recovering from an operation to her back and there were complications that we were coming to terms with. We were living in an upstairs unit in a townhouse complex. Eli was just over a year old and could not walk up or down the flight of stairs by himself. Everyday sometimes three times a day, I was carrying both Savannah and Eli up and down those stairs.

Savannah and I dancing at her 21st birthday party.

In the afternoons if I had five minutes to myself, I would dish up a large bowl of vanilla ice cream, squeeze a mountain of maple syrup onto it; down it and then continue with taking care of my three children. Hands up mums and dads if you have scoffed an entire box of chocolates or polished a bag of chips while your children needed your care! You know well enough what those days are like.

That time in our lives was so emotionally confusing as we delighted in Eli’s milestone of walking and were equally shattered as we realised that Savannah was losing her fight to keep walking. So yes, I ate the ice-cream and the cake and anything else that offered any sort of comfort. It didn’t matter that everything tasted like ash to me anyway. It was just the way I was coping.

That old mans’ comment felt so cruel and so shocking to my very soul. I felt like a failure: unable to stop the regression that was claiming Savannah’s walking, and unable to keep my weight down. Those words just made me hate myself for not being able to be thin and for not being able to keep Savannah walking. I am generally a practical and logical person but this brief meeting shattered me. And it gives you an idea of how a seemingly innocent quip, can be havoc for another person.

How did I free myself from allowing these shallow comments to hold me hostage in my misery?

*Do you know that you are a child of God and that it’s wrong to disrespect Gods creation?
First, I asked myself are these “weight commentators” that important ? Would they cope with a small percent of the challenges I have lived through? Even if they had their own challenges to survive, clearly if they are making hurtful comments, then their life challenges did not change them for the better. No. You can’t take anyone seriously when they have no depth of character. For myself when I meet people, I see more than a physical form. I see them as a child of God.

*Do you love yourself?
Then I asked myself what did I want? Really, did I want to be supermodel thin and have my body poked and peeled and worked at while Savannahs’ disability changed her body in a drastic painful way? No I didn’t want to look like a supermodel. I wanted to help Savannah to love herself even as her body started to work against her. For my own well-being and for my children, I learnt to love myself irrespective of what size dress I fit into.

*Do you know what a “good looking” body means for yourself?
I also asked myself to define what a good-looking body meant for me? My answer was that I wanted to wear clothing that flattered what I liked about my body without feeling ashamed. Fat arms and all. I also wanted to be able to run down the soccer field with Eli, wear high heels to impress Talisa and still lift Savannah when she needed it. I wanted to feel pretty good with myself whether I was a size fourteen or a size ten as long as I could do those things with my children. Now that would be a body to cherish.

This was the day Eli was selected to play football for the local district.

*Do you have a plan of how you will protect yourself from “weight commentators” this holiday season?
Lastly I asked myself how am I going to deal with shallow, misplaced comments about my physical appearance? The answer was I won’t. If a person is so base as to have the gall to say anything derogatory with the intent to cause shame, then they are not worth my time, my words, my respect or my love. It takes a mammoth task to encourage oneself when caring for a child with a disability. So I will not ever again allow anyone to set my soul off-balance into self-loathing. I do too much in a day to waste time picking myself up off the floor.

If you don’t have a plan to protect yourself, then grab a pen and page, and take some time to answer the *questions above and you will start working out your own plan on how to guard your personal space. That is what your body is. Your personal space. And no one may physically, verbally or emotionally violate your body. Got that?

Once you learn to respond to hurtful comments without feeling ashamed and angry, you will realise that your response will simply be a matter of stating facts. I taught my children how to do this after I worked out how to do it for myself. They know that if anyone dares to cross that line with them by making inappropriate comments about their physical appearance, then they have my permission to shut them down with statements like:
“Wow, that’s not nice to say.”
“You think like that? I’m glad you aren’t my mum or dad”.
“I like myself the way I am. If you don’t like me that’s your problem.”
“You be you and I’ll be me”, or Talisa’s own line said with a huge smile
“I’m fearfully and wonderfully made. I’m okay”.

Oh my friends, this Christmas the best gift you can give is to find your strength, keep your balance and maintain your peace.

Now, I’m off to indulge in a vegetarian hot dog on a buttered white roll with homemade potato chips and caramelised onions. And later while I watch today’s episode of Masterchef Australia, I will devour my Carb Clever Chocolate Bar.

Yum. Yum.

My Story October 20, 2018

It’s a Celebration: Talisa is Sixteen

Today Talisa turns sixteen years old. Where did the time go? As we reminisce over the last sixteen years, I’m thankful for so much. Mostly I am thankful for the special relationship that Michael shares with Talisa.

Few fathers understand how to be a dad to a daughter in the different phases of her life. Michael was raised in a very conservative family who believed that wearing dresses, amongst other patriarchal ideas, was how a women showed her dignity. The focus of what made a strong, courageous woman was placed on all the physical aspects of being a woman, and not on what counted….a woman’s heart, mind and soul.

Far from his conservative upbringing, Michael has raised his daughters with the freedom to express themselves and with the confidence in knowing that nothing they do will ever change his love and commitment to them. They are his greatest delight and his deepest heartache as he mourns silently all that Savannah will not experience in her life as a woman with a disability.

From the softness he shows his daughters in so many ways; to indulging their musical tastes; to patiently waiting outside change-rooms while they try on clothing or can’t decide what colour blusher to buy; to waiting while they take over the mirror in our bathroom; to accepting that he will buy hair bands and lip glosses far too often; to sitting up at night until Talisa completes her homework: Michaels’ heart has completely been flooded by being a father to his daughters.

When a girl child is honoured and respected by her father; when she is made to feel capable, and still has a safe place with her dad to be vulnerable; she becomes the most remarkable gift he can ever give the world. A women who is whole.

Today as we celebrate Talisa’s sixteenth birthday, I am so emotional remembering the day she was born. I remember looking at her in my arms and telling Michael that he need only remember two things about raising a daughter:

The first is that you are guaranteed (for the most part) the first eighteen years with them until they become independent. That means only eighteen Christmas mornings when your children are all yours. To me if an average lifespan is seventy years then eighteen seemed like just a drop in our entire lives. So Michael and I agreed to do our best to make those eighteen years as amazing as possible.

Eighteen years where we will hold every moment with tenderness and gratitude before it slips away.

The second piece of revelation or advice if you will, that I gave Michael was don’t ever, ever let your daughters down. Never. Daughters will need their fathers because when you don’t have a dad, the world thinks nothing of breaking you. It knows you have nowhere to go.

Be the dad whose daughters don’t have to look for love in the wrong places or test life to figure out what Love feels like. A strong, capable women already knows what Love really is because she soars from the shoulders of the mighty man who raised her. And when she needs a soft place to land, it is usually right back in her daddy’s arms.

Today as Talisa turns sixteen she makes us so proud to be her parents. She is a remarkable sister, a genuine friend, a blessing to her grandparents, and in so many ways she is both mine and Michael’s ‘right hands’. She is my delight and her fathers greatest gift to the world.

Happy Sixteenth Birthday Talisa. You will always have my voice in your ear praying for you and my hand in yours whenever you need me. So too you will always have your dads’ arms to hold you and his shoulders to soar from. When the time comes for you to soar, don’t be afraid to fly high my darling. The view will be spectacular.

Never forget why we chose your name. May it be a reminder that God is always with you. We love you.

(The meaning of the name “Talisa” is: “Consecrated to God”.

Categories: Hindu Names, Indian Names, Sanskrit Names.

Used in: English speaking countries, Hindu speaking countries.

Gender: Girl Names.

Origins: African-American.– https://www.thenamemeaning.com/talisa/)

A Million Beautiful Pieces June 26, 2018

Be True To You, Always

Here I am in the final week of semi final judging for the Tammy Taylor Mrs South Africa Women Empowerment Programme. I’m not nervous. I’m both excited and nostalgic as I think about my best moments so far.I’ve lost weight and found my energy and strength again. I’ve been forced to take better care of myself and that has been good for me. In my motivational talks to women, I always drive home the point that we must be kind to ourselves first but I did not know how to do that before this competition.

I’ve also met amazing people. The staff and owners at the BloBar and Meyersdal Nail and Beauty Studio with their vibrancy and laughter was always refreshing. My cousins too have taught me so much about belief and empowerment and love. Through their companies, Shipping and General Transport and Supreme Rubber Rollers they gifted me the opportunity to “do me” by sponsoring me for this competition.

My sister-in-law took care of all my social media so that I could juggle everything else. My mum, my aunts and my girlfriends pulled together outfits like fairy godmothers. My husband and children have been so supportive and respectful of the times I had to be away from them.

People have written to me or called me or stopped me at events to tell me that they admire me for doing this competition at this age and as a mother of three. Women have shared that they are re-evaluting their lives and weighing up what challenges they would like to tackle.

It makes me glad to know that my journey to explore my womanhood in this way is meaningful to other women too. It’s been a wonderful opportunity and I am proud of myself for doing this.

I also recognise too that I am not on a journey of discovery because I already found myself at the age of twenty-two years old. I knew then who I was and what I was made off.

This journey this year has been about showing my second daughter Talisa that life is more than just facing down one challenge after another. It’s also about enjoying the moment and having a sense of adventure. I got to step out of my comfort zone and meet people I would not ordinarily have met.

The other semi-finalists are each amazing and powerful in the own right. I couldn’t have been amongst a group of more beautiful ladies both inside and out.

So here’s to them; for their drive, their determination, their friendship and our sisterhood. I will be sad that after Friday we will never all be together again. The top twenty-five Mrs South Africa finalists will be announced and their lives will never be the same.

In all the possibilities that lie before me, I am sure of this: I’ve given all of me to the people that count and to the opportunities that were presented to me. I know for sure who I am, and that is my gift to me.

Be True To You, Always.

A Million Beautiful Pieces March 16, 2018

I am bruised. I am brave. This is who I’m meant to be. This is ME

I am so excited to try my hand at making a video for you instead of writing a blog post. From the song track This is Me “I am bruised, I am Brave, This is who I’m meant to be, This is ME” was what was playing in my head as I made this video. My team and I are learning about video editing and we aim to improve all the time. For now we hope you enjoy this offering from us.

Thank you in advance for watching: