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Today nineteen years ago Michael and I said, “I do”. This morning when we lay in bed, reflecting on our journey, we marvelled at how far we have come. Love is strangely complicated and yet purely simple at the same time. We feel that we are in two places at the once; still newly weds and yet we know so much more than we knew about each other on our wedding day.

We recounted the valleys, and there were a few; and we talked about the mountains we are climbing, and we wondered about the ones we have yet to climb. We thought about the people who stayed with us, and those who we have lost.

I especially struggle with my anniversary because it was at our wedding that my parents’ marriage began to unravel; and what I remembered for a long time about the first year of my marriage was their divorce.

I don’t remember long lazy mornings lying in bed, or walks down sunset lit streets, or suppers that became breakfasts. Instead all those moments were consumed by the pain of watching my parents marriage dying while mine was being born. I felt guilty, frustrated and confused. I remember the agonizing pain that I could not escape from no matter how much I wanted to. Overnight from being in the bliss of marriage we were thrown into the role of elders; caring for everyone else but each other.

During this time I was still grappling to come to terms with Savannah’s diagnosis and the disintegration of my family. Michael was learning to be a father to Savannah, son-in-law and brother-in-law to a decaying family and a husband to me. Savannah started school at an early intervention center and not at the local pre-school as we hoped; and we began the emotional rollercoaster as parents to a child who was labelled “ineducable” and a “person with profound disabilities”.

It is amazing when I recount that time; because if we thought that was going to be our only challenge, we were wrong. We faced Savannah losing her ability to walk independently and Darren (my brother) becoming an amputee. Those two tragedies still bring us to tears. Then Michael was retrenched at one point leaving him without a job for one year. Savannah underwent over twenty procedures under anesthetic and anniversary celebrations and date nights were repeatedly put aside to pay medical bills. Between our three children, we have been with them in medical theatres about thirty some odd times in nineteen years.

We fought for services for Savannah, fought for our right to try different ways to help her live her best life, fought to be understood and accepted as her diagnosis and changing needs made us aliens in our families and faith communities. Amidst all the deep paths that we ventured, God blessed us with Talisa and Eli.  The joys in parenting our three children became our lifeline and our lives.

We did not sit together much because one of us was outside at events with Savannah or with one of the other children when they were too little to sit still.  Or either of us (mostly me because I was home with the children when they were little, and needed a break) attended events while the other parent stayed home because we were too exhausted when Savannah did not sleep for days or when we could not afford to buy new clothes for everyone in our family to attend an event.

We busied ourselves in church activities, awareness programmes for people with disabilities and tried to be available to anyone who needed help. We put our hands up to join committees or babysit for other couples. All of this was good and we made good friends, but all of this was not always necessary.

We are both opposites in many respects. Michael is an introvert where I am an extrovert. He is unyielding when he believes that he is right, and I of course am right! So that makes for interesting discussions. Just kidding. But we both have our own ideas and do not need to agree on everything.

He is not romantic while in my head plays a perpetual playlist of love songs. He is a meat eater while I am a pescatarian. He wants to watch Manchester United and I want to read Jane Austen or Karen Kingsbury or Marian Keyes. He does not dance, and I was born to dance. Oh, but he sings. He wakes up every morning humming a song.

All dressed up for a rare night out back when our children were younger.

When we look back at what unfathomable storms, we weathered with little to no support; we know that we are a witness to God’s divine hand over us. We hold each other with humility for the times we missed out on, when we did not show up in the ways we should have. We embrace with a deeper respect for the others’ strength of character. We come apart to each other; knowing that we are safe indeed.

I thank God for our different seasons. But mostly, I am thankful to God for holding us together through it all. I am thankful that in all my joy and all my pain; being Mrs. Pillay continues to take on a deeper and more precious meaning.

What we know to be true is that love is strangely complicated and yet purely simple at the same time. We are thankful for a love built on the one who first loved us, Jesus; and we are thankful to Him for giving us this secret for our marriage:

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law” – Galatians 5: 22 and 23

Happy 19th Wedding Anniversary to my endless love.

Now I am off to make our favourite meal, a Thai style stir fry (meat option and vegetarian option) which we will enjoy in the tranquility of our garden, listening to the soundtrack from our movie ‘Con Air’. That is our story for today: love during the time of lockdown (can’t help trying to play off the title of a favourite book of mine ‘Love during the time of Cholera’ – by Gabriel García Márquez. I highly recommend it.)

Most people have an idea of what the worst circumstance is that could happen to them, and sub-consciously or consciously navigate their lives trying to avoid it. For some it is the fear of illness especially if their parents faced complicated health problems. For others it could be financial: the fear of being poor (no one fears being wealthy).  For some it could be losing someone. Either when a relationship ends or when a person’s life ends. For parents of teens, it is a myriad of concerns that we fear. “The worst thing” can take on any form to different people in different circumstances. For myself, there were several “worsts” but none more than when it concerned Savannah.

Savannah And I at the Whitney Houston Show last year

Like many new mothers, when I became a mother for the first time, I had a certain level of obsession about how I wanted Savannah to be cared for. But then, when she was diagnosed as a person with cerebral palsy, my attitude switched between “whatever will be will be” to “follow every piece of advice” exactly, precisely according to the doctor or therapist or anyone who I believed had any experience in caring for a child who had significant challenges.  Some days I felt overwhelmed by how much I had to remember about her respiratory issues, her physical challenges and her cognitive challenges.

Yet, like most new mothers, I was ever hopeful that my love was enough to save her from any and all obstacles. We were going to prove the world wrong and she was going to move out of my house by the time she was eighteen and attend university. I wrote a post some months ago titled “When love is not enough” about how we face that truth time and time again.

Sometimes the harshest circumstances create the most steadfast people.

So was the extent of my hope. My heart raced towards this idea only because on an emotional level, I was running from the possibility of Savannah never being able to walk and worse still, I was ever fearful of one day finding that she was not going to wake up. I fully believed with all my heart that this diagnosis of cerebral palsy was the “worst” that could happen. I ignorantly thought that surely once a baby is diagnosed with such a condition, they must be exempt from all other terrible issues?

But no. In fact that very diagnosis and later on the added complications of Savannah being a person who is autistic, taught me that she was never exempt from anything. Her life was like a magnet for all strange and complex health problems both physically and cognitively. If I thought I was overwhelmed by Savannah being diagnosed as a person with cerebral palsy, I had no idea that was only the very first inch of the iceberg of all her challenges.

During the first ten years of Savannah’s life, I went through a cacophony of emotions as I grew from being a teenage parent, to a divorcee, to being a single parent, to my parents marriage finally falling apart, to eventually building my own second marriage and becoming a mother to Talisa.  All that in ten years! So it is no wonder that I struggled with depression for most of my life. I could not share this with my family because they believed it was a sign of weakness. When I married Michael this was further complicated when as I Christian I was told that I could not be depressed.

So continued my confusion about why I was here and even more bizarrely why, of all the women in the world, was I given a daughter who needed so much? If being depressed and having thoughts about suicide was causing me to be my own obstruction in receiving God’s love, what hope was there for me now in my role as a parent? As a parent who was struggling with post traumatic stress disorder from childhood trauma and other issues; I felt very lonely and isolated. While I could verbalise some issues to other women in my family and in my church; I was almost always left feeling inadequate. Michael tried very hard to understand this inexplicable, deep sadness but he could not undo what he had not done to me.

All he had to offer me was his love believing just as I believed about my love for Savannah: it would save us from further pain.

The truth of that belief became real about six years ago. I was having a very hard time coping with Savannah when she finished school. A few of our friends’ children with special needs were going to live in facilities and Savannah liked this idea. She did not fully understand what that would mean for her though.  For a few days Michael and I were having these heart wrenching discussions about Savannah trying a respite centre for four days a month.  It was difficult to admit that I was not coping with Savannah and that she and I both needed a break from each other. It was a tough conversation and one that both Michael and I struggled to find the right words for. Michael was listing off all his fears:

“We have worked so hard for her and it feels like we are giving up.”

“How can we trust them?”

“They don’t know her. What if something terrible happens to her?”

We face the storms of life, and we survive.

As I listened to him put into words what was also my fears, I surprised myself by my response. I said something like this: “What could be worse than what we have already faced? Our worst fears are already true. She lost her ability to walk by herself.  Her doctors believe that she has a limited life span. But we are still here. Those things are true but we are still here. The worst has happened. It is happening and we are still okay. What more can we not face?”

That was a defining moment for me. As I said those words. It was as if I also reminded myself of all the “worsts” I have lived through. It had all happened already. The power of that realisation put into sharp focus that in the midst of all the chaos of life, I raised a family who are intact and thriving.  It hit me so hard to realise that we had already lived through all the “worsts”.

Just before Talisa was born was probably one of the hardest times in my life and it lasted a few years. I was mourning the loss of my family as my parents marriage disintegrated, while coming to terms with Savannah’s additional diagnosis of autism and trying to be a good mother to Talisa who was a very demanding baby. The weight of everything at that time was incredible. I felt that life would never be happy.

But somehow here I was years later having this discussion with Michael about Savannah having an experience that I knew required a great deal of courage on my part. Like physical exercise that builds muscle,  somehow I had grown mentally and emotionally strong in the areas of my life story that should have destroyed me. I gained the ability to remain steady and in control. I learnt to see life from other people’s perspectives which is a great ability when raising a family where a child is autistic and is also a person with cerebral palsy and other conditions.

So did love save us?

Faith Hope Love

What else could have given me the mental agility to be flexible and the wisdom to be emotionally vulnerable to become everything my life needed me to be. Being loved unconditionally by my husband was God’s gift to me. Learning to love myself for exactly who I was, and trusting God’s plan for my life, was my gift back to the loves of my life.

Love saved us. The “worst” has only broken us wide open to share it with everyone.

In the end what else matters?

 

I have not written a blog for two weeks. And now here I am. I feel rather delighted with the quiet time I had and with all that I have achieved in these two weeks. One aspect that took up most of my time was my investment in my children’s back-to-school preparations. That required focused time and attention from me. It is such an important part of my year that even my Christmas preparations can’t compare. Why? Well, because I am a big believer in “how you start is how you finish”.

My hope is for my children to aim for the highest version of themselves with self-respect and self-love.

In the days leading up to the first day of the new school year, we (being Michael and I) encourage our children not only to start getting to bed a little earlier; we also coach them into thinking about what personal goals they want to set for themselves for the year ahead. Our back-to-school preparation includes providing our children with: a safe space to face their fears, plant their hopes and to acknowledge what supports they already have for the challenges that the year will bring.

One of those challenges for our family is when Savannah has a medical flare up. This happens at anytime during the year. Sometimes she is admitted to hospital and that means our family routines change drastically. Both Talisa and Eli know what it feels like to face an important exam or event while feeling worried about their sisters’ health. It would be neglectful of us to assume that the concerns we deal with regarding Savannah do not make an impression on Talisa and Eli. Anxiety is a real issue for teenagers and too often they are not taught helpful ways to deal with this. Anxiety in teens:What it looks like and strategies to help from Parent24 offers some insight into this topic.

In our home, Michael and I have a golden rule all year round but most especially during the month of January: we ensure that we are available to Talisa and Eli to listen to anything they have to say.  We believe that “how you start is how you finish” and we want them to start strong. What they are saying or not saying as they begin the daily school grind are markers that guide us on how best to support them.  We know that as teenagers our children need us to listen more and to lecture less. Sometimes that can be really hard to do as parents. An educational psychologist has been part of our parenting journey at different times and we value the process that we went on with them in helping us to help a specific child at a specific time.

Savannah being autistic meant that our then educational psychologist had her work cut out for her in teaching us neuro-typical parents a totally different way of thinking about parenting. We learnt how our emotions affected Savannah when we did not understand what she needed.  We learnt that we caused more anxiety if we indulged ourselves with unbridled expressions of emotions. It only exacerbated the issue at hand as Savannah’s anxiety increased and we became part of the problem when we should have been part of the solution. We learnt how to express ourselves in a way that became supportive to Savannah without any outbursts from her or us. You could say, having learnt to respect our child’s right to a space that is calm and patient, means that Savannah trained us well for her siblings. 🙂

Generally teenagers are usually more emotional yet less able to express that in a way that will be helpful to themselves. We want Talisa and Eli to feel free to express their fears and hopes without the worry about whether or not it will displease us. We want them to feel brave to go to every corner of their souls to seek out what might be possible for them and to be able to explore those ideas with us. Even if we do not understand it, it is more important for them to feel free to express themselves than for us to limit them to only our own understanding of them and to our dreams for them.

This time of planning, discussing and listening to each other before the school year consumes us is empowering for all of us. Our plan includes our goals, how to achieve that and what supports are available to each family member. I wrote about this last year in my post The Safe House. Each person writes down their personal goals, their academic or career goals, their spiritual goals and we agree on a goal or goals for us as a unit. We talk about what we have written and if necessary we discuss how the family routines or resources will be restructured to support relevant goals.  We also write down how we plan to achieve each goal and by when we want to accomplish each goal.

Having a child who is autistic and medically complex means that Michael and I cannot completely plan what she will need during the year. But sharing our goals together means that we are all continuously looking out for each other. Not only are Michael and I mindful of being available to the children and being realistic about what they need; the children too become more involved in how we function as a family. We found that as they naturally assume more responsibility for their sister than she will ever be able to do for them, they also naturally become a support system to each other and in some ways to us a well. This is not a bad thing for children.

We discuss different areas of our lives as we plan for back-to-school. Some areas require more detailed discussions and others may require a less detailed discussion. From having daily routines and acknowledging how each of our routines impact each other, to deciding who we will pursue relationships with and who we will cool off from (if anyone) are all part of these plans for the forthcoming year. We pray for the year ahead and for each other.

Talisa and Eli were all smiles on the first day of the new school year.

During the year Michael and I make a habit of checking in with each other and with the children about their plans. We also celebrate when the children achieve a goal (Michael and I are learning to do the same for ourselves too). At the end of each school year, we review this document. It is empowering to see how much each person achieved. If someone did not achieve a goal we discuss this together. We facilitate a discussion to help our children reflect on themselves for answers as to why they did not achieve a goal. This has been of greater significance for them that we do not accuse them. Ultimately, we want our children to take responsibility for the pursuit of their dreams. We want them to be brave enough to be self-aware of their own shortcomings. Mostly we want them to learn how to pick themselves up and to persevere instead of falling into self-criticism.

During all of this, the very personal goal I set for myself is to be a parent who helps her children to aim for the highest version of themselves with self-respect and self-love.

Next week, I will share more about how I helped my teens get into a positive mindset using an idea I learnt at Journey To You. 

Today Savannah is reminiscing about the wedding last year when I was the MC and I danced a special dance.

Now that I work from home, it is a mixed blessing.

My children and my husband love having me around and I find we are using our time more productively. I wake up everyday excited to meet the day. I can’t remember ever feeling like this in my whole life.

For those families who have a child with a disability, you will know why this dynamic is precious. My daughter Savannah is witty and funny and kind and thoughtful. She is also different in her way of thinking and feeling.
She is my ever-long learning course. Teaching me all that I don’t know and often after working hard at understanding her point of view, I come back to the realisation that I just can’t reach all the depths that her mind wanders too. As an autistic person, she sees life in a way that I work very hard to understand; only to find that I fail.

So often I fail. My struggle to keep up with the “normal” world collides with trying to grasp her view; and I become frustrated, and angry at myself. At her. At this life and it’s persistent demands. Yet, I have to live in both worlds. I have to try so hard to keep up with life so that I can be part of it’s rat race and try to earn a living to provide for all our children.

Governing all that we do, like so many families like us, is that we must try very hard to earn more than a living.
We must provide for Savannah long after we are gone. And that is what keeps me awake till the early hours or gets me out of bed long before the sun rises. Working from home while also being a caregiver, a companion and all that encompasses being Savannah’s mother, is my “more than a conqueror” daily challenge.

If I could stay at my desk all day, I would not eat or drink because truly writing feeds me like nothing else does. But my reverie is broken every time when Savannah calls me. Sometimes what she needs is reasonable and makes sense that she called me. Other times, she calls me to tell me something so far off base from the moment that we are in, that I throw my hands up in the air and proclaim out loud that I don’t need to know the tit bit of information that she is supplying. She doesn’t grasp that I can’t know what goes on on her head and so we tussle with memories until I either get what she is on about or I give up and walk away.

For example, a month ago she suddenly jolted to March 2014 and for several days, she recounted everything she remembered about that time. Everything. Details like what earrings I wore and who we saw. People who I have long forgotten. She remembered their earrings, their watches and who said what, when and where. As I fight back the urge to weep for what feels like the hundredth time that she calls me to say something that I cannot see the relevance in; I ask myself if anyone else lives in so many spaces all at once? And if so do they survive themselves?

Right now, I am in the middle of writing about Domestic Abuse for the UNWomen’s Campaign and it takes me back to times in my life that I have closed the door on. Yet, now at forty, the shock of what I was allowed to be privy too as a child, washes me afresh. I have several other writing projects underway and a new client who I have to do some research for. So my mind is a little more than preoccupied on a daily basis.

Then Savannah calls. Again. Not being sure if she needs physical assistance or if it is just another newsflash from the past; I walk to where she is because that’s my life.

Looking back over the years, I’m most in awe that while I was trying to glue my heart back together as a teenager who learnt too much about the hypocrisy of the adults around her, I somehow kept my sanity as I became Savannah’s mother. Over these twenty-two years I’ve listened to the same story that my heart didn’t have the words to utter when Savannah was little. Parents grappling with the heartbreak of the unknown as their child begins life in a world designed to set itself against them. The most competent of people, crumble as they understand the force that will be required to help their children live their best lives.

Each time, I’m stunned anew that a girl like me became Savannah’s mum. What was God thinking to trust me with her? It has never been easy. There are days when I wish I did not know of the things I have to know. But I survived and I have learnt how to thrive right where I am. Having Savannah at eighteen was probably the worst thing to happen in a life already falling to pieces. Yet years later I understood that being Savannah’s mother saved my life. Who knows what I would have become, had I not have to fight for her in all the ways imaginable and unimaginable? Would I have known how to fight for myself or for that matter would I have known that I could change the course of my life?

Even now as I try to juggle housekeeping, children, writing, keeping up with everything, Savannah calls. She is now remembering December 2017. She wants to play the song I performed at my cousins wedding. I’m not in the mood for this and I grumble something to that effect.

As I walk away from her with the clock ticking and the checklist running in my head of all that I have to get done today, I hear her say: “Pretty mum the wedding. My mum good dancer. Well done.”

Savannah and I decked out at a wedding last year.

I can’t help looking back at her as she gives me a big grin. Maybe I am wrong again. I don’t think I am looking after her at all. I think she is looking after me. Drawing me away from the square boxes everyone is fighting to fit themselves into.

If you have heard me speak you will know that one of my key points is that there aren’t answers to everything that life throws our way. For those moments, there is always dance.

And so as Savannah played the song “Tere Bina” from the Bollywood movie Guru for the umpteenth time this morning, I took my own advice; and I danced. She clapped and squealed and made her happy sounds.

No one ever tells us that the lines of our broken hearts, make for the most polished dance floors. Or that dance is meaningless unless someone gives you a beat to dance to.

As I wrote in my previous post (5 September 2018) I made the choice to leave a full time job and to pursue a career as a writer and speaker http://amillionbeautifulpieces.co.za/2018/09/05/i-am-bravely-making-the-scary-choice/.

Making the transition from one career to another is quite daunting. Then to do something so different as working for myself and being based at home is another paradigm shift. To work from home where my adult daughter Savannah (autistic and has physical challenges) spends all her time, adds another dimension that requires planning and patience.

Before I made the choice to make this change I thought long and hard about this. Working from home means that I have to be unbelievably disciplined. Especially when as a mum, it is usually my job to make sure that everyone has everything they need all the time.

Part of the planning process meant that I had to decide what and who I had to do without. Meaning I would not be in a position to attend certain social events that would be beyond my new budget and it means that I had to forsake having a full time helper.

I am truly blessed to have a lovely lady who comes in one day a week to help me. I am in awe of her. She literally scrubs down everything and makes the effects of this one day very meaningful. However for a family of five there are many domestic chores that must be done consistently.

This was my first challenge: to have a plan of action on how I was going to get through the household chores and my work at the same time. I can’t function in chaos and am known to morph into Maleficent on a bad day when I feel out off control. Therein was the first challenge. How to control the external so that I could control the internal?

Challenge two is somewhat more complex. It requires that I must be emotionally wise and mentally strong. That makes me feel tired, even as I write it. Yes, challenge two is how to manage challenge one while I also have to be my daughter Savannah’s primary caregiver.

As an autistic person with physically complex needs and as someone who is struggling to come to terms with the reality of her life, Savannah largely lives within her own time zone. Some days she might wake up at seven o’ clock and the next day she might wake up at two o’clock. Sleep is a fluid thing for her. On a good night she will wake up twice. On a not so good night we may get four hours of sleep. Of course she recovers the lost sleep …in her own time. We don’t.

When she is wake she needs some physical help. She also tends to perseverate on certain topics and may ask me the same question a few dozen times or may tell me something a few dozen times. She has some medical issues for which neither her doctors or I have worked out as yet when to expect a flare up. Thus being flexible, patient and kind is the mountain I already knew I would have to climb all day and everyday from here on out.

That is not easy for me. I’d love to tell you that I follow some programme on how to maintain my peace but sadly I am still a work in progress. I am frustrated sometimes that I am limited by what I can do because my daughter has no options for her life. Oh, I’m sure that many people want to hear that it is fulfilling to look after one’s child when they are so vulnerable.

What is fulfilling about not being able to afford all the health care that your child needs? Or not being able to have care options for her that did not include and be limited to my aging mother. I’m human. Of course I want to be able to do something that is relaxing for myself more regularly (like not once a year). But yes, I’m a more than a little tense, when I have to leave Savannah specifically because she has been smacked and teased in the past by those who were trusted to care for her.

The perceived fulfillment of being a primary caregiver to your child in these circumstances is just a like fairytale…pretty story with scary undertones.

So here is what I did. I thought about what I can control and that addressed challenge number one. I can control how the house is cleaned and run. And the first step in that was to get rid of anything that we did not need. This resulted in several bags of clothing being donated to three families. We also gave away some pieces of furniture, toys and ornaments.

Basically anything that was just one more thing to clean but had no functional use had to go. I think I can write a whole series about decluttering……..and decluttering when you have a child that does not know how to cope with physical changes in their home. I won’t labour on this for now but I’ll share this story at another time.

As always my concern is that during these changes I want my husband and children to know that their experiences within this is important to me. Therefore underpinning my decision to work from home was several conversations with them about what it will be like to have me around all the time and what it will be like until I am earning a salary again.

Children can’t always think through all the layers that we adults can see. Sometimes as spouses we too don’t have the same view of our shared life. Therefore Michael and I had to talk through what working from home, and specifically working for one’s self in something as unusual as pursuing becoming a writer and being a paid motivational speaker, will mean for us.

We also extended this conversation in parts to our children. We had to talk through life without a helper and what that meant. It is always a struggle as a parent to know how much is too much for your child. I think in the area of being involved in chores it is especially difficult because in South African suburban households many families have full time domestic workers and many children do not have chores.

I also felt conflicted because Talisa and Eli help their sister with her needs everyday. How then does a parent know what is reasonable to expect from an almost sixteen year old and an all most eleven old with busy scholastic and sporting schedules?

Here is what I learnt:

  • Talisa and Eli do not count what they do for their sister as a chore. They were a little taken aback that I would see it that way. Talisa annoyingly reminded me for the umpteenth time that whatever they do for Savannah is what siblings do. Lesson learnt again for this mama bear: my guilt has no place where love lives.
  • The Super-mum title is not mine and I have to keep refusing that crown. As the weeks progressed everyone settled into having me around but they needed reminding that having me at home did not mean I was available to them as and when they wanted me. Hey, I’ve just clocked forty! I can’t do everything for everyone. So after more discussions I’ve negotiated a trade: a foot rub and cups of tea and coffee, and they can keep the Super-mum crown and all that goes with earning that title.
  • Tears are a part of my story. Sometimes I will cry for all that I can’t be. Sometimes I will cry because life is unfair. Sometimes I will cry because the endless cycle of the same emotional roller coaster is unbearable. But mostly I will cry because I love. I count myself extremely blessed to know that.

These are the tears that make up my crown. I wear that one without any fuss.

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