My Story Archives | Page 3 of 3 | A Million Beautiful Pieces

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

My Story October 9, 2017

The Anchor

For Savannah Diwali, Halloween and New Years are very stressful days. So stressful that she is anxious months before when Spring begins. To add to her anxiety at the beginning of this September her caregiver left us without notice. At the same time both Eli and I fell ill and needed to have small procedures in separate hospitals just days apart. It was a rough time but not the first rough time that we have experienced.

We handled it because that is what you do. For us, we no longer believe that once we get through a rough spot life will get easier. We recognise that there is no telling what lies before us and just because we get through a challenge is no guarantee that we will not face something like that again.

What is that you say?

“God does not give you more than you can endure and remember He only gives his toughest challenges to His toughest soldiers”.

Well that is debatable. The high divorce rates amongst families like ours and the number of mothers on anti-depressants say otherwise. I think however well-meaning those lines are, they also place a burden of heroism on families. If those lines were followed by actions of friendship and support, they may actually have some tangible meaning for many families because God did not create us to deliver great lines. He created us to care for one another in a manner of humility and not for an opportunity to brag on Facebook. Mmmmm… I loaded that last sentence.

So yes, all I hear when people say something about my apparent super natural strength is:

“No matter how painful this is, no matter how much your heart is breaking; you are not allowed to break. The mother who is stressed that her child (without a diagnosis) is having a tonsillectomy or grommets or any other typical childhood ailment can break. Well, because you know she doesn’t have your super natural strength. But you whose child is facing life or death, or another painful surgery or whose child is going on strong meds too get those terrible seizures under control, or who can’t use the toilet at twenty years old or is peg fed at thirty years old; oh no you can’t break. Remember you were chosen for this. You have that special portion of strength”.

Actually we don’t. It’s more like what people need to tell themselves to cope with the reality of our lives. It’s not always helpful. We are not the toughest soldiers and no, we cannot endure some things. For my family the smallest change in Savannah’s behaviour, physical well-being or mental state can mean something. Too often we have had to fight for medical services when to the clinician’s eye Savannah appeared fine. Yet we knew something was wrong with her. And too often what was treated as a minor concern by doctors; has actually become a life defining issue for Savannah’s health. This is also true for many other families like us.

Where some parents worry about their child through an infection and then ease back into a more carefree take-every-day-as-it-comes lifestyle; we watch every movement, listen to every moan and take note of change of patterns all the time. And where most typical families experience intense emotions at medical procedures or when their child needs more help in certain areas; families like ours accept that hypervigilance is a normal way of life all the time.

And you ask: “However can you live like that?” In fact a mother of a typically developing child once said to me “I would never do what you do. You have too much patience”. Uh, it’s your child. But yes, each of us in the family have the choice as to how we care for each other while caring for Savannah. It is a decision that we as parents make to ensure that we don’t just live, but that each of us thrives. Not the “heroic” thrive that society wants to see but the thrive that your soul recognises and responds too. And in so doing my family have learnt that we can be:

Caring: It’s not just about the person with special needs but about each person in the family too. When we understand the frailty of life; care and concern is a way of life for everyone.
Careful: We are careful to hold each one close and sometimes especially for Talisa and Eli, we let them go a little too. We are careful too see each other in every moment and not only see Savannah. Only we understand the same unspoken beautiful soul secrets and the heartaches that lie deep within.
Respectful: Life isn’t a movie production just for Savannah. We respect each person’s right to thrive in their own story within the family. But yes, we have to take extra care that Savannah makes it to each moment.
Forgiving: We choose to live in a state of forgiveness. We understand that each of us can’t always be happy at the same time. One of us might be processing too many issues simultaneously or one of us might be worrying about something he or she cannot articulate yet or one of us might just be overwhelmed with the enormity of living against the tide all the time. And so we might not be as present as we should be. And that is okay. We forgive, we understand and we move on.
Joyful: We choose to be joyful. Sometimes like when I was sick and couldn’t get out of bed, I didn’t feel joyful. It annoyed me that I needed care and that I was a dependent instead of a carer. But listening to Michael and the children fool around arrested my soul. He was surviving on very little sleep but he chose to still be fun and engaging with the children. Joy is a choice and it isn’t as flimsy or as fleeting as happiness.

It is an anchor.

My Story September 12, 2017

I’m rising on a point of order

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

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

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

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

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

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

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

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

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

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

My Story August 7, 2017

Few people would choose a child like mine

My mother-in-law is sick. Very sick. It’s quite surreal for us because she is the centre of the family. It’s painful to watch someone with so much energy and with such zeal find themselves in tremendous physical discomfort as old age encroaches.

This post though wasn’t prompted by her illness. It was prompted when I saw this on a Facebook timeline “The wise woman builds her house, but with her own hands the foolish one tears hers down”, from the Book of Proverbs in the Bible. I immediately thought of my mother-in-law or “Ma” as we affectionately refer to her.

Mothers of sons tend to have a pretty fixed picture of the ideal daughter-in-law for their beloved sons and Ma was no different. I was definitely not the ideal daughter-in-law. Becoming a mum at eighteen; married and divorced by twenty-one years old and having a daughter with a disability; doesn’t exactly say “I’m the right girl for your son”.

However from the beginning we both knew it would take an effort from both of us to make our relationship work. What surprised me the most was how little effort it took for Ma and Savannah’s relationship to work. From the minute they met, Savannah belonged to Michael’s mum. For Ma the adoption process was a mere formality to give Savannah the same name as her and her family. It certainly helped Ma and I to navigate our relationship with a deeper sense of care.

A few years later when I was pregnant for Talisa, I prayed for a boy. I was afraid that when Michael and his family had another girl; their “own” girl; then they would draw the distinction between Savannah and the second girl. In some families positions and birthrights can be contentious points and the root of much discontent. Also many natural families do not easily accept and value their own child with a disability. I can now admit that with all of this in my mind, I was terrified of having another daughter. I didn’t think I could bear the heartache of watching my already socially challenged child facing rejection.

Because of the rough start I already had I understood too that “belonging” to a family was not a guarantee. I wanted all my children to enjoy that privilege equally, yet I understood I was hoping for something quite ridiculous given the circumstances. On the day Talisa was born Ma phoned me. She said clearly “Thank you for my second granddaughter. I am blessed with two girls when for so long I had only sons and grandsons”. I wept.

Six weeks later Michael, Savannah and I took the new baby to meet her dad’s family in Durban. Extended family poured in to congratulate us and to celebrate with my in-laws too. A few people remarked that finally my mother-in-law had a “daughter” of the house. Ma never missed a beat in reminding the jubilant visitor that she had a granddaughter for a few years already and that she just happened to know this new granddaughter since birth.

Since then Ma in her resolute way ensured that Savannah and Talisa grew together in love and pride for each other and for the family they belonged too. Being a parent in the community of people with special needs I know that very, very few people would CHOOSE a child like my Savannah. In fact many families fall apart in circumstances like these. Not all families can make the sacrifices that caring for a person with a disability requires and even fewer can make those sacrifices without being boastful about it. My husband and his family did just that and they have never spoken about it. They consider it an offence should anyone defer to their relationship with Savannah as being special or if they are told that they are amazing people for “looking after that child”. They do not justify Savannah’s place in the family to anyone. It’s just what family does.

So here we are. My mother-in-law who is really sick, being bossy to me about making sure that Savannah’s 21st birthday is spectacular. It is her granddaughter after all and what Ma and her girls want, they usually get.

As I celebrate Savannah’s 21st birthday this week, I am mindful of how blessed I am. Even though it’s so painful that Savannah is experiencing complex medical problems and my mother-in-law too is experiencing such pain and discomfort; I am grateful to both these women for weaving their beauty through my life. Savannah with all her complexities has taught me that a frail body can house a powerful soul. Ma taught me that when you say you love God with all your heart, all your soul and all our strength; then it’s not hard to love His children.

My Story July 24, 2017

You cannot be depressed-Then there was me

I did not realise that so soon after starting the blog, I would feel compelled to share a deeply personal struggle that has taken most of my adult life to overcome.

The apparent suicide of Charles Bennington came up in my Facebook feed a few times over the last days. I have not listened to his music so I can’t say that I reacted as his fans have reacted. However, the fact that he may have committed suicide was what caught my attention.

Ever since I was thirteen years old a line began to circulate in my head “anything to stop the pain”. I grew up in a home of controversies and contradictions. The details of that part of my story is irrelevant now but it was impactful enough at the time to cause me to overdose by the age of seventeen years old.

The overwhelming idea that life was not worth living had taken root and while having Savannah strengthened me to fight for her life; it was a long road before I believed whole heartedly that life was worth living. In fact, long after I was married to Michael and already a mother of three, I battled with the idea that I was loved, I was wanted and I was purposed by God.

I remember one night lying in a heap in Michael’s arms saying that I had this picture in my head that there was a bridge between happiness and I; and that I would get him and the children over it but I was not worthy of crossing. Having lived with sadness for a long time, I know that an instant spiritual cure is not always true for many people. The issue was never with God anyway. It was with people.

There were many people who were quick to judge my “choices” and who blatantly championed themselves about how they were better off than I was. I always thought it odd at how people engage in acts of kindness and generosity to the poor and the needy, yet often have no time or compassion for those who sit beside them who are so sad that they don’t see value in life.

Somehow, we have trained ourselves to think that the people with whom we fellowship alongside in our places of faith, our places of work and social circles are all nicely put together like we are and if they aren’t then it is not our problem. We offer quick, passionate words of advice based on aiming to fix their problem so that we don’t have to bear the guilt trip and pain of listening to it again and again, or we simply distance ourselves from them.

My husband used to say that if you have the joy of the Lord you cannot be depressed. For those people like him who have been raised in hope and love, they cannot always grasp the enormity of hopelessness.

And there was me: Michael’s most humbling lesson and likely his most passionate prayer. All the words in the world could not destroy the darkness that rooted itself deep in my soul convincing me all the time that the world would be better without me.

Only love and compassion restored me.

Michael’s patience, hand holding, trust and treating me better than I believed I deserved, slowly helped me to see that I was worth God’s love. If this man who sacrificed so much for me could love me, then surely God who I could not see must love me too.

Between Michael’s dedication and a friend’s compassion; slowly the darkness began to subside. Even though I still think life is too hard; I now know I am enough to handle it, and that it is okay to not be everything for everyone. I learnt to love me too.

For those who don’t have friends and family whom they feel they can turn too, it is such a tragedy. When standards and expectations of those around them are too high and they know that they cannot remove the masks they wear; then suicide seems like the only reasonable option.

And what a shame that is. Not their shame but ours. It is a stain on humanity when we react with detachment and judgment when someone commits suicide. We should bow our heads in shame that we failed a fellow human being. And the only redemption for us is to turn our attention to their families and be dedicated in helping them to find value in life again. Just be kind and patient with people.

If you are battling depression or suicide, please speak to someone today. Your life is worth it. You have purpose. You are LOVED.