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Disability Advocacy

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.’

Savannah and I

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

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Empowerment

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

I wanted to ‘want to live’.

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

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

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

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

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

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

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

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

For helpful and practical advice about how to deal with the Christmas Blues, you will find this article Understanding and Coping With The Christmas Blues by @DarleneLancer worth a read: 
I particularly like the helpful online videos from the South African Depression and Anxiety Group.
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My Inspiration

My Inspiration: There is ALWAYS Time to Dance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Savannah and I decked out at a wedding last year.

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

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

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

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

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Disability Advocacy

Parenting: Being Courageous even in Uncertainty

This past weekend we attended our friends sons’ birthday party where they had an amazing Wild Animals Educational show. My daughter, Savannah and the birthday boy, Kurt have been friends since they were little children. We have attended a few parties at his home and Maggie, Kurt’s mum throws the best birthday parties for him. When I told Savannah that we would be attending the party, she immediately inquired if there would be animals. She remembered that Maggie usually has an animal show for Kurt’s parties. This made Savannah a bit anxious because unlike Kurt, she does not like animals very much. The only animals she loves are our two Labradors.

Yes, that is a Tarantula on my hand. And yes, it is alive!

As a person with special needs, Savannah requires a fair amount of support in some situations and this time was no different. We had to  make sure that she was emotionally and mentally prepared before the party to cope with her anxiety and concerns. One way of doing this was to reassure her that there would be no pressure on her to engage with the animals. We discussed with her that her daddy would sit with her as far away as possible from where the animals would be. She was happy with this arrangement and began looking forward to the party.

On the day of the party, Savannah did not back out from joining us as she usually does and was excited and happy to attend. Kurt, Maggie, her family and friends are some of the nicest people we know and Michael and I were looking forward to being in their company. As expected the party was relaxed and easy for Savannah. She was also very happy to see Kurt. Before the animals arrived, she repeatedly confirmed with Michael that as agreed, he would sit with her away from the animals.

Savannah and I with Kurt and Maggie

Julian from the WILD ONES Educational Show arrived in his bakkie (South African word for a small pick-up vehicle) full of cages and containers. We watched Julian set up, and Michael and I with some trepidation watched Savannah, watching Julian set up. A few years ago at Kurt’s party, Savannah clung to me for the duration of the party and was miserable and cross because she was so mortified by the animals.

As an autistic person, Savannah’s perception of some situations is different. What might feel fun and exciting to us can be uncomfortable and frightening for Savannah. In order for the whole family to enjoy life together, Michael and I had to make peace with the fact that Savannah will always require some level of support in many situations. Fear is a debilitating emotion and we know that Savannah’s fears are real enough for her, and therefore warrants our respect and patience.

That was the mindset that we had at the party but to our surprise and delight, Savannah decided to join everyone in the area of the garden where the animal show was going to take place. Julian kicked off the show by introducing us to a tarantula. Yikes! I know. I never thought I would hold a spider nor one as scary as a tarantula. But Savannah was watching Michael and I with keen caution, and so I held out my hand and took the spider. Then I held a bearded dragon and a barn owl and the list goes on.
Eli let a Corn Snake coil around him as Savannah watched in amazement.
Then he coaxed her into touching a bunny which we named Peter Rabbit for her benefit. That was one of her favourite childhood books.
Michael who is by no means an animal lover delighted her by holding a tarantula and whistled to a Cockatiel, coaxing it away from my shoulder to his shoulder.
I struggled to fight back the tears when we met the barn owl. Some years back she was caught in a trap and had lost one leg. So she cannot fly and is fully dependent on Julian for her food. As a mother to a daughter who uses a wheelchair and a sister to a brother who is an amputee; that little owl represented the vulnerability and the tenacity that I saw in my daughter, in my brother and in Kurt. More than that, Julian’s care and commitment to this sweet bird spoke volumes about something all of us at the party understand but rarely see outside of our lives as families of people with disabilities.
That is the act of simply caring for one another. Not based on what we will gain or what we will lose, but only for the reason that we are human and we have compassion.
Often people look at Savannah or Kurt and they feel pity. Understandably so because they see themselves as having more abilities than our children do. Often we as families are judged from their limited viewpoint about what we are doing and what we are not doing for all our children. Here’s the thing though: We are here caring until forever. We are constantly finding delight in life no matter what fears and unknowns and awkwardness and frustrations we face. So the pity we get is actually misguided. It belongs to the rest of the world. While our lives take us to difficult places in our hearts:
  • we know what “unconditional” means.
  • we know what depths of love and care truly exists in the human spirit, and
  • we know just how shallow so many lives are because they have not yet learned to give without counting the loss or the gain.
We knew from the beginning that parenting would be a daily exercise of giving of ourselves. It would be letting go of fears and showing up for our children no matter how we were feeling.
What we learnt was that parenting a child who has special needs is sometimes about giving all of yourself. It is about conquering those fears every moment of every day and learning to live with passion and joy knowing full well that your worst fears for your child can become your reality.
We do not know when Savannah will be keen to attend another event so we soaked up the afternoon with Kurt, his family and those glorious animals. We were carefree and delighted as we held tarantulas and snakes. Now that is a great paradox for the life we live, isn’t it?
Being courageous even when our hearts are uncertain.
A very special “Thank You” to Kurt, Maggie, Kevin (Kurt’s dad), Gabriella (Kurt’s sister) and their extended family for being one of the bravest, nicest people we know.
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SA Mommy Blogger Awards 2017

SA MOMMY Blogger Awards: Best Wisdom Giver was Baby Guide for the Modern Mother

As you already know my children have long been weaned, potty trained and can pretty much entertain themselves independently. Well, two out of three of my children are for the most part, independent. Savannah still needs mama in different ways.

I surprised myself by how much I enjoyed reading Letitia Venter’s blogs which crowned her Best Wisdom Giver for the SA Mommy Blogger Awards 2017 which is this weeks feature on my blog. New moms in my social circle often seek me out for advice and in future it will be nice to point them to Letitia’s blog.

Her first winning blog “Dear New Mom, A Summary of a What You Should Know” is an easy read with practical advice that any new, sleep-deprived, panic-stricken, breast feeding or bottle feeding mum will find very useful. Letitia is also a trained Lactation Consultant who does volunteer work in her community.

Letitia’s second winning blog had me saying “Amen” and “Hallelujah” every couple seconds. It is “Physical and Mental Delays Caused by Baby Walkers and Jumpers” https://babyguideforthemodernmother.com/delays-caused-by-baby-walkers-and-jumpers.html. I have been against the use of walkers and jumpers for babies because I learnt early in my motherhood journey, the negative impact these baby mobility products have on a child’s development. This post helps new parents to think through the reasons why they should not use these type of baby products.

Letitia shares her research and wisdom with an amazing amount of respect and knowledge. I think this is a must follow blog for all new parents.

Letitia’s blog, “Baby Guide for the Modern Mother” is a great link to share at Baby Showers. Letitia, I wish you all the very best as you parent your little one and support your community of new mothers too.

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Features

The Post Newspaper Feature – Families raising autistic kids, adults need support

While the world dedicates April to Autism Awareness in our house everyday is Autism Awareness and Autism Acceptance.

That is the message we spread.

We are humbled to be featured on The Post newspaper today to share Savannah’s journey as an autistic person. It is with deep respect for the autistic journey that we hope other families will be inspired. Please note as a family our personal preference is not to use the term Autistic Spectrum Disorder but we prefer to say that Savannah is autistic. We only have so much control over what goes into print.

To Savannah. We hope that these strides make your personal journey more tolerable.

 

Read more here

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