Inspirational Archives | A Million Beautiful Pieces

A Million Beautiful Pieces October 21, 2021

Dream a new dream

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

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

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

The dream I hoped would become my reality

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

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

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

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

Letting go of the dream

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

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

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

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

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

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

Dreaming a new dream

There is a line in a song:

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

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

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

Have I found my dream life?

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

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

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

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

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

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

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

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

For Professional Help, please call

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

Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.

A Million Beautiful Pieces March 15, 2019

Did Love Save Us When The “Worst” Happened?

Most people have an idea of what the worst circumstance is that could happen to them, and sub-consciously or consciously navigate their lives trying to avoid it. For some it is the fear of illness especially if their parents faced complicated health problems. For others it could be financial: the fear of being poor (no one fears being wealthy). For some it could be losing someone. Either when a relationship ends or when a person’s life ends. For parents of teens, it is a myriad of concerns that we fear. “The worst thing” can take on any form to different people in different circumstances. For myself, there were several “worsts” but none more than when it concerned Savannah.

Savannah And I at the Whitney Houston Show last year

Like many new mothers, when I became a mother for the first time, I had a certain level of obsession about how I wanted Savannah to be cared for. But then, when she was diagnosed as a person with cerebral palsy, my attitude switched between “whatever will be will be” to “follow every piece of advice” exactly, precisely according to the doctor or therapist or anyone who I believed had any experience in caring for a child who had significant challenges. Some days I felt overwhelmed by how much I had to remember about her respiratory issues, her physical challenges and her cognitive challenges.

Yet, like most new mothers, I was ever hopeful that my love was enough to save her from any and all obstacles. We were going to prove the world wrong and she was going to move out of my house by the time she was eighteen and attend university. I wrote a post some months ago titled “When love is not enough” about how we face that truth time and time again.

Sometimes the harshest circumstances create the most steadfast people.

So was the extent of my hope. My heart raced towards this idea only because on an emotional level, I was running from the possibility of Savannah never being able to walk and worse still, I was ever fearful of one day finding that she was not going to wake up. I fully believed with all my heart that this diagnosis of cerebral palsy was the “worst” that could happen. I ignorantly thought that surely once a baby is diagnosed with such a condition, they must be exempt from all other terrible issues?

But no. In fact that very diagnosis and later on the added complications of Savannah being a person who is autistic, taught me that she was never exempt from anything. Her life was like a magnet for all strange and complex health problems both physically and cognitively. If I thought I was overwhelmed by Savannah being diagnosed as a person with cerebral palsy, I had no idea that was only the very first inch of the iceberg of all her challenges.

During the first ten years of Savannah’s life, I went through a cacophony of emotions as I grew from being a teenage parent, to a divorcee, to being a single parent, to my parents marriage finally falling apart, to eventually building my own second marriage and becoming a mother to Talisa. All that in ten years! So it is no wonder that I struggled with depression for most of my life. I could not share this with my family because they believed it was a sign of weakness. When I married Michael this was further complicated when as I Christian I was told that I could not be depressed.

So continued my confusion about why I was here and even more bizarrely why, of all the women in the world, was I given a daughter who needed so much? If being depressed and having thoughts about suicide was causing me to be my own obstruction in receiving God’s love, what hope was there for me now in my role as a parent? As a parent who was struggling with post traumatic stress disorder from childhood trauma and other issues; I felt very lonely and isolated. While I could verbalise some issues to other women in my family and in my church; I was almost always left feeling inadequate. Michael tried very hard to understand this inexplicable, deep sadness but he could not undo what he had not done to me.

All he had to offer me was his love believing just as I believed about my love for Savannah: it would save us from further pain.

The truth of that belief became real about six years ago. I was having a very hard time coping with Savannah when she finished school. A few of our friends’ children with special needs were going to live in facilities and Savannah liked this idea. She did not fully understand what that would mean for her though. For a few days Michael and I were having these heart wrenching discussions about Savannah trying a respite centre for four days a month. It was difficult to admit that I was not coping with Savannah and that she and I both needed a break from each other. It was a tough conversation and one that both Michael and I struggled to find the right words for. Michael was listing off all his fears:

“We have worked so hard for her and it feels like we are giving up.”

“How can we trust them?”

“They don’t know her. What if something terrible happens to her?”

We face the storms of life, and we survive.

As I listened to him put into words what was also my fears, I surprised myself by my response. I said something like this: “What could be worse than what we have already faced? Our worst fears are already true. She lost her ability to walk by herself. Her doctors believe that she has a limited life span. But we are still here. Those things are true but we are still here. The worst has happened. It is happening and we are still okay. What more can we not face?”

That was a defining moment for me. As I said those words. It was as if I also reminded myself of all the “worsts” I have lived through. It had all happened already. The power of that realisation put into sharp focus that in the midst of all the chaos of life, I raised a family who are intact and thriving. It hit me so hard to realise that we had already lived through all the “worsts”.

Just before Talisa was born was probably one of the hardest times in my life and it lasted a few years. I was mourning the loss of my family as my parents marriage disintegrated, while coming to terms with Savannah’s additional diagnosis of autism and trying to be a good mother to Talisa who was a very demanding baby. The weight of everything at that time was incredible. I felt that life would never be happy.

But somehow here I was years later having this discussion with Michael about Savannah having an experience that I knew required a great deal of courage on my part. Like physical exercise that builds muscle, somehow I had grown mentally and emotionally strong in the areas of my life story that should have destroyed me. I gained the ability to remain steady and in control. I learnt to see life from other people’s perspectives which is a great ability when raising a family where a child is autistic and is also a person with cerebral palsy and other conditions.

So did love save us?

What else could have given me the mental agility to be flexible and the wisdom to be emotionally vulnerable to become everything my life needed me to be. Being loved unconditionally by my husband was God’s gift to me. Learning to love myself for exactly who I was, and trusting God’s plan for my life, was my gift back to the loves of my life.

Love saved us. The “worst” has only broken us wide open to share it with everyone.

In the end what else matters?

My Story September 5, 2018

I Am Bravely Making The Scary Choice

Have you ever thought why is this my life and how did I get here? Like me, you love the people who are in your life and you have created a beautiful life. When you look back, you are thankful because you realise that life could have been so much more cruel and the challenges you have overcome could have consumed you. So you know that you must be grateful for where you are.

Except there is that pervasive feeling that you are missing something that everyone else has already found. Or that you are just not where you should be.

It’s like we all set out for a walk and then some of us were given a different road map to follow while other people were allowed to follow the regular and more organised route. When we find ourselves back on the same path alongside them; it seems that they have gained skills, which we do not have, and they navigate the path with so much more ease and with some pizzazz too. And we feel kind of old and tired because the cares we have come to know create a fog around us.

There is our group hesitantly looking for the boulders and deep ditches. Planning for the storms that only we believe are bound to come while trying to be a good walking companion to the other group. We feel that the people from the other group have no idea where we have been. They listen and empathise but it is such a foreign journey to them that the only way they can reply is to talk as if they too have known the same fog.

“Oh yes, I found it awful to sleep out in the open. I mean my tent was so thin and I could feel the chill. I so wished I could have brought the warmth of the fire into the tent with me.”
And all the while the rest of us are thinking: “Tent? Where the heck did they get a tent from? We had no tent and we had nothing to start a fire with. Chill?? It was a storm!”

And so the feelings of bitterness and injustice are stirred as we are reminded of how the bends and curves of life have changed us. Everyone has tragedy and the impact of that is relative. However not everyone recovers in the same way and not everyone can start again on new terrain. Not everyone gets to feel the opposite to heartaches.

It’s all well and good that we hail challenges as life lessons that will help people to grow and become better. It’s not actually fair that those same people have to hustle alongside those who got to have the tent and a fire. Yet, that is the story of the human race.

I’d like to think that while we all travel together, there are those who share their tents and their warmth with others. If only for a little while. I’d also like to think that while we all like our stories to be acknowledged; we will also have the humility to know the difference between those that travel with a tent and those that have truly “roughed it”.

Looking back to this year, I tried to have those experiences that I thought would help me to grow and to stop asking how did I get here. I realised that I knew how I got here. What I was actually having trouble with was separating what about being here was what I truly liked and wanted, from what I thought I had to accept.

My career as an assistive technology advisor was something I was really good at but it did not make me happy. Atleast not the kind of happiness that I need. I thought about all the older people I knew, who worked the same job their whole lives and were content with retiring from that with the satisfaction of having provided well for their families.

I wondered what was wrong with me that I could not be like that…. Was I selfish? Was I ungrateful? Am I dreamer?

Maybe I’ve learnt that without the tent, I get to see the stars and without the warmth of a fire, I get to use the fire that is inside of me. I’ve learnt that the map I was given was useless anyway. I know the way to what makes me happy. It means climbing some mountains and wading through some rivers. It means picking berries and swimming in streams. It means having the courage to step off the path again and make my own path.

Here is what I hope you take from this:
*The act of believing in yourself speaks much louder than you will. But adding humility to that belief instead of pride booms even louder.

*No one can be as inspired by your life as you are. You alone know the personal costs. If you aren’t inspired to make your life what you want it to be, then you cannot expect anyone else to do that for you.

*When I become afraid of the future, I remind myself to look back and to see just how many of my worst fears I have already lived through and overcame.

Children are wonderful voices of encouragement. My son in his innocent way reminds me of all this when he merrily sings out at the top of his voice one of his favourite Elton John songs:

“Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind”

Go have a listen. While the video will put a smile on your face, the song is so catchy that I dare you not to make it your own sing along as you plan your next move:).

Photo credits:
Desirae Pillay: Wesley Lazarus
Man walking alone: Michon van Staden