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A Million Beautiful Pieces

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In March this year I was chosen as the Most Inspirational Blogger in the SA Mommy Blogger Awards. It was my goal to pay tribute to the other category winners. This year has taken a somewhat winding path, and I did not complete that goal. I intend to do that whenever I can by sharing a post each week about the winning bloggers. They are each talented and delightful in their own way, and together these bloggers give us readers a wonderful view into lives and topics we would know nothing about.

Today’s featured blogger is Chevone Petersen of www.chevslife.com. I was excited to learn that Chevone and I have a few things in common: we both love writing, we are part of the autism community and we are passionate about parent empowerment.

Chevone’s winning blog posts were:

The Last Boy on the https://chevslife.com/2017/08/16/last-boy-train/ ;

and

She Got Her Wings https://chevslife.com/2017/01/12/she-got-her-wings/.

Get a coffee and doughnut then click on over to Chevone’s blog and have a look around. Her writing draws you in and makes you feel that you never want the story to end.

Chevone, thank you for Unmasking Your Journey to Optimism.

Happy Friday Everyone

As I wrote in my previous post (5 September 2018) I made the choice to leave a full time job and to pursue a career as a writer and speaker http://amillionbeautifulpieces.co.za/2018/09/05/i-am-bravely-making-the-scary-choice/.

Making the transition from one career to another is quite daunting. Then to do something so different as working for myself and being based at home is another paradigm shift. To work from home where my adult daughter Savannah (autistic and has physical challenges) spends all her time, adds another dimension that requires planning and patience.

Before I made the choice to make this change I thought long and hard about this. Working from home means that I have to be unbelievably disciplined. Especially when as a mum, it is usually my job to make sure that everyone has everything they need all the time.

Part of the planning process meant that I had to decide what and who I had to do without. Meaning I would not be in a position to attend certain social events that would be beyond my new budget and it means that I had to forsake having a full time helper.

I am truly blessed to have a lovely lady who comes in one day a week to help me. I am in awe of her. She literally scrubs down everything and makes the effects of this one day very meaningful. However for a family of five there are many domestic chores that must be done consistently.

This was my first challenge: to have a plan of action on how I was going to get through the household chores and my work at the same time. I can’t function in chaos and am known to morph into Maleficent on a bad day when I feel out off control. Therein was the first challenge. How to control the external so that I could control the internal?

Challenge two is somewhat more complex. It requires that I must be emotionally wise and mentally strong. That makes me feel tired, even as I write it. Yes, challenge two is how to manage challenge one while I also have to be my daughter Savannah’s primary caregiver.

As an autistic person with physically complex needs and as someone who is struggling to come to terms with the reality of her life, Savannah largely lives within her own time zone. Some days she might wake up at seven o’ clock and the next day she might wake up at two o’clock. Sleep is a fluid thing for her. On a good night she will wake up twice. On a not so good night we may get four hours of sleep. Of course she recovers the lost sleep …in her own time. We don’t.

When she is wake she needs some physical help. She also tends to perseverate on certain topics and may ask me the same question a few dozen times or may tell me something a few dozen times. She has some medical issues for which neither her doctors or I have worked out as yet when to expect a flare up. Thus being flexible, patient and kind is the mountain I already knew I would have to climb all day and everyday from here on out.

That is not easy for me. I’d love to tell you that I follow some programme on how to maintain my peace but sadly I am still a work in progress. I am frustrated sometimes that I am limited by what I can do because my daughter has no options for her life. Oh, I’m sure that many people want to hear that it is fulfilling to look after one’s child when they are so vulnerable.

What is fulfilling about not being able to afford all the health care that your child needs? Or not being able to have care options for her that did not include and be limited to my aging mother. I’m human. Of course I want to be able to do something that is relaxing for myself more regularly (like not once a year). But yes, I’m a more than a little tense, when I have to leave Savannah specifically because she has been smacked and teased in the past by those who were trusted to care for her.

The perceived fulfillment of being a primary caregiver to your child in these circumstances is just a like fairytale…pretty story with scary undertones.

So here is what I did. I thought about what I can control and that addressed challenge number one. I can control how the house is cleaned and run. And the first step in that was to get rid of anything that we did not need. This resulted in several bags of clothing being donated to three families. We also gave away some pieces of furniture, toys and ornaments.

Basically anything that was just one more thing to clean but had no functional use had to go. I think I can write a whole series about decluttering……..and decluttering when you have a child that does not know how to cope with physical changes in their home. I won’t labour on this for now but I’ll share this story at another time.

As always my concern is that during these changes I want my husband and children to know that their experiences within this is important to me. Therefore underpinning my decision to work from home was several conversations with them about what it will be like to have me around all the time and what it will be like until I am earning a salary again.

Children can’t always think through all the layers that we adults can see. Sometimes as spouses we too don’t have the same view of our shared life. Therefore Michael and I had to talk through what working from home, and specifically working for one’s self in something as unusual as pursuing becoming a writer and being a paid motivational speaker, will mean for us.

We also extended this conversation in parts to our children. We had to talk through life without a helper and what that meant. It is always a struggle as a parent to know how much is too much for your child. I think in the area of being involved in chores it is especially difficult because in South African suburban households many families have full time domestic workers and many children do not have chores.

I also felt conflicted because Talisa and Eli help their sister with her needs everyday. How then does a parent know what is reasonable to expect from an almost sixteen year old and an all most eleven old with busy scholastic and sporting schedules?

Here is what I learnt:

  • Talisa and Eli do not count what they do for their sister as a chore. They were a little taken aback that I would see it that way. Talisa annoyingly reminded me for the umpteenth time that whatever they do for Savannah is what siblings do. Lesson learnt again for this mama bear: my guilt has no place where love lives.
  • The Super-mum title is not mine and I have to keep refusing that crown. As the weeks progressed everyone settled into having me around but they needed reminding that having me at home did not mean I was available to them as and when they wanted me. Hey, I’ve just clocked forty! I can’t do everything for everyone. So after more discussions I’ve negotiated a trade: a foot rub and cups of tea and coffee, and they can keep the Super-mum crown and all that goes with earning that title.
  • Tears are a part of my story. Sometimes I will cry for all that I can’t be. Sometimes I will cry because life is unfair. Sometimes I will cry because the endless cycle of the same emotional roller coaster is unbearable. But mostly I will cry because I love. I count myself extremely blessed to know that.

These are the tears that make up my crown. I wear that one without any fuss.

“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.

That’s what makes life beautiful. ♥

The hardest transition when you are a parent to an adult with a disability is that your child no longer has the safety of the pediatric ward when they become ill.

In the pediatric ward, everyone is in the same boat: parents looking after their children. Now that Savannah is sick again, she has to be in the adult ward where there aren’t any other caregivers staying with loved ones. So I’m an alien here.

On the plus side though we automatically get a private room because I’m not allowed to stay with Savannah in a general ward. It’s cheaper and easier to have me around or else the ward has to employ an extra nurse just for the adult with special needs. The nurses are really nice to us. I think it’s weird for them that they have nothing to do for Savannah but make sure that I’m administering the medication correctly. Bathing, toileting, lifting and carrying is all on me because Savannah is so anxious and doesn’t want strangers touching her.

The downside is that it’s a scary place when other adult patients aren’t so nice and we hear the yelling and arguing with nurses.

There is also an elderly lady in a room down the hall with dementia and at night she screams out names every couple minutes. It’s a little frightening to hear but at the same time I feel for her and her family. Being a caregiver to my child is more natural… Not easy just natural. But it must be so tough for this lady’s adult children to cope with the emotional and medical chaos of their elderly parent while maintaining their own lives. I said before.. Sometimes I learn too much about life.

Savannah’s doctor has a reputation for being the good looking doctor. He is Greek so I guess that explains it according to the nurses. All the nurses swoon when he arrives. When they ask Savannah if she thinks he is handsome, Savannah replies with a deadpan expression “No”. The guy is about her father’s age and as she says “eeuw” 😉

For some ungodly reason tea is served at 4:30am so I’ve been awake since then. I’ve already showered, bathed Savannah, administered her meds (the fight against the nurses injecting her is less stressful each time) and I’ve tried to entertain Savannah by taking selfies with her and reading Anne of Green Gables, until she is sick of me and turns to sleep.

Then I have my own care pack and entertainment pack with which to pass the hours of interminable waiting for Savannah to turn the corner.

If you know of someone who is a caregiver and you want to do something nice for them: Take a close look at the picture of the items that make up my care/survival pack. By providing one or two of the items or similar items to a caregiver, you can make a real difference to their physical and emotional health. A subscription to an online network or a contribution to their data bundle are other ways of helping that are meaningful too.

When I have ways of coping in these stressful, unusual situations.. I’m less of an alien.

I was scrolling through my Facebook feed and this post by ‘A Minor Bump in the Road’ caught my eye:

The Medical Mom.

 

It couldn’t have been more apt because I’m sitting in a hospital bed with Savannah curled up tightly next to me.

I had hoped that I would not be this mom. Twenty two years later I am the Medical Mom. I know things I wish I didn’t know.

I have mastered the art of patiently nodding as well meaning people (not professionals) share their medical diagnosis and solutions for Savannah. I have lost the energy to tell them why their typical solutions won’t work on my child. And as I listen and thank them for their advice and care, all the while I wonder why do I have to know all this.

This isn’t my life. I’m in the wrong life. Just now it’s going to be fixed and I won’t have to know all this medical stuff. But no! Apparently even if I’m in the wrong life… it is not going to be fixed.

My life is here holding this terrified, panic stricken adult as she fights against meds and nurses and me. I am that mom. This is my daughter and this is our fight!

Thank you ‘A Minor Bump in the Road’ for this post. It is so appreciated.

Today, as we celebrate Women’s Day in South Africa and my family celebrates our eldest daughter Savannah’s 22nd birthday, this guest post is a touching tribute to sisterhood, the value of relationships and love in its purest forms.  It was a great reminder to me about simply accepting life for what it is. About living in the moment and to appreciate that my daughters are much braver than I could have hoped for.

Talisa my second daughter wrote an essay for a school assessment. Yesterday when she received her score she was thrilled and as soon as I arrived home from work, she asked me to read it. I was blown away. Not only by my daughter’s writing but by the depth of her content and her bravery to share an emotional and personal story.

For Women’s Day 2018, I honour my daughters by sharing their story as written by Talisa Pillay: I Can Only Imagine.

“My worst fear is to be trapped. To be stuck with no way of escaping. To know that no matter how many times I try to break down the walls, I just end up being pushed down again: like an unwanted toy, shoved into the darkness of a cupboard. When my voice becomes one with the stale air around me.

My sullen thoughts are suddenly interrupted by a strange sound. I frown, creating creases on my forehead, as I try to riddle out where exactly the sound is coming from. I stride over to my window to hear if the sound is coming from outside. As I gaze out onto the brown, lifeless grass; I realise that the strange sound is music. It is not coming from outside but from the room next door.

A wide grin stretches across my face like the sun’s bright rays on the earth. I close my eyes and let the jumble of music dance in my ears and sail through my memories. It starts off with Whitney Houston’s ” My love is your love”, jumps to “Shake it off” by Taylor Swift, slides to Michael Jackson’s “Smooth Criminal” and ends with a bang to “Desi Girl” a beloved Bollywood song.

I’m smiling now because not only do I know all the songs from the top of my head, but I also know who is playing the songs and why. Sometimes when words fail her, music is the only way of expressing her most inner, intimate feelings. Music is entwined with her soul. Marvelous isn’t she? My older sister Savannah, my Savannah. That’s who she is.

As I open my eyes back to reality, I turn to my ancient wooden desk and see my forgotten cup of tea begging to be drunk. I let my black leather chair engulf me as I sip my now iced tea. There is a bouquet of soft white, purple and pink flowers that I catch myself staring at as though I might spot an ant on the dainty petals.

Savannah picked them out for me. She’s honestly the most humble, thoughtful human on this wide wide planet. In all fairness she shouldn’t have to be. Do you know why? Because although she has a smile that will melt ice and a laugh that will drive away your misery and a brave, precious, enduring soul; she also has a body that works against her. Yes, she is a person with complex disabilities.

Please don’t pity her or shower with bland, meaningless “You are such an angel” or “You are a special girl” but pity us people who get so annoyed for not being able to understand her slurred speech when it’s not her fault. And through all of this she still loves unconditionally and gives when we don’t deserve it.

She is the real warrior in this upside down world. I don’t know how she does it and I guess I never will. As the last drop of tea knocks against my lips, all I know is that…..I can only imagine.”

Posted with the permission of Talisa Pillay and Savannah Pillay

Happy Women’s Day to WOMEN everywhere!

 

Last week I shared with you that after colour treating my hair using Inoar’s hair treatments, my hair is still soft and healthy.

This week in my second installment about Blo Bar, I wanted to let you view for yourself the flexibility and skill of Stacey Swanepoel, my hair stylist at the Blo Bar.

All the stylists are widely experienced and amazingly fast. That was what I appreciated the most. The up styles that Stacey created for me were done in under an hour. I’d venture to say that on days when my hair was prepped the day before, then the styling took about forty five minutes.

Stand a chance to win a wash, cut and blow dry to the value of R450 with Stacey Swanepoel from the Blo Bar sponsored by A Million Beautiful Pieces.

To enter choose the style which you like the most from the pictures below and follow the prompts thereafter to enter.

 

a Rafflecopter giveaway

A winner will be randomly selected on the 10th of August 2018. This competition is only valid to Gauteng residents as the Blo Bar is situated in Alberton.

Travel and any other expenses are excluded from this prize.

The Blobar is situated inside Meyersdal Nail and Beauty Studio, Meyersdal Mall, Shop No 1 upper level, corner Michelle Avenue and Hennie Alberts Street, Meyersdal

Phone: 011 867 0494

Email: info@blobar.co.za or bookings@blobar.co.za

Web: www.blobar.co.za

This year I did something that was not at all what I would have thought I would have done. I had my hair washed and set professionally for three months. It was such a spoil. I know that’s the status quo for many people and I can now see why. When Michael Davis, the owner of the Blobar, sponsored my hair treatments and hair styling care by the talented Stacey Swanepoel, I had no idea how appreciative I would be.

I have not done any treatments for my hair in about eighteen years. I probably had a trim every four months or so. Being a mum to three and with Savannah, my eldest requiring medical treatments; my hair care was not a priority. So the experience that the Blobar offered me was amazing to say the least.

Stacey and the team at Blobar Hair Salon have such a great vibe. Every Monday morning I started my week with a delicious cappuccino and a butter cookie while having my hair washed with a very relaxing head massage.

Now I was the type of girl who only bought “off the shelf shampoo”. So it was after a very long time that I was exposing my hair to salon approved hair care products and it was the first time I was introduced to the product brand INOAR. There are a few options within this brand for different hair types. Stacey recommended INOAR’S Argan Plex Shampoo and Conditioner for me.

I’ve always had good hair so I didn’t have to worry about damage before. When Stacey suggested that I have a change of color; something else I have not done in eighteen years, I was concerned about damaging my hair. However since having my new hair colour, my hair has remained healthy and is also shinier and softer. The INOAR range uses Argan oil in it’s makeup, so hair is not just washed but it also undergoes a gentle treatment at the same time.

My natural colour:

My Indola Colour and Inoar Treated Hair..So love this colour

After each wash and set, Stacey used Argan oil to protect and nourish my hair. It’s a little bottle of magic. I experienced no itchiness to my scalp, no split ends and no breakage. Especially as Stacey used a GHD frequently on my hair, I expected some damage. When my hair remained soft and nourished, I was impressed.

INOAR retails for about R550,00 and a pack will last a good few weeks, depending on how often you wash your hair. For me, with Inoar twice a week is sufficient.

The Blobar is situated inside Meyersdal Nail and Beauty Studio, Meyersdal Mall, Shop No 1 upper level, corner Michelle Avenue and Hennie Alberts Street, Meyersdal

Phone: 011 867 0494

Email: info@blobar.co.za or bookings@blobar.co.za

Web: www.blobar.co.za

Next week: More about the stylist Stacey Swanepoel and pictures of the fabulous hairdos she created for me.

I have not written for my own blog for a while because so much was happening personally. Mostly I did not write because I was struggling to figure out how to deal with some painful insights I have learnt over the last six months. Do people care? What does it mean when people say “We know it’s hard’ and then have expectations of you that are adding to your “hard”? Or when they take it upon themselves to help you in ways that cause more damage than good.

I haven’t figured all of that out yet but I know it’s worth writing about because so many of us are making a life where the sun rarely shines. But we still need the warmth of the sun and to be showered with understanding and compassion so that we can continue to thrive just where we are.

Having the title of SuperMum is no blessing. It means you can’t have a bad day or you can’t sob uncontrollably on your kitchen floor or you can’t stay in bed all day wishing the wrongs will right itself. Being SuperMum means being lonely and that is not a healthy role model for our children.

To me being Supermum means being able to say you need “alone time” or “girl time” or being able to say…”It’s too much. I can’t do this anymore”. Ooohhhh, I said the unthinkable! Yes, Supermum means being human and allowing our children and our families to know that we all have limitations and boundaries.

Every curve ball that life throws at us need not be an opportunity to prove that we can do it all and be it all. It is an opportunity to say “Because I care about myself and the many roles I am, I am going to say No”. While I may still have to deal with certain curve balls like choosing between what is right for my daughter and what makes me happy; I don’t have to glam it up and make myself some kind of false hero for being mum.

There are far too many people who become heroes and saviours just because they are being kind and caring to their children or their spouses or their parents or people who are vulnerable.

I’m sorry. We don’t get hero status for supporting those who wear the body of vulnerability. They are the heroes.

When we are made to be larger than we are as caregivers, as foster families, as adoptive parents, as parents to children with disabilities, as spouses to a person with Alzheimers, and I’m guessing you get the idea here; we need to be vulnerable too. Living in exceptional circumstances means being given the opportunities to see both the magic and the tragedy of people living with bodies or minds that are different to us. It means for us as the witnesses to these extra-ordinary lives, we have to choose over and over and over again to live in the magic despite the darkness that is ever-present.

Simply put, in our (that is Michael and I) case and for so many other families like ours; being needed all the time, having someone else’s entire happiness, health and quality of life completely on our hands forever while knowing that often we have to make life altering decisions for them; and that the full impact and consequences of those decisions they will have to live through; is downright heart wrenching.

And no, it is not a lack of faith because in my case; it has been faith that has gotten me out of bed to do this over and over gain. It is not a lack of understanding; because in my case I have been both blessed and cursed to see wider, deeper and further than the issues at hand. Carrying a family through all that we have faced and continue to face while ensuring that all our children have space to grow and blossom in spite of living on the edge of the world; is no mean feat.

So why am I penning this deep and soulful post after so long? Since I’ve opened up about taking this year to “do me”; I have received unwarranted advice, been ripped apart by well-meaning people, my children have been given unsolicited advice about their future choices and the list goes on. I am proud that my children have a very close bond with both Michael and I.

However this does not protect them from people who pre-judge them because one of them has special needs. In fact Talisa and Eli even have a dark comedy routine about it. They mockingly joke about how people decide that they are neglected, how Savannah is our favourite, how to respond to people who ask really offensive and yes stupid questions like “how do you get on with your sister” or offer advice like “I think you don’t want that. You are just trying to make your mother happy”.

In the last few months I have cradled my children in my arms while they have wept when other people have confused and hurt them crossing the boundary into the territory that is only for Michael and I. So when my children are given unsolicited advice by people who know nothing about raising teenagers in a family with someone with special needs; they have no idea of the damage and havoc they wreak.

Or the effort it takes for me to like the world again every morning.

So here is the take away from this post:

*Don’t judge ever. It doesn’t matter what your credentials are or what your experiences are. Don’t judge.

*Do not ask children, yes even teenagers, questions about their parents, their siblings or themselves unless you have explicit permission from their parents to do so. If you are not the person who will stand by them forever, then you don’t get to do this. That includes relatives and family friends.

*Honour each other as parents. Being hip and cool to someone else’s child at the detriment of hurting that relationship is NOT hip and cool. Supporting each other as parents is vital to the overall health of our society.

*Just as babies require much tender, love and care; so too do teenagers. Their hearts and minds are very susceptible to hurt and confusion. Handle their confessions with care and their ideas with respect. It’s unhelpful to offer advice that makes them question their parent’s intentions. Just as the weight of responsibility of caring for babies falls on parents; so too does the weight of helping teenagers mature into adults.

*When you meet families who are doing the seemingly impossible, don’t point out to us what you believe are the potential hardships of our lives. Just because raising a family in unusual circumstances might be unimaginable to you; we are doing it all day everyday. This is our normal: thriving where the sun doesn’t always shine, amongst the boulders and the weeds…choosing to be magic every single day.

Contact me for a motivational talk about “Living My Best Life In My Never Ending Challenge”.

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