A Million Beautiful Pieces Archives | A Million Beautiful Pieces

A Million Beautiful Pieces November 9, 2021

A Life Worth Living -JoinPanda

Last month my post Dream a new dream was about the challenges parents of children with disabilities face when it comes to their own mental health. On my radar was a new application to investigate: JoinPanda which aims to give everyone access to mental health support. I was very intrigued.

Image is a black and white panda. The word panda is written in bold whit font below. The background is blue.

JoinPanda is a uniquely designed app where everyone who has access to the internet can join the specific live interactive sessions for free which are led by experts or peers on specific topics impacting mental health today. There is so much more too.

I like their bold mission: Everyone should have access to mental health support and resources that enable lives worth living.

The Corona Virus Pandemic accelerated the use of online platforms for social closeness. Many people who were against digital platforms found that it was the only way to connect with family, friends, colleagues, for their educational and recreational needs. More pages on social networks have been opened for support and closeness. We are now finding that our sense of belonging exists in the online groups we join. Our communities.

Bu these online communities don’t always enable a life worth living. We have more people struggling with mental health issues because of these social networks.

JoinPanda is not a social network.

It aims to “be the go-to community and marketplace for mental health care and content”.

Image is a table with three columns. The first colums lists the features of Panda, the second column lists the corresponding description, and the last colums list what features are free or paid for.

That is why I am excited about JoinPanda’s free Live Interactive Sessions (beautifully named “In the forest”, which I love), the Assessments and the Track your progress features. In my own time and in privacy, I can join sessions and engage in assessments and activities that easily give me the tools to care for myself. For further help and as a paid-for service, the Life Skills Training, and text-based Chat Support are also services that are available.

What JoinPanda means to me?

I survived childhood trauma, abuse, being a teenage mother, depression, divorce, parenting a child with multiple disabilities, and often I held on by the barest of threads. I could not afford counselling and support groups were few and far between. I could not identify that my mental health was a priority nor how to care for myself. It took a long road of heartache, pain, resilience, and courage to get to this point in life. It was a journey that taught me the value of support and a gift that I try to give to other people facing those same challenges. I am excited that JoinPanda is here and accessible to everyone so that care is only a touch away.

I will be hosting a session on Thursday, 11 November 2021 from 21:00 to 22:00 on “Support and networking for parents who are long term caregivers to their teen/adult with special needs”. Please come along and let’s learn from each other.

You can JoinPanda too

To join simply download the app here for your IOS or Android device. Sign up using the Promo Code ambp4panda, find the session title you are interested in and join. It is that simple and it is for everyone.

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 April 15, 2019

I Am Every Woman

A couple of weeks ago, I shared with you that I was one of the speakers at a workshop “Investment In Self”. The event was hosted by Nadia Marillier of Tranquil and Tenacious Minds.

I prepared this piece titled “I Am Every Woman” in forty-five minutes on the morning of the event. Though I had been mulling over it in my mind for about a month, the inspiration of how to write it, only came to me ten hours before I was scheduled to speak.

I am proud of this piece. It is a condensed version of my life story and the events that shaped me told with honesty. I read somewhere that “When you can tell your story without crying, then you know you have healed”.

Here is a written excerpt: “I am the woman who despite the odds, managed to not just survive my life. I managed to thrive in it. I understand today that the star-dust that my life was sprinkled with when I was born, did not turn into ash after a raging fire. Oh no, no, that would not be right. That star-dust was only the embers of the fire that was being kindled within me.”

As many of you know I work from home while being a caregiver to my adult daughter who is a person with special needs. I am not a professional at using a camera or adjusting sound so I hope you will be forgiving of this when you watch the video. I have a new camera that was gifted to me and I am still learning how to use that so hopefully I will produce better quality videos in the future.

I am however a lover of words and I believe God has gifted me to share the “hard stuff” to touch someone else’s life and in my small way to change the world to be a little kinder and forgiving of each other. So I feel I can’t wait to make perfect videos before I share some of my material with you. As I mentioned I make a living from speaking and writing. By sharing this video you increase my opportunities to work and to take care of my family. For that I will be very appreciative.

If you would like me to hear about specific topics please let me know in the comments. For now, here is “I Am Every Woman”.

A Million Beautiful Pieces January 15, 2019

Back-To-School: How You Start Is How You Finish

I have not written a blog for two weeks. And now here I am. I feel rather delighted with the quiet time I had and with all that I have achieved in these two weeks. One aspect that took up most of my time was my investment in my children’s back-to-school preparations. That required focused time and attention from me. It is such an important part of my year that even my Christmas preparations can’t compare. Why? Well, because I am a big believer in “how you start is how you finish”.

My hope is for my children to aim for the highest version of themselves with self-respect and self-love.

In the days leading up to the first day of the new school year, we (being Michael and I) encourage our children not only to start getting to bed a little earlier; we also coach them into thinking about what personal goals they want to set for themselves for the year ahead. Our back-to-school preparation includes providing our children with: a safe space to face their fears, plant their hopes and to acknowledge what supports they already have for the challenges that the year will bring.

One of those challenges for our family is when Savannah has a medical flare up. This happens at anytime during the year. Sometimes she is admitted to hospital and that means our family routines change drastically. Both Talisa and Eli know what it feels like to face an important exam or event while feeling worried about their sisters’ health. It would be neglectful of us to assume that the concerns we deal with regarding Savannah do not make an impression on Talisa and Eli. Anxiety is a real issue for teenagers and too often they are not taught helpful ways to deal with this. Anxiety in teens:What it looks like and strategies to help from Parent24 offers some insight into this topic.

In our home, Michael and I have a golden rule all year round but most especially during the month of January: we ensure that we are available to Talisa and Eli to listen to anything they have to say. We believe that “how you start is how you finish” and we want them to start strong. What they are saying or not saying as they begin the daily school grind are markers that guide us on how best to support them. We know that as teenagers our children need us to listen more and to lecture less. Sometimes that can be really hard to do as parents. An educational psychologist has been part of our parenting journey at different times and we value the process that we went on with them in helping us to help a specific child at a specific time.

Savannah being autistic meant that our then educational psychologist had her work cut out for her in teaching us neuro-typical parents a totally different way of thinking about parenting. We learnt how our emotions affected Savannah when we did not understand what she needed. We learnt that we caused more anxiety if we indulged ourselves with unbridled expressions of emotions. It only exacerbated the issue at hand as Savannah’s anxiety increased and we became part of the problem when we should have been part of the solution. We learnt how to express ourselves in a way that became supportive to Savannah without any outbursts from her or us. You could say, having learnt to respect our child’s right to a space that is calm and patient, means that Savannah trained us well for her siblings. 🙂

Generally teenagers are usually more emotional yet less able to express that in a way that will be helpful to themselves. We want Talisa and Eli to feel free to express their fears and hopes without the worry about whether or not it will displease us. We want them to feel brave to go to every corner of their souls to seek out what might be possible for them and to be able to explore those ideas with us. Even if we do not understand it, it is more important for them to feel free to express themselves than for us to limit them to only our own understanding of them and to our dreams for them.

This time of planning, discussing and listening to each other before the school year consumes us is empowering for all of us. Our plan includes our goals, how to achieve that and what supports are available to each family member. I wrote about this last year in my post The Safe House. Each person writes down their personal goals, their academic or career goals, their spiritual goals and we agree on a goal or goals for us as a unit. We talk about what we have written and if necessary we discuss how the family routines or resources will be restructured to support relevant goals. We also write down how we plan to achieve each goal and by when we want to accomplish each goal.

Having a child who is autistic and medically complex means that Michael and I cannot completely plan what she will need during the year. But sharing our goals together means that we are all continuously looking out for each other. Not only are Michael and I mindful of being available to the children and being realistic about what they need; the children too become more involved in how we function as a family. We found that as they naturally assume more responsibility for their sister than she will ever be able to do for them, they also naturally become a support system to each other and in some ways to us a well. This is not a bad thing for children.

We discuss different areas of our lives as we plan for back-to-school. Some areas require more detailed discussions and others may require a less detailed discussion. From having daily routines and acknowledging how each of our routines impact each other, to deciding who we will pursue relationships with and who we will cool off from (if anyone) are all part of these plans for the forthcoming year. We pray for the year ahead and for each other.

Talisa and Eli were all smiles on the first day of the new school year.

During the year Michael and I make a habit of checking in with each other and with the children about their plans. We also celebrate when the children achieve a goal (Michael and I are learning to do the same for ourselves too). At the end of each school year, we review this document. It is empowering to see how much each person achieved. If someone did not achieve a goal we discuss this together. We facilitate a discussion to help our children reflect on themselves for answers as to why they did not achieve a goal. This has been of greater significance for them that we do not accuse them. Ultimately, we want our children to take responsibility for the pursuit of their dreams. We want them to be brave enough to be self-aware of their own shortcomings. Mostly we want them to learn how to pick themselves up and to persevere instead of falling into self-criticism.

During all of this, the very personal goal I set for myself is to be a parent who helps her children to aim for the highest version of themselves with self-respect and self-love.

Next week, I will share more about how I helped my teens get into a positive mindset using an idea I learnt at Journey To You.

A Million Beautiful Pieces December 29, 2018

Review: Jimmy’s Ormonde Fresh..Hot..Yummy #KillerAwesome

Every now and then, it is my great pleasure to step away from my inspirational blogger vibe and step into other areas to write about. A few weeks ago I had the great pleasure of attending Jimmy’s Ormonde for such an experience where sampling their food was all I had to do or so I thought. December 12th, will probably go down as one of the sweetest evenings that I’ve had in the longest time.

A special evening with my daughter Talisa celebrating her Honours Award for Consumer Studies

I am a big believer that food should not cause strife or stress. The sharing of a meal together should bring contentment to both one’s tummy and one’s heart. I like beautiful flavours, that are comfortable to both the tongue and the tummy because I find that when food is pleasant, satisfying and also surprising, then it somehow lends itself to helping people to drop their guards or to come out from the one’s they hide behind. A great meal can be a channel for a wonderful meeting of minds, hearts and souls.

Oreo Milkshake – No Brainer that was my drink of choice

So there I was at Jimmy’s Ormonde with my daughter Talisa and I only knew one other person at the table which was Taryn Victor (she is the author of the blog Diary of a Whimsical Girl and now one of the beautiful people in my life).

The talented and beautiful Taryn Victor and I.

I did not know the other ten guests at all and I was to share a meal with them. I was a little nervous, not knowing what to expect. To start our evening our waiter ran us through the extensive drinks menu. Drinks are a great ice breaker. And yes, it works even for those of us who do not drink alcohol. Jimmy’s does not serve alcohol so it makes it “the place to meet” for those who prefer to be in an alcohol free environment.

I have two weaknesses in life: dancing and eating anything containing Oreo cookies. To my palate’s pleasure Oreo milkshake was one of the drinks on offer. At that precise moment, in my head I heard DJ Khaled and Justin Bieber singing: “You stick out of the crowd, baby, it’s a no-brainer. It ain’t that hard to choose”. You get the idea of how happy I was. Talisa chose a Ferrero Roche milkshake and other guests also chose form the more traditional milkshake flavours to other more inspired flavours.

With the drinks served and everyone easing into the evening, we were ready for the feasting to begin. When the Cheesy Garlic Rolls made its way to the table the “oohing” and “aahing” accompanied by grins as we looked around the table at each other instantly made us all friends. I love a good salad that is not too complicated in its flavour profile when accompanying other dishes. The fresh Greek salad that was served was just that. Uncomplicated and deliciously satisfying.

What followed was nothing short of merriment on plates, in glasses and around the table. Jimmy’s Ormonde served up platters of prawns in Jimmy’s signature flavours; Kashmiri and Lemon Butter. The South African spirit of Ubuntu kicked in as everyone made sure that each one of us tasted the different flavours on offer.

“Not” Spicy Prawns for those who can’t handle heat

Spicy Prawns for those who need the heat.

If you are someone who loves a good seafood dish, like I do and your better half can’t eat seafood; then Jimmy’s is the place where you can meet each other halfway. In addition to their seafood menu, they also have a selection of chicken and steaks.

I am not a fan of red meat and if I eat it, then I like it to not taste like meat. There are a variety of sauces to choose from when eating chicken or steak at Jimmy’s Ormonde. You can request which sauce you would like your meat to be grilled in. You would be hard pressed to find an eatery as flexible as that.

Jimmy’s sauces are also bottled for purchase.

We had way too much fun and in no time, it was almost eleven o’clock.

My daughter Talisa in the middle with rather accomplished people in the world of food, Amy to her right and Loyiso Mtoba to her left.

Before we left though there was still coffee and dessert to get through. I am not sure how we managed to finish dessert after all the plates of food we had already consumed. It must have been that the staff were so attentive and gracious and the owner was so proud of his establishment and the quality of his food; that we just didn’t want to leave. Dessert was a choice between malva pudding with custard and ice-cream or a decadent chocolate brownie with ice-cream. These desserts were paired with a choice of coffees inspired by middle eastern flavours.

Malva Pudding and Custard and Chocolate Brownie and Ice Cream

A few months ago, I wrote a post “What’s Food Got To Do With It?” about the pressures I felt as an Indian woman to provide food and entertain in a way that was not personally pleasing to me. I think food is the vehicle that creates wonderful times for families and friends to meet and it should be enjoyable for the cook and host as well as for the guests. On that note, because Jimmy’s Ormonde is also a take-away eatery, they are now on my list of places to order from. As a mother to a daughter with a disability, sometimes what I want to prepare by myself has to be outsourced due to my child needing my attention a little more than usual. Having the option to order a meal that will make everyone happy and delight us a little too (because sometimes we all need a mood lift) , certainly makes Jimmy’s Ormonde one of my favourite eateries in the South of Johannesburg.

You don’t have to only take my word for it. Follow the links about this wonderful evening captured on Nadia Manjate’s You Tube Channel or read about it on Nothando Mashaba’s Blog, The Diary of a 21st Century Nguni Maiden. The Concious Creative.

Thank you to everyone at Jimmy’s Ormonde, to TNC Marketing and to the one of the nicest group of foodies I’ve had the pleasure of sharing a meal with.

Empowerment December 10, 2018

Christmas Blues Creeping Up On You? I Hope You Know You Can Live a Good Life

My family and I are slightly obsessed with Christmas. We usually can’t wait to set up our tree which is a celebration that is infused with a few of our own traditions. The most important being that we have a special dinner afterwards to kick off the countdown to Christmas Day. But before we tuck into a sumptuous meal (which I never spend more than an hour making, because simple, easy dishes are fundamental to my sanity); we complete a few other traditions. One segment being the specific part that each of our children play in ushering in the Christmas season when we decorate the tree.

Eli places the star at the top of the tree, which has always been the job of the youngest child.

When we only had the girls, it was then Talisa’s job to crown the tree with the star. Now she has the job of switching on the tree lights.

The Christmas baubles with photographs that are on the tree were made by my sister-in-law as a gift to us in 2015.

Savannah being the eldest gets to place the wreath on the front gate with help from Michael. Each person places their own Christmas ornament on the tree and we capture the moment in a photo to mark the occasion. I keep photographs of this moment for each child for almost all their lives.

We have ornaments for extended family too and they get to decorate our tree with it when they visit us. Then we have ornaments from friends and family who live far away and we think of them as we find a bare branch for their ornament.

As I watch my children taking more of a lead in decorating the tree and I listen to their banter about continuing these traditions in their own homes one day, I’m struck by the contrast in what makes up their childhood memories and in what makes up my childhood memories. This time of year can be a wonderful experience for many children when their families look forward to coming together to recreate moments from an ocean of memories filled with traditions, warmth and love.

The festivities were of no interest to our black labrador Blue.

For adults with traumatic childhoods, this time of year can be a sad reminder of what we missed out on as children. The magic of Christmas are only drops in our ocean of memories. I remember so many Christmases as a child feeling an ache inside of me as I ‘made-believe’ that I was happy. I wrote about this earlier this year in the post The Past And the Present Met and in a post last year You Cannot Be Depressed Then There Was Me

I remembered so badly wanting the make-belief to be real. With that childhood as my backdrop, I became a parent to a child with a disability at eighteen years old. I had to parent within a family and a social circle with loose morals and a tight grasp on maintaining the look of success at all costs.

For many Christmases as a parent I wrestled with depression and suicide. Not having developed skills to recognise and to deal with trauma, meant that I felt more overwhelmed at this time of year as my life became defined by my daughter’s special needs. It was a very long process to becoming mentally and emotionally strong.

What kept me from completely going over the edge was the determination to raise my children in a life that was without fear, without self-doubt, without question of my love for them, without insecurity and without violence. I wanted my children to know what it felt like to look forward to weekends and school holidays and to enjoy being with their parents in peace. I wanted them to have the freedom to express themselves freely and honestly without restraint or fear of disappointing anyone.

I wanted them to want to live each day to its fullest.

I wanted to ‘want to live’.

I wish someone told me that it was okay to be depressed and that I could still live a good life. Now I’m telling you. You can still live a good life.

I wanted to get better from having lived with sadness for so long. It felt like it was in my bones. It was so much a part of me that it took a long time for me to recognize it. But eventually I did. I did whatever it took to get better. For me it meant learning to believe that my life had value. I found that value in understanding who I was as a child of God. I am so eternally grateful for that simple truth and all that it has given me.

Becoming more of who I was meant to be was a process of understanding my faith and understanding myself. I could not always get professional help and it was incredibly tough to have to deal with my demons very much on my own at times. There were relationships that I could lean on at different points, in big ways and in small ways. There were also very dark days when no one understood what I was going through. I wish I had known about the South African Depression and Anxiety Groups website which would have been incredibly helpful in finding resources.

Someone told me they felt I write to ‘poke the world’. I guess that is one way to look at it. Though I have never intended to do that. I simply write because I’m grateful. To have lived with depression and to have overcome suicidal feelings while being responsible for what seemed like everything and everyone, is a story worth telling. It is worth telling from all its perspectives and all its shades.

It is especially worth telling at Christmas time, when I am snuggled in my home with my Christmas tree twinkling away and the memory of all my loved ones beaming with delight keeping me company. December is a time when many people from all different walks of life are more likely to be depressed and suicidal. If this season makes you hurt like hell and you can’t find something good to hold onto then please remember this:

The past is made up of memories. You are a seed of hope. Starting today you can make new and beautiful memories.

You are as capable as anyone of having a good life. Believe Me.

We love our Christmas ornaments. Each tell a story of a life of abundant love.

For helpful and practical advice about how to deal with the Christmas Blues, you will find this article Understanding and Coping With The Christmas Blues by @DarleneLancer worth a read:

I particularly like the helpful online videos from the South African Depression and Anxiety Group.

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.

SA Mommy Blogger Awards 2017 November 19, 2018

SA Mommy Blogger Awards: Best Social Media Expert went to Choose A Row

If you are new to social media and might be wondering how ever do people earn a living from posting photographs, then you need to know about the blog ChooseARow by Teri Row. Teri was the winner of the Best Social Media Award from the SA Mommy Blogger Awards.

Teri’s blog answers all your questions about social media and working with brands. She herself is a brand manager and a social media expert. She is also a mommy. How does she juggle it all? Teri clearly loves what she does and from her posts, you know that she is a master of her trade.

Teri’s winning posts were “Don’t be fooled yoh! What brands need to know.“. Teri expertly explains how to work with brands and what to consider in becoming a social media influencer.

I loved Teri’s other winning post because it is so relevant at this time of year. I myself am a newbie at social media and it can be daunting to post consistently in order to remain relevant and influential. However over the silly season, this can be quite tricky as the call to relax and unwind beckons us. What will become of our social media platforms? Will we be erased from the internet if we don’t post over December? Well, Teri clears that up in her post “The Silly Season Switch Off”

Teri, thank you for sharing this valuable information, and for empowering other women and mothers too. You definitely deliver “kick ass content” and you embody “the spirit to succeed”.

A Million Beautiful Pieces October 24, 2018

What’s Food Got To Do With It?

A few weeks ago, I wrote a post “I feel you Maleficent“. This post was about my challenges in being organized as a primary caregiver while working-from-home.

It somewhat described the hills and valleys of my weeks. Last week being both a hill and a valley. It was one of those weeks when managing my commitments and time was tested. I was looking forward to a visit from friends from overseas as well as Talisa’s sixteenth birthday celebrations. We also had a fiftieth birthday party to attend that same Saturday before our friends were expected to arrive. There was shopping to be done and sleeping arrangements to be made, and a pending decision on how to celebrate Talisa’s birthday.

When I was younger, I couldn’t quite figure out how to be both a mother to a child with high needs as well as to fulfill the expectations on me because I was an Indian woman. Everyone took for granted that I must be able to cook up a storm and somehow that was a mark of accomplishment for a woman. While other people have been precious about ingredients and the way food must be served, I have only ever been precious about time.

How much time did it take to cook? How much time do I have to get Savannah ready? How much time do I have to race through the shops before I need to collect a child from school? How much time before Savannah has a meltdown? Eventually I would cancel the arrangements at the last moment because I just couldn’t cope. Then I lived with regret that I cancelled and the guilt that I was not living up to some imagined standard.

I was anxious because I thought that I had to impress people with my culinary skills. While no one said they expected that, it was hard not to feel this way. Socializing around food was something my extended family and friends enjoyed, and I did not have that in common with them.

Food is a sensitive subject in many families, and I suppose in a few other cultures too. When I was growing up, I remember the fabulous dishes my mother cooked. She is an outstanding caterer both in cooking and baking. But I also remember how tired she was afterwards and how she rarely ever sat with her guests and enjoyed them. So much of entertaining was about presenting the food and eating it at exactly the right temperature. She would leave the dinner table often to refill serving dishes and then afterwards she would be busy clearing it all away.

I knew I couldn’t do all of that she did and still be true to myself, yet I did like to entertain and I wanted some sort of organisation on how to do that so that it worked for my lifestyle. Over the years, as I’ve learnt to accept that I am not Wonder Woman nor do I have to be, I have also learnt to be confident in being true to my own abilities as an hostess. I had to juggle being a caregiver and a person who loved to entertain, and I had to figure out what that looked like for myself.

I made a choice to take every opportunity to live in the moment when possible. I will cook delicious meals with heart, when I have the time and energy: that could mean Breyani for my household on a weekday when Savannah sleeps until two in the afternoon, or samoosas and a packets of chips and biltong for guests when she is awake from four in the morning. But mostly whatever I was going to do, I would do with heart and with much respect and kindness to the cook (myself) and the guests.

So that being the background; when my friends visited we had an amazing twenty four hours of food, laughter and friendship. My mum prepared all the main dishes and Michael and I prepared the side dishes and snacks. We had returned from Kwa-Zulu Natal that morning after attending a funeral, and had not slept much in three days.

A few years ago, I would have dreaded having people over when everything wasn’t as perfect as I wanted it to be. But I now know very well that people are always more important than things and a moment passed never returns.

I miss out on many events and pass up many invitations because of my unusual work commitments and being Savannah’s primary caregiver. Therefore when the opportunity is within my scope to entertain and be around people I love it and I grab it with both hands and all my heart.

I was energized by my friends and by the time they left, I was inspired enough to turn my attention to Talisa’s birthday celebrations. She did not want a party and eventually I made a few easy platters for our families who visited Talisa.

It is my tradition that I never buy their cupcakes for school celebrations, and always make them myself. This year was no exception and I made Chocolate Fudge Cupcakes for Talisa to take to school.

With that was done, the children off to school and Savannah still asleep; I made breakfast for myself with a large mug of white cappuccino, sat in my favourite spot and watched the movie “The Light Between Oceans”.

I loved that I regretted nothing!

I hope that you feel free to cook up a storm or …not.
More so I hope that you give yourself and the women around you the freedom to do the same.

A Million Beautiful Pieces September 26, 2018

I Feel You Maleficent

As I wrote in my previous post (5 September 2018) I made the choice to leave a full time job and to pursue a career as a writer and speaker http://amillionbeautifulpieces.co.za/2018/09/05/i-am-bravely-making-the-scary-choice/.

Making the transition from one career to another is quite daunting. Then to do something so different as working for myself and being based at home is another paradigm shift. To work from home where my adult daughter Savannah (autistic and has physical challenges) spends all her time, adds another dimension that requires planning and patience.

Before I made the choice to make this change I thought long and hard about this. Working from home means that I have to be unbelievably disciplined. Especially when as a mum, it is usually my job to make sure that everyone has everything they need all the time.

Part of the planning process meant that I had to decide what and who I had to do without. Meaning I would not be in a position to attend certain social events that would be beyond my new budget and it means that I had to forsake having a full time helper.

I am truly blessed to have a lovely lady who comes in one day a week to help me. I am in awe of her. She literally scrubs down everything and makes the effects of this one day very meaningful. However for a family of five there are many domestic chores that must be done consistently.

This was my first challenge: to have a plan of action on how I was going to get through the household chores and my work at the same time. I can’t function in chaos and am known to morph into Maleficent on a bad day when I feel out off control. Therein was the first challenge. How to control the external so that I could control the internal?

Challenge two is somewhat more complex. It requires that I must be emotionally wise and mentally strong. That makes me feel tired, even as I write it. Yes, challenge two is how to manage challenge one while I also have to be my daughter Savannah’s primary caregiver.

As an autistic person with physically complex needs and as someone who is struggling to come to terms with the reality of her life, Savannah largely lives within her own time zone. Some days she might wake up at seven o’ clock and the next day she might wake up at two o’clock. Sleep is a fluid thing for her. On a good night she will wake up twice. On a not so good night we may get four hours of sleep. Of course she recovers the lost sleep …in her own time. We don’t.

When she is wake she needs some physical help. She also tends to perseverate on certain topics and may ask me the same question a few dozen times or may tell me something a few dozen times. She has some medical issues for which neither her doctors or I have worked out as yet when to expect a flare up. Thus being flexible, patient and kind is the mountain I already knew I would have to climb all day and everyday from here on out.

That is not easy for me. I’d love to tell you that I follow some programme on how to maintain my peace but sadly I am still a work in progress. I am frustrated sometimes that I am limited by what I can do because my daughter has no options for her life. Oh, I’m sure that many people want to hear that it is fulfilling to look after one’s child when they are so vulnerable.

What is fulfilling about not being able to afford all the health care that your child needs? Or not being able to have care options for her that did not include and be limited to my aging mother. I’m human. Of course I want to be able to do something that is relaxing for myself more regularly (like not once a year). But yes, I’m a more than a little tense, when I have to leave Savannah specifically because she has been smacked and teased in the past by those who were trusted to care for her.

The perceived fulfillment of being a primary caregiver to your child in these circumstances is just a like fairytale…pretty story with scary undertones.

So here is what I did. I thought about what I can control and that addressed challenge number one. I can control how the house is cleaned and run. And the first step in that was to get rid of anything that we did not need. This resulted in several bags of clothing being donated to three families. We also gave away some pieces of furniture, toys and ornaments.

Basically anything that was just one more thing to clean but had no functional use had to go. I think I can write a whole series about decluttering……..and decluttering when you have a child that does not know how to cope with physical changes in their home. I won’t labour on this for now but I’ll share this story at another time.

As always my concern is that during these changes I want my husband and children to know that their experiences within this is important to me. Therefore underpinning my decision to work from home was several conversations with them about what it will be like to have me around all the time and what it will be like until I am earning a salary again.

Children can’t always think through all the layers that we adults can see. Sometimes as spouses we too don’t have the same view of our shared life. Therefore Michael and I had to talk through what working from home, and specifically working for one’s self in something as unusual as pursuing becoming a writer and being a paid motivational speaker, will mean for us.

We also extended this conversation in parts to our children. We had to talk through life without a helper and what that meant. It is always a struggle as a parent to know how much is too much for your child. I think in the area of being involved in chores it is especially difficult because in South African suburban households many families have full time domestic workers and many children do not have chores.

I also felt conflicted because Talisa and Eli help their sister with her needs everyday. How then does a parent know what is reasonable to expect from an almost sixteen year old and an all most eleven old with busy scholastic and sporting schedules?

Here is what I learnt:

Talisa and Eli do not count what they do for their sister as a chore. They were a little taken aback that I would see it that way. Talisa annoyingly reminded me for the umpteenth time that whatever they do for Savannah is what siblings do. Lesson learnt again for this mama bear: my guilt has no place where love lives.

The Super-mum title is not mine and I have to keep refusing that crown. As the weeks progressed everyone settled into having me around but they needed reminding that having me at home did not mean I was available to them as and when they wanted me. Hey, I’ve just clocked forty! I can’t do everything for everyone. So after more discussions I’ve negotiated a trade: a foot rub and cups of tea and coffee, and they can keep the Super-mum crown and all that goes with earning that title.

Tears are a part of my story. Sometimes I will cry for all that I can’t be. Sometimes I will cry because life is unfair. Sometimes I will cry because the endless cycle of the same emotional roller coaster is unbearable. But mostly I will cry because I love. I count myself extremely blessed to know that.

These are the tears that make up my crown. I wear that one without any fuss.