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Ten years ago Savannah underwent a scoliosis operation. Three months after the operation we began working with a physical therapist to help Savannah to maintain her ability to walk. In the very first session, the therapist told me that she was going to teach Savannah how to fall. My heart nearly jumped out of my chest. I wanted to wrap Savannah in cotton wool and never ever let another bad thing happen to her. Here was someone telling me that we were going to teach Savannah how to fall. Why ever would we do that?

Savannah is careful that her wheelchair is behind her when she stands to prevent her from falling.

The therapist explained to me that Savannah was likely to fall at some point. She was still walking at that stage but was relatively unstable on her feet. She attended a school with children who were mobile. It was likely that she might be bumped. In the event of her falling she would have experienced serious damage to her already compromised frame. And so with my heart in my hands, I agreed to work with the therapist to help Savannah to develop the motor abilities to protect herself if she ever fell.

To my dismay, my vigilance and efforts in making sure that just about everyone who had Savannah in their care, knew to ensure that she did not fall was not enough. She fell. Yet, she did not sustain any terrible injury because she knew how to use her hands to minimise the impact of her fall. Of the many lessons I have learned in my life; this is one that stays with me.

We are living in a time when we have more information than we have ever had before. With the click on a link on our computer screens we find information that transforms us into micro versions of doctors, lawyers, psychologists, therapists, chefs, artists; educators, almost anything. We know how to put barriers in place to protect ourselves and our children before we even have a hint of any potential problem. We spend weeks researching before we choose a dance class or a cookery class. We can diagnose and treat health problems without seeing a physician. (Let me say here that all medical issues cannot be answered by Google. Please do consult a medical professional when your health is at stake).

Talisa completing an activity for Scouts a few years ago.

All to make sure that we circumvent any possibility of a “fall” in our lives.

I have spent most of my life trying to prevent another “fall” in many areas of my life. I’ve learnt as much as I can about the issues that define my life: violence, trauma, loss, teenage pregnancy, families of divorce, faith, autism, cerebral palsy, siblings of children with special needs, health, education, motherhood, and so much more. Every item on that list has numerous sub items. All of which have occupied my mind in different ways over the years.

In many ways I’ve understood the need for all my children to have experiences that help them to learn who they are without my constant vigilance and protection. Talisa and Eli were raised within the Scouts movement. There is nothing like being a Sea Scout and having one’s mental and physical strength nurtured and tested through a series of tasks. My children learnt what it felt like to have to work harder and longer at tasks to accomplish it. Scouting encourages autonomy, hard work, endurance and persistence. For any parent who is struggling to build self reliance and self resilience in their children, I would strongly recommend enrolling your child with a Scouting Troop.

Talisa finished gig adventure twice with the local Sea Scout Troop.

Yet even after all this, I too have been caught by the unspoken movement to pre-empt and protect my children from LIFE. Families these days are wired to make extraordinary efforts to ensure the physical and mental well-being of our children. The pressures that this generation faces are second to none. It’s so shocking in the time of so many advances in all arenas of life, this generation struggles so much with their self-worth. The drive to have a good story to present on social media leaves no room for “learning curves”. For those people who actually experience learning curves or “falls”, we are somewhat struck by their lack of foresight to avoid it. In this day and age, it seems shocking to most that people “allow” their lives to be interrupted by well…..er life.

When Eli had his sudden issue with appendicitis last week, my initial thought was could I have done anything to prevent this? When I spoke to a few of my friends, they were acutely interested in the same question as well as knowing what the signs were and what to do if one suspects this unwanted medical “fall”. No, I could not have done anything to prevent Eli from going through this. In this upheaval I had to do something that I usually don’t want to do. I had to relinquish control and teach Eli to trust the process. I heard myself saying to him that I did not know what to expect after the operation. I was honest with him and with myself that it would be painful and that we would find ways to get through it.

While Eli waited for his operation, we discussed what he could do to help make his recovery less unpleasant.

He had to try in small increments to push himself. He was surprised when he realised what he had to do was never as difficult as he initially thought it would be. He is fast developing an understanding of the power and miracle that is the human body. Savannah learnt this many years ago. She learnt what to be aware off as a person who was unstable on her feet. She learnt what supports to request so that she did not fall again. She accepted the wheelchair far more easily into our lives than I did. She has never once misguided herself into walls or people or down steps. She developed an awareness of her surroundings which is very good for someone with her challenges.

We all want to be wrapped in cotton wool and never hurt. We want to do that for those we love. I know first hand that the things that will cause us to “stumble” and to “fall” are not always physical in nature. The heartaches and damage that are caused in relationships can keep a person down for a long time. By overprotecting ourselves and those we love, we sometimes do not allow our instincts for self preservation and self respect to develop. We become accustomed to someone else protecting us and when they are not around, it becomes easy to fall into relationships that hurt us. With no idea of what our own standards are, we struggle to develop the character traits to withstand life. Without those experiences that allow us room to grow and to trust our decisions, we “fall” never to get up.

In different areas in my life, in different relationships I realise the benefit of knowing how to “fall”. I learnt where the bottom was for myself. It made me determined to never allow anyone to take me there again. Character is not developed by life following the exact trajectory that we plan. Character is developed by how we respond when life happens. I can only hope that as we all move forward with hope in our hearts for life to be better; we are wise enough to learn how to fall and brave enough to teach those we love the same skills.

In truth, when life does not get better it is us who have to get better at knowing how to “fall” so that we may rise again. Then by God’s grace we build again, a better life.

To fall is an opportunity to rise. Only better and wiser than if you never did.

Here I am in the final week of semi final judging for the Tammy Taylor Mrs South Africa Women Empowerment Programme. I’m not nervous. I’m both excited and nostalgic as I think about my best moments so far.I’ve lost weight and found my energy and strength again. I’ve been forced to take better care of myself and that has been good for me. In my motivational talks to women, I always drive home the point that we must be kind to ourselves first but I did not know how to do that before this competition.

I’ve also met amazing people. The staff and owners at the BloBar and Meyersdal Nail and Beauty Studio with their vibrancy and laughter was always refreshing. My cousins too have taught me so much about belief and empowerment and love. Through their companies, Shipping and General Transport and Supreme Rubber Rollers they gifted me the opportunity to “do me” by sponsoring me for this competition.

My sister-in-law took care of all my social media so that I could juggle everything else. My mum, my aunts and my girlfriends pulled together outfits like fairy godmothers. My husband and children have been so supportive and respectful of the times I had to be away from them.

People have written to me or called me or stopped me at events to tell me that they admire me for doing this competition at this age and as a mother of three. Women have shared that they are re-evaluting their lives and weighing up what challenges they would like to tackle.

It makes me glad to know that my journey to explore my womanhood in this way is meaningful to other women too. It’s been a wonderful opportunity and I am proud of myself for doing this.

I also recognise too that I am not on a journey of discovery because I already found myself at the age of twenty-two years old. I knew then who I was and what I was made off.

This journey this year has been about showing my second daughter Talisa that life is more than just facing down one challenge after another. It’s also about enjoying the moment and having a sense of adventure. I got to step out of my comfort zone and meet people I would not ordinarily have met.

The other semi-finalists are each amazing and powerful in the own right. I couldn’t have been amongst a group of more beautiful ladies both inside and out.

So here’s to them; for their drive, their determination, their friendship and our sisterhood. I will be sad that after Friday we will never all be together again. The top twenty-five Mrs South Africa finalists will be announced and their lives will never be the same.

In all the possibilities that lie before me, I am sure of this: I’ve given all of me to the people that count and to the opportunities that were presented to me. I know for sure who I am, and that is my gift to me.

Be True To You, Always.

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

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

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

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

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

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

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

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

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

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

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

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

 

 

‘‘Twas the night before school began and all was solemn and all was sad”.

Well that’s how it felt in my house. Talisa and Eli were feeling nervous as they prepared for grade ten and grade five respectively. Eli, a little more so because he was also beginning his school year in a new school.

Desirae and SavannahI have been struggling to write. A recent awareness day event about Cerebral Palsy touched a chord within me and messed with my heart. I was a guest speaker at the event which focused on inspiring younger families with children with cerebral palsy about what possibilities life held for them and that the diagnosis was not the end.

I listened to the stories of hope and sacrifice and achievement. I understood what it was to be the mother who spoke about these things. But that day I felt desolate and even defeated. I felt that we did not belong to a day about hope and inspiration. What inspiration could we offer? We had hoped. We had sacrificed. And our daughter had known what it felt like to defy the odds. But now? Now our truth was that we are also the family of a child who is regressing.

Our daughter is no longer on an upward trajectory. While Savannah is not diagnosed as having a terminal condition, the words “thriving, will develop, recovery, achieve, learn” and such; are not part of the vocabulary used by her doctors to describe her future. We are not the story younger families want to hear. We are the parents whose love is not enough.

It is not enough to keep her on the upward curve. It is not enough to keep her as healthy as she needs to be. It is not enough to stop the ache in our own bodies each time we lift her. It is not enough to keep myself calm when her obsessions make me feel like I am losing my mind. It is not enough to stop her physical pain. Our love is not enough to save her from her suffering.

When Savannah was younger, we felt isolated from our family and friends because they could not understand what we were grappling with in coming to terms with having a child with a disability. But we had solace in the community of other families like us. Now though, we feel the pity and the awkwardness from other parents because we are a treacherous reminder of the other possibility for people like Savannah. The possibility that some children grow up into adults who are going nowhere slowly.

And no one wants to know that this possibility exists. Other families who are parents of adult children with similar challenges know the unpleasant feeling too well too: When we are sought for our wisdom but held at a distance for our truth. We are great inspiration as long as the story is about how our children are thriving. While caring for an adult child with complex needs can be inspirational, no parent wants to pay a price like this for the title of being inspirational.

Last night after Michael’s shift with Savannah, I went to lie with her from about three in the morning. As I felt her trembling body and listened to her ask for what felt like the millionth time “Mum, God heal me? I be better?”, I realised how lonely we are. Lonely yet again. There are books, websites, talks, seminars, support groups, something where mothers of children with different needs can find a sense of belonging.

Where do you go when you are grieving the living? Who can relate to being able to answer the question “Why?” when their autistic adult child can’t make sense of her physically disabled body, that is in regression. How many mothers have looked into soft brown eyes and answered “I don’t know”? How do you say that sometimes I don’t want to do the thing that makes her happy because I just can’t face doing the same thing again? Who has the capacity not to judge you when you want to say “I just can’t do this again today”?

Am I angry? Am I sad? Am I frustrated? Am I tired? Yes, I am all of these in different proportions at different times. Do I think life is unfair? Yes, I do. It can be unbelievably hard to face each day not knowing what Savannah will be going through while we still have to be part of “life as usual” in other aspects.

What then do I believe about God and the purpose of life?
I believe this: Mary birthed a Son. He came, under what must have been terribly awkward circumstances for her. Both Joseph and Mary loved Him for the time that was given to them. When the worst time of that child’s life unfolded; Mary had the strength of all the world put together when she stood at the foot of that cross and watched Him suffer and then die. God did not spare even her, the mother of Jesus; from the truth of life. It hurts to love.

I can’t say I have the same strength as Mary did, but I can say this:
You don’t stop being a parent when it hurts. You can lose the whole world for the sake of your children but you never lose your children for the sake of the world. My heart will break again and again. Michael and I know both joy and sorrow. We already have the ability to weep with one child and then to laugh hysterically a moment later with another. We will talk late into the night about how amazing all our children are; how we are sad for some things and how our “hard” is so unrelatable to most of our friends except for a few parents.

Our love is not enough to give us the outcome that we believe Savannah deserves and that we as parents will find easier to cope with. Instead we continue to dig deep and continue to find ways to make life wonderful and spectacular. When you have lived with grief for a long time, you realise a few truths about life:

• To know grief is to have the choice to choose joy.
• To acknowledge that you cannot do anymore, doesn’t mean you have given up. It means that you       simply cannot do anymore.
• To be able to live in the moment is usually learnt through great heartache.
• Worry is a captor who was given the keys to the prison by the captive.
• Children don’t need superhuman parents who can fix everything and make it all better. They also     need parents who have the strength to hold them when it can’t be fixed and when it won’t get             better.
• The best people are those who don’t need you to fall apart to know that they are there for you.
• It is a conscious effort to make sure that you can remain soft when most of what you understand       about life can make you hard or indifferent.
• From the moment we are born, we are all dying. When that makes sense to your soul, you will          appreciate the magic of each morning.
As sad and morbid as that may sound; really..it is the beginning of living beyond grief.

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

 

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