October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn.
Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal.
She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.”
Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:
No one is allowed to hit her,
No one is allowed to be rude to her (with details),
No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly
No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge.
Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed.
If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them?
This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations.
I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it.
Also here is my truth –
I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!
October is Mental Health Awareness Month. For support join the growing community at JoinPanda.
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.
My first story is a fictional story “The Women In The Bathroom” and has been in the making for a few weeks. It’s serious and hopeful and was written to support the #UNWomen’s #HearMeToo campaign and the #16Days of Activism For Non-Violence Against Women and Children Campaign.
(Please note the content and language may be explicit for some readers)
The Women In The Bathroom
Shardha squeezed the Colgate toothpaste on the toothbrush, and hoped that Nandha wouldn’t moan that it wasn’t Aquafresh like they used at home. In her haste to pack their school uniforms and books, she didn’t think about packing toothpaste.
“Nandha, we are going to be late. Hurry up.” She tried to whisper across the passage from the bathroom to the bedroom where her brother and her had slept last night. He was always dragging his feet but she knew after what happened last night, it would be harder for him to get going today.
She could hear her aunty Raksha in the kitchen. Her aunty was newly married to their maternal uncle Mitchell but Shardha and Nandha felt as if they knew her forever. Shardha was grateful that aunty Raksha had the sense to suggest that Nandha and her stay at their home last night.
The night before seemed in one part like a distant memory yet in another part she could remember every word yelled between her parents; when every punch and kick happened and she could still see the madness in her fathers’ eyes as he pounded her mother.
“Some things you can’t unsee”
Nandha and her were also yelling and crying; begging him to stop but he just hit their mother harder. Their screams were heard by their neighbours who like so many times before, knew to phone their uncle Mitchell.
Shardha was a pro at calming down her brother enough so that atleast he didn’t make a noise when he cried. Her mother staggered to the bathroom, ignoring the whimpers of her children. Or maybe she was deaf after all the yelling? Shardha found that easier to believe. When uncle Mitchell and aunty Raksha arrived, their father was gone. Shardha opened the door and then the big gate. Her mother was still in the bathroom.
Every time he did this, her father left for a while. Sometimes it was just a few hours. Other times it was weeks before he returned. Then when he came back, it was like nothing happened. Mum and dad would be happy again until the next time she spoke out of turn or forgot to ask his permission before she bought something or who knows what silly things she did to make him angry.
Shardha’s thoughts were interrupted by Nandha. He came into the bathroom, his eyes puffy from crying himself to sleep; and the same terrified look he had the night before. Shardha, handed him his toothbrush and whispered to him to please try to hurry up. Then, quite unexpectedly the bathroom door flung open causing both children to jump with fright. Aunty Raksha stumbled in. She looked away from the children while she leaned over the bath tub and opened the tap.
Shardha thought she saw red on her aunty’s hand but her mind resisted the allusion to what it might be and she tried to dismiss it. But she couldn’t unsee the deep red stream flowing from her aunty’s face, mingling with the water as it cascaded down the drain. She knew, she knew that her aunty was silently crying and a scary idea entered her mind.
Did her father come here and do this to her aunty ? Was he cross that she had taken them with her? Was he in the flat right now? Shardha’s mind was racing as she tried to understand why her aunty was also a woman in the bathroom like her mother.
Just as her confusion was becoming panic, her aunty stood up with a towel over her mouth and nose and said “Shardha go get your lunches from the kitchen. I’ll take Nandha down to the car. Go get your bag, Nandha.” Shardha knew better to ask her aunty anything now. She went to the door, opened it and listened. She couldn’t hear her fathers’ voice. She could only hear her uncle getting ready in his bedroom.
She slipped out of the bathroom and walked slowly down the passage to the kitchen. There were the lunches. She grabbed them and turned back hoping to catch aunty Raksha and Nandha and to walk down with them. As she turned back into the passage, she could hear her uncle talking to his friend from next door. They were on the balcony off the lounge.
Uncle Mitchell sounded so angry. “Bloody bitch. She thinks she is too smart.”
Uncle Mervin asked him “What? Raksha? What happened bru? She wasn’t looking right when I saw her on the stairway now. She having a problem with your sissies kids being here?”
“No f&*%! Not problem with the kids. No, no she likes them. She wanted to bring them last night. My sister and my swaer got into it again. So we brought the children here while they cool off. But this bitch, thinks because we took the children, she can talk about my sissie. This morning she was chuning me that my sissie must think about the children. She said my sissie can’t keep letting the children see this. What the f&*%? She thinks she knows better than my sissie?
Shardha drew a deep breath. Her eyes widened in horror. She knew why aunty Raksha had a bloody nose and mouth. The tears filled her eyes and her throat felt dry and painful.
“I clouted her a solid one. Bloody sh**.”
Uncle Mervin “ Hey bru, sometimes you have to show these things their place. Your wife, you know with her education and all, she needs to be brought down a bit. Good you showed her quickly how to shut the f&*% up. “
“She finally managed to fully open her eyes.”
Shardha tip toed down the passage, not wanting to see her uncle and not wanting to hear anymore. She was just six years old when she understood that nowhere was safe if you were a woman.
Twelve years later, that memory came back to her as clear as day. Somewhere in the distance, she could hear a baby crying. It took her a few seconds to realize that it was her baby that was crying.
Her eyelids felt so heavy as she tried to open it. She became aware of the cold tiles against her cheeks. Then she remembered. He was angry because she left the hotel room to buy food for the baby. She didn’t wait for him to come back.
How could she? The baby was hungry and he was already an hour later than he said he would be. So she raced like a mad woman to buy mash and gravy from Kentucky Fried Chicken. But she was wrong to leave. She knew, she knew it as soon as she opened the hotel room door and saw him glaring at her.
As it all came back to her, she also felt the stabbing ache in her jaw and the burning sensation running through her arms as if it was on fire.
“You bitch. Who did you go to meet?” He fisted her jaw. She went down, landing on the beautiful Italian tiled floor.
“You want other men to look at you? F&*%*#@* whore! Just like your father. You want to sleep around.” Kick to her face but her arms were up trying to block him. She blacked out.
As Shardha remembered what just happened to her, and her baby’s cries became more frantic; she lifted herself onto her elbows, then onto her haunches. She stood up and steadied herself on the wash basin as her head spun.She finally managed to fully open her eyes. She saw herself in the mirror; bloodied and wretched.
Her heart ripped itself in two as it called out to her “When did you become the woman in the bathroom?”
Shock turned to focus. Her baby’s cry sobered her fully as the realisation of the weight of her life came crashing down on her. Her daughter was not going to be like her. Not ever.
She went to her baby. She knew what she had to do. Run.
THE END
Glossary: South African Indian slang particular to Indians who moved from Durban to Johannesburg in the 1970’s and 1980’s.
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.
Are you dreading the holiday season? Seeing family or friends who you would rather not see? Having to attend or host dinner parties you would rather not be part off? Trying to accommodate your spouses’ family while your own family have their expectations of you?
Maybe you already know that financially this is going to be a tight Christmas, and you can’t say that out loud without feeling like Scrooge? Or maybe you have gained a few pounds this year and the thought of going home for Christmas when you know that aunty “I must comment on your weight” will be visiting; is petrifying you.
And that is where I will start off this series of blog posts as together we wind down this year. For today I want to share some thoughts and ideas about how to deal with unsolicited comments about physical appearance. Over the next few weeks we will get to the other stuff like depression, isolation, and how to look after yourself when your life doesn’t look like the Hallmark Christmas Movies.
But for now let’s just weigh this important issue.
Firstly, why oh why is this even a topic of conversation? I’ve never understood why I’ve had to hear comments like “Oh my word, you are so fat” or “That dress is lovely but sleeveless is not right for you. Your arms are too big.” Or the other way “My word, you’ve lost so much weight. Is everything okay?” Or “I was telling ______________ that you look so much better now that you lost weight. You were looking terrible last Christmas.”
I entered Mrs South Africa after loosing some weight but I was still not exactly a “small” lady.
Why would anyone ever begin a conversation like this? Or for that matter even bring this up in conversation. Its mind-boggling that these interactions are still part of our social contexts when we are living in an age when both men and women have emotional issues that stem from having a poor body image of themselves.
We are taught from a young age to make excuses for family and friends who taunt with their crude comments. We tell ourselves that it is only cultural or that is just the way they are. I will also include here that even negative comments about skin colour, choice of clothing or hair style, comments about how a persons’ body has changed due to pregnancy or after medical issues or actually anything to do with physical appearance of any sort; are simply not topics of conversation at any time of the year, let alone during the holiday season.
Of course genuine, positive comments like ”You look lovely” or “I’m so glad to see you and I love your dress” or simply “It’s so good to see you” are perfectly fine and it makes spending time with our family and friends so much sweeter. When comments are unflattering, one cannot imagine the unnecessary hurt that it causes.
I’ve been in this situation a few times, and one incident is still so clear in my mind. I was collecting Talisa from school when I noticed an old family friend. He was an older gentleman, who I hadn’t seen in years. I was entering the school gate with many other parents when I saw him and I greeted him. He boomed out, “Oh Desirae it’s you. Oh my word. I didn’t even recognize you. You’ve put on so much weight.”
I was stunned to say the least. I had no idea how to respond to this in front of the other parents and particularly as I was feeling really depressed during this time. Savannah was recovering from an operation to her back and there were complications that we were coming to terms with. We were living in an upstairs unit in a townhouse complex. Eli was just over a year old and could not walk up or down the flight of stairs by himself. Everyday sometimes three times a day, I was carrying both Savannah and Eli up and down those stairs.
Savannah and I dancing at her 21st birthday party.
In the afternoons if I had five minutes to myself, I would dish up a large bowl of vanilla ice cream, squeeze a mountain of maple syrup onto it; down it and then continue with taking care of my three children. Hands up mums and dads if you have scoffed an entire box of chocolates or polished a bag of chips while your children needed your care! You know well enough what those days are like.
That time in our lives was so emotionally confusing as we delighted in Eli’s milestone of walking and were equally shattered as we realised that Savannah was losing her fight to keep walking. So yes, I ate the ice-cream and the cake and anything else that offered any sort of comfort. It didn’t matter that everything tasted like ash to me anyway. It was just the way I was coping.
That old mans’ comment felt so cruel and so shocking to my very soul. I felt like a failure: unable to stop the regression that was claiming Savannah’s walking, and unable to keep my weight down. Those words just made me hate myself for not being able to be thin and for not being able to keep Savannah walking. I am generally a practical and logical person but this brief meeting shattered me. And it gives you an idea of how a seemingly innocent quip, can be havoc for another person.
How did I free myself from allowing these shallow comments to hold me hostage in my misery?
*Do you know that you are a child of God and that it’s wrong to disrespect Gods creation?
First, I asked myself are these “weight commentators” that important ? Would they cope with a small percent of the challenges I have lived through? Even if they had their own challenges to survive, clearly if they are making hurtful comments, then their life challenges did not change them for the better. No. You can’t take anyone seriously when they have no depth of character. For myself when I meet people, I see more than a physical form. I see them as a child of God.
*Do you love yourself?
Then I asked myself what did I want? Really, did I want to be supermodel thin and have my body poked and peeled and worked at while Savannahs’ disability changed her body in a drastic painful way? No I didn’t want to look like a supermodel. I wanted to help Savannah to love herself even as her body started to work against her. For my own well-being and for my children, I learnt to love myself irrespective of what size dress I fit into.
*Do you know what a “good looking” body means for yourself?
I also asked myself to define what a good-looking body meant for me? My answer was that I wanted to wear clothing that flattered what I liked about my body without feeling ashamed. Fat arms and all. I also wanted to be able to run down the soccer field with Eli, wear high heels to impress Talisa and still lift Savannah when she needed it. I wanted to feel pretty good with myself whether I was a size fourteen or a size ten as long as I could do those things with my children. Now that would be a body to cherish.
This was the day Eli was selected to play football for the local district.
*Do you have a plan of how you will protect yourself from “weight commentators” this holiday season?
Lastly I asked myself how am I going to deal with shallow, misplaced comments about my physical appearance? The answer was I won’t. If a person is so base as to have the gall to say anything derogatory with the intent to cause shame, then they are not worth my time, my words, my respect or my love. It takes a mammoth task to encourage oneself when caring for a child with a disability. So I will not ever again allow anyone to set my soul off-balance into self-loathing. I do too much in a day to waste time picking myself up off the floor.
If you don’t have a plan to protect yourself, then grab a pen and page, and take some time to answer the *questions above and you will start working out your own plan on how to guard your personal space. That is what your body is. Your personal space. And no one may physically, verbally or emotionally violate your body. Got that?
Once you learn to respond to hurtful comments without feeling ashamed and angry, you will realise that your response will simply be a matter of stating facts. I taught my children how to do this after I worked out how to do it for myself. They know that if anyone dares to cross that line with them by making inappropriate comments about their physical appearance, then they have my permission to shut them down with statements like:
“Wow, that’s not nice to say.”
“You think like that? I’m glad you aren’t my mum or dad”.
“I like myself the way I am. If you don’t like me that’s your problem.”
“You be you and I’ll be me”, or Talisa’s own line said with a huge smile
“I’m fearfully and wonderfully made. I’m okay”.
Oh my friends, this Christmas the best gift you can give is to find your strength, keep your balance and maintain your peace.
Now, I’m off to indulge in a vegetarian hot dog on a buttered white roll with homemade potato chips and caramelised onions. And later while I watch today’s episode of Masterchef Australia, I will devour my Carb Clever Chocolate Bar.
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.
“I survived because the fire inside of me burnt brighter than the fire around me” – Felix H.
Too often we allow the circumstances of life to define our character. Yet character isn’t about the circumstances we have lived through; it is about how much we understand our value to God and how that influences us in the choices we make in those circumstances. That becomes the grit and the grace that fills us with determination not just to survive but also to thrive.
This year I challenged myself to new experiences and to give myself one year to live just for me. I say one year because as a parent to an adult with special needs, by default my life choices are always filtered by being her mother. To that end, I’m so excited to announce that I was able to change my career to pursue my dream.
I’m now a full time blogger, freelance writer and public speaker.
It was a big decision to make as I loved my previous career as an Assistive Technology Advisor. When I thought it through though, the aspect of that job which excited me the most was when I was teaching and training. So to have the opportunity to positively influence people through the medium of writing and speaking is hugely exciting.
This means I’m learning new skills that will help me to become better at my chosen craft. It means that after a year of experiences with this blog, and also entering the Mrs South Africa competition and then writing for sponsors; I’ve grown as a writer and public speaker.
Writing to influence people to live their best lives, to tell stories of human triumph and struggle that promotes self reflection and to influence society towards being kinder and more understanding is my great passion. Then as a speaker; I’ve always been a motivational speaker and I’ve had the opportunity to host a few events as an MC. Now I get to do that more often as a career. You can contact me via my website for my media kit or email me at desirae@amillionbeautifulpieces.co.za.
Having essentially felt like an outcast in society when I became a teenage parent then feeling the second wave of that exclusion when my daughter was diagnosed with a disability; left me feeling like an outsider in my own life. I know that when people have set backs or are on the road to picking up the pieces of their lives, it’s a lonely place to be if you don’t have people to champion you. I was blessed that along my journey I met people who reignited the fire inside me when it was in danger of burning out.
And that is what A Million Beautiful Pieces will be more about now. A place to find your strength and to know that you are not alone. Your life has value and you are valuable.
I’ve learnt this only in the last few years and what I know for sure is that: it’s a process. It’s taken all of my adult life to have the courage to pursue the career that I want.
In this process of becoming me, I’ve learnt this:
Be patient with yourself. It takes time to unlearn the unnecessary.
Self love is often confused with selfishness. Remember when you know how to love yourself, then only can you love someone else.
Oh man, this is what gets me out of bed in the mornings: This life… It’s yours. No one else can lay claim to how it is lived but you.
As I get up to face this last day of August I hope that the fire inside you burns brightly enough for you to live and love well in every moment of today.
What a surprise for Michael and I to read Talisa’s essay. Her teacher wrote”Look after Savannah – she is a blessing. Treasure what you guys have. I think with some polish you can be a great writer”.
I agree.
Here it is.. Talisa’s perspective.
Who is Savannah? You may ask. Well she is my almost twenty year old sister. No biggie,right. You are probably thinking just a twenty year old girl in varsity who goes out to parties and gets her hair done every week at the salon. Just like any other twenty year old. But she is different. Savannah is uniquely different.
Savannah is autistic and has cerebral palsy. Autism affects how she experiences the world. Her brain is just wired differently. Cerebral Palsy affects her body. It doesn’t function the way ours does. She also had an operation to correct her scoliosis. She had rods put into her back to keep her up straight. The good news is that her back is straight. The bad news is that she lost her ability to walk and now uses a wheelchair.
That was honestly the hardest time for me. I couldn’t grasp the idea that one minute Savannah and I were playing Hide-and-Seek, and the next minute she couldn’t even get from the bedroom to the bathroom on her own.
During that time we lived in a tiny townhouse in a complex. Our unit was upstairs, so my parents carried Savannah up and down those stairs for four years. Eli , my brother was a baby then, so they also had to carry him up and down those stairs. Savannah and I shared a room since I was two years old. When she had the operation I was six years old and my parents tried to get me to sleep in another room. But I didn’t want to be away from her.
Even though the house was small, I have the best memories of that time. Savannah and I used to dance together all the time (before the operation), and we played “teacher-teacher” or “doctor-doctor”. It did not worry me in the slightest way that Savannah was different from other sisters. In my eyes she was and is as perfect as can be.
In 2013, we moved to a bigger house. This house was like a palace compared to our tiny house. It has a pool, a front and back garden, a lapa and even a cottage for my Gran. My Gran’s cottage is way bigger than our old house.
We all have our own rooms. It was weird for me at the beginning; not having Savannah with me. Eventually I got used to it. But there are still times when I miss having her in the same room as me.
I am an animal lover and the best thing that happened to us, is that we have a dog now. His name is Jaime and sometimes he sleeps in my room, sometimes in Savannah’s room and sometimes in my parent’s room. This was the start of a new chapter for my family.
Savannah no longer attends school as she cannot cope with it. She used to attend the Johannesburg Hospital School for autistic learners, but after the operation, she was unable to physically and mentally cope. My parents tried respite care for Savannah to have a break from us and for my parents to have a break from caring. It’s not easy being a parent, but being a parent to a person with special needs is much tougher. We thought we all needed the break but it was not so.
It was too weird not having Savannah there with her music blaring out when I got home from school. I felt sad that she was not there to ask me a million questions about my day. Although these things can sometimes be annoying, that is what makes this family. We all felt lost and empty. I missed her. We all did. When she came back we couldn’t let her go again because our home was not the same without her.
She spends her week days at home and my mother has designed a program so that she is still learning. Everyone in our home helps Savannah to do something everyday. It can be baking, tracing letters and numbers or helping her to type e-mails to her old friends. She can’t read or write but uses a special picture program to type. On week-ends she does whatever we are doing as a family. Sometimes she has her own plans with her friends.
All Savannah’s quirks and strange ways, have made our family weird and unique. I would not want to change that! I will always continue Loving Savannah.
A few weeks ago I came across this infographic from the National Council of Persons With Disabilities which I shared on my private Facebook profile.
The stripping away of the rights of people with disabilities is a lived reality. Whether they experience one or two of the denials or all ten, or more; it is a human rights violation and it is EVERYONE’S job to put an end to it.
So I was pleasantly surprised when two old friends who read that post asked what they could do to make a difference in South Africa to children with disabilities. My answer was simple: listen to people with disabilities instead of deciding for this community what they need. People with disabilities can help us to understand better than anyone what will be the most helpful supports for them. A few days later I was sent information about a joint project by The Solomon Academy and Bishop Bavin School (Bedfordview, South Africa). The Bishop Bavin School Pilot Project aims to educate and accommodate six learners with physical disabilities from sub-optimal backgrounds into Grade six at the school this year.
The learner’s educational plan will be individually designed to accelerate their skill set by ensuring the learners have the necessary technology as well as individual tutoring and medical aid. This project believes that every child deserves the best chance of gaining entrance to university. Furthermore, they aim to increase that number to twelve in 2019.
Now that’s doing something to put the power back in the hands of these learners. This is presuming competence and having faith with works.
The Solomon Academy is also running the Wheelchair Basketball Training Centre Rollout project at the school. Learners will acquire the skills needed to play and compete but the project needs a building to house the court, accommodation for the learners at the school, equipment and more. The aim is to house 40 children in the school by 2020 who will be part of this project. For international funders, this is a great opportunity to get involved in uplifting South African learners from previously disadvantaged backgrounds as well as aiding in furthering the policy of Inclusive Education. A capital prospectus is available for review for this project on request.
If you are like my two friends who want to make a difference, a REAL difference; then please speak to your places of employment about contributing towards a bursary or bursaries for the learners. Companies will qualify for B-BBEE points in either the Skills Development category of the new B-BBEE Scorecard or in the Socio-Economic Development category of the Scorecard. There other financial benefits for individuals such as tax rebates in terms Section 18 A of the South African Income Tax Act. Simply put you can get money back from the tax man when you donate.
It’s a win-win situation both for the learners, the school and for corporate and private South Africa. If you can’t contribute financially, there are other opportunities that will enrich your life even more than what you will do for a learner at the school, such as joining the volunteer program.
To help a child to get an education is the greatest gift you can give; especially when that child due to disability might otherwise be denied access to an education. Let’s stop throwing a pity party when we meet a person with a disability, and let us genuinely help to change the course of a persons life.
Have a chat with Andy Fraser or Quentin Robinson of The Solomon Academy to find out how you can help either with the Basketball initiative or with the learnership programme.
