Cerebral Palsy Archives | A Million Beautiful Pieces

A Million Beautiful Pieces October 5, 2022

Self-Talk, Apologies and Presuming Competence – World Cerebral Palsy Day

October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn.

Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal.

She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.”

Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:

No one is allowed to hit her,
No one is allowed to be rude to her (with details),
No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly
No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge.

Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed.

If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them?

This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations.

I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it.

Also here is my truth –

I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!

October is Mental Health Awareness Month. For support join the growing community at JoinPanda.
October is World AAC Awareness Month.
6 October is Word Cerebral Awareness Day.
For support as a parent to a child with disabilities visit our community at Parent Reality

A Million Beautiful Pieces September 12, 2022

Work, Caregiving and Me – A look inside

My husband Michael returned to the hospital this morning for another “small” procedure (he has long covid complications). I wish that I was not a frequent-hospital-patient’s-plus-one. Yet, when all is said and done, I’d rather it be me standing next to the bedside of my family, than anyone else. This procedure was meant to only be a day procedure. However, from experience, it was best to err on the side of caution, therefore Michael is staying overnight.

This time of year, from spring until January next year, is what I refer to as our Maverick. Maverick is the giant wave professional surfers chase off Pillar Point Harbour, Northern California. It is known to be one of the most dangerous and treacherous waves, and those who ride the Maverick are hailed as Titans. For me, this season from now until January is my race to be a Titan! This is a look inside what being a caregiver is like for me.

Why is this season more challenging?

Savannah is more anxious during this time. She experiences the change of the season into Spring in ways which makes her physically uncomfortable. To cope, Savannah self-injures. She has improved so much in this, but it is still a coping strategy that she defaults to. Savannah is not even aware that she hurts herself. It is not severe and nothing that Dettol and keeping the skin clean won’t heal, as well as strategies to redirect her and to increase her awareness of what she is doing. Still, just seeing her abrasions, and feeling like I am not doing enough, takes something out of me that is mentally and emotionally exhausting.

Three years ago, an occupational therapist worked with Savannah towards her overall wellness. We have maintained and seen an increase in her wellness since then. Savannah never slept through the night before that, and her longest length of sleeplessness was about three weeks straight. Since her time with the occupational therapist, Savannah only wakes up some nights. That is a huge blessing. However, during this Maverick season, she tends to call out more often while asleep.

Then there are the celebrations like Diwali, Guy Fawkes, and New Year’s Eve when sometimes there are fireworks. In the last few years, Savannah copes much better on these actual days but in the weeks and months prior, she is fixated on what sounds will be heard. She talks about it relentlessly.

Added to this year’s Maverick season, is the uncertainty with Michael’s health and the challenges we’ve had with our car. Savannah takes both issues very personally. She is looking forward to some events over the next weeks and months with friends and family but now that her brain is in anxiety mode mixed with excitement, she needs much more support to cope.

Roll back to this present moment, and Michael’s procedure.

Savannah is very sweet and wants to be near him to pray for him. When she hears Michael having an asthma-related issue, her anxiety deepens. Hence, this was partly the reason for him to stay in the hospital overnight to fully recover and maybe lessen Savannah’s worries.

This is our reality. It doesn’t phase me as much as it is exhausting for me. Still, I cope. I learnt to breathe deeply and get the next task or job done while redirecting Savannah or talking her through it. When I watch surfers barrel a Maverick, I feel like that is an analogy that resonates with how I feel. Like a surfer in a tube of a wave, trying with all her strength to keep her balance to ride out the Maverick without falling.

I also know that no one is coming to save me from this. People will help. They will offer advice, a meal, a shoulder but every morning it remains up to me to get up out of bed, face the day and be brave enough to go again down the rabbit holes of my daughters’ mind and my husband’s health.

How do I cope?

I acknowledge that this is a tough role to sustain. Instead of having a fixed plan to cope, I have several options that I can interject into my day without it feeling like another stretch for my mind and my heart. My activity of preference is walking. When I can’t make the time to do that, I listen to a favourite playlist or a podcast, talk with people who I enjoy being with, or I write. And I love trees. Seriously, love trees. I photograph trees wherever I am.

I also lean into my faith where I trust that God cares for me too. Sometimes I cast my worries on Him, other times I am loud or silently weeping to a friend. At times, I am questioning, and other times I dance joyfully. Always I am not holding these highs and lows hidden inside me. I have a fulfilling life outside of caring for my family too because I need to be in the spaces of my ministry and work to remain soft.

Often family caregivers tell me that it is easier said than done. To have any life outside of being a caregiver. This is true.

So, say it, and keep saying it. Over and over. Until your ears carry it to your heart and mind. Until someone else can hold you, listen to you and help you. Until you know you have your soft space inside of you.

You matter too. Your joy, your dreams, your experiences, your challenges..it all matters. To help make it easier for you to go from saying it to doing it, tell me in the comments one activity, routine, or indulgence that you miss doing, and how you think you can start at it again.

Information about Savannah is shared with her permission.

A Million Beautiful Pieces October 21, 2021

Dream a new dream

This post is dedicated to parents who put aside their dreams, have taken the knocks and wake up every day to pour faith, hope and love into the world. I see you.

October marks Mental Health Day, Cerebral Palsy Day and Augmentative and Alternative Communication (AAC) month (this is for people who use other ways of communication than talking because they have limited or no functional speech or are non-speaking). This month is also Down Syndrome Awareness, Breast Cancer Month and many more awareness days.

The first three awareness topics are a big part of the fabric of my life.

The dream I hoped would become my reality

When Savannah was seven years old (she was already diagnosed with cerebral palsy but was not yet diagnosed as autistic), I was hailed as somewhat of a “SuperHero” mum. I learnt how to help Savannah to communicate. As a toddler, she could make three sounds which we understood to have specific meanings. She also used some signs and gestures to communicate specific needs. Now mind you this was all-pre-social media and with no access to the internet, so everything learnt was from therapists and good old fashioned intuition.

From there we used special software to teach Savannah to use pictures to communicate. Then she began saying some words, then some phrases and now prefers to communicate mostly by speaking. She is still not always easily understood and uses various methods to make herself understood.

Because of this feat in teaching Savannah to communicate, I had a career in that sector. I loved learning and teaching and training people who needed to use AAC, their families, schools, and other professionals.

Like many mothers before me and no doubt even now, I learnt on the job so to speak, and concurrently immersed myself in helping others. I knew what helplessness felt like, and I loved that eventually, I was able to help my child. How could I possibly not help anyone else’

Letting go of the dream

One day I was sitting in a training about a communication strategy, and everyone in the room was so enamoured with the technique. I was too, except I felt equally ill watching the videos. In all the videos, the person who everything depended on to implement was usually the primary caregiver and most times that was the mother. For years, I was everything to Savannah while also filling all the other roles I had. The best description was:

“I feel thin, sort of stretched, like butter scraped over too much bread”
J.R.R Tolkien – The Fellowship of the Rings.

The question I was trying to avoid went off like alarm sirens in my head: When will they (anyone who was bold enough to think they should speak on this point) stop telling us as mothers and fathers that we need to care for ourselves while we do the Superhuman task of staying employed while being available as a nurse, teacher, therapist, parent, cheerleader, cook, bather, cleaner, and friend to our child? While the scope of the needs within each of these titles kept changing.

I also knew without a doubt that being a “Super” anything meant very little when one can’t meet all the needs that a person with a disability has. Those needs don’t diminish over time. They became bigger needs like suitable housing, a suitable vehicle, access to services for adults, long drives to specialists, the ability to keep doing the same thing over and over for years and the strength to keep fighting for access and inclusion.

The skills I acquired in a specialist field, became a source of pain because the fact is that only a degree would have made a real difference to me. It did not matter how much experience I had or what force of passion drove my acquisition of that skill. Earning that degree would come at a huge cost in many ways, and with so little of myself left to spread, I had to let that dream go.

I felt I had let Savannah down. I gave myself to something that was not going to help me care for her well enough for the long run. I felt stupid for not pursuing a career in a sector with more options to increase my earning potential. I failed my family. I stopped trusting myself.

Dreaming a new dream

There is a line in a song:

“The very thing I love is killing me and I can’t conquer it”.
Monster under my bed song by Eminen and Rihanna

I used to sing that all the time because I loved my daughter. I loved what I did for a living. But I also knew it was never going to be sustainable to keep going in a field where the academic qualification mattered. Now I am here, forty-three years old, with a wealth of knowledge and experience that I can’t be credited for.

So I dreamed a new dream. I am incredibly blessed to have a paid job. It has little to do with my dream job so, in my own time, I still serve other families and professionals when I have the capacity to do so. I don’t know everything, but I know some things that make a valuable difference to others. My life has more flexibility and allows me to take better care of my family.

Have I found my dream life?

Yes and No. In the Book of Philippians Paul writes, “I know how to be content whatever the circumstances”. There are parts of my life now that I jump out of bed for and there are parts that I have to drag myself to do because it is the only option before me. I know the value of grit and grace.

In this country, access to support, skills, and empowering parents to be the best they can be to their children and to do that in a way that gives dignity to both the parents and the child is few and far between.

When it does exist, it is usually because a parent is making it happen for themselves and others. Far too often something has got to give. Usually, it is the parent’s mental health. Usually, no one notices until it is too late, and a life-changing event happens. A chronic or terminal illness, addiction, divorce, depression, or even worse abuse and even suicide. I have seen so many families fall apart, and I know that it has only by grace I have not yet fallen too far down the rabbit hole.

This October we have many issues on the calendar to be aware of. Mental Health is always a top priority for me. When we don’t have easy and low-cost access to support for parents and especially for those of us who have to be long-term caregivers, it is a feat to build and maintain the life we want. It all begins and ends with how realistic we are of how much a person can cope with, acknowledging that not everyone has the same capacity and that we should not be penalised for that. I sincerely hope that this post will in the least inspire you to:

Make spaces for parents who are trying desperately to find some meaning in their child’s diagnosis and are doing that by giving of themselves. Provide opportunity and friendship. Both are needed in equal amounts.
Remind yourself of when your child was a baby, and how hard those early days were. Now imagine doing that for the rest of your life while pursuing a career. That is long term caregiving. Give those caregivers a little grace.
When a parent changes course and tries something new at thirty years old, forty years old, fifty even sixty, it doesn’t mean they have failed. It only shows that they are willing to keep trying to add value to their lives, their family and maybe in some way even to the world. Be supportive.
Lastly, there is no such thing as fair in life. So when a parent doing double duty needs extra leave or gets that promotion, it’s not unfair. It is life, and sadly if life was fair, there would be more help for parents who are long-term caregivers.
Please be kind. It costs nothing.

Finally, to the mama bears who I have the privilege of being a pillar to, Khalil Gibran said

“When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”

I am holding space for you as other women have held for me. You are not alone. In your own way, by your own standards, you can begin again and dream a new dream. It may surprise you and be a little more delightful than the ones you dreamed of before.

For Professional Help, please call

Lifeline: 0861 322 322
South African Depression and Anxiety Group: 0800 567 567
or contact a counselling service in your area.

Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and 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. She writes because she knows 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 July 1, 2019

Parenting: Is it unfair to other siblings, when one child has a disability?

This is my first blog post in three months. Time is a monster in my life but today, I had to write this, as short or long as it may turn out to be. In a time when parenting has become a central focus for many families, it is appalling to me that many people hold to a belief that in families where a child has a disability, it will always be unfair to the siblings of that child.

Now before I offer some insight into why this blanket opinion is appalling; let me acknowledge that there are families where siblings of a child with a disability have complex emotional needs. Their parents may not be as available to them as they might be to the child with a disability. Consider the myriad of demands on parents in typical parenting units. Can you only imagine what the demands are for parents who parent children with different needs? If you can’t imagine it, then let me offer this first piece of advice here – please do not make any comments or assumptions about what happens in families where disability is part of the dynamic. Zoe Gow’s shares her insight about this – Siblings and special needs: the life of the other child.

I can stand on my soap box here and rant about how if you are not raising a child with a disability, you cannot know how hard this is. You do not know what never-ending exhaustion is nor the mental and emotional stamina we must have everyday to be consistent in therapies and medications while also often trying to keep up with a mind that dances to a tune to which the lyrics and harmony are unfamiliar to the parents. And just when we think we have figured it out, the tune changes again.

Michael pulling Savannah up some stairs so we can browse a bookstore together.

From my soap box, I can also add to my rant that you cannot fathom, the love that keeps us doing this again and again, everyday.

But I won’t stand on my soap box to wax lyrical about that. Instead, I want to offer a different perspective from my own true story:

I am a survivor of childhood and teenage trauma, sexual abuse and domestic violence. I was a mother at eighteen years old to Savannah who is autistic and has cerebral palsy, and other stuff (her description of herself). I was made to feel ashamed by my family and my community because I had fallen pregnant out-of-wedlock, and also that my daughter had a disability.

Savannah taking a short stroll with me .

When I finally got my happily ever after, my parents decided to end their marriage as the sun dawned on mine. While I tried with all my might to bask in the glory of my husband and the fact that Savannah had a dad, the embers of my parents dying marriage caught at my soul and burned me. At the same time I was trying to recover from the loud ringing in my ears that announced that Savannah was “severely disabled” and had no hope of a future. I’m guessing you are piecing together by now that I must have had a couple serious emotional problems. I did but the demands placed on me meant that there was no space to acknowledge my own emotions about both events.

Still I wanted to have another baby. Yes. I selfishly wanted to know what it would feel like to have a child who was more like what I thought a child should be. But people would not let Michael and I have that. When we were pregnant for Talisa, we were told that it was unfair to bring a child into the world who would be burdened with Savannah someday. I was told to limit the time the new baby spent with Savannah because she would pick up Savannah’s “bad habits”.

Later when we had Eli, we were told thank goodness we had him, atleast Talisa will not be alone. (Huh,she wasn’t. She had Savannah.) We were asked how would we manage financially and if we thought about how much Talisa and Eli will be deprived off because Savannah will deplete us.

And while I would not describe our financial situation that way, it wasn’t untrue. But it stung that all people saw was a thing who was here to destroy our lives. They did not see a person who deserved dignity, a good quality of life and who had dreams and hopes for herself. Just because her physical form and her mind had some variants to the rest of us, they wrote her off as no one and nothing. As if no good could come from her. An inconvenience.

Eli asleep on Savannah’s lap while travelling to our holiday destination.

Now all these many years later, Talisa and Eli have actually been “burdened” to care for Savannah, within their capacity. And shocker alert…there are days when Savannah is burdened by the bustle of two neuro-typical siblings. Their unstructured routines mess with hers and they encourage her to do crazy things like play cricket and then horror of horrors they want her to go out and mingle with people. They share insane plans with her about when Talisa has her drivers licence and how they will all three go out partying till late at night.

Oh and yes, those people were right. Our finances have been depleted because caring for someone with a disability in this country is not considered a human right but rather a fantastic opportunity to make money off desperate families who want to ensure their person with a disability is not deprived of care, medical attention and necessary supports. So we can’t give Talisa and Eli everything their hearts desire. However, often what their hearts desire is not what is necessary for a happy childhood. I sleep easy when I remind myself of that.

But maybe all those people were right. This life has been unfair to Talisa and Eli.

Savannah, Talisa and Eli on a recent visit to a Basothu Village.

Then I ask, what of the unfairness to the girl who was molested, watched domestic violence and adultery rip her family apart before she was thirteen, who was responsible for her parents marriage both in its existence and it demise, who was a cutter and a suicidal teenager and who understood guilt, rage and shame as normal. Why had no one told her parents that it was unfair to raise children that way?

Quite simply because somewhere we have lost our way and have aligned good parenting to a standard of living that is defined by where we live, what we drive, where our children go to school, what brands we wear, what technologies we own and what level of entertainment we can afford. Good parenting is none of that. It is very simply having a relationship with your children where you see each other, honestly and openly. The CNN reporter Anderson Cooper said of his mother Gloria Vanderbilt after her passing “I knew her and she knew me. And there is great comfort in that”.

Now I am no expert, but if my heart is my guide I’m going to go out on a limb here and say Michael and I have done something right in how we fostered our children’s relationships with each other. Their lives speak these truths:

While I talk about Talisa studying away from home after her school career ends and if that is right for her; she is in no big hurry to leave home. People who have had this discussion with her are always touched by her contentment and that her personal plans do not include fleeing from her sister and us.
Both Eli and Talisa’s plans include having a family. They talk about marriage and children so matter-of-factly and with such pride, that I’m the one who is stunned wondering what is wrong with these children.
They frequently joke with each other and with Savannah about where Sunday lunch will be held when they are adults, and which of them will take Savannah shopping to get the salad ingredients. They fully expect her to contribute to the lunch by making a salad. You know if she doesn’t, it would be unfair (snigger).
This morning I overheard Eli telling Talisa, that he was up playing on his PS4 till late last night and he heard Savannah call. He said “I was glad to have heard her before dad, because atleast I got to her before he awoke. She just needed help to turn over.” When I approached him about it, he said: “Mum, stop making it weird. She is my sister. And I’m not emotionally scarred from helping her.”

So maybe Talisa and Eli have grown up too fast. Maybe they have more responsibility than they should. In light of what many children are allowed access to on television, the internet and in their gaming, as well as that many children are still living with domestic violence, narcissism and so much worse; I’m going to say that developing selflessness, compassion, kindness, empathy, loyalty and sibling love that no one will ever understand, is not the worst thing that can happen to my children. And no I don’t think it’s unfair to them at all.

My Story October 30, 2017

We are grateful when our child with special needs is acknowledged

Our family had a great treat on Saturday when Savannah was able to attend a wedding with us. After attending so many functions as a family of four; it was awesome to finally attend something as a family five. What fun it was to get dressed. A very dear friend loaned Savannah a beautiful Punjabi (a traditional middle eastern garment) to wear. She spent days looking at it and feeling it so that she could become used to the texture and colours.

Savannah struggles with sensory processing difficulties, amongst other struggles. For many, many years we could not wear traditional clothing because the colours were too overwhelming for her. So overwhelming in fact that she would throw up after terrible bouts of gagging. This past weekend Savannah, Talisa, my mum and I wore traditional Indian clothing and I had a special time getting the girl’s hair and make-up done.

We took many photographs and created lovely memories that was special to share with my Facebook contacts on my personal page. Everyone enjoyed seeing us decked out and acknowledged how special it was that we have a photograph of us as a family of five. As I study the photo of my family looking back at me, there is something that I want you to know about families like us.

We are grateful when Savannah is acknowledged.

No, we do not want to be the centre of attention nor do we want her to be treated any differently. But her disability means that there are some things that she will never be able to participate in for varying reasons. Please don’t go off on the “positive thinking” thing. Some people are born really short and need a step-ladder to reach the top cupboards in their own homes (I know, I am this person), and all the positivity in the world doesn’t make them grow to reach the cupboard. So yes, same thing. Savannah’s disability means she just can’t do certain things. When she is acknowledged with kindness and compassion just for who she is; it builds up her self-esteem and makes the hard stuff a little more bearable for Michael and I.

Earlier this year at one of the weddings that Savannah briefly attended, the bride and her mum had a family member bring a bouquet of flowers to Savannah to hold. The bouquet was a smaller version of the brides’ bouquet. Savannah held it while she watched the bride walk down the aisle. With so many things for a bride and her mum to think off on such a big day, it was very touching that they thought of including Savannah in this way. Note: the bride never posted a single picture of this on any social media platform. It was just a special moment for her and Savannah and was not the brides’ opportunity to be “applauded for doing something nice for the disabled kid”.

At another wedding that Savannah could not attend because she was unwell; instead of throwing her bouquet, the bride gave it to me for Savannah. Yet again, at a different wedding, the bride also gave me her bouquet for Savannah paying tribute to Savannah in a moving speech. Then all the guests stood in prayer for Savannah. I wept.

At the wedding that we attended this past Saturday, the guests joined the bridal couple on stage for photographs. We would not have been able to get Savannah up on the stage and were contented to not have a photograph with the couple. But the bridal couple came down to where Savannah was seated and took a photo with her. That was very meaningful to Savannah that the bridal couple acknowledged her.

All these ladies displayed an unselfishness that is not seen too often today. To think of Savannah in these thoughtful ways when they have every right to be selfish is simply breathtaking. I recognise that we are incredibly blessed to have so many people of calibre in our lives. But too many of my friends with children with special needs do not have this support and insight from their own families and their places of worship. Some people even say it’s unfair that the child with the disability “steals” the attention on the day.

Families of children with special needs recognise that we are the “eye sore” of an event and we definitely do not want to “steal” the attention. Believe you me, it is no fun having people stare at your child or make patronising comments to you when they’ve had a couple of drinks and are suddenly less awkward to be near your child. Or having to withstand the lovely ladies in their finery who stare condescendingly at you and at your child. No, thank you. We do not want to “steal” the attention at all.

In society today, people without a disability wax lyrical about how hard everyday life is for them. A life they choose to live, built by their own hands. So it is astonishing that as a society we are not nearly as compassionate or caring to those who cannot live at the same pace that society sets. There is little point in buying a sticker or dressing up in costume to support a fundraiser for special needs; if when you have the opportunity to acknowledge the family in your midst with a person with special needs, you don’t do it. It is a testament to our humanity when we show that we care. It reminds families that there are good people in the world. It makes them brave and helps them to make beautiful memories with their children. The consequences of these actions have a far deeper impact than wearing a sticker ever will.

People with special needs and their families did not choose to be in need of support and care but we are. Our children did not choose to be dependent on their families forever but they are. We want to rejoice and celebrate in the happy events of our families and our friends. When we make what is sometimes a mammoth effort to show up and to keep our bleeding hearts in check to celebrate someone else’s happiness; please simply acknowledge it; quietly and gently. You may forget the moment soon after the event has passed but we will remember it forever.

#acknowledge

My Story October 16, 2017

You need only be your own HERO-A letter to my second daughter for her birthday

(Published with permission of Talisa Pillay)

Honey-girl,

It’s your birthday week. I am so excited for you. You are growing into a young woman so quickly. I love how your ideas are changing and how we can talk more and more about more complex “girl stuff”. Yet, I am also acutely aware of how much time we have left before your life choices become all your own.

Three Christmases and then you will be finished with school. Yikes! That’s sobering to say the least.

Maybe seven or eight Christmases until you graduate from University. I’m properly freaking out!

Oh my! You may be wonderfully in love by then and God willing; your life will unfold beautifully and gloriously before you. I’m holding back the ugly cry now.

Talisa, as a young girl the world will tell you that you can do everything that any man can do because you are equal to a man. Please remember while you very well can do many things equally to a man – you do not have to. You have nothing to prove. Not to anyone.

What they also won’t tell you my love, is that you as a woman will be expected to do as much as a man. Yet a man is not expected to do as much as you will be expected to do. He will never need to prove himself. Yet you will be judged for how you keep house, whether or not you compliment your husband in action and character, how you raise your children, how competent you are in your career and what you achieve in all these areas. As a woman you will be expected to keep it ALL under control. A man’s limits are carefully defined and respected. A woman is perceived to have more limitations but also expected to exceed them all the time.

Don’t allow these standards to define you as a woman nor allow it to make you fearful of one day being a wife. Your worth as a woman is not based on how much you do or don’t do. It is only based on a simple truth: You are fearfully and wonderfully made and God loves you. You do not need to earn His love or any man’s love for that matter.

You need only remember that in order to “love your neighbour”, you must first “love yourself”. That begins with R-E-S-P-E-C-T. I hope that the respect we have for each other in our home irrespective of gender, abilities, disabilities, age and station will stay with you forever. When you respect yourself, it is easy to know what to allow into your life and what not to allow.

Also hold onto “living in love is living in God”. That simply translates to being joyful, peaceful, long-suffering, kind, good and faithful. As your dad and I have done in our lives, we hope that you will write these on your heart. I promise you that these traits will carry you even when you think you can’t make it.

Honey, the world will also tell you that your sister with special needs is your responsibility. In many ways they already keep trying to elevate her in ways that can be hurtful to both you and your brother; often diminishing you to just a caregiver. I am so incredibly proud of your depth of understanding of people and their intentions.

You have not become bitter or disrespectful. You have responded maturely never allowing their emotional overtures to define the relationship between you and Savannah. May these insights guide you to have an understanding heart and to also guard your heart because no one is allowed to diminish your value and uniqueness. Remember, fearfully and wonderfully made?.

You already understand a little something about loving someone unconditionally. You understand what selfless means and that “what is fair” is a complex concept in our lives. I am in awe of how you share a deep friendship with your brother, who I am sure is often much easier to be with than your sister.

Yet you never show that. Not even to me. Not even on the days when you just feel melancholy. Even then your fussiness in making sure that Savannah always looks good and taking the time to do her make-up; often dismissing me from the equation is heart-warming. May you always be tender; doing in quiet for people what others would be applauded for.

We have experienced the opposite too, haven’t we? When people condemn me for only speaking about Savannah and accusing me of not seeing YOU. I won’t give up the details of how we live in love with each other. Not even here. I respect your privacy too much for that. I love that I get to be your mum without all the scrutiny. That is the gift of your life to me. Thank you.

So, this birthday I want you to remember we have not raised you to be anyone’s hero but your own. When life becomes too overwhelming; there is nothing wrong with slowing down, thinking it through and starting again, and again, and again because a New Day always comes. I know. You were my New Day.

Happy birthday my honey. I love you!

Mum

My Services July 10, 2017

This Is What I Do

Most recently I changed careers to work as a trainer, a public speaker and a freelance writer. It is my great love to teach. To use the mediums of speaking and writing to do that is a wonderful opportunity.

In my professional career my great passion was teaching and training. As a facilitator for training sessions, I know that it is vital to ensure that everyone understands the content, they feel confident to engage in the session and that they find value in the time that is spent in training. It gives me great satisfaction when trainees feel confident at the end of a session.

As a speaker, I am passionate about helping people to live their best lives. Using the experiences that shaped my life from being a teenage single mother in post apartheid South Africa to building a family and a career and now to facing the future with an adult child who will require full care, has taught me so much about what influences our decision making especially when one has to choose from a set of bad options. As a motivational speaker my goal is to share stories that remind people about the preciousness of each moment and that life is still beautiful.

As a writer, last year I entered the blogging space to contribute to social change in my own small way. I have learnt a little something about human behaviour because of the unusual circumstances that my life path has followed. Writing and sharing my insights is a way to give a little Faith, Hope and Love to the world. For my journey as a writer, I have also embarked on content writing for businesses which is an interesting avenue and one that creates diversity in my ability as a writer.

If you would like to engage with me in any of these capacities please complete the form below: