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A Million Beautiful Pieces August 31, 2018

The fire inside me is burning brighter

“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. ♥

Disability Advocacy July 13, 2018

When the sun doesn’t shine

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”.

T&C’s apply

Disability Advocacy July 2, 2018

Living & Loving Magazine June 2018

So honoured to have been featured in the Living & Loving Magazine for a second time.

Features June 20, 2018

Special Kids RSA

Our family has been featured on Special Kids RSA!

https://www.specialkids.co.za/home/meet-the-parents/item/502-michael-and-desirae-pillay.html

A Million Beautiful Pieces May 12, 2018

My Experience with MakeUp by Ryno MakeUp Artistry

As a mother to three who had so much going on for several years, I did not get the chance to explore what fashion and beauty trends worked for me. I did not know how to develop a proper care routine for my skin, my make up and my hair. For those of you who follow my blog, you will know that this year has been about exploring new hobbies and personal challenges. I have dedicated one year to myself. Sounds rather selfish when I re-read that. Yet I think it is actually one of the bravest things I have done.

So when I won a make over session with MakeUp Artist to the stars, Ryno Mulder; I was so excited. Then as the day drew closer, I was also a little nervous. Reality is that when you bare your face to someone for a couple hours, and allow them to do your make-up, you bare a little more than your face.

Up close and personal, all your flaws are now visible to someone else and that can be a little disconcerting. But Ryno is a true professional and a genuinely easy going, sweet soul and put me to ease within 10 seconds of meeting him.

I booked the session on the afternoon of my fortieth birthday. It felt right that I mark the day in this way. Sitting just within a window while the sunlight danced outside to the sounds of Indila, a Turkish music artist, I was literally transformed. While Ryno worked and we chatted, I was pleased to realise that I actually knew one or two tricks of the trade such as doing your eye shadow before your foundation and concealer so if any powder falls on the cheek bones, it can be cleaned away.

My greatest issue are these dark circles under my eyes. I think that is a problem that many women have. I knew that I should use a concealer. But which colour concealer? Ryno explained that orange was the concealer to use. The skin under the eye, is the thinnest skin on the face. Usually it is the blood vessels under the skin that for various reasons show through the skin causing the area to appear darker. That hue is a blue-green colour. So in order to conceal it, person like myself must use an opposite colour to blue-green, which in my case is orange. Voila! Now I know instead of bemoaning my dark eyes, I can do something about it.

I had to ask about contouring. Let’s face it, we didn’t really know how important contouring was until Kim Kardashian made women around the globe realise we can all have great cheekbones with the right colours and brush techniques. Ryno said I didn’t need that for day to day make-up. But yes for evening, glitzy events or certain types of photographic shoots, it could be something to try.

For my lips, Ryno used Mac Current Lipliner, Mac High Drama Liquid Lip Colour Ombrèd into Stila Lume Shimmer Liquid Lipstick. Oh my soul! I love lip colours and often when I’m tired, a great lipstick rescues my face from looking completely ashen. This blend was stunning and it lasted way into the night.

When I finally looked at myself in the mirror, my immediate thought was “Wow, I can still recognise my face, yet I look better than I believed I could look”. I wanted to cry but I can’t exactly pin point why I wanted to cry. I will admit, that my the fear of dabbing my face and changing one millimeter of my make-up kept me strong. This experience was big for me.

Many women for many reasons can’t see themselves looking and feeling good because sometimes life is too hard for too long, and we forget what “good” feels like. For me, by surrendering to the process and trusting Ryno to do my make-up the best way he saw fit; I can say that there was not better way to have spent the afternoon of my fortieth birthday. Thank you to SA Mommy Blogger Awards for the prize and Thank you to MakeUp by Ryno for your time and talent.

You can follow him on Facebook & Instagram. Thank you for this wonderful experience Ryno!

A Million Beautiful Pieces May 7, 2018

An Unexpected Surprise – When Your Inspiration is Inspired By You

I’ve started jogging twice a week in addition to attending training sessions at a Body20 Studio. To my surprise Savannah asked to join me on my jog.

This is pretty big for us because since Savannah was sick last year, she stopped going out as often. There have been periods of three consecutive weeks where she did not leave our home at all because she felt too ill.

So far this year, she has returned to church with us, is trying to manage her own diet and has even joined me in a photo shoot and on visits to some sponsors for @MRS_SOUTH_AFRICA. And today while I kept my pace in my jog; Michael helped Savannah as she wheeled herself for a few metres.

I would never have guessed that of all the women I would inspire by taking time for myself this year it would be my daughter, Savannah.

How life can come at you in a full circle moment! For so long Savannah was my inspiration and now I can be hers. I’m so grateful.

Features April 17, 2018

Won the Best Inspirational Blogger Award for 2017

On the 6th April I was announced as SA Mommy Blogger’s Best Inspirational Blogger. It is was reward enough to be recognised and I had no expectation of receiving anything else. But to my delight, goodness keeps coming my way.

Jacqui Bester from the blog One Messy Mama and the organiser of the SA Mommy Blogger Awards, informed me that I have been rewarded a set of wine glass trinkets from Muppie Lounge. Something pretty to dress the wine glasses that will hold the beautiful Deetlefs wine.

I have also been gifted a Make-up Makeover by Ryno Make Up Artistry.

Mercy me…. If this is how 40 begins… Bring it on!

Thank you SA Mommy Blogger Awards, Ryno Make Up Artistry and Muppie Lounge.

#thisisme

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.

The Best Carpool Karaoke Made Me Cry Too; But Not Why You Think

Have you seen the beautiful video celebrating children with Down Syndrome? If you haven’t please watch it. It’s an internet sensation and I applaud the creators of the videos. You can view the video at the end of the post.

When I first saw it, Michael and I were awake at three thirty on Monday morning with Savannah (our adult daughter with complex special needs) who couldn’t sleep. We found her in her wheelchair with her curtain completely drawn back, exposing her bedroom to the moonlight. She was looking outside and just crying. We helped her back into bed and comforted her as best as we could. While I waited for her to fall off to sleep, I was scrolling through my Facebook feed. That was when I first saw the video. The caption stung me because it contained the words “love, courage, commitment” attributed to the moms.

A couple of things were highlighted here especially as I lay awake with my twenty-one year old child. Firstly, all of the children featured were young children with Down Syndrome. Where were the adults with Down Syndrome and their aging parents? Adults with disabilities who are still playful or are still hugging a Barney stuffed toy may get the “cute” vote but people are generally uncomfortable when it comes to childlike adults. Yes, there are many,many people with disabilities who are independent and are adults in their own right. But there are also a large group of people with disabilities who will love Teletubbies forever, who will be thirty years old and still sit on their parents laps, who will obsess over a toy from a kiddies takeout meal that they received twenty years ago and who will happily bob around to long forgotten Disney movie songs. Theses families would have been doing this right along with their children for all those years. Even as they are both aging. LOVE,COURAGE and COMMITMENT looks like this too.

Secondly, it saddened me that the reality of the world we live in is that it is easier to share a video than work alongside families like us to keep us strong and committed for the long run. I recently met a mother who is seventy years old. Her fifty year old son is a person with a disability. He cannot live with her anymore so he is in a care home. She is still fighting. She is trying to get him a better wheelchair but his chair costs more than her medical aid company will pay. He sometimes goes to hospital and it’s a fight to get a suitable vehicle to transport him. At seventy she is still fighting. She talks to people, she yells at people, she writes letters, she tries to raise funds, she visits her son, she makes sure he is properly cared for and she hasn’t stopped for fifty years. That is what COMMITMENT looks like.

My best friend is a mother to an adult daughter with Down Syndrome. My friend has always been a single parent. Her daughter’s birth father decided he had a choice and chose to leave. Twenty six years later, my friend works two jobs so she can provide for her daughter. She has assisted care organisations when her daughter lived there and still volunteers her time to help organizations who aid children and women in need of support; believing that one day it will come back to her daughter. That is what COURAGE looks like.

I am never impressed by people who carelessly say “I love people with disabilities”. In strong families where being a person with a disability is valued and respected, LOVE is never in short supply. But physical and emotional energy is difficult to have for as long as you both live. If I had a ten rand for all the people who have said they love Savannah and how much she means to them; I would be super rich today. But their love wasn’t the kind that was about her and what was best for her.

When families love their children with disabilities we love no matter what happens or how we feel. We understand that the expression of our love may be one-sided. We love even when we are tired of doing the same thing over and over. We love when we are sad that we don’t have choices because we are bound to our child’s fate. We love when people who know nothing about our lives judge us. We love because we actually understand the meaning of LOVE. It is not a weakness to love but the greatest strength you can possess.

So next time when you share a video about families with disabilities that gives you goosebumps and moves you to tears; ask yourself this: If the people in the video were your neighbours or in your place of worship or were a relative would you help them and love them? Without the goosebumps and tears, could you give them your love, time and support? Even if it made you uncomfortable?

Do you see the people with disabilities in videos as people with feelings, dreams, emotions, fears and the capacity to love? When you write beautiful captions about their families or carers without acknowledging the people who the videos are about, you nullify their humanity. If you write anything about our community, commend both the people with disabilities and their families. You can’t decide which of us meets the criteria for accolades but you can influence the support and understanding the entire family receives. That is true awareness.

And to Love especially in our families who are living the special needs life, Love is simply this:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13:4-8 (NIV)

Thank you to the moms of Designer Genes Facebook group for definitely the Best Carpool Karaoke.

A Million Beautiful Pieces March 16, 2018

I am bruised. I am brave. This is who I’m meant to be. This is ME

I am so excited to try my hand at making a video for you instead of writing a blog post. From the song track This is Me “I am bruised, I am Brave, This is who I’m meant to be, This is ME” was what was playing in my head as I made this video. My team and I are learning about video editing and we aim to improve all the time. For now we hope you enjoy this offering from us.

Thank you in advance for watching: