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Today Talisa turns sixteen years old. Where did the time go? As we reminisce over the last sixteen years, I’m thankful for so much. Mostly I am thankful for the special relationship that Michael shares with Talisa.

Few fathers understand how to be a dad to a daughter in the different phases of her life. Michael was raised in a very conservative family who believed that wearing dresses, amongst other patriarchal ideas, was how a women showed her dignity. The focus of what made a strong, courageous woman was placed on all the physical aspects of being a woman, and not on what counted….a woman’s heart, mind and soul.

Far from his conservative upbringing, Michael has raised his daughters with the freedom to express themselves and with the confidence in knowing that nothing they do will ever change his love and commitment to them. They are his greatest delight and his deepest heartache as he mourns silently all that Savannah will not experience in her life as a woman with a disability.

From the softness he shows his daughters in so many ways; to indulging their musical tastes; to patiently waiting outside change-rooms while they try on clothing or can’t decide what colour blusher to buy; to waiting while they take over the mirror in our bathroom; to accepting that he will buy hair bands and lip glosses far too often; to sitting up at night until Talisa completes her homework: Michaels’ heart has completely been flooded by being a father to his daughters.

When a girl child is honoured and respected by her father; when she is made to feel capable, and still has a safe place with her dad to be vulnerable; she becomes the most remarkable gift he can ever give the world. A women who is whole.

Today as we celebrate Talisa’s sixteenth birthday, I am so emotional remembering the day she was born. I remember looking at her in my arms and telling Michael that he need only remember two things about raising a daughter:

The first is that you are guaranteed (for the most part) the first eighteen years with them until they become independent. That means only eighteen Christmas mornings when your children are all yours. To me if an average lifespan is seventy years then eighteen seemed like just a drop in our entire lives. So Michael and I agreed to do our best to make those eighteen years as amazing as possible.

Eighteen years where we will hold every moment with tenderness and gratitude before it slips away.

The second piece of revelation or advice if you will, that I gave Michael was don’t ever, ever let your daughters down. Never. Daughters will need their fathers because when you don’t have a dad, the world thinks nothing of breaking you. It knows you have nowhere to go.

Be the dad whose daughters don’t have to look for love in the wrong places or test life to figure out what Love feels like. A strong, capable women already knows what Love really is because she soars from the shoulders of the mighty man who raised her. And when she needs a soft place to land, it is usually right back in her daddy’s arms.

Today as Talisa turns sixteen she makes us so proud to be her parents. She is a remarkable sister, a genuine friend, a blessing to her grandparents, and in so many ways she is both mine and Michael’s ‘right hands’. She is my delight and her fathers greatest gift to the world.

Happy Sixteenth Birthday Talisa. You will always have my voice in your ear praying for you and my hand in yours whenever you need me. So too you will always have your dads’ arms to hold you and his shoulders to soar from. When the time comes for you to soar, don’t be afraid to fly high my darling. The view will be spectacular.

Never forget why we chose your name. May it be a reminder that God is always with you. We love you.

(The meaning of the name Talisa” is: “Consecrated to God”.
Categories: Hindu Names, Indian Names, Sanskrit Names.
Used in: English speaking countries, Hindu speaking countries.
Gender: Girl Names.
Origins: African-American.https://www.thenamemeaning.com/talisa/)

Woah! What a week it’s been. I’ve had a couple of balls up in the air with a few landing where I wanted it to, and others not landing at all. That is how life goes, right? You win some and you lose some. Some people work with you and others work against you.

The challenge is how to keep my pace, motivation and stamina to keep pushing forward. I know that owning my own truth and respecting the journey plays an important role in being successful wherever God plants me.

Last week I wrote about my affinity to Maleficent, a Disney fairy Queen, and this week I’ve been reflecting on the life of Frida Kahlo. I was speaking at an event where the theme was inspired by this controversial artist.

I know a little something about what a person goes through when living with physical pain that will only get worse. For this reason I have much respect for Frida Kahlo’s persistence to do what filled her soul and to express her journey with such blunt honesty.

In our age we are largely defined by the visual content that we share on social media platforms. We are able to instantly create a community with similar ideas to us and we quickly find ourselves belonging to a social network.

As a participant in a women empowerment programme earlier this year, I became aware of what makes a good selfie and what makes a great selfie. I’m not shy to admit I’m still hopeless at this. I don’t have a discerning eye for colours, lighting and poses. I just want to capture the moment in case I miss it. And so alas from time to time, you my dear readers will be subject to a few really bad selfies from me.

This new way of living whereby we capture our lives and shared it through visual mediums with the world is exciting. Businesses are flourishing as anyone can now make their products available far more quickly to a wider stream of people. Being a social media expert is also quickly becoming a career for many people.

It’s an exciting time to live in.

I wonder though if Frida Kahlo was alive today, would she enjoy the same level of respect and admiration as she has gained since her death? Would we have “liked” the graphic and violent artwork depicting her physical and emotional pain?

Broken Frame (1944) https://www.fridakahlo.org/the-broken-column.jsp is a graphic portrayal of her semi-nude torso after her back surgery. If that appeared on our timeline would we have clicked “like” or would we have scrolled on because her post would not have improved our own social media presence?

The Two Frida’s (1939) https://www.fridakahlo.org/the-two-fridas.jsp is another symbolic portrayal of Frida Kahlo’s emotional state regarding her husband Diego Rivera. I wonder if this piece would have been reposted or would we have commented on the dress and completely ignored the broken heart?

Oh yes, then there is that facial hair depicted with clarity and confidence in many of Frida’s self portraits. How many people would have unfollowed her on social media after she might have shared one of those pieces?

What would have become of Frida then? What would have happened to her bravery and her self esteem? Would self doubt have set in and would she have stopped painting? What a travesty that would have been? And what a void that would have left for the generations since.

Whether we agree with how Frida expressed herself or not, her influence is undeniable. By using her platform as an artist to mirror her life, and in turn by mirroring the lives of many people who face insurmountable struggles; Frida gave heartache, strength and courage a face. Her work is honest and raw. It is untainted by the influence of how many Instagram followers she lost or gained.

It seems that social media statistics seems is the benchmark for what we decide to feed our intellect and our hearts with. For myself, I hope to remain true by continuously living the truth of my journey with integrity and bravery. Our children need to know that we were more than perfectly taken selfies. They will need to know that we were genuine in our joy as well as in our pain.

So tell your story.

Even when they unfollow you.

Someone, somewhere is waiting for your bravery to set them free.

Have you ever thought why is this my life and how did I get here? Like me, you love the people who are in your life and you have created a beautiful life. When you look back, you are thankful because you realise that life could have been so much more cruel and the challenges you have overcome could have consumed you. So you know that you must be grateful for where you are.

Except there is that pervasive feeling that you are missing something that everyone else has already found. Or that you are just not where you should be.

It’s like we all set out for a walk and then some of us were given a different road map to follow while other people were allowed to follow the regular and more organised route. When we find ourselves back on the same path alongside them; it seems that they have gained skills, which we do not have, and they navigate the path with so much more ease and with some pizzazz too. And we feel kind of old and tired because the cares we have come to know create a fog around us.

There is our group hesitantly looking for the boulders and deep ditches. Planning for the storms that only we believe are bound to come while trying to be a good walking companion to the other group. We feel that the people from the other group have no idea where we have been. They listen and empathise but it is such a foreign journey to them that the only way they can reply is to talk as if they too have known the same fog.

“Oh yes, I found it awful to sleep out in the open. I mean my tent was so thin and I could feel the chill. I so wished I could have brought the warmth of the fire into the tent with me.”
And all the while the rest of us are thinking: “Tent? Where the heck did they get a tent from? We had no tent and we had nothing to start a fire with. Chill?? It was a storm!”

And so the feelings of bitterness and injustice are stirred as we are reminded of how the bends and curves of life have changed us. Everyone has tragedy and the impact of that is relative. However not everyone recovers in the same way and not everyone can start again on new terrain. Not everyone gets to feel the opposite to heartaches.

It’s all well and good that we hail challenges as life lessons that will help people to grow and become better. It’s not actually fair that those same people have to hustle alongside those who got to have the tent and a fire. Yet, that is the story of the human race.

I’d like to think that while we all travel together, there are those who share their tents and their warmth with others. If only for a little while. I’d also like to think that while we all like our stories to be acknowledged; we will also have the humility to know the difference between those that travel with a tent and those that have truly “roughed it”.

Looking back to this year, I tried to have those experiences that I thought would help me to grow and to stop asking how did I get here. I realised that I knew how I got here. What I was actually having trouble with was separating what about being here was what I truly liked and wanted, from what I thought I had to accept.

My career as an assistive technology advisor was something I was really good at but it did not make me happy. Atleast not the kind of happiness that I need. I thought about all the older people I knew, who worked the same job their whole lives and were content with retiring from that with the satisfaction of having provided well for their families.

I wondered what was wrong with me that I could not be like that…. Was I selfish? Was I ungrateful? Am I dreamer?

Maybe I’ve learnt that without the tent, I get to see the stars and without the warmth of a fire, I get to use the fire that is inside of me. I’ve learnt that the map I was given was useless anyway. I know the way to what makes me happy. It means climbing some mountains and wading through some rivers. It means picking berries and swimming in streams. It means having the courage to step off the path again and make my own path.

Credit: Michon van Staden

Here is what I hope you take from this:
*The act of believing in yourself speaks much louder than you will. But adding humility to that belief instead of pride booms even louder.

*No one can be as inspired by your life as you are. You alone know the personal costs. If you aren’t inspired to make your life what you want it to be, then you cannot expect anyone else to do that for you.

*When I become afraid of the future, I remind myself to look back and to see just how many of my worst fears I have already lived through and overcame.

Children are wonderful voices of encouragement. My son in his innocent way reminds me of all this when he merrily sings out at the top of his voice one of his favourite Elton John songs:

“Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind”

Go have a listen. While the video will put a smile on your face, the song is so catchy that I dare you not to make it your own sing along as you plan your next move:).

Photo credits:
Desirae Pillay: Wesley Lazarus
Man walking alone: Michon van Staden

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

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

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

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

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

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

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

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

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

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

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

The Medical Mom.

 

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

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

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

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

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

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

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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What is it that makes you jump up and greet the day? What keeps you from giving into the fears that yell out to stop? How do you keep yourself motivated?

I’ve stared down some dead ends and often when there was a choice to be made, it meant choosing between all tough alternatives.

Even now, everyday I face the greatest and toughest challenge of all. Myself.

I’m made up of too many things that tell me I should just accept mediocre. I should be satisfied with just being defined as a mother, or “the mother of the child with the disability”.

I should accept that all the mountains I’ve scaled have defined me and like the Lady Galadriel in the Lord of the Rings; “I should retreat to the North” and remain forever just as I am.

The thing is many of the mountains I’ve scaled were not of my choosing. So many times due to necessity and for the greater good of the people involved, I made decisions just based on getting through the moment.

Still I am mindful that on so many levels I have been blessed with having made a magnificent impact in my world. I am grateful for having had the ability to raise three respectful and amazing children and to be in a marriage that has only grown ever stronger over the years. Yet, I want something more, something defined only by myself and not by the mountains before me.

It’s like being the student who scores an A plus in Maths, then becomes a maths wizz with a high paying job, but actually wanted to own a patisserie and serve great desserts and coffee. No, I’m not a maths whizz and no, I’m not in a high paying job. But you get the analogy. I wanted to do what sets my soul on fire.

Here I am, a day away from turning forty years old and am exhilarated by the revelation that I can still pursue ME.

I know that sounds so strange but for twenty years or so I’ve been doing what most women are taught to do: to put yourself at the bottom of the list of people to care for. As wives and mothers it seems honourable to leave yourself out of your circle of care. Yet if you aren’t looking after yourself; you can’t really look after anyone else.

While I understood the concept of self care, I had no idea how to put myself at the top of the list.

I became a woman who stopped looking in the mirror because I didn’t want to see the girl who wanted more from life.

That girl in the mirror kept reminding me that I was smart, funny, maybe needed to shed a few kilograms but still looked okay. I was also thoughtful, passionate, hard working, powerful, kind, wise, determined, a dependable daughter and sister, and a really dedicated mum and a fantastic wife. She would not let me forget that God loved me.

That girl annoyed me. She scared me. She frustrated me. Yet in all these years she has never left me. Now, as I surrendered to the process of being a semi-finalist in the Tammy Taylor Mrs South Africa Women Empowerment Programme and also pursuing my love for writing as a Blogger, I finally understand her.

I am everything life has made me and I am also everything I dare to be. It was never about choosing between being all those roles that life called me to be. It was about accepting that I am those roles…. And more.

So I can answer my own questions that I began this post with.

I get myself out of bed every morning excited by all the possibilities still to come. I meet the day with the ache in my heart for all that I have yet to live through, but I rise knowing that God’s grace has brought me this far and will take me to where I need to be. The mornings bring me hope for another chance to be more than I thought I could be.

That girl from the mirror is no longer in there. She is where she should be: exploring what sets her soul on fire.

She is unafraid and unashamed. She is ME.

On the 7th April 2018, Michael and I celebrated our seventeenth wedding anniversary. Under different circumstances; we might have been the type of people who absolutely made a fuss about our most special day. But we are living in this life and when we got married the honeymoon literally ended when we returned home to the news that my parents marriage was ending.

A year later it felt awkward to celebrate our first anniversary as my mother moved out of her home and the reality of her being a divorcee dawned on her. Michael’s parents also thought that April was the best month to pay us a visit from their home in Kwa-Zulu Natal. My mother lived with me at the time. While it seems logical that I had three babysitters available for Savannah, she was not the reason we did not celebrate our anniversary.

While trying to get our minds around the fact that Savannah was a person with a disability; it was more complicated to navigate being newly weds while coping with our respective parents and their issues. I suppose in hindsight it wasn’t as big of a deal. Yet there are times I wish for a do over. I guess we all do at some point or other in our lives.

As the years flew by the toughest challenge in our marriage was being able to provide financially for a child with a disability. Therapists and doctors charge more than the medical insurers rates for their specialised services. Medical insurance companies have water tight clauses which leaves families with little room to manoeuvre when funds are exhausted. For many families like us funding the specialised therapies our children need usually results in our medical aid funds being exhausted by March of each year. It was difficult to work on a budget when our child needed therapy, special medical tests and special doctors. As parents we tried our best to provide for all Savannah’s needs as well as for Talisa and Eli too.

So celebrating anniversaries often didn’t make it to the top of the budget.

There were three years when we actually went away for the weekend. They were a good few years apart and were much appreciated. As we have grown older the celebration has become more about spending the day at home with the children and sharing a special lunch which my mother usually prepares.

This year Michael and I planned to go for a mid-afternoon late lunch to a nearby restaurant and that would have been the extent of our celebration. However on the Friday afternoon before our anniversary, we were told by our children that they planned a surprise for us for the next morning and we were to wait in our room until they came to us.

Promptly at 7:30 on Saturday morning our three children entered our bedroom with shouts of congratulations and gleeful singing. Then began what I can only describe as AMAZING.

Talisa and Eli explained to us that they wanted to do something for us that encapsulated what we had taught them. They said that they knew we made many sacrifices for our family and they wanted us to know they appreciated it. They practiced a line for Savannah to say: “Happy anniversary mum and dad. We love you”.

So began the morning. First Micheal’s left hand was tied to my right hand with a ribbon that had embroidered red hearts on it.

Then we were given our first clue. The clue was written on a square-shaped piece of paper that had the letter “O” printed on the flip side:

“The Roses are Yellow,

On this special day,

Where two hearts became one

Are captured in a frame”.

The clue led us to a framed picture of Michael and I on our wedding day that sits on my bedside table. Working together with our hands tied, Michael and I found our second clue hidden inside the frame. And so it went on, with us working out clue after clue.

Our children had written clues that took us to items or places in our house that meant something to us. Eli’s blue teddy bear that we bought when I was pregnant for him held a clue.

Savannah’s wheelchair held a clue that reminded us of her eighteenth birthday when she received her “Audi” aka her wheelchair with pink tyres.

Our bookcase held a clue and the clue that led us there paid homage to our favourite authors.

The funniest clue was the one on the bookcase. We had to sing aloud to one of Savannah’s childhood nursery rhymes. The clue told the true story of Savannah’s fish tank which was where the next clue was hidden:

One, Two, Three, Four Five

Once Vannah bought some fish alive

Six, Seven, Eight, Nine, Ten

Then somehow they died again

Why did they die so soon?

Because the water was not cool,

Can you guess what it is?

If you can then go to it.

All in all in there were seventeen clues to represent each year of our marriage. Each clue touched our hearts more deeply than the previous clue. When we had collected all the clues, our last task was to flip the clues over and put together the words it spelled. I get emotional just writing about it now.

Our children said when they think about us and as they come to understand what life is about; they realised that we have taught them that no matter what “Love Never Fails” 1Corinthians 13v8. That was what the seventeen clues spelt out: “Love Never Fails”.

Michael and I were simply amazed. They planned this for three days; working on the clues and putting it all together. They woke Savannah up that morning and helped her with her morning routines. I had no idea she was even awake when we were waiting in our bedroom because they were so quiet.

It was just the sweetest and heart warming morning all wrapped into one. On that note about sweet, all three children also prepared breakfast. They made home-made waffles with bacon and maple syrup:)

Could it have gotten better than that?

I think if you as parents take anything from this post, let it be that all our children are learning the most important lessons of life from us. As parents the sacrifices that we make will hurt us a bit. But to know that we are raising children who are kind, empathetic, generous and loving is worth the sacrifices. I would give up all the anniversary celebrations we did not do, again and again for this past Saturday.

Talisa and Eli aren’t deprived or less fulfilled because they have a sibling with special needs. They aren’t angry that life for them means we have to go at a slower pace. They understand the preciousness of the moments that make life worth living. They aren’t afraid to love and to live.

What more can we ask for? As parents and as soul mates, Michael and I can say our hearts are so full.

To our daughter Savannah.

Today the world celebrates Autism Awareness Day.
We don’t need a day to celebrate you. As an autistic person you have taught us so much about Love and Respect.

You have challenged our way of thinking and being. You have taught us to let go of what is unnecessary in life and fight like crazy for what is worth living for. Family!

As the world celebrates Autism Awareness, we celebrate our journey with you. We are bound to each others fate in a way only few other parents in this world are bound to their children. Sometimes that’s hard for me, and I know it is hard for you too.

We’ve come so far though, and we’ve survived being judged, lonely, sad, other people’s ignorance and so many of life’s set backs.

We are braver than we knew we could be. We are more resilient. Mostly we are kinder, more gentle and much more appreciative of life because of the journey that you are on.

I hope we make you proud because you make us proud to be your family everyday. Your dad and I love you more than all the sand in the ocean and all the stars in the sky. It hurts when we find that sometimes it is not enough to protect you and ourselves from the harshness of the world we live in.

So let us hope as the World turns its attention to Autism, they will make real changes that truly impact your life in a way that is meaningful to you.

Wherever we go to from here, please remember this:

I Do Not Cry For Who You Are

by (author unknown)

Tears have stopped falling
On the fragments of my dreams,
I no longer mourn illusions
Of yesterday’s reality.

Tears that fell so often,
Almost every day,
But that was when the rain poured down,
And the sky was always gray.

Now I feel the sunshine,
And the sky is blue again,
I’m living on a rainbow,
but I still cry now and then.

I do not cry for who you are
Nor what will never be
My pain’s in the confusion
And the vulnerability

My frustration’s with a society,
That cannot see you’re mine,
My anger’s to the ignorance,
That will never try.

My fear is from uncertainty
That increases over time.
My guilt is deep inside my soul,
Each time they make me cry.

I do not cry for who you are
Nor what can never be
I cry because they look at you
But never really see

They don’t see how the differences,
Could make the world complete,
They can’t all live on rainbows,
It’s just not meant to be.

You are not responsible,
For all that we’ve been through,
I would not change you for the world,
I would change the world for you.

All our love

Mum and dad x

By Desirae and Michael Pillay (non autistic parents to Savannah Pillay, an autistic young adult)

Today is Good Friday in South Africa. We have always loved celebrating this day.  Amidst singing songs of worship all day (we love music), we have celebrated this day with a special meal of a roast leg of lamb for lunch and all the trimmings.

Actually, since Savannah was seven years old I taught her to participate in preparing the lamb. There were so many reasons why this was an impossible feat for her. She had physical and sensory challenges. She had some language processing difficulties and her ability to concentrate was almost non-existent.

However, we found clever ways to help her to engage in this special family time. As a young mother I hoped that when my children became adults and when we would be enjoying family celebrations with their respective families; that Savannah would participate in the celebrations by preparing a meal. I wanted her to feel how important her contribution to the family was.

It was humble beginnings of simply teaching her to pour the marinade over the leg of lamb to about ten years later when she was able to plan the entire meal. She would mix the marinade, prepare the leg of lamb and with some assistance from myself or my mum; she even served the meal. Savannah loved planning this meal. She felt so proud that she could serve her family and that we appreciated her efforts so much.

Being raised as an Indian woman, my family placed a high value on our ability as women to prepare meals. It is important to be the “hostess with the most-ess”. Literally. We value celebrations marked by the beautiful presentation of large meals. So, while I don’t live my life based on my culture; I did feel a sense of pride that my physically disabled daughter who is also autistic could prepare a special dish for a special family celebration.

This year though Savannah has not been bothered with planning the meal. She has not been interested in doing much. She is going through a difficult time for many reasons. It is not my place to share the details of that publicly.

What I can share is that as I watch her grapple with her reality, it is easy for me to feel angry and sad. We worked hard as a family to give Savannah a hopeful, bright future. We wanted her to always feel happy and joyful. We wanted her to know that she is big part of the world and that she has a reason to wake up everyday and live her best life.

As I ponder the complex threads of my emotions, I realise I am not sad or angry. I awakened to the understanding that the human experience isn’t about success and failures. It is a rather magnificent testimony of being a witness to each other’s lives. And when that “other” is your own child, then it is only you who can be brave enough and strong enough to witness everything that our children must endure.

I reminisce today of all the Easters before when Savannah’s excitement filled the household as she prepared the Good Friday Leg of Lamb lunch; and I am thankful.

I am thankful for the many Easter celebrations that was everything I wanted it to be. I am reminded of how strong we all are and how much we have lived through. I am grateful that Savannah too knows her own strength and power.  I am hopeful that she will find her way again because of that. I am humbled as I surrender to the understanding that life is full of surprises. Some good and some bad. My courage is renewed as I remember the grace that has been given to us which has brought us this far.

Today as we celebrate Good Friday, my hope is in the story of the crucifixion of Christ. It was not an end, but a beginning of a new life. It is my thread of hope that one day Savannah will know what it feels like to be Peaceful and Joyful without needing to prove anything to anyone. She will never have to suffer the weight of living in a world that sets itself against her.  And I will never have to feel helpless and frustrated at my own limitations as a parent.

That is the why in spite of everything, I am celebrating the gift that Good Friday gives to me. Faith, Hope and Love.

 

 

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