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Are you okay?

I do not want this December to be like the last one.
I do not want to talk about vitamins, vaccines, and the virus.
I do not want to worry. Worry about the people I love, the people I know, everyone in my life.
I do not want to pretend to be happy, and I do not want to live in sad.
I do not want to make plans and have them turn to sand.
I do not want to dig any deeper to find joy.
I am not okay.

I have been here before.
I have had these feelings before. The reasons were different.
I know I have been here before.

I planned and packed for the holidays. In ways, my friends could not understand.
I unpack. I set the room. Her own duvet turns it into her own bedroom.
I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods.
I re-organised most of the furniture. The wheelchair must get through.
I arranged the activities in advance and prepared everyone.
I knew where the nearest hospital was, and I packed the medical reports. Just in case.
I cooked. I served. I entertained.

I did well.
I got to it all.
I think it will be okay.

I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me.
It will be okay.

I wake. I listen. She calls. I go. I calm fears I do not understand. 
I go back to bed. I sleep. 
I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him. 
I feel the morning. I tip-toe out of the room. I set up for the day ahead.
I see them, my younger children, racing on the shoreline. My heart swells because they are mine.
I smile. I wave. They enjoy the beach.
I sit here. I hold her hand. The sand and the wind: too much for her.

I'll go to the shore tomorrow.
I'll go and dip my toes.
It will be quick. I’ll be back. They will need me again.

See,
I've felt this before. I felt all this, and I felt nothing, all in one go. But then
I learnt that all and nothing can work themselves out, when 
I dared to stop and ask them, what are they all about?
I heard them say: we are trying to let you know it’s okay to not be okay. 
I asked in a shaky voice: what is the way to being, “not okay”, as you say?
I heard them soothingly whisper: Come into the day quietly and softly before they all awake. 
We will teach you what it means to not be okay. 

I woke without the alarm. I started to write.
I wrote to God. I wrote to my heart.  I wrote for all the ones like me.
I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think.

I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me. 
I'm okay not being okay. Are you? - Desirae Pillay 2021 

Desirae has three children: Savannah (25 years), Talisa (19years) and Eli Michael (13 years). Savannah was born when Desirae was eighteen years old and she was a single mother for a time before marrying Michael. Savannah is autistic and is a person with cerebral palsy. Michael and Desirae care for Savannah as she cannot live independently. Desirae worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and is now employed in the child safety sector. She writes for the purpose of sharing different perspectives and to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. She writes because she knows that Faith, Hope and Love abide.

Today’s post is about a new idea I used to develop a positive mindset for Talisa and Eli as they began the new school year. It seems that my participation in Journey To You is a gift that keeps on giving as the idea was one which I learned at the course. I posted part one of this journey a few weeks ago: “My Greatest Gift This Year: Journey To You”.

When I participated in the life coaching course Journey To You, we learnt a valuable exercise about self-awareness and self-love. There were many coaches taking small groups throughout the three-day course. My coach was Maligay Govender and this was one of the processes which she guided me through. I had to list positive attributes about myself on an A4 length of page. It could be what I thought of myself and what others have said about me. It was incredibly difficult to do because I saw myself in a negative light. With encouragement and friendly firmness Maligay encouraged me to get that list of positives done.

When I thought I was done, she challenged me to draw another column and to add more positive words about myself.  It took a very long time for me to do that. Imagine that. I who believe in seeing life with possibility and beauty, could not find many positives attributes about myself . When I had filled out as much as I could, Maligay encouraged me to read it out loud with the words “I am” before each descriptive. There I was, feeling a bit silly but at the same time knowing I was standing on the edge of a big change. So I began:

“I am resilient.”

“I am loving.”

“I am wise.”

“I am resourceful.”

“I have nice eyes.”

“I am the best mum ever.” (Savannah frequently tells me this).

“I am soft.” (Eli’s description of me).

“I am a role model.” (That is how Talisa describes me),

and on and on I went listing off 43 positive aspects.

Maligay added her own descriptions about me which were very touching and it took me by surprise. She encouraged me to speak slowly and to think about each attribute. I can best describe the experience as a computer that had crashed and during this exercise was finally rebooting. Then I was back online. (I know it is strange that I compare this experience to a computer but I worked as an assistive technology advisor so it is still the lens with which I see some aspects of life.)

Last week I wrote about the importance of being mentally and emotionally prepared for back-to-school in the post Back-To-School:How you start is how you finish. I found great value in the exercise that I learnt at the course and introduced a simplified version of it to my children in our back-to-school preparation.

Talisa and Eli struggled to write down positive attributes about themselves. They both said it was easier to write down all the negative beliefs they held. I wonder where they got that from? Unfortunately they got that from me. It was a good lesson in the importance of mirroring self-care and self-love for children.  What was even more meaningful is that Savannah was also part of making a list of her positive attributes. I verbally listed many positive words and she chose which attributes best described her. Then I wrote it down for her.

An example of positive personal attributes or character traits for children from http://www.teachingmaddeness.com/

When Talisa and Eli finished their list, they read it aloud with the words “I am” before each description. It was so moving to watch how their faces came to light and their posture changed as they went through the list. Like Maligay taught me to slow down and to be thoughtful about each description, I encouraged Talisa and Eli to do the same. It was a singularly empowering exercise and one that both children found enormous value in.

I realised that no one actively pursues holding onto negative beliefs about themselves. Yet life has a way of subtly bringing those negative beliefs to us as if it would be arrogance to think good of ourselves. Yet imagine going through life facing all those negative beliefs with a repository of positive personal truths to combat it with? It would simply be a Journey With Ourselves.

“As a man thinketh in his heart, so is he.” Proverbs 23v7

The pursuit of academics and all it entails must also be a journey of self. Not one that destroys our children or costs them their emotional and mental well-being. Children are children for such a short time in the story of their life. Being self-aware and loving oneself is surely the route to loving others and to creating a fulfilling life.

Some of the coaches who guided the participants.

If you are feeling stuck in your journey, why not book a course with Journey To You. Not only will it free you to be yourself. It will empower you to be the best version of yourself and to mirror that for your family. For more information about the next course, click here.

And finally, I dare you to make a list of all your positive attributes and to say it out aloud. Let me know if you do.  Believe me when I say that there is no journey worth taking like a Journey To You.

Thank you again to all the coaches, the participants and Deon Greonewald for this wonderful journey.

 

On this last day of 2018 I am filled with gratitude as I recount the amazing year I’ve had. Turning forty years old has been my year of re-awakening, re-aligning and re-learning. Thank you to the people who blessed my life this year, especially to everyone who follows A Million Beautiful Pieces.

Your likes, shares and recommendations helps to put Faith, Hope and Love into the world. Without your support, I would not be able to use my gifts and my story. You are the Wind Beneath My Wings. Together we will soar through 2019 and make it a year that will count.

I’ve been saving this poem by Erin Hanson just for today. You will want to save this to remind you not to pick up again what you must leave behind in 2018.

And a new year has arrived

Take down all your trouble
And wrap up your regret
Tie them to the rays of light
The sun sheds as it sets.
Whisper all that was
To fleeting seconds as they pass,
But hold onto your hope
For something new is here at last.
Beg your own forgiveness
And then grant it in one breathe,
Lay the year down softly
As it waits to face its death.
Then sit with eye turned skyward
As the night-time comes alive,
All that’s been is over
And a new year has arrived.

-e.h

Happy New Year, my friends. Let’s make 2019 count.

Have you ever felt that you needed the world to stop spinning for five minutes so that you can get off, catch your breath and then jump back on again? I felt that way for a major chunk of my life. Life just kept happening and the resources that I depended on began to wear thin.

Those resources were all the voices that took up space in my head and it was the reason behind my drive. It did not replenish already depleted resources nor did it nourish me so that I could keep going. It just drained me to the point that I had no will to pursue my own dreams and aspirations. Yet I did not know how to replace those resources or even if it could be replaced.

I just knew that it was not serving me.

Myself with Deon Groenewald NLP Coach and CEO of Journey To You

These were my resources:
“You are the eldest, you must hold it together”.
“You are responsible for this. You must fix it.”
“You must look after your parents.”
“You must be responsible for your parents marriage.”
“Your mother needs you. Your daughter needs you. Your husband needs you. Your children need you. Your friend needs you. Your job needs you. This organisation needs you. Your church needs you. You must take care of all this.”
“You are responsible for your marriage.”
“You know that when there is a child with a disability, the marriage is under enormous stress. You must make your marriage work.”
“Your other children will be deprived because they have a sibling with special needs. You must make sure that you don’t neglect them.”
“You are the woman. It’s on you to make it work.” (‘It’ referring to anything and everything about life in general).
“You did this. You must fix it.”
“You must hold the family together.”
It’s exhausting just writing that.

Excited and waiting for transformation

Then fast forward to a few weeks ago when my brother Darren called me after he completed a life coach course at his place of employment. The life coach who conducted his training was hosting one final course from the 19th to the 21st December and Darren was very keen for me to participate in this.

Now I’ve heard of a few people who are really good at teaching  about self-care or self-help but nothing ever resonated enough with me to attend any course. I also need the guarantee that when I spend money on myself that could be used towards my daughter Savannah’s care, the value must be spectacular.

Past experiences also taught me to stay away from people who need to ‘give me a word’ or promise to ‘heal my life’ or ‘know a lot about how people think’. The most well-meaning intentions by the most passionate people can cause more damage than good. When a pastor, coach or counsellor does not have the skills, understanding and compassion to help a person through an issue that could potentially cause that person to break, they actually have no business engaging an individual on such a personal level.

What was interesting to me is that my husband shares these same reservations as I do, yet it was him who finally convinced me to register for the course, knowing full well that I would be away from home from 9am to 9pm every day for three days.

On the 19th December as I drove to the course, I was ready to be open to the experience and not to show up for anyone else but myself. I have a reputation of ‘mothering’ people wherever I go and I’m known to be an extrovert. This time I just wanted to be true to what I was feeling during the process. Yes, that it’s..I told myself ‘Trust the process’.

The process I was to trust was ‘Journey To You’ headed by renowned NLP Coach Deon Groenewald. NLP is an acronym for Neuro-Linguistic Programming and Deon has earned himself a reputation as a Master of his field. ‘Journey To You’ is a three-day intensive journey of transformation developed by Deon over a ten-year period. It is designed to help people to effect change from a deep place inside themselves that results in an amazing personal journey.

I knew none of this when I arrived at the course. I did not read the course details because I did not want to go into my self-defence mode. As an over thinker and someone who prepares for every possible outcome, I wanted to let the process guide me instead of the other way round.

As I write this I’m incredibly overwhelmed by what took place over the three days. I learnt so much about the science of how the brain deals with information and how that affects our decision-making process. The pivotal points for me was in understanding my conscious mind and my sub conscious mind, aligning my first reaction and my second reaction, learning how to plan for my goals and in learning to plan a celebration for myself when I achieved a goal.

More than learning these pivotal points in the context of the large group, I was also assigned to a life coach Maligay Govender. Each participant was part of a smaller group led by a qualified coach. It was in my small group that I was taught how to apply what I learnt in the larger group. Maligay made the principles and techniques real for me by guiding me on how to integrate it into my life plan which I had begun to fill out from the morning of Day One.

Maligay Govender Coach) and I

As I write this and recount the timeline exercise that she did with me, I am filled with emotion. Timeline was the most vulnerable I’ve ever been until then and it was the first time I allowed myself to remember who I was as a child. I actually was able to visualise myself at four years old and to reconnect that person to myself today.

Years ago, my then pastors wife asked me to describe myself. Who was I? It took longer than a month for me to give her an answer that did not include daughter, mother, wife, sister, friend and all the roles I fulfil. When I eventually did give her an answer, I gave her a scripture but it did not describe me. It described someone I wanted to be. As Maligay finished the timeline exercise with me, I realised that I could finally answer that question without all the roles that form part of who I am.

I knew who I was without all the events that shaped me. I liked that person. And I wanted to live with her innocence and her passion again. It was so powerful that I cry even now as I understand what a gift Maligay helped me to find within myself.

Maligay and Bharat Trikam, a fellow change maker

On Day three of ‘Journey to You’, I knew that the moment had come for me to commit myself to a process of understanding how to listen to my own authentic internal voice. With the entire larger group of participants in the room, I courageously volunteered to allow Deon to take me through this process.

I am not going to give the details away of how that was done because I fear I may reduce it’s impact and beauty here. I will share this:

  • There wasn’t any music to influence what happened.
  • There wasn’t wild applause or coercion from the other participants.
  • There were many people in the room including a film crew as this was being recorded for television viewing. Yet the room felt that it was filled to every corner and every space with nothing but goodwill and love.

Deon was respectful of me, never asking me to share more than I was comfortable to share. The key though was that his process did not need for me to bare my soul so that he could rescue me. He only needed me to trust the exercise and to trust myself.  I walked off the stage without the anger, resentment, fear and oppressiveness that I carried with me for a long time about my childhood. I walked off that stage with the door to a part of my soul thrown wide open and a feeling of self acceptance, contentment and peace.

Myself and Nadia Marillier, a fellow change maker

At the beginning of this year, I wrote that I entered a Women Empowerment Programme as a gift to myself http://amillionbeautifulpieces.co.za/2018/03/09/entering-competition-title/ . I wanted to give myself one year to experience life on my terms. I resigned from that competition because I realised early on that it was not what I was looking for. As I write this, I feel humbled by how God works. Just before the curtain dropped on 2018, God remembered me and He gave me my ‘Journey To You’.

My heartfelt thank you to Deon Groenwald, to Maligay Govender, to all the coaches; and most especially to my fellow course participants with whom I now share another beautiful piece of life with.
I am blessed I am.
I am grateful I am.
I am Desirae I am.

There is so much more I want to share, so look out for part two of My Greatest Gift This Year.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Savannah and I decked out at a wedding last year.

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

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

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

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

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.

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 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

Just when I decided to start writing, it seems as if my world has tilted and requires all my strength including my reserves to get it back on even keel. Suddenly I can’t find time to write as every ounce of me is consumed with just making everyday life run smoothly.

Yet insistently and persistently a couple of ideas are impatiently marinating in my head. Each insisting it should be written first. But NO. Right now I have to bring myself to a point of order:

a. Find a domestic worker/helper as soon as possible. The back story here is that our helper left us suddenly and without warning. I can only deduce that she wasn’t prepared to continue working with someone whose health goes more down than up. That someone being Savannah. So after two weeks of doing as much as I can to keep this home running, I need help! Did I just admit that? Will the sky darken over me? Will a storm erupt around me? Oh wow…I feel the sunlight. The most important people in my life, my inspiration; my husband and children need me alert and engaged. And yes, maybe I can be Wonder Woman (trumpet blares) work full-time; keep house; be the physiotherapist; be the good AAC communication partner; be mom to my special needs, medically complex twenty-one year old; be mom to an almost, not quite fifteen year old; while nursing my son through the longest infection he has had to date. But will I be nice? Will I remember who needs what meds? Will I shout more and talk less? What will they remember about these days? Mmmmmm….got to find that helper.

b. Take better care of my hubby. He hardly sleeps. He wakes all through the night to tend to Savannah and more recently Eli. He arranges his schedule to get me to and from the airport when I travel or to drop or collect children when my mum can’t get them from school. He is my co-conspirator, my best friend and basically the reason why I still appear to be a fairly nice, well-adjusted person. Without him, I can morph into Maleficent combined with a little Captain Barbosa. My darling husband would dispute all of this and say all sorts of kind, beautiful things. And he would say he doesn’t need anything else but me looking after me which brings me to point of order c;

c. Take care of me. So fellow parents of children with complex needs, there is that darn age-old conundrum: Take care of yourselves while checking all the tick boxes on the “absolute must be done” list for our special needs lives to thrive.

As families where someone has special needs we know the stats on divorce, family dysfunction, burn-out etc. People are always too ready to point out those issues which are largely unhelpful to know about.

Here in good old South Africa, and I’m sure many other parts of the world too; we have absolutely no help from the government. We cannot depend on public services for aid with in-home care for a person with special needs.

Nor do we receive any aid for domestic services. Either we do it all ourselves or we work hard to pay people to help us (knowing full well we must be ready at any given moment to step in when they let us down) or we must simply pick our battles: I’ll be a great mother and a mediocre physio coach or a fair communication partner or I’ll just be a good enough cook today…but whatever I’ll be; I’ll be it honestly.

For now that means I’m honestly enjoying snuggling with my son; picking through his delightful, crazy questions. While Savannah listens to the same song for the hundredth time this evening and we both know she will survive without a physio session tonight. The ironing will get done another time and the Whatsapp messages will be answered tomorrow.

Right now, I’m helping someone really important:ME.

 

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