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A Million Beautiful Pieces April 7, 2020

Love is strangely complicated and yet purely simple at the same time

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 19^th 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.)

A Million Beautiful Pieces November 7, 2018

I Am Weighing In On The Weight Issue

It’s the most wonderful time of year. Or is it?

Are you dreading the holiday season? Seeing family or friends who you would rather not see? Having to attend or host dinner parties you would rather not be part off? Trying to accommodate your spouses’ family while your own family have their expectations of you?

Maybe you already know that financially this is going to be a tight Christmas, and you can’t say that out loud without feeling like Scrooge? Or maybe you have gained a few pounds this year and the thought of going home for Christmas when you know that aunty “I must comment on your weight” will be visiting; is petrifying you.

And that is where I will start off this series of blog posts as together we wind down this year. For today I want to share some thoughts and ideas about how to deal with unsolicited comments about physical appearance. Over the next few weeks we will get to the other stuff like depression, isolation, and how to look after yourself when your life doesn’t look like the Hallmark Christmas Movies.
But for now let’s just weigh this important issue.

Firstly, why oh why is this even a topic of conversation? I’ve never understood why I’ve had to hear comments like “Oh my word, you are so fat” or “That dress is lovely but sleeveless is not right for you. Your arms are too big.” Or the other way “My word, you’ve lost so much weight. Is everything okay?” Or “I was telling ______________ that you look so much better now that you lost weight. You were looking terrible last Christmas.”

I entered Mrs South Africa after loosing some weight but I was still not exactly a “small” lady.

Why would anyone ever begin a conversation like this? Or for that matter even bring this up in conversation. Its mind-boggling that these interactions are still part of our social contexts when we are living in an age when both men and women have emotional issues that stem from having a poor body image of themselves.

We are taught from a young age to make excuses for family and friends who taunt with their crude comments. We tell ourselves that it is only cultural or that is just the way they are. I will also include here that even negative comments about skin colour, choice of clothing or hair style, comments about how a persons’ body has changed due to pregnancy or after medical issues or actually anything to do with physical appearance of any sort; are simply not topics of conversation at any time of the year, let alone during the holiday season.

Of course genuine, positive comments like ”You look lovely” or “I’m so glad to see you and I love your dress” or simply “It’s so good to see you” are perfectly fine and it makes spending time with our family and friends so much sweeter. When comments are unflattering, one cannot imagine the unnecessary hurt that it causes.

I’ve been in this situation a few times, and one incident is still so clear in my mind. I was collecting Talisa from school when I noticed an old family friend. He was an older gentleman, who I hadn’t seen in years. I was entering the school gate with many other parents when I saw him and I greeted him. He boomed out, “Oh Desirae it’s you. Oh my word. I didn’t even recognize you. You’ve put on so much weight.”

I was stunned to say the least. I had no idea how to respond to this in front of the other parents and particularly as I was feeling really depressed during this time. Savannah was recovering from an operation to her back and there were complications that we were coming to terms with. We were living in an upstairs unit in a townhouse complex. Eli was just over a year old and could not walk up or down the flight of stairs by himself. Everyday sometimes three times a day, I was carrying both Savannah and Eli up and down those stairs.

Savannah and I dancing at her 21st birthday party.

In the afternoons if I had five minutes to myself, I would dish up a large bowl of vanilla ice cream, squeeze a mountain of maple syrup onto it; down it and then continue with taking care of my three children. Hands up mums and dads if you have scoffed an entire box of chocolates or polished a bag of chips while your children needed your care! You know well enough what those days are like.

That time in our lives was so emotionally confusing as we delighted in Eli’s milestone of walking and were equally shattered as we realised that Savannah was losing her fight to keep walking. So yes, I ate the ice-cream and the cake and anything else that offered any sort of comfort. It didn’t matter that everything tasted like ash to me anyway. It was just the way I was coping.

That old mans’ comment felt so cruel and so shocking to my very soul. I felt like a failure: unable to stop the regression that was claiming Savannah’s walking, and unable to keep my weight down. Those words just made me hate myself for not being able to be thin and for not being able to keep Savannah walking. I am generally a practical and logical person but this brief meeting shattered me. And it gives you an idea of how a seemingly innocent quip, can be havoc for another person.

How did I free myself from allowing these shallow comments to hold me hostage in my misery?

*Do you know that you are a child of God and that it’s wrong to disrespect Gods creation?
First, I asked myself are these “weight commentators” that important ? Would they cope with a small percent of the challenges I have lived through? Even if they had their own challenges to survive, clearly if they are making hurtful comments, then their life challenges did not change them for the better. No. You can’t take anyone seriously when they have no depth of character. For myself when I meet people, I see more than a physical form. I see them as a child of God.

*Do you love yourself?
Then I asked myself what did I want? Really, did I want to be supermodel thin and have my body poked and peeled and worked at while Savannahs’ disability changed her body in a drastic painful way? No I didn’t want to look like a supermodel. I wanted to help Savannah to love herself even as her body started to work against her. For my own well-being and for my children, I learnt to love myself irrespective of what size dress I fit into.

*Do you know what a “good looking” body means for yourself?
I also asked myself to define what a good-looking body meant for me? My answer was that I wanted to wear clothing that flattered what I liked about my body without feeling ashamed. Fat arms and all. I also wanted to be able to run down the soccer field with Eli, wear high heels to impress Talisa and still lift Savannah when she needed it. I wanted to feel pretty good with myself whether I was a size fourteen or a size ten as long as I could do those things with my children. Now that would be a body to cherish.

This was the day Eli was selected to play football for the local district.

*Do you have a plan of how you will protect yourself from “weight commentators” this holiday season?
Lastly I asked myself how am I going to deal with shallow, misplaced comments about my physical appearance? The answer was I won’t. If a person is so base as to have the gall to say anything derogatory with the intent to cause shame, then they are not worth my time, my words, my respect or my love. It takes a mammoth task to encourage oneself when caring for a child with a disability. So I will not ever again allow anyone to set my soul off-balance into self-loathing. I do too much in a day to waste time picking myself up off the floor.

If you don’t have a plan to protect yourself, then grab a pen and page, and take some time to answer the *questions above and you will start working out your own plan on how to guard your personal space. That is what your body is. Your personal space. And no one may physically, verbally or emotionally violate your body. Got that?

Once you learn to respond to hurtful comments without feeling ashamed and angry, you will realise that your response will simply be a matter of stating facts. I taught my children how to do this after I worked out how to do it for myself. They know that if anyone dares to cross that line with them by making inappropriate comments about their physical appearance, then they have my permission to shut them down with statements like:
“Wow, that’s not nice to say.”
“You think like that? I’m glad you aren’t my mum or dad”.
“I like myself the way I am. If you don’t like me that’s your problem.”
“You be you and I’ll be me”, or Talisa’s own line said with a huge smile
“I’m fearfully and wonderfully made. I’m okay”.

Oh my friends, this Christmas the best gift you can give is to find your strength, keep your balance and maintain your peace.

Now, I’m off to indulge in a vegetarian hot dog on a buttered white roll with homemade potato chips and caramelised onions. And later while I watch today’s episode of Masterchef Australia, I will devour my Carb Clever Chocolate Bar.

Yum. Yum.

My Story March 30, 2018

An Easter I didn’t ever imagine

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.

My Story January 13, 2018

The Past And The Present Met

It is already two weeks into the New Year and this is my first blog post for 2018. My hope for you is that wherever you are in life today, that this is the year you will know resounding Joy and have boundless Courage.

I learnt alot about that in 2017. I realised that I found my Courage a long time ago but it has taken all of my adult life to find Joy. This holiday season has truly been Joyful which is an amazing description for me to give. Usually I dread holiday season.

As a family with an adult daughter with complex special needs; relaxation and socialising has always been labour intensive which in my opinion, defeated the purpose and left me feeling confused and cross every, single holiday.

Yup, I understood the holiday blues very well.

This holiday season I enjoyed a pleasant, beautiful start to the year on a beach in a quiet seaside town with my husband and children as well as with our extended family. My daughter Savannah still has the same struggles and some additional struggles but what she doesn’t have anymore is a mother who feels overwhelmed and frustrated with life.

I’ve written in a previous blog about how long I battled suicidal thoughts. Even long after I stopped feeling that death was an option, I still felt a deep sadness: a melancholy in my soul, a wish to slip quietly into darkness. 2017 was the year that I understood that darkness and it’s hold over me.

It was the year that I accepted that no one can save me from the sadness but myself. 2017 was the year I became my own hero. I was marked by the frailty of life and touched by the gift of each new day as our family faced a new set off challenges with Savannah.

To that end, my husband surprised us by booking this holiday so that we could make memories with our children and still keep Savannah as comfortable as she needed to be.

Ironically, I was holidaying just a stone’s throw from the home that our matric class of 1995 stayed in for our Matric farewell tour. Being there; seeing the familiar train track we walked along twenty three years ago and the sandy road that leads to the Children’s Home were we stayed brought back memories. The past and the present met each other.

Before that tour I remember how us girls worried if we would be able to fit everything that we would need: like a hairdryer and clothing for every season and occasion! We worried about where we would sleep and if we had to share the bathrooms with each other. Oh horror of horrors for teen girls. It seemed so important back then.

I vaguely remember an evening with a beach bonfire, the dinner hall which I think had pink and peach chintz curtains, an illegal alcohol related gathering and walking along the train track to the mini shopping centre during the day.

I remember how often on that tour and for the rest of the year I felt that I didn’t belong amongst those amazing people. I had nothing to offer this group of confident and friendly fellow students. I deeply admired the few I had formed close relationships with; and wished I could be more to them.

I admired the sets of friends as much as I admired the individuals who made up the sets. But when you see yourself as worthless, you can’t comprehend that you have value.

Throughout the two years that I was at the school I was battling a deep depression. I felt like an empty shell. I felt old and sad. Yet to everyone around me, I was the dependable, responsible, happy girl.

My first suicide attempt was in the November of 1995; the night before my final Afrikaans matric exam. I was found in time to be taken to a hospital; my stomach was pumped and drained and I was made to write the exam. I was dazed and tired but write it I did.

My attempt to end my life was glossed over by my family and I was left feeling guilty for putting them through that. By the next August I had become a mother and a wife, and the sadness intensified with the shame and pressure from my social circle.

Two years later I was a single parent to a child with a disability, a divorcee and working to make ends meet for my daughter and myself. I only faced each day because I was responsible for my daughter. Nothing else. I felt trapped in this world.

This week I heard of the death of a well respected professional in the disability community, and the Facebook announcement of her death had this quote “People do not die from suicide, they die from sadness.” So true.

I remember friends who have left this world by their own hands and how often I have waltzed with suicide and I angrily question that in a time when we know more than we have ever known about emotional well being, mental health and psychology and the importance of support structures…why, oh why do we not see the sadness? What are we missing that it is still so difficult for people to find help and understanding?

It seems that all that’s happening is that we are becoming a generation with intellectual prowess but devoid of genuine sensitivity and care towards each other.

It’s not enough that the British Royal Family have stepped out and spoken about mental health and their own struggles; it’s on us in our homes, in our social circles, in our offices, in our religious organisations who need to open our minds and hearts. We must find our Courage to speak so that no one in our social circles feels so alone that suicide seems to be a reasonable answer.

We must find our Courage to speak about suicide. We must learn to be honest about our own struggles. We should be living consciously that we are part of each other. People are always more important than things. Always.

As I gazed out at the dazzling aqua blue sea and listened to the pounding of the waves on the shore, I was reminded of the pounding of my own heart. I am still here. I learned to live past the sadness and I ended my waltz with Death.

If you feel that life is not worth living, please afford yourself the respect of speaking to someone who understands. You are not alone in this and help is available to you.

Please Stay.

Contact the South Africa Suicide Crisis Line

For a suicidal Emergency contact us on 0800 567 567

24hr Helpline 0800 12 13 14

http://www.sadag.org/index.php?option=com_content&view=article&id=11&Itemid=114

https://www.facebook.com/pages/The-South-African-Depression-and-Anxiety-Group/335962293097734?ref=bookmarks

https://twitter.com/TheSADAG

My Story November 13, 2017

When Love Is Not Enough

Desirae and Savannah I 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.

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.