Desirae Pillay Archives | A Million Beautiful Pieces

My Inspiration September 6, 2022

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

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

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

I was not part of that group.

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

That did not happen.

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

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

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

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

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

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

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

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

Why?

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

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

Disability Advocacy November 20, 2018

Parenting: Being Courageous even in Uncertainty

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

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

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

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

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.

SA Mommy Blogger Awards 2017 November 19, 2018

SA Mommy Blogger Awards: Best Social Media Expert went to Choose A Row

If you are new to social media and might be wondering how ever do people earn a living from posting photographs, then you need to know about the blog ChooseARow by Teri Row. Teri was the winner of the Best Social Media Award from the SA Mommy Blogger Awards.

Teri’s blog answers all your questions about social media and working with brands. She herself is a brand manager and a social media expert. She is also a mommy. How does she juggle it all? Teri clearly loves what she does and from her posts, you know that she is a master of her trade.

Teri’s winning posts were “Don’t be fooled yoh! What brands need to know.“. Teri expertly explains how to work with brands and what to consider in becoming a social media influencer.

I loved Teri’s other winning post because it is so relevant at this time of year. I myself am a newbie at social media and it can be daunting to post consistently in order to remain relevant and influential. However over the silly season, this can be quite tricky as the call to relax and unwind beckons us. What will become of our social media platforms? Will we be erased from the internet if we don’t post over December? Well, Teri clears that up in her post “The Silly Season Switch Off”

Teri, thank you for sharing this valuable information, and for empowering other women and mothers too. You definitely deliver “kick ass content” and you embody “the spirit to succeed”.

A Million Beautiful Pieces November 7, 2018

I Am Weighing In On The Weight Issue

It’s the most wonderful time of year. Or is it?

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.

Yum. Yum.

SA Mommy Blogger Awards 2017 October 26, 2018

SA MOMMY Blogger Awards: Best Tear Jerker Award was Disney Mom Blog

Wow! I don’t often use exclamations in my writing but Sade’s winning blogs give voice to the experiences we often don’t want to talk about or don’t know how to express our emotions about it.

When I worked as an assistive technology advisor in the disability sector I witnessed so many stories of success and triumph. I also witnessed so much suffering. Both physical and emotional. I think the most complex was when a person with profound complications who was unable to care for themselves, eventually died. People think that the family would be relieved but so often even I, after assisting in as much as I could, would collapse at my desk in tears when I learned that the person had passed away.

Sade’s posts about her brothers tragic drowning at the tender age of three years old, and her mother’s heart wrenching death in 2017 after years of drug addiction; is an insight into the lives of the people left behind. Sade’s experiences of tragedy as a sibling and then later as a daughter, written while she is mommy to her beautiful son gives a face to what people survive to become the best versions of themselves.

Sade understood inexplicable pain already when she was six years old, and watched her family unravel in the face of her baby brothers drowning. Then she lost her mother to drug addiction and eventually to death.

Please read Sade’s beautiful posts and let’s remember that people who become addicts are also just people who are struggling to cope.

Sade thank you for your bravery, your honesty and your life. Your mother gave the world an amazing woman. For that, I honour her and you!

A Million Beautiful Pieces September 26, 2018

I Feel You Maleficent

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.

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”.

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