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A Million Beautiful Pieces

Self-Talk, Apologies and Presuming Competence – World Cerebral Palsy Day

October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn. 

Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal. 

She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.” 

Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:

  • No one is allowed to hit her, 
  • No one is allowed to be rude to her (with details), 
  • No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly 
  • No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge. 

Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed. 

If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them? 

This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations. 

I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it. 

Also here is my truth –

I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!

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Disability Advocacy

The Pen Is Mightier Than the Sword, but Kindness transcends them both

I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece.

As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability; it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is Grace that keeps filling my life with Faith, Hope and Love.

Then there are those who are embarrassed that now they know what they would rather not know, and try to make me feel bad for writing it. I can’t help you besides suggesting that you stop reading my work.

I am almost forty-four years old. Of that time I’ve been a mother for twenty-five years to a child with a disability, and two more children while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.

That’s twenty-five years of facing social systems where it has been inconvenient to include our daughter with a disability. Twenty-five years of reading cues in social gatherings of whether we are wanted or not. Or how long before they push us aside when they realise that Savannah is a 24/7/365 commitment for us?

Twenty-five years of giving people the benefit of the doubt, only to have Savannah made fun of dismissed by those who were entrusted to care for her. Twenty-five years of having to deal with mothers who let me know how grateful they are that their children aren’t like Savannah. There’s that pat to Savannah’s head and pronouncement that ‘They are such a blessing.’ I keep thinking to reply ‘I hope God blesses you as much as He has blessed me.’ But my fear of extending the unwanted encounter holds me back.

Twenty-five years of still having days when I go to bed weeping, frustrated or lying awake at night wondering what will happen when Michael and I are no longer here.

So why do I keep writing about the hard stuff?

Simply because I am still inspired by my children to leave behind encouragement and evidence for them to know how hard we tried. I write so that my children will know I tried to change hearts and minds, and that being kind is still worth it. In my first edition of this post, I wrote that gaining acceptance within society was the reason I wrote. Now, in the aftermath of the Esidimeni tragedy, and the continued lack of services and support our community faces, I also write to remind other families that we are not alone.

While we bear up against it all, we can be united and be a source of comfort, hope and information.

Like the way, my children comfort each other when they are made uncomfortable because their sister is different. It’s a sad day or a glorious one (whichever way you choose to look at it) when your children can explain the love of God in spite of the callousness of other people.

Sometimes callousness takes the form of being given unsolicited advice. Other times it’s to point out to us, in Savannah’s presence, that God can do amazing things and He will make Savannah whole. I cry every time we hear that because of the severe lack of insight that statement contains. The testimony of God’s sufficiency to my family does not need to be proven by Savannah being made into anything other. His sufficiency is proven in our diligent commitment to her care and well being, even on days when we are overwrought by her complex and beautiful mind, and that we do it again and again. His sufficiency is when Savannah comforts us, and when she laughs and loves freely and without restraint. That’s a testimony of faith and sufficiency.

After twenty-five years of this, I’ve learnt that many people need Savannah to be fit into their limited understanding of God’s goodness for THEIR faith to be affirmed. It feels like they see Savannah as broken and someone who should be “fixed” to match their idea of a whole person so that they can feel affirmed that God is good.

From left to right: Talisa, Eli and Savannah

But in our home, we know a secret. Savannah is a remarkable beauty; fearfully and wonderfully made like her siblings. While the world is designed to forsake us, judge us, dismiss us, persecute us, and remind us how we can’t fit in with their carefully organised systems; we know a God who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Kindness. A God to whom my children speak to like this:

‘Thank you, God, for the patience you give us. Now please can you give the same to the parents who are racing in school traffic when we are all going to the same place at the same time.’

Or‘Lord, thank you for Savannah. I realised today that she does an amazing thing. She can still choose people who won’t choose her’.

Or Savannah’s prayer, ‘Lord, Thank you my life. Please help lady with walker at church. I feel sorry for her. My dad is sick. I am stressed about him. Look after my sister, my brother. Help my mum. Amen.’

Savannah and I

When ignorance pierces my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different:

I DO NOT CRY FOR WHO YOU ARE(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 grey.

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.

Father, forgive them for they do not know what they do. Luke 23:34

With all the Love that I’ve found in the Million Beautiful Pieces that make my story, Desirae

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A Million Beautiful Pieces

Parenting: Is it unfair to other siblings, when one child has a disability?

This is my first blog post in three months. Time is a monster in my life but today, I had to write this, as short or long as it may turn out to be. In a time when parenting has become a central focus for many families, it is appalling to me that many people hold to a belief that in families where a child has a disability, it will always be unfair to the siblings of that child.

A family holiday

Now before I offer some insight into why this blanket opinion is appalling; let me acknowledge that there are families where siblings of a child with a disability have complex emotional needs. Their parents may not be as available to them as they might be to the child with a disability. Consider the myriad of demands on parents in typical parenting units. Can you only imagine what the demands are for parents who parent children with different needs? If you can’t imagine it, then let me offer this first piece of advice here – please do not make any comments or assumptions about what happens in families where disability is part of the dynamic. Zoe Gow’s shares her insight about this – Siblings and special needs: the life of the other child.

I can stand on my soap box here and rant about how if you are not raising a child with a disability, you cannot know how hard this is. You do not know what never-ending exhaustion is nor the mental and emotional stamina we must have everyday to be consistent in therapies and medications while also often trying to keep up with a mind that dances to a tune to which the lyrics and harmony are unfamiliar to the parents. And just when we think we have figured it out, the tune changes again.

Michael pulling Savannah up some stairs so we can browse a bookstore together.

From my soap box, I can also add to my rant that you cannot fathom, the love that keeps us doing this again and again, everyday.

But I won’t stand on my soap box to wax lyrical about that. Instead, I want to offer a different perspective from my own true story:

I am a survivor of childhood and teenage trauma, sexual abuse and domestic violence. I was a mother at eighteen years old to Savannah who is autistic and has cerebral palsy, and other stuff (her description of herself). I was made to feel ashamed by my family and my community because I had fallen pregnant out-of-wedlock, and also that my daughter had a disability.

Savannah taking a short stroll with me .

When I finally got my happily ever after, my parents decided to end their marriage as the sun dawned on mine. While I tried with all my might to bask in the glory of my husband and the fact that Savannah had a dad, the embers of my parents dying marriage caught at my soul and burned me. At the same time I was trying to recover from the loud ringing in my ears that announced that Savannah was “severely disabled” and had no hope of a future. I’m guessing you are piecing together by now that I must have had a couple serious emotional problems. I did but the demands placed on me meant that there was no space to acknowledge my own emotions about both events.

Still I wanted to have another baby. Yes. I selfishly wanted to know what it would feel like to have a child who was more like what I thought a child should be. But people would not let Michael and I have that. When we were pregnant for Talisa, we were told that it was unfair to bring a child into the world who would be burdened with Savannah someday. I was told to limit the time the new baby spent with Savannah because she would pick up Savannah’s “bad habits”.

Later when we had Eli, we were told thank goodness we had him, atleast Talisa will not be alone. (Huh,she wasn’t. She had Savannah.) We were asked how would we manage financially and if we thought about how much Talisa and Eli will be deprived off because Savannah will deplete us.

And while I would not describe our financial situation that way, it wasn’t untrue. But it stung that all people saw was a thing who was here to destroy our lives. They did not see a person who deserved dignity, a good quality of life and who had dreams and hopes for herself. Just because her physical form and her mind had some variants to the rest of us, they wrote her off as no one and nothing. As if no good could come from her. An inconvenience.

Eli asleep on Savannah’s lap while travelling to our holiday destination.

Now all these many years later, Talisa and Eli have actually been “burdened” to care for Savannah, within their capacity. And shocker alert…there are days when Savannah is burdened by the bustle of two neuro-typical siblings. Their unstructured routines mess with hers and they encourage her to do crazy things like play cricket and then horror of horrors they want her to go out and mingle with people. They share insane plans with her about when Talisa has her drivers licence and how they will all three go out partying till late at night.

Oh and yes, those people were right. Our finances have been depleted because caring for someone with a disability in this country is not considered a human right but rather a fantastic opportunity to make money off desperate families who want to ensure their person with a disability is not deprived of care, medical attention and necessary supports. So we can’t give Talisa and Eli everything their hearts desire. However, often what their hearts desire is not what is necessary for a happy childhood. I sleep easy when I remind myself of that.

But maybe all those people were right. This life has been unfair to Talisa and Eli.

Savannah, Talisa and Eli on a recent visit to a Basothu Village.

Then I ask, what of the unfairness to the girl who was molested, watched domestic violence and adultery rip her family apart before she was thirteen, who was responsible for her parents marriage both in its existence and it demise, who was a cutter and a suicidal teenager and who understood guilt, rage and shame as normal. Why had no one told her parents that it was unfair to raise children that way?

Quite simply because somewhere we have lost our way and have aligned good parenting to a standard of living that is defined by where we live, what we drive, where our children go to school, what brands we wear, what technologies we own and what level of entertainment we can afford. Good parenting is none of that. It is very simply having a relationship with your children where you see each other, honestly and openly. The CNN reporter Anderson Cooper said of his mother Gloria Vanderbilt after her passing “I knew her and she knew me. And there is great comfort in that”.

Now I am no expert, but if my heart is my guide I’m going to go out on a limb here and say Michael and I have done something right in how we fostered our children’s relationships with each other. Their lives speak these truths:

  • While I talk about Talisa studying away from home after her school career ends and if that is right for her; she is in no big hurry to leave home. People who have had this discussion with her are always touched by her contentment and that her personal plans do not include fleeing from her sister and us.
  • Both Eli and Talisa’s plans include having a family. They talk about marriage and children so matter-of-factly and with such pride, that I’m the one who is stunned wondering what is wrong with these children.
  • They frequently joke with each other and with Savannah about where Sunday lunch will be held when they are adults, and which of them will take Savannah shopping to get the salad ingredients. They fully expect her to contribute to the lunch by making a salad. You know if she doesn’t, it would be unfair (snigger).
  • This morning I overheard Eli telling Talisa, that he was up playing on his PS4 till late last night and he heard Savannah call. He said “I was glad to have heard her before dad, because atleast I got to her before he awoke. She just needed help to turn over.” When I approached him about it, he said: “Mum, stop making it weird. She is my sister. And I’m not emotionally scarred from helping her.”

So maybe Talisa and Eli have grown up too fast. Maybe they have more responsibility than they should. In light of what many children are allowed access to on television, the internet and in their gaming, as well as that many children are still living with domestic violence, narcissism and so much worse; I’m going to say that developing selflessness, compassion, kindness, empathy, loyalty and sibling love that no one will ever understand, is not the worst thing that can happen to my children. And no I don’t think it’s unfair to them at all.

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A Million Beautiful Pieces

I Am Every Woman

A couple of weeks ago, I shared with you that I was one of the speakers at a workshop “Investment In Self”. The event was hosted by Nadia Marillier of Tranquil and Tenacious Minds.

I prepared this piece titled “I Am Every Woman” in forty-five minutes on the morning of the event. Though I had been mulling over it in my mind for about a month, the inspiration of how to write it, only came to me ten hours before I was scheduled to speak.

I am proud of this piece. It is a condensed version of my life story and the events that shaped me told with honesty. I read somewhere that “When you can tell your story without crying, then you know you have healed”.

Here is a written excerpt: “I am the woman who despite the odds, managed to not just survive my life. I managed to thrive in it. I understand today that the star-dust that my life was sprinkled with when I was born, did not turn into ash after a raging fire. Oh no, no, that would not be right. That star-dust was only the embers of the fire that was being kindled within me.”

As many of you know I work from home while being a caregiver to my adult daughter who is a person with special needs. I am not a professional at using a camera or adjusting sound so I hope you will be forgiving of  this when you watch the video. I have a new camera that was gifted to me and I am still learning how to use that so hopefully I will produce better quality videos in the future.

I am however a lover of words and I believe God has gifted me to share the “hard stuff” to touch someone else’s life and in my small way to change the world to be a little kinder and forgiving of each other. So I feel I can’t wait to make perfect videos before I share some of my material with you. As I mentioned I make a living from speaking and writing. By sharing this video you increase my opportunities to work and to take care of my family. For that I will be very appreciative.

If you would like me to hear about specific topics please let me know in the comments. For now, here is “I Am Every Woman”.

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A Million Beautiful Pieces

Should siblings be responsible for each other? And if so, is that okay?

Savannah loves this photo of her with her siblings.

When parenting a child with a disability many people offer advice or opinions from their perspective of what would be best for a family like ours. People are not shy to give voice to the potential problems which they believe we face. Specifically, people assume that when non disabled siblings are raised with a sibling with a disability, it will cause some level of hardship in some way to the non disabled sibling. The idea that non disabled siblings will be responsible for their disabled sibling, is frowned upon. This blog post, like most posts that I write, is about giving insight into our lives in the hope of giving other families the vocabulary to speak their truth.

When Michael and I became pregnant with our second child Talisa, we had no fears about anything concerning the new baby. It might have been due to my new-found faith or it might have been that I was still in the honeymoon phase of my marriage. When Talisa was born unlike her elder sister, she was not a person with a disability. She was a demanding baby though and tested my resolve in many ways. But I was happy to have two children. We were very hopeful about the future for our family.

Sadly few people shared our delight. Some people thought that they should educate me about all the problems Talisa was going to experience because of her relation to Savannah. One person thought that Talisa would likely have poor speech because Savannah had a speech impediment. Another piece of unsolicited advice was that it was very unfair to Talisa to be born into a family with a person with a disability as she would be “burdened” with her sister. Someone else suggested that I should limit the time that the girls spent together. The list goes on.

Eli shares Savannah’s passion for gorillas. She was in awe of the wind-up gorilla toy he gave her for Christmas.

In hindsight I think most people were expressing their own fears about parenting a child with a disability. Of course, it was challenging. Especially in the early days when in many areas of development, Savannah and Talisa were on the same level. Even though there was a six-year age gap between them. While adjusting to mothering two girls with different demands, I was also trying to learn all about Savannah’s diagnosis. Savannah was a diagnosed with cerebral palsy. She was non speaking and had other issues that I could not quite understand. She was only diagnosed as being an autistic person when she eight years old. I can only describe the first three years of Talisa’s life as the ‘twilight years’.

By the time Eli came along we were a little more settled as a family unit. Both girls were besotted with him. Together all three formed their own unique relationship. I know many of my friends who have a child with a disability and non disabled children, often testify that having more than one child is the best thing they did. For those parents who choose to only parent their child with a disability, I understand that too. Raising children today is demanding in many ways, and at different times I struggled with the demands of being a parent. More so I struggled with the enormity of Savannah’s special needs. Please do not ask me if it is better to have more children or not after having a child with a disability. There is no better or worse when it comes to children. It is just about working out how to be the best for yourself and for your child or children.

Talisa reminds me that some things are not deep psychological issues. Some things are just what siblings do.

So fast forward to the present day, when Savannah is twenty-two years old, Talisa is sixteen years old and Eli is eleven years old. Talisa and Eli have some responsibility for Savannah.  I was aware when both children began assuming certain areas of care for her. While those old voices sometimes echoed in my mind that my younger children shouldn’t be responsible for their sister, my children kept me in check.

My first check was a few years ago when Talisa spoke at an awareness event. She said that she does not often tell people she has a sister who is a person with a disability because she does not want to hear “Oh shame.” She continued to explain that when she meets the non disabled siblings of friends, she never responds with “Oh, shame”. She is a cheeky girl. Her point simply being that Savannah is just her sister like all other sibling relationships. While their relationship has different nuances to most siblings, she does not appreciate that “Oh, shame” is the response it should elicit.

A few more checks came as Eli grew. Being a boy, he easily slips into the role of protector. He enjoys teaching Savannah pranks and jokes. He helps her with: tying her shoelaces to assisting her with her communication software to exercising with her. When Michael is late in returning home, Eli helps Savannah with her bed time routine. (She does not stay asleep whenever I help her to bed, and somehow sleeps better when Michael or Eli put her to bed). I had to stop thanking him for what he does when he asked me to “stop making their sibling stuff awkward with my mum stuff”.

In homes like ours, where one person is vulnerable and will remain so for the rest of their lives, the levels of care and protection that develop between the family members are unique and precious. Few people outside this type of dynamic will understand it. We are always thinking about what might be too much for the non disabled siblings as far as being responsible goes, against what is vital to building strong sibling bonds. For many families siblings are more trustworthy than a professional care giver or another adult. In truth, one day they will be the only people who will oversee the care of their sibling with a disability.

This week as Savannah began her new therapy program, we created a group on WhatsApp for the team so that we can easily transfer information between home and therapy. Both Talisa and Eli are included in that group. As her siblings they share all her milestone moments with her as well as her day-to-day life. It is offensive to them when they are excluded from important areas of Savannah’s life. Talisa asked me once why people make a big deal about her role in Savannah’s future? She said that most siblings have some level of care and loyalty towards each other. How can anyone expect her to be detached from Savannah’s life when they both become adults?

Little brother is watching. Eli keeps a watch on  Savannah’s YouTube browsing.

In raising our children, we did not heed the advice of anyone who thought that Savannah would be a burden to her siblings. We simply raised children in a home with a family that loved each other. Like all children, Talisa and Eli go through all the usual issues and triumphs of life as they grow. They have their own challenges, their own dreams and their own goals. Unlike other children they learnt a little something about tolerance and patience early in life.  I think the best lesson they learnt is about accepting people for who they are. They are not angels or better than other children. They are simply siblings who get to understand loyalty and love much quicker than most.

For all parents of children with disabilities, we live with a constant fearful thought that we try to ignore. What will happen to our vulnerable children when we die?  When we have more than one child, none of our children will be alone in the world. Especially our child with a disability.

Each family is different and every sibling deserves a life that is true to who they are. As parents we are responsible for building that life. Please think about that when you meet a family raising both disabled and non disabled children.

If you found this post helpful, you might also enjoy reading about Being Courageous Even In Uncertainty.

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Empowerment

Christmas Blues Creeping Up On You? I Hope You Know You Can Live a Good Life

My family and I are slightly obsessed with Christmas. We usually can’t wait to set up our tree which is a celebration that is infused with a few of our own traditions. The most important being that we have a special dinner afterwards to kick off the countdown to Christmas Day. But before we tuck into a sumptuous meal (which I never spend more than an hour making, because simple, easy dishes are fundamental to my sanity); we complete a few other traditions. One segment being the specific part that each of our children play in ushering in the Christmas season when we decorate the tree.

Eli places the star at the top of the tree, which has always been the job of the youngest child.

When we only had the girls, it was then Talisa’s job to crown the tree with the star. Now she has the job of switching on the tree lights.

 

The Christmas baubles with photographs that are on the tree were made by my sister-in-law as a gift to us in 2015.

Savannah being the eldest gets to place the wreath on the front gate with help from Michael. Each person places their own Christmas ornament on the tree and we capture the moment in a photo to mark the occasion. I keep photographs of this moment for each child for almost all their lives.

We have ornaments for extended family too and they get to decorate our tree with it when they visit us. Then we have ornaments from friends and family who live far away and we think of them as we find a bare branch for their ornament.

As I watch my children taking more of a lead in decorating the tree and I listen to their banter about continuing these traditions in their own homes one day, I’m struck by the contrast in what makes up their childhood memories and in what makes up my childhood memories. This time of year can be a wonderful experience for many children when their families look forward to coming together to recreate moments from an ocean of memories filled with traditions, warmth and love.

The festivities were of no interest to our black labrador Blue.

For adults with traumatic childhoods, this time of year can be a sad reminder of what we missed out on as children. The magic of Christmas are only drops in our ocean of memories. I remember so many Christmases as a child feeling an ache inside of me as I ‘made-believe’ that I was happy. I wrote about this earlier this year in the post The Past And the Present Met and in a post last year You Cannot Be Depressed Then There Was Me

I remembered so badly wanting the make-belief to be real. With that childhood as my backdrop, I became a parent to a child with a disability at eighteen years old. I had to parent within a family and a social circle with loose morals and a tight grasp on maintaining the look of success at all costs.

For many Christmases as a parent I wrestled with depression and suicide. Not having developed skills to recognise and to deal with trauma, meant that I felt more overwhelmed at this time of year as my life became defined by my daughter’s special needs.  It was a very long process to becoming mentally and emotionally strong.

What kept me from completely going over the edge was the determination to raise my children in a life that was without fear, without self-doubt, without question of my love for them, without insecurity and without violence.  I wanted my children to know what it felt like to look forward to weekends and school holidays and to enjoy being with their parents in peace. I wanted them to have the freedom to express themselves freely and honestly without restraint or fear of disappointing anyone.

I wanted them to want to live each day to its fullest.

I wanted to ‘want to live’.

I wish someone told me that it was okay to be depressed and that I could still live a good life. Now I’m telling you. You can still live a good life.

I wanted to get better from having lived with sadness for so long. It felt like it was in my bones. It was so much a part of me that it took a long time for me to recognize it. But eventually I did. I did whatever it took to get better. For me it meant learning to believe that my life had value. I found that value in understanding who I was as a child of God. I am so eternally grateful for that simple truth and all that it has given me.

Becoming more of who I was meant to be was a process of understanding my faith and understanding myself. I could not always get professional help and it was incredibly tough to have to deal with my demons very much on my own at times. There were relationships that I could lean on at different points, in big ways and in small ways. There were also very dark days when no one understood what I was going through. I wish I had known about the South African Depression and Anxiety Groups website which would have been incredibly helpful in finding resources.

Someone told me they felt I write to ‘poke the world’. I guess that is one way to look at it. Though I have never intended to do that. I simply write because I’m grateful. To have lived with depression and to have overcome suicidal feelings while being responsible for what seemed like everything and everyone, is a story worth telling. It is worth telling from all its perspectives and all its shades.

It is especially worth telling at Christmas time, when I am snuggled in my home with my Christmas tree twinkling away and the memory of all my loved ones beaming with delight keeping me company. December is a time when many people from all different walks of life are more likely to be depressed and suicidal. If this season makes you hurt like hell and you can’t find something good to hold onto then please remember this:

The past is made up of memories. You are a seed of hope. Starting today you can make new and beautiful memories.

You are as capable as anyone of having a good life. Believe Me.

We love our Christmas ornaments. Each tell a story of a life of abundant love.

For helpful and practical advice about how to deal with the Christmas Blues, you will find this article Understanding and Coping With The Christmas Blues by @DarleneLancer worth a read: 
I particularly like the helpful online videos from the South African Depression and Anxiety Group.
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Parent Support

Parenting: Here’s Why It Took A While For Me To Post That My Son Was Named “Player of the Year”

I took a while to write this post. In fact four days before my fingers actually hit the keyboard because I wanted to think about this a little more.

My son, Eli, was nominated by his football club team mates as Player Of The Year. Oh man, I was so thrilled for him. I couldn’t be at the awards and when Michael told me about it, his voice was filled with excitement. It was a deeply meaningful acknowledgement for both Eli and Michael because they have worked very hard for four years to develop Eli to play at this level.

Goalkeeper
Eli at a district tournament

I did not immediately share this news on social media. Last week I was astounded by the excitement that was generated when I shared a post about Eli’s achievement on the Kumon programme.

It was lovely to see that Eli’s achievement in Kumon was so encouraging to so many people but it also made me step back and re-evaluate why the response was so good and what does it mean to me and to my audience. The thing about the internet is that it’s not just about me and what I am sharing. It’s also about my audience and how this information impacts them.

As Savannah’s mother, I understand a little something about being “unable to achieve”. I also know that her unusual achievements have little appreciation in the wider social context. When she began her schooling career at age three, my social group had no idea about how hard we worked with Savannah to achieve simple skills such as holding her own bottle. It took her over seven years to learn how to throw a ball. She still cannot catch a ball unless it is thrown from very close to her and then only if she is alerted that a ball will be thrown to her.

I knew what it felt like to have a child whose report card read “not achieved”.

Over the years, as a parent and professional in the disability sector, I’ve learnt so much about the hard work and effort that so many children and their families put in to achieve their goals. Therefore today as a writer and speaker it is important to me to be responsible in sharing good and not so good stories. It begins with asking myself “why” am I sharing a piece of news and “what” do I want to achieve.

The only reason I share anything is to be a testament to Faith, Hope and Love. Eli achieving anything is not just that he has some gifts, but also that he works really hard in other areas of our lives too. As a family with a person with special needs, and who have minimal help, there are a fair amount of chores that the children have to assist with.

Amongst Eli’s responsibilities are clearing the garden of the dogs’ mess, feeding the dogs every evening while Talisa feeds them every morning, taking the laundry off the clothes line, taking the garbage out, making a fire (when necessary) and cleaning the fireplace, helping in the kitchen either with food prep or cleaning up, cleaning his own room and helping to set and clean the table around mealtimes.

Aside of this, Eli is a sibling to Savannah who sometimes needs assistance in different ways such as sorting out her computers or phone when there is a technical issue. Eli or Michael help her with this. When we attend parties or shows, Savannah also likes to have any recorded media on her devices so someone has to transfer it to her devices. Eli or Talisa usually take on this task.

Savannah needs to stretch by playing ball and she needs someone to take her outside and to throw the ball at a pace that is suitable for her. Eli, our resident sportsman becomes Savannah’s coach and works out with her.

Or when she wants to go for a walk, and I’m the available adult to take her but I actually don’t want to have to talk or listen anymore that day, Eli usually offers to accompany us, and keeps Savannah engaged with his happy banter.

Taking Savannah for a walk

Michael usually helps Savannah to bed, gives her medicines and prays with her. She sleeps much better when he does the bed time routine. But when he is not home, the only person who fills those shoes for Savannah is Eli. What it feels like listening to him go through Savannah’s routine is hard for me to describe. As a mother it just grips my heart and makes me feel like I am glowing from inside. What it does for Eli and for Savannah as siblings, is something one can only understand when you view life from this side of the field.

We know so well that life is full of surprises and challenges. We do not know what hurdles are still to come as Eli goes from boy to man. For now in this season, he has marked his life with these achievements and so I share his news. At eleven years old, while still developing and learning like any other boy of his age, he is also responsible in ways that many children aren’t expected to be or don’t have to be.

That is a testament to having learnt at a young age, that faith can move mountains, that hope is a lifeline and that when you love, you gain more than you give.

That brings me to “what” I want to achieve when I share posts about achievements. I want to encourage you that children can achieve so much more than we think is possible; provided that they are operating within their own abilities and their passions. I know how important it is for children to have the space to work for a dream, and then to have the space to bask in it’s glow when their dream becomes reality.

So for me, I share these moments of our lives not only to encourage a wider audience, but to also encourage my children. The internet is one giant diary, keeping an online record of our lives. Long after I’m gone these posts will be the relics my children and their children will sift through to learn about their past.

For Eli and Talisa, I want my writing to be a reminder to them of the amazing and wonderful ways God was with them and with their sister. As siblings to someone who will need care for her whole life, I hope that Talisa and Eli will find encouragement and strength when they grapple with issues unique to them. I hope that as they reflect on these posts they will remember what hurdles our family were jumping and why their achievements for its time were remarkable.

My own dream as a parent is inspired by the beautiful game:
  • I hope like that like a striker, I will keep my eye on the ball ever ready to take the tackles, and make the strike to benefit our family.
  • I hope like a great defender, I will know when to move forward and when to move back; never undermining my children’s abilities in the game of life.
  • I hope, like a goalkeeper during a penalty shootout, I will have broad enough shoulders to keep my chin up to return to the box time and time again to make a stand for my team.

Eli for Easterns Local Football Association under 10 Goalkeeper 2018

 

  • Most of all I hope I remember that just like a football coach knows that the game must challenge and test his players in order for them to be better, life will do the same to my children.

They must enter their own Theatre of Dreams to face the ball, to make their move and to learn to accept consequence thereof, for glory or defeat.

My greater hope is that when my children face their challenges: it will always change them for the better.

"We strive for perfection and if we fail, we might just have to settle for excellence." -Sir Matt Busby

 

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SA Mommy Blogger Awards 2017

SA MOMMY Blogger Awards: Best Wisdom Giver was Baby Guide for the Modern Mother

As you already know my children have long been weaned, potty trained and can pretty much entertain themselves independently. Well, two out of three of my children are for the most part, independent. Savannah still needs mama in different ways.

I surprised myself by how much I enjoyed reading Letitia Venter’s blogs which crowned her Best Wisdom Giver for the SA Mommy Blogger Awards 2017 which is this weeks feature on my blog. New moms in my social circle often seek me out for advice and in future it will be nice to point them to Letitia’s blog.

Her first winning blog “Dear New Mom, A Summary of a What You Should Know” is an easy read with practical advice that any new, sleep-deprived, panic-stricken, breast feeding or bottle feeding mum will find very useful. Letitia is also a trained Lactation Consultant who does volunteer work in her community.

Letitia’s second winning blog had me saying “Amen” and “Hallelujah” every couple seconds. It is “Physical and Mental Delays Caused by Baby Walkers and Jumpers” https://babyguideforthemodernmother.com/delays-caused-by-baby-walkers-and-jumpers.html. I have been against the use of walkers and jumpers for babies because I learnt early in my motherhood journey, the negative impact these baby mobility products have on a child’s development. This post helps new parents to think through the reasons why they should not use these type of baby products.

Letitia shares her research and wisdom with an amazing amount of respect and knowledge. I think this is a must follow blog for all new parents.

Letitia’s blog, “Baby Guide for the Modern Mother” is a great link to share at Baby Showers. Letitia, I wish you all the very best as you parent your little one and support your community of new mothers too.

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Parent Support

Parenting: The Best Advice From a Dad to His Famous Daughter

A few days ago I posted a quote about parents empowering their children.

It’s a tricky business being a parent. The intense roller coaster of emotions that we experience while knowing we are fully responsible for another human is safely the hardest journey to be on. It is also definitely the deepest, most beautiful bond we can ever experience.

And this entanglement of emotions can sometimes cause parents to be down right “crazy”. We have to know how much responsibility to give our children and when they are ready for different levels of responsibility. We have to teach them to be strong, brave, independent and maintain their sense of curiosity, while we are supposed to also protect them. Once you become a parent, the whole independence thing just seems way too overrated. I mean, it’s completely plausible that a child can be dependent on their parents for a while? Maybe until they are twenty-five or maybe even thirty?

There I go doing the crazy parent ramble. The one that makes children want to panic.

But have no fear my friends. I’ve never been the parent who wants to hold my children to me forever. I’ve always maintained that I am raising them to leave because I know that they will be fully capable of eventually building their own lives. Michael and I are fully committed to our vision that our children will be their own heroes. Even for Savannah,who is likely to never leave home, there are still some areas of independence that Michael and I expect from her.

Therefore it was a great delight to me when my mother and Talisa showed me the video (link below) of the speech Deepika Padukone gave when she received the FilmFare award for Best Actress two years ago.

Deepika Padukone is the darling of the Bollywood Film industry and has the world at her fingertips. She read a letter that her father Prakash Padukone, a Badminton legend for India wrote to her sister and her. It’s a wonderful example of how to give our children wings while keeping their hearts humble.

Enjoy watching this touching video of a parent child bond that is filled with love, trust and faith. Then let me know in the comments what your best advice is to your young adult children.

https://youtu.be/TuZRUMpnTkA

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A Million Beautiful Pieces

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.

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