AMBPtruths Archives | A Million Beautiful Pieces

A Million Beautiful Pieces July 1, 2019

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

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

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

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

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

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

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

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

Savannah taking a short stroll with me .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Million Beautiful Pieces February 27, 2019

To Fall: To Protect From or To Teach How To?

Ten years ago Savannah underwent a scoliosis operation. Three months after the operation we began working with a physical therapist to help Savannah to maintain her ability to walk. In the very first session, the therapist told me that she was going to teach Savannah how to fall. My heart nearly jumped out of my chest. I wanted to wrap Savannah in cotton wool and never ever let another bad thing happen to her. Here was someone telling me that we were going to teach Savannah how to fall. Why ever would we do that?

Savannah is careful that her wheelchair is behind her when she stands to prevent her from falling.

The therapist explained to me that Savannah was likely to fall at some point. She was still walking at that stage but was relatively unstable on her feet. She attended a school with children who were mobile. It was likely that she might be bumped. In the event of her falling she would have experienced serious damage to her already compromised frame. And so with my heart in my hands, I agreed to work with the therapist to help Savannah to develop the motor abilities to protect herself if she ever fell.

To my dismay, my vigilance and efforts in making sure that just about everyone who had Savannah in their care, knew to ensure that she did not fall was not enough. She fell. Yet, she did not sustain any terrible injury because she knew how to use her hands to minimise the impact of her fall. Of the many lessons I have learned in my life; this is one that stays with me.

We are living in a time when we have more information than we have ever had before. With the click on a link on our computer screens we find information that transforms us into micro versions of doctors, lawyers, psychologists, therapists, chefs, artists; educators, almost anything. We know how to put barriers in place to protect ourselves and our children before we even have a hint of any potential problem. We spend weeks researching before we choose a dance class or a cookery class. We can diagnose and treat health problems without seeing a physician. (Let me say here that all medical issues cannot be answered by Google. Please do consult a medical professional when your health is at stake).

Talisa completing an activity for Scouts a few years ago.

All to make sure that we circumvent any possibility of a “fall” in our lives.

I have spent most of my life trying to prevent another “fall” in many areas of my life. I’ve learnt as much as I can about the issues that define my life: violence, trauma, loss, teenage pregnancy, families of divorce, faith, autism, cerebral palsy, siblings of children with special needs, health, education, motherhood, and so much more. Every item on that list has numerous sub items. All of which have occupied my mind in different ways over the years.

In many ways I’ve understood the need for all my children to have experiences that help them to learn who they are without my constant vigilance and protection. Talisa and Eli were raised within the Scouts movement. There is nothing like being a Sea Scout and having one’s mental and physical strength nurtured and tested through a series of tasks. My children learnt what it felt like to have to work harder and longer at tasks to accomplish it. Scouting encourages autonomy, hard work, endurance and persistence. For any parent who is struggling to build self reliance and self resilience in their children, I would strongly recommend enrolling your child with a Scouting Troop.

Talisa finished gig adventure twice with the local Sea Scout Troop.

Yet even after all this, I too have been caught by the unspoken movement to pre-empt and protect my children from LIFE. Families these days are wired to make extraordinary efforts to ensure the physical and mental well-being of our children. The pressures that this generation faces are second to none. It’s so shocking in the time of so many advances in all arenas of life, this generation struggles so much with their self-worth. The drive to have a good story to present on social media leaves no room for “learning curves”. For those people who actually experience learning curves or “falls”, we are somewhat struck by their lack of foresight to avoid it. In this day and age, it seems shocking to most that people “allow” their lives to be interrupted by well…..er life.

When Eli had his sudden issue with appendicitis last week, my initial thought was could I have done anything to prevent this? When I spoke to a few of my friends, they were acutely interested in the same question as well as knowing what the signs were and what to do if one suspects this unwanted medical “fall”. No, I could not have done anything to prevent Eli from going through this. In this upheaval I had to do something that I usually don’t want to do. I had to relinquish control and teach Eli to trust the process. I heard myself saying to him that I did not know what to expect after the operation. I was honest with him and with myself that it would be painful and that we would find ways to get through it.

While Eli waited for his operation, we discussed what he could do to help make his recovery less unpleasant.

He had to try in small increments to push himself. He was surprised when he realised what he had to do was never as difficult as he initially thought it would be. He is fast developing an understanding of the power and miracle that is the human body. Savannah learnt this many years ago. She learnt what to be aware off as a person who was unstable on her feet. She learnt what supports to request so that she did not fall again. She accepted the wheelchair far more easily into our lives than I did. She has never once misguided herself into walls or people or down steps. She developed an awareness of her surroundings which is very good for someone with her challenges.

We all want to be wrapped in cotton wool and never hurt. We want to do that for those we love. I know first hand that the things that will cause us to “stumble” and to “fall” are not always physical in nature. The heartaches and damage that are caused in relationships can keep a person down for a long time. By overprotecting ourselves and those we love, we sometimes do not allow our instincts for self preservation and self respect to develop. We become accustomed to someone else protecting us and when they are not around, it becomes easy to fall into relationships that hurt us. With no idea of what our own standards are, we struggle to develop the character traits to withstand life. Without those experiences that allow us room to grow and to trust our decisions, we “fall” never to get up.

In different areas in my life, in different relationships I realise the benefit of knowing how to “fall”. I learnt where the bottom was for myself. It made me determined to never allow anyone to take me there again. Character is not developed by life following the exact trajectory that we plan. Character is developed by how we respond when life happens. I can only hope that as we all move forward with hope in our hearts for life to be better; we are wise enough to learn how to fall and brave enough to teach those we love the same skills.

In truth, when life does not get better it is us who have to get better at knowing how to “fall” so that we may rise again. Then by God’s grace we build again, a better life.

To fall is an opportunity to rise. Only better and wiser than if you never did.

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 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.

Parent Support October 31, 2018

Parenting: Here’s Why It Took A While For Me To Post That My Son Was Named “Player of the Year”

I took a while to write this post. In fact four days before my fingers actually hit the keyboard because I wanted to think about this a little more.

My son, Eli, was nominated by his football club team mates as Player Of The Year. Oh man, I was so thrilled for him. I couldn’t be at the awards and when Michael told me about it, his voice was filled with excitement. It was a deeply meaningful acknowledgement for both Eli and Michael because they have worked very hard for four years to develop Eli to play at this level.

Goalkeeper — Eli at a district tournament

I did not immediately share this news on social media. Last week I was astounded by the excitement that was generated when I shared a post about Eli’s achievement on the Kumon programme.

It was lovely to see that Eli’s achievement in Kumon was so encouraging to so many people but it also made me step back and re-evaluate why the response was so good and what does it mean to me and to my audience. The thing about the internet is that it’s not just about me and what I am sharing. It’s also about my audience and how this information impacts them.

As Savannah’s mother, I understand a little something about being “unable to achieve”. I also know that her unusual achievements have little appreciation in the wider social context. When she began her schooling career at age three, my social group had no idea about how hard we worked with Savannah to achieve simple skills such as holding her own bottle. It took her over seven years to learn how to throw a ball. She still cannot catch a ball unless it is thrown from very close to her and then only if she is alerted that a ball will be thrown to her.

I knew what it felt like to have a child whose report card read “not achieved”.

Over the years, as a parent and professional in the disability sector, I’ve learnt so much about the hard work and effort that so many children and their families put in to achieve their goals. Therefore today as a writer and speaker it is important to me to be responsible in sharing good and not so good stories. It begins with asking myself “why” am I sharing a piece of news and “what” do I want to achieve.

The only reason I share anything is to be a testament to Faith, Hope and Love. Eli achieving anything is not just that he has some gifts, but also that he works really hard in other areas of our lives too. As a family with a person with special needs, and who have minimal help, there are a fair amount of chores that the children have to assist with.

Amongst Eli’s responsibilities are clearing the garden of the dogs’ mess, feeding the dogs every evening while Talisa feeds them every morning, taking the laundry off the clothes line, taking the garbage out, making a fire (when necessary) and cleaning the fireplace, helping in the kitchen either with food prep or cleaning up, cleaning his own room and helping to set and clean the table around mealtimes.

Aside of this, Eli is a sibling to Savannah who sometimes needs assistance in different ways such as sorting out her computers or phone when there is a technical issue. Eli or Michael help her with this. When we attend parties or shows, Savannah also likes to have any recorded media on her devices so someone has to transfer it to her devices. Eli or Talisa usually take on this task.

Savannah needs to stretch by playing ball and she needs someone to take her outside and to throw the ball at a pace that is suitable for her. Eli, our resident sportsman becomes Savannah’s coach and works out with her.

Or when she wants to go for a walk, and I’m the available adult to take her but I actually don’t want to have to talk or listen anymore that day, Eli usually offers to accompany us, and keeps Savannah engaged with his happy banter.

Michael usually helps Savannah to bed, gives her medicines and prays with her. She sleeps much better when he does the bed time routine. But when he is not home, the only person who fills those shoes for Savannah is Eli. What it feels like listening to him go through Savannah’s routine is hard for me to describe. As a mother it just grips my heart and makes me feel like I am glowing from inside. What it does for Eli and for Savannah as siblings, is something one can only understand when you view life from this side of the field.

We know so well that life is full of surprises and challenges. We do not know what hurdles are still to come as Eli goes from boy to man. For now in this season, he has marked his life with these achievements and so I share his news. At eleven years old, while still developing and learning like any other boy of his age, he is also responsible in ways that many children aren’t expected to be or don’t have to be.

That is a testament to having learnt at a young age, that faith can move mountains, that hope is a lifeline and that when you love, you gain more than you give.

That brings me to “what” I want to achieve when I share posts about achievements. I want to encourage you that children can achieve so much more than we think is possible; provided that they are operating within their own abilities and their passions. I know how important it is for children to have the space to work for a dream, and then to have the space to bask in it’s glow when their dream becomes reality.

So for me, I share these moments of our lives not only to encourage a wider audience, but to also encourage my children. The internet is one giant diary, keeping an online record of our lives. Long after I’m gone these posts will be the relics my children and their children will sift through to learn about their past.

For Eli and Talisa, I want my writing to be a reminder to them of the amazing and wonderful ways God was with them and with their sister. As siblings to someone who will need care for her whole life, I hope that Talisa and Eli will find encouragement and strength when they grapple with issues unique to them. I hope that as they reflect on these posts they will remember what hurdles our family were jumping and why their achievements for its time were remarkable.

My own dream as a parent is inspired by the beautiful game:

I hope like that like a striker, I will keep my eye on the ball ever ready to take the tackles, and make the strike to benefit our family.
I hope like a great defender, I will know when to move forward and when to move back; never undermining my children’s abilities in the game of life.
I hope, like a goalkeeper during a penalty shootout, I will have broad enough shoulders to keep my chin up to return to the box time and time again to make a stand for my team.

Eli for Easterns Local Football Association under 10 Goalkeeper 2018

Most of all I hope I remember that just like a football coach knows that the game must challenge and test his players in order for them to be better, life will do the same to my children.

They must enter their own Theatre of Dreams to face the ball, to make their move and to learn to accept consequence thereof, for glory or defeat.

My greater hope is that when my children face their challenges: it will always change them for the better.

"We strive for perfection and if we fail, we might just have to settle for excellence." -Sir Matt Busby

Parent Support October 10, 2018

Parenting: The Best Advice From a Dad to His Famous Daughter

A few days ago I posted a quote about parents empowering their children.

It’s a tricky business being a parent. The intense roller coaster of emotions that we experience while knowing we are fully responsible for another human is safely the hardest journey to be on. It is also definitely the deepest, most beautiful bond we can ever experience.

And this entanglement of emotions can sometimes cause parents to be down right “crazy”. We have to know how much responsibility to give our children and when they are ready for different levels of responsibility. We have to teach them to be strong, brave, independent and maintain their sense of curiosity, while we are supposed to also protect them. Once you become a parent, the whole independence thing just seems way too overrated. I mean, it’s completely plausible that a child can be dependent on their parents for a while? Maybe until they are twenty-five or maybe even thirty?

There I go doing the crazy parent ramble. The one that makes children want to panic.

But have no fear my friends. I’ve never been the parent who wants to hold my children to me forever. I’ve always maintained that I am raising them to leave because I know that they will be fully capable of eventually building their own lives. Michael and I are fully committed to our vision that our children will be their own heroes. Even for Savannah,who is likely to never leave home, there are still some areas of independence that Michael and I expect from her.

Therefore it was a great delight to me when my mother and Talisa showed me the video (link below) of the speech Deepika Padukone gave when she received the FilmFare award for Best Actress two years ago.

Deepika Padukone is the darling of the Bollywood Film industry and has the world at her fingertips. She read a letter that her father Prakash Padukone, a Badminton legend for India wrote to her sister and her. It’s a wonderful example of how to give our children wings while keeping their hearts humble.

Enjoy watching this touching video of a parent child bond that is filled with love, trust and faith. Then let me know in the comments what your best advice is to your young adult children.

https://youtu.be/TuZRUMpnTkA