disability Archives | A Million Beautiful Pieces

A Million Beautiful Pieces September 12, 2022

Work, Caregiving and Me – A look inside

My husband Michael returned to the hospital this morning for another “small” procedure (he has long covid complications). I wish that I was not a frequent-hospital-patient’s-plus-one. Yet, when all is said and done, I’d rather it be me standing next to the bedside of my family, than anyone else. This procedure was meant to only be a day procedure. However, from experience, it was best to err on the side of caution, therefore Michael is staying overnight.

This time of year, from spring until January next year, is what I refer to as our Maverick. Maverick is the giant wave professional surfers chase off Pillar Point Harbour, Northern California. It is known to be one of the most dangerous and treacherous waves, and those who ride the Maverick are hailed as Titans. For me, this season from now until January is my race to be a Titan! This is a look inside what being a caregiver is like for me.

Why is this season more challenging?

Savannah is more anxious during this time. She experiences the change of the season into Spring in ways which makes her physically uncomfortable. To cope, Savannah self-injures. She has improved so much in this, but it is still a coping strategy that she defaults to. Savannah is not even aware that she hurts herself. It is not severe and nothing that Dettol and keeping the skin clean won’t heal, as well as strategies to redirect her and to increase her awareness of what she is doing. Still, just seeing her abrasions, and feeling like I am not doing enough, takes something out of me that is mentally and emotionally exhausting.

Three years ago, an occupational therapist worked with Savannah towards her overall wellness. We have maintained and seen an increase in her wellness since then. Savannah never slept through the night before that, and her longest length of sleeplessness was about three weeks straight. Since her time with the occupational therapist, Savannah only wakes up some nights. That is a huge blessing. However, during this Maverick season, she tends to call out more often while asleep.

Then there are the celebrations like Diwali, Guy Fawkes, and New Year’s Eve when sometimes there are fireworks. In the last few years, Savannah copes much better on these actual days but in the weeks and months prior, she is fixated on what sounds will be heard. She talks about it relentlessly.

Added to this year’s Maverick season, is the uncertainty with Michael’s health and the challenges we’ve had with our car. Savannah takes both issues very personally. She is looking forward to some events over the next weeks and months with friends and family but now that her brain is in anxiety mode mixed with excitement, she needs much more support to cope.

Roll back to this present moment, and Michael’s procedure.

Savannah is very sweet and wants to be near him to pray for him. When she hears Michael having an asthma-related issue, her anxiety deepens. Hence, this was partly the reason for him to stay in the hospital overnight to fully recover and maybe lessen Savannah’s worries.

This is our reality. It doesn’t phase me as much as it is exhausting for me. Still, I cope. I learnt to breathe deeply and get the next task or job done while redirecting Savannah or talking her through it. When I watch surfers barrel a Maverick, I feel like that is an analogy that resonates with how I feel. Like a surfer in a tube of a wave, trying with all her strength to keep her balance to ride out the Maverick without falling.

I also know that no one is coming to save me from this. People will help. They will offer advice, a meal, a shoulder but every morning it remains up to me to get up out of bed, face the day and be brave enough to go again down the rabbit holes of my daughters’ mind and my husband’s health.

How do I cope?

I acknowledge that this is a tough role to sustain. Instead of having a fixed plan to cope, I have several options that I can interject into my day without it feeling like another stretch for my mind and my heart. My activity of preference is walking. When I can’t make the time to do that, I listen to a favourite playlist or a podcast, talk with people who I enjoy being with, or I write. And I love trees. Seriously, love trees. I photograph trees wherever I am.

I also lean into my faith where I trust that God cares for me too. Sometimes I cast my worries on Him, other times I am loud or silently weeping to a friend. At times, I am questioning, and other times I dance joyfully. Always I am not holding these highs and lows hidden inside me. I have a fulfilling life outside of caring for my family too because I need to be in the spaces of my ministry and work to remain soft.

Often family caregivers tell me that it is easier said than done. To have any life outside of being a caregiver. This is true.

So, say it, and keep saying it. Over and over. Until your ears carry it to your heart and mind. Until someone else can hold you, listen to you and help you. Until you know you have your soft space inside of you.

You matter too. Your joy, your dreams, your experiences, your challenges..it all matters. To help make it easier for you to go from saying it to doing it, tell me in the comments one activity, routine, or indulgence that you miss doing, and how you think you can start at it again.

Information about Savannah is shared with her permission.

Disability Advocacy September 27, 2019

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.’

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

A Million Beautiful Pieces February 15, 2019

Valentine’s Day was not what we planned:heartbreak

The last few days, our eldest daughter Savannah was excitedly preparing to celebrate Valentine’s Day. This happens in two parts: exchanging presents and baking for the actual day, then a Valentine’s party with Savannah’s squad on the weekend. Talisa and Eli love this celebration because Savannah’s energy is directed at making them happy. Yesterday afternoon, we should have been enjoying the fruits of Savannah’s labour. Instead Valentine’s Day was not what we planned: Heartbreak.

As we are still figuring out how best to help our children through this, I am not going to disclose which one of my children it is. Nor will I explain where this happened and who was involved. We are affording our child who experienced this horrible interaction the opportunity to recover.

What happened was this:

One of my children was in a group with other children of the same age and an adult was present. An unplanned discussion happened about people with disabilities. One person made the following statements:

*People with disabilities should not be kept alive because once their parents die, they become a burden to their siblings.

*If I had to choose between having a physically disabled child and a mentally disabled child, I would choose a mentally disabled child because there are medicines to help them.

*Being disabled is no quality of life because they are suffering.

*What did Reeva Steenkamp see in Oscar Pistorius, because in his normal body he only came up to her waist?

*People born without limbs are pointless.

I can’t write all of what transpired out of respect to my child who had to endure this. The rest of what was said is even more shocking. Up until this point in our lives, Michael and I faced the prejudice, bigots, ignorance, and stupidity as Savannah’s parents. Now Talisa and Eli have to face this.

I worked in the disability sector. My brother Darren Moodley is an amputee. Our lives have been almost fully immersed in disability issues. Therefor my children do not know what different is. In fact they hold to the premise that everyone has some form of “disability”. It could be emotional, spiritual, something unseen. Most just cover it up well. Yesterday, my children realised just what prejudice looks like. It’s a trident that pierces and causes unbelievable pain. Now they are bleeding.

As Savannah’s mum, I can’t fully capture the emotional highs and lows I have experienced because I am ill-equipped as a person to support her. I can’t explain all the ugliness I’ve faced within myself. In learning how to be Savannah’s mother, I lost many things and I was never perfect. But always and without a doubt being Savannah’s mother taught me what unconditional love looks like. Not that I have been good at giving unconditional love myself. God gave it to me and Savannah lives it out for us everyday. Within all my times of complaining and in all my failures and mistakes Savannah only ever sees the best in me.

And that is the greatest gift Talisa and Eli have: their sister loves them and believes absolutely only the best of them. She finds no fault in them. Some would think she is an inconvenience to their lives. Siblings of children who are different know that love and convenience do not go hand in hand. Love is messy, unpredictable, confusing, frustrating, intense, forgiving, rejuvenating, strengthening, courageous, fearless, and necessary. This love teaches them the meaning of life: Mercy and Grace. Talisa and Eli understand this in a profound way that many adults struggle to grasp. When a person is without mercy and grace, then I can only weep for them. What a lonely, painful fall to reality they will face!

There is a saying within our community of people who are differently-abled “Having a child with a disability is not the worse thing to happen. The worst thing to happen is to raise a child who is cruel to people with disabilities.”

Please understand this. The world is changing. Mothers and Fathers and Brothers and Sisters are standing behind the community of People who are differently-abled. We are not sitting in the corners, cowering in fear. We are proudly out and about, displaying the beauty and glory of our community. Please empower your children with what is appropriate behaviour and speech about people who are different. Please ensure that your schools, social groups and religious organisations understand the rights of people who are different. Insist that your children understand and practice basic human courtesy and care. For the love of God, just be KIND!

The world is changing.

For today, my family will weep that we must suffer not because of who Savannah is. Because of who other people are.

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.

Disability Advocacy November 20, 2018

Parenting: Being Courageous even in Uncertainty

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

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

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

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

Julian from the WILD ONES Educational Show arrived in his bakkie (South African word for a small pick-up vehicle) full of cages and containers. We watched Julian set up, and Michael and I with some trepidation watched Savannah, watching Julian set up. A few years ago at Kurt’s party, Savannah clung to me for the duration of the party and was miserable and cross because she was so mortified by the animals.

As an autistic person, Savannah’s perception of some situations is different. What might feel fun and exciting to us can be uncomfortable and frightening for Savannah. In order for the whole family to enjoy life together, Michael and I had to make peace with the fact that Savannah will always require some level of support in many situations. Fear is a debilitating emotion and we know that Savannah’s fears are real enough for her, and therefore warrants our respect and patience.

That was the mindset that we had at the party but to our surprise and delight, Savannah decided to join everyone in the area of the garden where the animal show was going to take place. Julian kicked off the show by introducing us to a tarantula. Yikes! I know. I never thought I would hold a spider nor one as scary as a tarantula. But Savannah was watching Michael and I with keen caution, and so I held out my hand and took the spider. Then I held a bearded dragon and a barn owl and the list goes on.

Eli let a Corn Snake coil around him as Savannah watched in amazement.

Then he coaxed her into touching a bunny which we named Peter Rabbit for her benefit. That was one of her favourite childhood books.

Michael who is by no means an animal lover delighted her by holding a tarantula and whistled to a Cockatiel, coaxing it away from my shoulder to his shoulder.

I struggled to fight back the tears when we met the barn owl. Some years back she was caught in a trap and had lost one leg. So she cannot fly and is fully dependent on Julian for her food. As a mother to a daughter who uses a wheelchair and a sister to a brother who is an amputee; that little owl represented the vulnerability and the tenacity that I saw in my daughter, in my brother and in Kurt. More than that, Julian’s care and commitment to this sweet bird spoke volumes about something all of us at the party understand but rarely see outside of our lives as families of people with disabilities.

That is the act of simply caring for one another. Not based on what we will gain or what we will lose, but only for the reason that we are human and we have compassion.

Often people look at Savannah or Kurt and they feel pity. Understandably so because they see themselves as having more abilities than our children do. Often we as families are judged from their limited viewpoint about what we are doing and what we are not doing for all our children. Here’s the thing though: We are here caring until forever. We are constantly finding delight in life no matter what fears and unknowns and awkwardness and frustrations we face. So the pity we get is actually misguided. It belongs to the rest of the world. While our lives take us to difficult places in our hearts:

we know what “unconditional” means.
we know what depths of love and care truly exists in the human spirit, and
we know just how shallow so many lives are because they have not yet learned to give without counting the loss or the gain.

We knew from the beginning that parenting would be a daily exercise of giving of ourselves. It would be letting go of fears and showing up for our children no matter how we were feeling.

What we learnt was that parenting a child who has special needs is sometimes about giving all of yourself. It is about conquering those fears every moment of every day and learning to live with passion and joy knowing full well that your worst fears for your child can become your reality.

We do not know when Savannah will be keen to attend another event so we soaked up the afternoon with Kurt, his family and those glorious animals. We were carefree and delighted as we held tarantulas and snakes. Now that is a great paradox for the life we live, isn’t it?

Being courageous even when our hearts are uncertain.

A very special “Thank You” to Kurt, Maggie, Kevin (Kurt’s dad), Gabriella (Kurt’s sister) and their extended family for being one of the bravest, nicest people we know.

SA Mommy Blogger Awards 2017 October 26, 2018

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

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

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

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

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

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

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

My Story March 21, 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

A Million Beautiful Pieces February 15, 2018

The Ones Left Behind by Sue Robins

As a woman raising women and being married to a husband who believes I can do anything; our family are always aware of the gender inequality in society.

Then I am aware of the inequality in how people with disabilities are treated.

When you mix all that together, I am living the truth of the inequality against mothers like me. Women who are expected to be Super Woman in all areas of our lives while maintaining an income.

Currently I am struggling to find the right care for Savannah while I maintain a job. I have to work so we can provide everything our family needs. The notion of giving it all up and staying at home to take care of her full time sounds so heroic to many people but it is also folly for many families like us. Medicine and therapy costs us quite a lot of our income every month. We pay above medical aid rates for doctors and medical aid doesn’t cover everything that Savannah needs. Now that she is over twenty one years old, we are charged more by our medical aid company.

Please note that we live in South Africa and our government only provides a minimum social grant for people with disabilities that in our case will only cover the cost of one of Savannah’s medicines. We do not have suitable social programmes to assist families like ours in our country and when they do exist; corruption is rife.

So long story short… I have to work. And while my employers are the exception who are flexible and accommodating, being a mother to a child with a disability means I can’t plan for a career because I don’t know what bend Savannah’s life will take. I am mom… I have to be there for all of those bends.

If you believe in equality and in raising the stature of women in society, then please read this article by Sue Robins and add mothers like us to your cause.

We cannot only take care off a few demographics of women in society and leave the rest behind. A woman’s fight is every WOMEN’s fight.

We are the mothers who feminism – and the world – has left behind.

My Story January 24, 2018

I Know Different by Tricia Proefrock

I don’t believe in assuming what Savannah might be thinking, but just as I imagine what I’d like Talisa or Eli to think about me, sometimes I imagine what deeper conversations are denied to Savannah and I because of her disability.

“I know different” by Tricia Proefrock helps my imagination and lightens some of the burdens of my heart. May it do the same for those of you who walk the same path. And may it help you to be Different to us if you are not on this path.

I KNOW DIFFERENT
by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

My Story October 30, 2017

We are grateful when our child with special needs is acknowledged

Our family had a great treat on Saturday when Savannah was able to attend a wedding with us. After attending so many functions as a family of four; it was awesome to finally attend something as a family five. What fun it was to get dressed. A very dear friend loaned Savannah a beautiful Punjabi (a traditional middle eastern garment) to wear. She spent days looking at it and feeling it so that she could become used to the texture and colours.

Savannah struggles with sensory processing difficulties, amongst other struggles. For many, many years we could not wear traditional clothing because the colours were too overwhelming for her. So overwhelming in fact that she would throw up after terrible bouts of gagging. This past weekend Savannah, Talisa, my mum and I wore traditional Indian clothing and I had a special time getting the girl’s hair and make-up done.

We took many photographs and created lovely memories that was special to share with my Facebook contacts on my personal page. Everyone enjoyed seeing us decked out and acknowledged how special it was that we have a photograph of us as a family of five. As I study the photo of my family looking back at me, there is something that I want you to know about families like us.

We are grateful when Savannah is acknowledged.

No, we do not want to be the centre of attention nor do we want her to be treated any differently. But her disability means that there are some things that she will never be able to participate in for varying reasons. Please don’t go off on the “positive thinking” thing. Some people are born really short and need a step-ladder to reach the top cupboards in their own homes (I know, I am this person), and all the positivity in the world doesn’t make them grow to reach the cupboard. So yes, same thing. Savannah’s disability means she just can’t do certain things. When she is acknowledged with kindness and compassion just for who she is; it builds up her self-esteem and makes the hard stuff a little more bearable for Michael and I.

Earlier this year at one of the weddings that Savannah briefly attended, the bride and her mum had a family member bring a bouquet of flowers to Savannah to hold. The bouquet was a smaller version of the brides’ bouquet. Savannah held it while she watched the bride walk down the aisle. With so many things for a bride and her mum to think off on such a big day, it was very touching that they thought of including Savannah in this way. Note: the bride never posted a single picture of this on any social media platform. It was just a special moment for her and Savannah and was not the brides’ opportunity to be “applauded for doing something nice for the disabled kid”.

At another wedding that Savannah could not attend because she was unwell; instead of throwing her bouquet, the bride gave it to me for Savannah. Yet again, at a different wedding, the bride also gave me her bouquet for Savannah paying tribute to Savannah in a moving speech. Then all the guests stood in prayer for Savannah. I wept.

At the wedding that we attended this past Saturday, the guests joined the bridal couple on stage for photographs. We would not have been able to get Savannah up on the stage and were contented to not have a photograph with the couple. But the bridal couple came down to where Savannah was seated and took a photo with her. That was very meaningful to Savannah that the bridal couple acknowledged her.

All these ladies displayed an unselfishness that is not seen too often today. To think of Savannah in these thoughtful ways when they have every right to be selfish is simply breathtaking. I recognise that we are incredibly blessed to have so many people of calibre in our lives. But too many of my friends with children with special needs do not have this support and insight from their own families and their places of worship. Some people even say it’s unfair that the child with the disability “steals” the attention on the day.

Families of children with special needs recognise that we are the “eye sore” of an event and we definitely do not want to “steal” the attention. Believe you me, it is no fun having people stare at your child or make patronising comments to you when they’ve had a couple of drinks and are suddenly less awkward to be near your child. Or having to withstand the lovely ladies in their finery who stare condescendingly at you and at your child. No, thank you. We do not want to “steal” the attention at all.

In society today, people without a disability wax lyrical about how hard everyday life is for them. A life they choose to live, built by their own hands. So it is astonishing that as a society we are not nearly as compassionate or caring to those who cannot live at the same pace that society sets. There is little point in buying a sticker or dressing up in costume to support a fundraiser for special needs; if when you have the opportunity to acknowledge the family in your midst with a person with special needs, you don’t do it. It is a testament to our humanity when we show that we care. It reminds families that there are good people in the world. It makes them brave and helps them to make beautiful memories with their children. The consequences of these actions have a far deeper impact than wearing a sticker ever will.

People with special needs and their families did not choose to be in need of support and care but we are. Our children did not choose to be dependent on their families forever but they are. We want to rejoice and celebrate in the happy events of our families and our friends. When we make what is sometimes a mammoth effort to show up and to keep our bleeding hearts in check to celebrate someone else’s happiness; please simply acknowledge it; quietly and gently. You may forget the moment soon after the event has passed but we will remember it forever.

#acknowledge

My Story October 16, 2017

You need only be your own HERO-A letter to my second daughter for her birthday

(Published with permission of Talisa Pillay)

Honey-girl,

It’s your birthday week. I am so excited for you. You are growing into a young woman so quickly. I love how your ideas are changing and how we can talk more and more about more complex “girl stuff”. Yet, I am also acutely aware of how much time we have left before your life choices become all your own.

Three Christmases and then you will be finished with school. Yikes! That’s sobering to say the least.

Maybe seven or eight Christmases until you graduate from University. I’m properly freaking out!

Oh my! You may be wonderfully in love by then and God willing; your life will unfold beautifully and gloriously before you. I’m holding back the ugly cry now.

Talisa, as a young girl the world will tell you that you can do everything that any man can do because you are equal to a man. Please remember while you very well can do many things equally to a man – you do not have to. You have nothing to prove. Not to anyone.

What they also won’t tell you my love, is that you as a woman will be expected to do as much as a man. Yet a man is not expected to do as much as you will be expected to do. He will never need to prove himself. Yet you will be judged for how you keep house, whether or not you compliment your husband in action and character, how you raise your children, how competent you are in your career and what you achieve in all these areas. As a woman you will be expected to keep it ALL under control. A man’s limits are carefully defined and respected. A woman is perceived to have more limitations but also expected to exceed them all the time.

Don’t allow these standards to define you as a woman nor allow it to make you fearful of one day being a wife. Your worth as a woman is not based on how much you do or don’t do. It is only based on a simple truth: You are fearfully and wonderfully made and God loves you. You do not need to earn His love or any man’s love for that matter.

You need only remember that in order to “love your neighbour”, you must first “love yourself”. That begins with R-E-S-P-E-C-T. I hope that the respect we have for each other in our home irrespective of gender, abilities, disabilities, age and station will stay with you forever. When you respect yourself, it is easy to know what to allow into your life and what not to allow.

Also hold onto “living in love is living in God”. That simply translates to being joyful, peaceful, long-suffering, kind, good and faithful. As your dad and I have done in our lives, we hope that you will write these on your heart. I promise you that these traits will carry you even when you think you can’t make it.

Honey, the world will also tell you that your sister with special needs is your responsibility. In many ways they already keep trying to elevate her in ways that can be hurtful to both you and your brother; often diminishing you to just a caregiver. I am so incredibly proud of your depth of understanding of people and their intentions.

You have not become bitter or disrespectful. You have responded maturely never allowing their emotional overtures to define the relationship between you and Savannah. May these insights guide you to have an understanding heart and to also guard your heart because no one is allowed to diminish your value and uniqueness. Remember, fearfully and wonderfully made?.

You already understand a little something about loving someone unconditionally. You understand what selfless means and that “what is fair” is a complex concept in our lives. I am in awe of how you share a deep friendship with your brother, who I am sure is often much easier to be with than your sister.

Yet you never show that. Not even to me. Not even on the days when you just feel melancholy. Even then your fussiness in making sure that Savannah always looks good and taking the time to do her make-up; often dismissing me from the equation is heart-warming. May you always be tender; doing in quiet for people what others would be applauded for.

We have experienced the opposite too, haven’t we? When people condemn me for only speaking about Savannah and accusing me of not seeing YOU. I won’t give up the details of how we live in love with each other. Not even here. I respect your privacy too much for that. I love that I get to be your mum without all the scrutiny. That is the gift of your life to me. Thank you.

So, this birthday I want you to remember we have not raised you to be anyone’s hero but your own. When life becomes too overwhelming; there is nothing wrong with slowing down, thinking it through and starting again, and again, and again because a New Day always comes. I know. You were my New Day.

Happy birthday my honey. I love you!

Mum

disability

I KNOW DIFFERENT by Tricia Proefrock

I KNOW DIFFERENT
by Tricia Proefrock