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A Million Beautiful Pieces February 7, 2019

Should siblings be responsible for each other? And if so, is that okay?

Savannah loves this photo of her with her siblings.

When parenting a child with a disability many people offer advice or opinions from their perspective of what would be best for a family like ours. People are not shy to give voice to the potential problems which they believe we face. Specifically, people assume that when non disabled siblings are raised with a sibling with a disability, it will cause some level of hardship in some way to the non disabled sibling. The idea that non disabled siblings will be responsible for their disabled sibling, is frowned upon. This blog post, like most posts that I write, is about giving insight into our lives in the hope of giving other families the vocabulary to speak their truth.

When Michael and I became pregnant with our second child Talisa, we had no fears about anything concerning the new baby. It might have been due to my new-found faith or it might have been that I was still in the honeymoon phase of my marriage. When Talisa was born unlike her elder sister, she was not a person with a disability. She was a demanding baby though and tested my resolve in many ways. But I was happy to have two children. We were very hopeful about the future for our family.

Sadly few people shared our delight. Some people thought that they should educate me about all the problems Talisa was going to experience because of her relation to Savannah. One person thought that Talisa would likely have poor speech because Savannah had a speech impediment. Another piece of unsolicited advice was that it was very unfair to Talisa to be born into a family with a person with a disability as she would be “burdened” with her sister. Someone else suggested that I should limit the time that the girls spent together. The list goes on.

Eli shares Savannah’s passion for gorillas. She was in awe of the wind-up gorilla toy he gave her for Christmas.

In hindsight I think most people were expressing their own fears about parenting a child with a disability. Of course, it was challenging. Especially in the early days when in many areas of development, Savannah and Talisa were on the same level. Even though there was a six-year age gap between them. While adjusting to mothering two girls with different demands, I was also trying to learn all about Savannah’s diagnosis. Savannah was a diagnosed with cerebral palsy. She was non speaking and had other issues that I could not quite understand. She was only diagnosed as being an autistic person when she eight years old. I can only describe the first three years of Talisa’s life as the ‘twilight years’.

By the time Eli came along we were a little more settled as a family unit. Both girls were besotted with him. Together all three formed their own unique relationship. I know many of my friends who have a child with a disability and non disabled children, often testify that having more than one child is the best thing they did. For those parents who choose to only parent their child with a disability, I understand that too. Raising children today is demanding in many ways, and at different times I struggled with the demands of being a parent. More so I struggled with the enormity of Savannah’s special needs. Please do not ask me if it is better to have more children or not after having a child with a disability. There is no better or worse when it comes to children. It is just about working out how to be the best for yourself and for your child or children.

Talisa reminds me that some things are not deep psychological issues. Some things are just what siblings do.

So fast forward to the present day, when Savannah is twenty-two years old, Talisa is sixteen years old and Eli is eleven years old. Talisa and Eli have some responsibility for Savannah. I was aware when both children began assuming certain areas of care for her. While those old voices sometimes echoed in my mind that my younger children shouldn’t be responsible for their sister, my children kept me in check.

My first check was a few years ago when Talisa spoke at an awareness event. She said that she does not often tell people she has a sister who is a person with a disability because she does not want to hear “Oh shame.” She continued to explain that when she meets the non disabled siblings of friends, she never responds with “Oh, shame”. She is a cheeky girl. Her point simply being that Savannah is just her sister like all other sibling relationships. While their relationship has different nuances to most siblings, she does not appreciate that “Oh, shame” is the response it should elicit.

A few more checks came as Eli grew. Being a boy, he easily slips into the role of protector. He enjoys teaching Savannah pranks and jokes. He helps her with: tying her shoelaces to assisting her with her communication software to exercising with her. When Michael is late in returning home, Eli helps Savannah with her bed time routine. (She does not stay asleep whenever I help her to bed, and somehow sleeps better when Michael or Eli put her to bed). I had to stop thanking him for what he does when he asked me to “stop making their sibling stuff awkward with my mum stuff”.

In homes like ours, where one person is vulnerable and will remain so for the rest of their lives, the levels of care and protection that develop between the family members are unique and precious. Few people outside this type of dynamic will understand it. We are always thinking about what might be too much for the non disabled siblings as far as being responsible goes, against what is vital to building strong sibling bonds. For many families siblings are more trustworthy than a professional care giver or another adult. In truth, one day they will be the only people who will oversee the care of their sibling with a disability.

This week as Savannah began her new therapy program, we created a group on WhatsApp for the team so that we can easily transfer information between home and therapy. Both Talisa and Eli are included in that group. As her siblings they share all her milestone moments with her as well as her day-to-day life. It is offensive to them when they are excluded from important areas of Savannah’s life. Talisa asked me once why people make a big deal about her role in Savannah’s future? She said that most siblings have some level of care and loyalty towards each other. How can anyone expect her to be detached from Savannah’s life when they both become adults?

Little brother is watching. Eli keeps a watch on Savannah’s YouTube browsing.

In raising our children, we did not heed the advice of anyone who thought that Savannah would be a burden to her siblings. We simply raised children in a home with a family that loved each other. Like all children, Talisa and Eli go through all the usual issues and triumphs of life as they grow. They have their own challenges, their own dreams and their own goals. Unlike other children they learnt a little something about tolerance and patience early in life. I think the best lesson they learnt is about accepting people for who they are. They are not angels or better than other children. They are simply siblings who get to understand loyalty and love much quicker than most.

For all parents of children with disabilities, we live with a constant fearful thought that we try to ignore. What will happen to our vulnerable children when we die? When we have more than one child, none of our children will be alone in the world. Especially our child with a disability.

Each family is different and every sibling deserves a life that is true to who they are. As parents we are responsible for building that life. Please think about that when you meet a family raising both disabled and non disabled children.

If you found this post helpful, you might also enjoy reading about Being Courageous Even In Uncertainty.

A Million Beautiful Pieces January 22, 2019

My Greatest Gift This Year: Journey To You (Part Two)

Today’s post is about a new idea I used to develop a positive mindset for Talisa and Eli as they began the new school year. It seems that my participation in Journey To You is a gift that keeps on giving as the idea was one which I learned at the course. I posted part one of this journey a few weeks ago: “My Greatest Gift This Year: Journey To You”.

When I participated in the life coaching course Journey To You, we learnt a valuable exercise about self-awareness and self-love. There were many coaches taking small groups throughout the three-day course. My coach was Maligay Govender and this was one of the processes which she guided me through. I had to list positive attributes about myself on an A4 length of page. It could be what I thought of myself and what others have said about me. It was incredibly difficult to do because I saw myself in a negative light. With encouragement and friendly firmness Maligay encouraged me to get that list of positives done.

When I thought I was done, she challenged me to draw another column and to add more positive words about myself. It took a very long time for me to do that. Imagine that. I who believe in seeing life with possibility and beauty, could not find many positives attributes about myself . When I had filled out as much as I could, Maligay encouraged me to read it out loud with the words “I am” before each descriptive. There I was, feeling a bit silly but at the same time knowing I was standing on the edge of a big change. So I began:

“I am resilient.”

“I am loving.”

“I am wise.”

“I am resourceful.”

“I have nice eyes.”

“I am the best mum ever.” (Savannah frequently tells me this).

“I am soft.” (Eli’s description of me).

“I am a role model.” (That is how Talisa describes me),

and on and on I went listing off 43 positive aspects.

Maligay added her own descriptions about me which were very touching and it took me by surprise. She encouraged me to speak slowly and to think about each attribute. I can best describe the experience as a computer that had crashed and during this exercise was finally rebooting. Then I was back online. (I know it is strange that I compare this experience to a computer but I worked as an assistive technology advisor so it is still the lens with which I see some aspects of life.)

Last week I wrote about the importance of being mentally and emotionally prepared for back-to-school in the post Back-To-School:How you start is how you finish. I found great value in the exercise that I learnt at the course and introduced a simplified version of it to my children in our back-to-school preparation.

Talisa and Eli struggled to write down positive attributes about themselves. They both said it was easier to write down all the negative beliefs they held. I wonder where they got that from? Unfortunately they got that from me. It was a good lesson in the importance of mirroring self-care and self-love for children. What was even more meaningful is that Savannah was also part of making a list of her positive attributes. I verbally listed many positive words and she chose which attributes best described her. Then I wrote it down for her.

An example of positive personal attributes or character traits for children from http://www.teachingmaddeness.com/

When Talisa and Eli finished their list, they read it aloud with the words “I am” before each description. It was so moving to watch how their faces came to light and their posture changed as they went through the list. Like Maligay taught me to slow down and to be thoughtful about each description, I encouraged Talisa and Eli to do the same. It was a singularly empowering exercise and one that both children found enormous value in.

I realised that no one actively pursues holding onto negative beliefs about themselves. Yet life has a way of subtly bringing those negative beliefs to us as if it would be arrogance to think good of ourselves. Yet imagine going through life facing all those negative beliefs with a repository of positive personal truths to combat it with? It would simply be a Journey With Ourselves.

“As a man thinketh in his heart, so is he.” Proverbs 23v7

The pursuit of academics and all it entails must also be a journey of self. Not one that destroys our children or costs them their emotional and mental well-being. Children are children for such a short time in the story of their life. Being self-aware and loving oneself is surely the route to loving others and to creating a fulfilling life.

Some of the coaches who guided the participants.

If you are feeling stuck in your journey, why not book a course with Journey To You. Not only will it free you to be yourself. It will empower you to be the best version of yourself and to mirror that for your family. For more information about the next course, click here.

And finally, I dare you to make a list of all your positive attributes and to say it out aloud. Let me know if you do. Believe me when I say that there is no journey worth taking like a Journey To You.

Thank you again to all the coaches, the participants and Deon Greonewald for this wonderful journey.

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 January 2, 2019

What You Do Not See In Our Photo Taken On New Years Eve

I share this post with the deepest love for my children, their friends with special needs and the siblings of people with special needs.

It’s not often I write about the challenges that we face as a family with a child with special needs. I prefer not to discuss this so publicly. I know that it is not easy for people living outside of this perspective to fully grasp the love and heartache that co-exists for families like mine.

Yet today I will share this photograph of our fireplace and candles while we waited to usher the New Year in that holds within it more than it shows. It looks warm and cosy. That it was.

Not seen in this photograph was our daughter Savannah who is off camera to the left. She was using her noise cancelling earphones as she tightly crouched on a couch. Curled up in as much as she could make her body curl. Her face was buried in her hands. Her siblings, her dad and I were taking it in turns to hold her. Our neighbourhood erupted in fireworks and boomed their music as the rain poured down until four o’clock in the morning. Even with the noise cancelling earphones everything became too much for Savannah. She was in a panic attack and there was no way for us to stop any of the triggers.

As an autistic person, for Savannah (not all autistic people have the same reactions to the same issues) loud unexpected noises set her heart racing and she falls into a state of panic. She goes into full shutdown and struggles to focus. She needs calm and comfort which after twenty-two years of raising Savannah, we know how to be still and not allow our frustrations to take over. If at all that we even feel that anymore.

It would be easy to say that there are laws in place prohibiting the use of fireworks and that loud music is not allowed after a certain time. However if anything we have learned as a family of a child with special needs is how aggressively most of society feel entitled. It’s such an interesting perspective to parent Savannah. She is actually entitled to so much because of her disability such as a simple matter of being in front when watching a show as she is unable to look over someone’s shoulder. Yet, I still find myself asking people not to stand in front of her wheelchair at events like these.

Or for family and friends who become upset when we don’t visit them or don’t invite them over or can’t attend their event. It is baffling how we are easily cast aside for these reasons because people assume that my life is about them. Travelling with a person in a wheelchair means having enough space for three children in the back seat plus a wheelchair in the boot. We drive a sedan. We can likely carry one small bag which is usually Savannah’s bag of extras. Once that is loaded into the boot, there is nothing else we can pack in. So travelling too far is not an option and Savannah cannot sit upright in a car for too long. Hence we limit our travels to what is comfortable for the whole family. I will not even mention the costs of being a family with someone with special needs.

We invite people over who will not mind getting their own coffee or taking a turn to sit with Savannah if she needs company. I can’t have people over who require formal entertaining and also don’t know when to leave. I am sorry about that. It does not mean that I do not like them as people. In most cases I really do enjoy their company, but the manner in which they define entertaining is not one that will work for me. So in that case, we will likely meet somewhere for coffee for an hour or two.

I am trying to make a living. Now I do that by writing and it is not easy. In addition I work from home which has been my daughter Savannah’s domain as she spends the most time in the house than the rest of the family. It is not easy negotiating emotional and mental space with an adult autistic person who also has a physical disability. I spend much of my daily energy helping Savannah to navigate the world from her unique perspective which often I fall short to understand because I just do not experience life the same way that she does. I also take care of her physical needs like bathing and serving her meals to her. When she is in a meltdown state, she will not eat and then I will feed her.

The world is full of people who have a right to enjoy life because they worked for this right. I do not take anything away from that. Yet true living isn’t made up off what rights we exercise. It is made up of what rights we gave up so that someone who cannot survive in this world alone, may at the very least live a life without further challenges caused by those who have the understanding to know better. For this reason our December was epic. We celebrated the season with amazing people who know that being our friend will be different. Very different but still full of merriment. Ours is the home where there is always a party happening and people connecting while Savannah’s needs are respected. For my friends and family who make that happen, we love you.

So what happened to Savannah as New Year’s erupted around us? Well, the most painful truths are not lost on my other children. As we attempted to usher in the New Year in prayer, Talisa held her sister. When we were finished she played Savannah’s favourite Bollywood songs as loud as possible. Both her and Eli tried their best to distract Savannah with amusing antics. Talisa offered to stay up with Savannah so that Michael and I could go to bed. I thought I did not ask for this nor did Michael, nor did Talisa or Eli; yet here we are. A family who understand what is really important in life. Sitting in front of a fireplace with warmth that no fire could have provided. That was nothing to be sad about. It was something to be grateful for.

I thought about the hundreds of families I know, who at that same time were either holding down their loved ones as they agonised against the loud sounds or fought to break through doors in an attempt to find a safe space or created their own louder sounds to drown out the external noise or lay still after seizures racked their minds and bodies. I thought about the depths of love and heartache we live with and yet the next day our social media posts will only reflect one part of this story.

My posts will never show what challenges we face as Savannah’s family. She does not have seizures or big outbursts that may cause harm to other people. No, our daughter harms herself. In addition due to her physical disability, tension causes her muscles to go into spasm which means that for a day or two, she may not be able to leave her bed without significant help from us. We will never disclose anything that leaves our daughter exposed to a society that seem to know much about life, but so little about living it; so that is the most you will get from me.

I will not share the tough stuff in videos or photographs about our behind the scenes because Savannah cannot exercise her right to privacy and I am the custodian of that. Sharing emotive images will certainly launch my social media profile into a whole new level by telling the story of how disability breaks me wide open and leaves me reeling. That may very well be my right to speak my truth and share my pain. Yet, as I write this and watch my daughter sleep, I know that my rights are forfeit if it causes her harm. Even if she doesn’t know that harm is being done to her. She is unable to protect herself on the internet or tell her side of the story. While she may never know; as human beings our family will enforce every right and carry through every responsibility to protect her rights.

I know this is hard to read, but this is for all those families who are recovering from the New Year celebrations that they were not a part off in the traditional sense. For them and myself I ask this:

Do not speak to us about rights and what people are entitled too.
Do not boast about the one or two times a sacrifice was made to give someone who is vulnerable a better experience.

Simply do this instead:

Live with a consciousness of journeying through this world together. Even if you have to slow your pace to accommodate someone else.
Just as all parents do not want their children to be harmed; please remember that for some of us, our children are children forever. Parents of typically developing children are unlikely to be holding an adult while they are in a full-blown panic attack. So be kind when we leave an event or ask for the noise to be lowered.
Give someone the benefit of the doubt.
Travel light without all the hangups of who did not show up for you.
People need people. Not things.
Forgive and then forgive again. I get to practice this one often.

To all our co-families of children with special needs:
You Rock.

Here is my disclaimer: I asked Talisa to read this post before I published it and I asked her if it was too jarring. She said “Mum, anything we write or say about this will be jarring and people may find it harsh because they just do not get it. But it needs to be out there. In our family we have the space to talk about this but there are so many families who can’t. Publish it.”.

There are many support organisations for people with special needs. I have listed three here. You are welcome to add the links to more organisations in the comments below.

Autism; South Africa

South African Disability Alliance

Down Syndrome South Africa

A Million Beautiful Pieces December 31, 2018

A New Year Has Arrived by Erin Hanson

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

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

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

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

-e.h

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

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.

A Million Beautiful Pieces December 27, 2018

My Greatest Gift This Year: Journey To You (part one)

Have you ever felt that you needed the world to stop spinning for five minutes so that you can get off, catch your breath and then jump back on again? I felt that way for a major chunk of my life. Life just kept happening and the resources that I depended on began to wear thin.

Those resources were all the voices that took up space in my head and it was the reason behind my drive. It did not replenish already depleted resources nor did it nourish me so that I could keep going. It just drained me to the point that I had no will to pursue my own dreams and aspirations. Yet I did not know how to replace those resources or even if it could be replaced.

I just knew that it was not serving me.

Myself with Deon Groenewald NLP Coach and CEO of Journey To You

These were my resources:
“You are the eldest, you must hold it together”.
“You are responsible for this. You must fix it.”
“You must look after your parents.”
“You must be responsible for your parents marriage.”
“Your mother needs you. Your daughter needs you. Your husband needs you. Your children need you. Your friend needs you. Your job needs you. This organisation needs you. Your church needs you. You must take care of all this.”
“You are responsible for your marriage.”
“You know that when there is a child with a disability, the marriage is under enormous stress. You must make your marriage work.”
“Your other children will be deprived because they have a sibling with special needs. You must make sure that you don’t neglect them.”
“You are the woman. It’s on you to make it work.” (‘It’ referring to anything and everything about life in general).
“You did this. You must fix it.”
“You must hold the family together.”
It’s exhausting just writing that.

Then fast forward to a few weeks ago when my brother Darren called me after he completed a life coach course at his place of employment. The life coach who conducted his training was hosting one final course from the 19th to the 21st December and Darren was very keen for me to participate in this.

Now I’ve heard of a few people who are really good at teaching about self-care or self-help but nothing ever resonated enough with me to attend any course. I also need the guarantee that when I spend money on myself that could be used towards my daughter Savannah’s care, the value must be spectacular.

Past experiences also taught me to stay away from people who need to ‘give me a word’ or promise to ‘heal my life’ or ‘know a lot about how people think’. The most well-meaning intentions by the most passionate people can cause more damage than good. When a pastor, coach or counsellor does not have the skills, understanding and compassion to help a person through an issue that could potentially cause that person to break, they actually have no business engaging an individual on such a personal level.

What was interesting to me is that my husband shares these same reservations as I do, yet it was him who finally convinced me to register for the course, knowing full well that I would be away from home from 9am to 9pm every day for three days.

On the 19th December as I drove to the course, I was ready to be open to the experience and not to show up for anyone else but myself. I have a reputation of ‘mothering’ people wherever I go and I’m known to be an extrovert. This time I just wanted to be true to what I was feeling during the process. Yes, that it’s..I told myself ‘Trust the process’.

The process I was to trust was ‘Journey To You’ headed by renowned NLP Coach Deon Groenewald. NLP is an acronym for Neuro-Linguistic Programming and Deon has earned himself a reputation as a Master of his field. ‘Journey To You’ is a three-day intensive journey of transformation developed by Deon over a ten-year period. It is designed to help people to effect change from a deep place inside themselves that results in an amazing personal journey.

I knew none of this when I arrived at the course. I did not read the course details because I did not want to go into my self-defence mode. As an over thinker and someone who prepares for every possible outcome, I wanted to let the process guide me instead of the other way round.

As I write this I’m incredibly overwhelmed by what took place over the three days. I learnt so much about the science of how the brain deals with information and how that affects our decision-making process. The pivotal points for me was in understanding my conscious mind and my sub conscious mind, aligning my first reaction and my second reaction, learning how to plan for my goals and in learning to plan a celebration for myself when I achieved a goal.

More than learning these pivotal points in the context of the large group, I was also assigned to a life coach Maligay Govender. Each participant was part of a smaller group led by a qualified coach. It was in my small group that I was taught how to apply what I learnt in the larger group. Maligay made the principles and techniques real for me by guiding me on how to integrate it into my life plan which I had begun to fill out from the morning of Day One.

As I write this and recount the timeline exercise that she did with me, I am filled with emotion. Timeline was the most vulnerable I’ve ever been until then and it was the first time I allowed myself to remember who I was as a child. I actually was able to visualise myself at four years old and to reconnect that person to myself today.

Years ago, my then pastors wife asked me to describe myself. Who was I? It took longer than a month for me to give her an answer that did not include daughter, mother, wife, sister, friend and all the roles I fulfil. When I eventually did give her an answer, I gave her a scripture but it did not describe me. It described someone I wanted to be. As Maligay finished the timeline exercise with me, I realised that I could finally answer that question without all the roles that form part of who I am.

I knew who I was without all the events that shaped me. I liked that person. And I wanted to live with her innocence and her passion again. It was so powerful that I cry even now as I understand what a gift Maligay helped me to find within myself.

Maligay and Bharat Trikam, a fellow change maker

On Day three of ‘Journey to You’, I knew that the moment had come for me to commit myself to a process of understanding how to listen to my own authentic internal voice. With the entire larger group of participants in the room, I courageously volunteered to allow Deon to take me through this process.

I am not going to give the details away of how that was done because I fear I may reduce it’s impact and beauty here. I will share this:

There wasn’t any music to influence what happened.
There wasn’t wild applause or coercion from the other participants.
There were many people in the room including a film crew as this was being recorded for television viewing. Yet the room felt that it was filled to every corner and every space with nothing but goodwill and love.

Deon was respectful of me, never asking me to share more than I was comfortable to share. The key though was that his process did not need for me to bare my soul so that he could rescue me. He only needed me to trust the exercise and to trust myself. I walked off the stage without the anger, resentment, fear and oppressiveness that I carried with me for a long time about my childhood. I walked off that stage with the door to a part of my soul thrown wide open and a feeling of self acceptance, contentment and peace.

Myself and Nadia Marillier, a fellow change maker

At the beginning of this year, I wrote that I entered a Women Empowerment Programme as a gift to myself http://amillionbeautifulpieces.co.za/2018/03/09/entering-competition-title/ . I wanted to give myself one year to experience life on my terms. I resigned from that competition because I realised early on that it was not what I was looking for. As I write this, I feel humbled by how God works. Just before the curtain dropped on 2018, God remembered me and He gave me my ‘Journey To You’.

My heartfelt thank you to Deon Groenwald, to Maligay Govender, to all the coaches; and most especially to my fellow course participants with whom I now share another beautiful piece of life with.

I am blessed I am.

I am grateful I am.

I am Desirae I am.

There is so much more I want to share, so look out for part two of My Greatest Gift This Year.

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.

My Inspiration November 27, 2018

My Inspiration: There is ALWAYS Time to Dance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Savannah and I decked out at a wedding last year.

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

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

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

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

Reviews November 26, 2018

Review: I think I’ve Nailed My Christmas Shopping List

It is half past eleven on Sunday night and I can’t go to bed because I’m so excited. I think I found gift ideas that are so relevant to my family. As a family with a tween, a teenager and a young adult with a disability who has very specific likes and dislikes; finding just the right gift that is useful, trendy and guaranteed to illicit squeals of delight on Christmas morning; is not always easy.

I am also awful at shopping for other people. My heart knows how grateful I am and how much I want to express that by giving the right gift; but I feel that I never quite find the perfect gift for my family members and my friends. If you are anything like me, then this may be a helpful read for you.

1. Funko
This is exciting for so many reasons. My family in different ways are collectors. My son and my brother collect a specific brand of toy cars. I collect books by classic authors like Shakespeare and the Brontë sisters, amongst others. We also collect international soccer memorabilia and salt and pepper sets.

We are collectors. And what better range to start my families new collections than the Funko range which are vinyl figurines based on pop culture. I shrieked with delight when I saw the DC Superheroes collection and the soccer players collection.

Savannah my daughter who has a disability and struggles with severe anxiety finds comfort in holding small objects that she can relate too. I am sure she will love the ‘Ed Sheeran” figurine. I mean which young women wouldn’t?

With the vast range to choose from for Music Lovers, Movie Lovers, Sports Fans and Series fanatics , I have a feeling that Funko Collectibles are going to become one of our family’s new collection trends.

2. Solo Range of Hybrid Bags
These bags have got me excited because my son Eli spends most of his week between soccer practices, Kumon, School and Scouting. Some days when we pack his backpack for the day, I feel that I’m packing for a weekend away. It seems that I pack everything but his bed. Going from one extra-mural to the other, we have to ensure that he has the correct clothing, enough food, his phone and school books; if has to eat, work and entertain himself between events. The Solo range has a few options to choose from to hold everything that Eli needs in a day.I am likely to choose between:

The All Star Backpack

The All Star BackPack R1 699,00

Or The Solo Work to Play Backpack

The Work to Play Backpack R999, 00

As a family with a person who uses a wheelchair, we need to carry a few items for her when we leave the house. Especially if we go to parks or family outings, pushing the wheelchair while balancing bags and loose items of her stuff is difficult. We also need a bag that is comfortable for either Michael, Talisa or myself to carry while we push the wheelchair. This Solo Weekender Backpack might just do the trick.

The Weekender Backpack R1 499,00

If you are like me and are still looking for the perfect gifts then visit http://gammatek.co.za/ who are the leading supplier of branded technology in South Africa. Or their products are available at Incredible Connection, Takealot.com, technomobi.co.za, Shopandship.co.za and selected PNA stores.

For myself it means there are a few ticks on my Christmas Shopping List which makes me feel pretty good.