Faith Hope Love Archives | A Million Beautiful Pieces

My Inspiration September 6, 2022

Work, Caregiving and Me Time: What is the balance?

Like many people, I did not sign up to spend my days being a caregiver. I did not make allowances in my personal plans to be a caregiver. I did not even consider it when my daughter was diagnosed as a person with a disability. When my husband and I married, I said the words “in sickness and in health” believing that it was specifically for when we were in our old, old age.

Life takes us by surprise and when we love someone, be it a child, a spouse, a parent, a sibling, or a friend; we become what they need. I fell into the role of being a family caregiver. Respectfully, there are many people who make the choice to be the primary caregiver for their loved ones. Many people are fulfilled and find comfort in that.

I was not part of that group.

I was naïve when my daughter was diagnosed as autistic and having cerebral palsy. I thought if I learnt enough, worked hard enough, pre-empted conceivable and inconceivable issues enough, and did everything her education and therapy teams wanted me to do; Savannah would become a person who did not need as much support. Then I could pursue my personal goals.

That did not happen.

Although at twenty-six years old, Savannah has come a long way. She has levels of independence but not enough that she can be left alone for extended periods of time. She is unable to make important decisions by herself. She needs me more than I anticipated.

Still, I achieved some personal goals but often I had to lay my career, hobbies, and interests aside to help Savannah and care for her. Usually, that is not described as being a caregiver but simply mothering. And I loved that. All of it. Even more so when my younger two children were born, and they kept me busy. Mothering was my joy. My husband Michael was the primary breadwinner, and this rhythm suited us for a while.

Yet repeatedly like many families’ life happened. My husband was retrenched twice. At different times in our lives, one of the five of us, sometimes more than one, required medical care in a hospital and faced periods of recovery. We would have to repeatedly find the resolve to work out a new rhythm. After a time, even that became just how life was.

Most recently, my husband was diagnosed with long covid. He had the virus in 2020, and he just never recovered. This has made us feel more isolated than being a family to a person with a disability ever did. When a person has a disability, at least there is information or professionals to seek out for advice and help. With this diagnosis of long covid, we did not even have the vocabulary to explain what my husband was going through and its impact on myself and the children. With limited information available, it feels as if professionals are finding their way in the dark.

I feel the impact of Michael’s illness the most.

In our home with a person with a physical and cognitive disability, it took diligent organisation, physical stamina, and tons of patience to ensure that we helped Savannah to be supported as she needed without compromising the needs of the rest of the family. Our two busy teens, Talisa and Eli (thankfully Talisa is almost an adult), also need us in the same ways Savannah does, but they have the ability to be independent relative to their age and they can exercise self-direction and safety without us.

With Michael’s ongoing illness and complexities, I became his caregiver and his replacement for the children. I consider myself a caregiver to Savannah too because while I am still mothering her, to maintain some boundaries and to give her and myself autonomy, I find it easier to embrace the phrase “family caregiver”. I am still very much her mum, but when describing how we function “caregiver” works better.

Am I overwhelmed? You bet I am. BUT I am not overcome. I am not lost. I am not unsure of myself. I am not giving up all the parts of my life in which I find purpose and joy.

Why?

Because I knew how to pivot, and I knew what pillars I needed to have in place so that I could still carry myself and my family while continuing to engage in work that fulfils me and gives me joy outside of my family. I need both to be okay.

Join me at 8 pm this evening (06 September 2022) on the JoinPanda app where I will share how I learned to define that “balance” for myself. Simply download the app from Google Play (Android) or the App Store (ios), set up your profile and join my session. There are many other important topics being discussed too on a daily basis which are led by amazing people including mental health professionals. This is one app you won’t regret taking up space on your device.

A Million Beautiful Pieces December 7, 2021

Are you okay?

I do not want this December to be like the last one.
I do not want to talk about vitamins, vaccines, and the virus.
I do not want to worry. Worry about the people I love, the people I know, everyone in my life.
I do not want to pretend to be happy, and I do not want to live in sad.
I do not want to make plans and have them turn to sand.
I do not want to dig any deeper to find joy.
I am not okay.

I have been here before.
I have had these feelings before. The reasons were different.
I know I have been here before.

I planned and packed for the holidays. In ways, my friends could not understand.
I unpack. I set the room. Her own duvet turns it into her own bedroom.
I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods.
I re-organised most of the furniture. The wheelchair must get through.
I arranged the activities in advance and prepared everyone.
I knew where the nearest hospital was, and I packed the medical reports. Just in case.
I cooked. I served. I entertained.

I did well.
I got to it all.
I think it will be okay.

I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me.
It will be okay.

I wake. I listen. She calls. I go. I calm fears I do not understand.
I go back to bed. I sleep.
I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him.
I feel the morning. I tip-toe out of the room. I set up for the day ahead.
I see them, my younger children, racing on the shoreline. My heart swells because they are mine.
I smile. I wave. They enjoy the beach.
I sit here. I hold her hand. The sand and the wind: too much for her.

I'll go to the shore tomorrow.
I'll go and dip my toes.
It will be quick. I’ll be back. They will need me again.

See,
I've felt this before. I felt all this, and I felt nothing, all in one go. But then
I learnt that all and nothing can work themselves out, when
I dared to stop and ask them, what are they all about?
I heard them say: we are trying to let you know it’s okay to not be okay.
I asked in a shaky voice: what is the way to being, “not okay”, as you say?
I heard them soothingly whisper: Come into the day quietly and softly before they all awake.
We will teach you what it means to not be okay.

I woke without the alarm. I started to write.
I wrote to God. I wrote to my heart. I wrote for all the ones like me.
I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think.

I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me.
I'm okay not being okay. Are you? - Desirae Pillay 2021

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 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 April 7, 2020

Love is strangely complicated and yet purely simple at the same time

Today nineteen years ago Michael and I said, “I do”. This morning when we lay in bed, reflecting on our journey, we marvelled at how far we have come. Love is strangely complicated and yet purely simple at the same time. We feel that we are in two places at the once; still newly weds and yet we know so much more than we knew about each other on our wedding day.

We recounted the valleys, and there were a few; and we talked about the mountains we are climbing, and we wondered about the ones we have yet to climb. We thought about the people who stayed with us, and those who we have lost.

I especially struggle with my anniversary because it was at our wedding that my parents’ marriage began to unravel; and what I remembered for a long time about the first year of my marriage was their divorce.

I don’t remember long lazy mornings lying in bed, or walks down sunset lit streets, or suppers that became breakfasts. Instead all those moments were consumed by the pain of watching my parents marriage dying while mine was being born. I felt guilty, frustrated and confused. I remember the agonizing pain that I could not escape from no matter how much I wanted to. Overnight from being in the bliss of marriage we were thrown into the role of elders; caring for everyone else but each other.

During this time I was still grappling to come to terms with Savannah’s diagnosis and the disintegration of my family. Michael was learning to be a father to Savannah, son-in-law and brother-in-law to a decaying family and a husband to me. Savannah started school at an early intervention center and not at the local pre-school as we hoped; and we began the emotional rollercoaster as parents to a child who was labelled “ineducable” and a “person with profound disabilities”.

It is amazing when I recount that time; because if we thought that was going to be our only challenge, we were wrong. We faced Savannah losing her ability to walk independently and Darren (my brother) becoming an amputee. Those two tragedies still bring us to tears. Then Michael was retrenched at one point leaving him without a job for one year. Savannah underwent over twenty procedures under anesthetic and anniversary celebrations and date nights were repeatedly put aside to pay medical bills. Between our three children, we have been with them in medical theatres about thirty some odd times in nineteen years.

We fought for services for Savannah, fought for our right to try different ways to help her live her best life, fought to be understood and accepted as her diagnosis and changing needs made us aliens in our families and faith communities. Amidst all the deep paths that we ventured, God blessed us with Talisa and Eli. The joys in parenting our three children became our lifeline and our lives.

We did not sit together much because one of us was outside at events with Savannah or with one of the other children when they were too little to sit still. Or either of us (mostly me because I was home with the children when they were little, and needed a break) attended events while the other parent stayed home because we were too exhausted when Savannah did not sleep for days or when we could not afford to buy new clothes for everyone in our family to attend an event.

We busied ourselves in church activities, awareness programmes for people with disabilities and tried to be available to anyone who needed help. We put our hands up to join committees or babysit for other couples. All of this was good and we made good friends, but all of this was not always necessary.

We are both opposites in many respects. Michael is an introvert where I am an extrovert. He is unyielding when he believes that he is right, and I of course am right! So that makes for interesting discussions. Just kidding. But we both have our own ideas and do not need to agree on everything.

He is not romantic while in my head plays a perpetual playlist of love songs. He is a meat eater while I am a pescatarian. He wants to watch Manchester United and I want to read Jane Austen or Karen Kingsbury or Marian Keyes. He does not dance, and I was born to dance. Oh, but he sings. He wakes up every morning humming a song.

All dressed up for a rare night out back when our children were younger.

When we look back at what unfathomable storms, we weathered with little to no support; we know that we are a witness to God’s divine hand over us. We hold each other with humility for the times we missed out on, when we did not show up in the ways we should have. We embrace with a deeper respect for the others’ strength of character. We come apart to each other; knowing that we are safe indeed.

I thank God for our different seasons. But mostly, I am thankful to God for holding us together through it all. I am thankful that in all my joy and all my pain; being Mrs. Pillay continues to take on a deeper and more precious meaning.

What we know to be true is that love is strangely complicated and yet purely simple at the same time. We are thankful for a love built on the one who first loved us, Jesus; and we are thankful to Him for giving us this secret for our marriage:

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law” – Galatians 5: 22 and 23

Happy 19^th Wedding Anniversary to my endless love.

Now I am off to make our favourite meal, a Thai style stir fry (meat option and vegetarian option) which we will enjoy in the tranquility of our garden, listening to the soundtrack from our movie ‘Con Air’. That is our story for today: love during the time of lockdown (can’t help trying to play off the title of a favourite book of mine ‘Love during the time of Cholera’ – by Gabriel García Márquez. I highly recommend it.)

Disability Advocacy September 27, 2019

The Pen Is Mightier Than the Sword, but Kindness transcends them both

I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece.

As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability; it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is Grace that keeps filling my life with Faith, Hope and Love.

Then there are those who are embarrassed that now they know what they would rather not know, and try to make me feel bad for writing it. I can’t help you besides suggesting that you stop reading my work.

I am almost forty-four years old. Of that time I’ve been a mother for twenty-five years to a child with a disability, and two more children while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.

That’s twenty-five years of facing social systems where it has been inconvenient to include our daughter with a disability. Twenty-five years of reading cues in social gatherings of whether we are wanted or not. Or how long before they push us aside when they realise that Savannah is a 24/7/365 commitment for us?

Twenty-five years of giving people the benefit of the doubt, only to have Savannah made fun of dismissed by those who were entrusted to care for her. Twenty-five years of having to deal with mothers who let me know how grateful they are that their children aren’t like Savannah. There’s that pat to Savannah’s head and pronouncement that ‘They are such a blessing.’ I keep thinking to reply ‘I hope God blesses you as much as He has blessed me.’ But my fear of extending the unwanted encounter holds me back.

Twenty-five years of still having days when I go to bed weeping, frustrated or lying awake at night wondering what will happen when Michael and I are no longer here.

So why do I keep writing about the hard stuff?

Simply because I am still inspired by my children to leave behind encouragement and evidence for them to know how hard we tried. I write so that my children will know I tried to change hearts and minds, and that being kind is still worth it. In my first edition of this post, I wrote that gaining acceptance within society was the reason I wrote. Now, in the aftermath of the Esidimeni tragedy, and the continued lack of services and support our community faces, I also write to remind other families that we are not alone.

While we bear up against it all, we can be united and be a source of comfort, hope and information.

Like the way, my children comfort each other when they are made uncomfortable because their sister is different. It’s a sad day or a glorious one (whichever way you choose to look at it) when your children can explain the love of God in spite of the callousness of other people.

Sometimes callousness takes the form of being given unsolicited advice. Other times it’s to point out to us, in Savannah’s presence, that God can do amazing things and He will make Savannah whole. I cry every time we hear that because of the severe lack of insight that statement contains. The testimony of God’s sufficiency to my family does not need to be proven by Savannah being made into anything other. His sufficiency is proven in our diligent commitment to her care and well being, even on days when we are overwrought by her complex and beautiful mind, and that we do it again and again. His sufficiency is when Savannah comforts us, and when she laughs and loves freely and without restraint. That’s a testimony of faith and sufficiency.

After twenty-five years of this, I’ve learnt that many people need Savannah to be fit into their limited understanding of God’s goodness for THEIR faith to be affirmed. It feels like they see Savannah as broken and someone who should be “fixed” to match their idea of a whole person so that they can feel affirmed that God is good.

From left to right: Talisa, Eli and Savannah

But in our home, we know a secret. Savannah is a remarkable beauty; fearfully and wonderfully made like her siblings. While the world is designed to forsake us, judge us, dismiss us, persecute us, and remind us how we can’t fit in with their carefully organised systems; we know a God who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Kindness. A God to whom my children speak to like this:

‘Thank you, God, for the patience you give us. Now please can you give the same to the parents who are racing in school traffic when we are all going to the same place at the same time.’

Or‘Lord, thank you for Savannah. I realised today that she does an amazing thing. She can still choose people who won’t choose her’.

Or Savannah’s prayer, ‘Lord, Thank you my life. Please help lady with walker at church. I feel sorry for her. My dad is sick. I am stressed about him. Look after my sister, my brother. Help my mum. Amen.’

When ignorance pierces my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different:

I DO NOT CRY FOR WHO YOU ARE(Author Unknown)

Tears have stopped falling
On the fragments of my dreams,
I no longer mourn illusions
Of yesterday’s reality.

Tears that fell so often,
Almost every day,
But that was when the rain poured down
And the sky was always grey.

Now I feel the sunshine,
And the sky is blue again,
I’m living on a rainbow,
But I still cry now and then.

I do not cry for who you are
Nor what will never be
My pain’s in the confusion
And the vulnerability

My frustration’s with a society,
That cannot see you’re mine,
My anger’s to the ignorance,
That will never try.

My fear is from uncertainty
That increases over time.
My guilt is deep inside my soul,
Each time they make me cry.

I do not cry for who you are
Nor what can never be
I cry because they look at you
But never really see

They don’t see how the differences,
Could make the world complete,
They can’t all live on rainbows,
It’s just not meant to be.

You are not responsible,
For all that we’ve been through,
I would not change you for the world,
I would change the world for you.

Father, forgive them for they do not know what they do. Luke 23:34

With all the Love that I’ve found in the Million Beautiful Pieces that make my story, Desirae

A Million Beautiful Pieces July 1, 2019

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

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

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

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

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

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

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

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

Savannah taking a short stroll with me .

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Million Beautiful Pieces April 15, 2019

I Am Every Woman

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

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

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

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

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

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

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

A Million Beautiful Pieces 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?

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 February 11, 2019

Our Lives Are One Big Puzzle by Erin Hanson

“So you won’t have to look back when it’s over, And realize you’ve left out the sun”

When we measure life by success and failure, we lose so much of everything in between. We lose the essence of the Million Beautiful Pieces that make the puzzle that is our grand masterpiece. Erin Hanson is The Poetic Underground and she writes a beautiful reminder about being present in every moment of our life.

“Our lives are one big puzzle,

We don’t know how many pieces we’ve got,

There are people that fit in quite nicely

And people who try but do not,

We’re constantly adding more pieces,

All the memories of things we’ve been through,

We add laughter and tears and adventure,

And the lessons we’ve learnt to be true,

Everyone has their own puzzle,

There will be ones where you do not fit,

Don’t you ever dare make your piece smaller,

Just so you can live there for a bit,

If you keep cutting off all your edges,

One day you won’t recognize what you see

And you’ll forget the person you once were,

Before the world told you who you should be,

Make the most of each piece in your puzzle,

It’ll be a grand masterpiece when it’s done,

So you won’t have to look back when it’s over,

And realize you’ve left out the sun.” -e.h

Sometimes we need to be reminded that this life is not about meeting a set of criteria set by other people. It is living in tune with who God created you to be: A Grand Masterpiece.