Love never fails Archives | A Million Beautiful Pieces

Disability Advocacy September 27, 2019

The Pen Is Mightier Than the Sword, but Kindness transcends them both

I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece.

As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability; it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is Grace that keeps filling my life with Faith, Hope and Love.

Then there are those who are embarrassed that now they know what they would rather not know, and try to make me feel bad for writing it. I can’t help you besides suggesting that you stop reading my work.

I am almost forty-four years old. Of that time I’ve been a mother for twenty-five years to a child with a disability, and two more children while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.

That’s twenty-five years of facing social systems where it has been inconvenient to include our daughter with a disability. Twenty-five years of reading cues in social gatherings of whether we are wanted or not. Or how long before they push us aside when they realise that Savannah is a 24/7/365 commitment for us?

Twenty-five years of giving people the benefit of the doubt, only to have Savannah made fun of dismissed by those who were entrusted to care for her. Twenty-five years of having to deal with mothers who let me know how grateful they are that their children aren’t like Savannah. There’s that pat to Savannah’s head and pronouncement that ‘They are such a blessing.’ I keep thinking to reply ‘I hope God blesses you as much as He has blessed me.’ But my fear of extending the unwanted encounter holds me back.

Twenty-five years of still having days when I go to bed weeping, frustrated or lying awake at night wondering what will happen when Michael and I are no longer here.

So why do I keep writing about the hard stuff?

Simply because I am still inspired by my children to leave behind encouragement and evidence for them to know how hard we tried. I write so that my children will know I tried to change hearts and minds, and that being kind is still worth it. In my first edition of this post, I wrote that gaining acceptance within society was the reason I wrote. Now, in the aftermath of the Esidimeni tragedy, and the continued lack of services and support our community faces, I also write to remind other families that we are not alone.

While we bear up against it all, we can be united and be a source of comfort, hope and information.

Like the way, my children comfort each other when they are made uncomfortable because their sister is different. It’s a sad day or a glorious one (whichever way you choose to look at it) when your children can explain the love of God in spite of the callousness of other people.

Sometimes callousness takes the form of being given unsolicited advice. Other times it’s to point out to us, in Savannah’s presence, that God can do amazing things and He will make Savannah whole. I cry every time we hear that because of the severe lack of insight that statement contains. The testimony of God’s sufficiency to my family does not need to be proven by Savannah being made into anything other. His sufficiency is proven in our diligent commitment to her care and well being, even on days when we are overwrought by her complex and beautiful mind, and that we do it again and again. His sufficiency is when Savannah comforts us, and when she laughs and loves freely and without restraint. That’s a testimony of faith and sufficiency.

After twenty-five years of this, I’ve learnt that many people need Savannah to be fit into their limited understanding of God’s goodness for THEIR faith to be affirmed. It feels like they see Savannah as broken and someone who should be “fixed” to match their idea of a whole person so that they can feel affirmed that God is good.

From left to right: Talisa, Eli and Savannah

But in our home, we know a secret. Savannah is a remarkable beauty; fearfully and wonderfully made like her siblings. While the world is designed to forsake us, judge us, dismiss us, persecute us, and remind us how we can’t fit in with their carefully organised systems; we know a God who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Kindness. A God to whom my children speak to like this:

‘Thank you, God, for the patience you give us. Now please can you give the same to the parents who are racing in school traffic when we are all going to the same place at the same time.’

Or‘Lord, thank you for Savannah. I realised today that she does an amazing thing. She can still choose people who won’t choose her’.

Or Savannah’s prayer, ‘Lord, Thank you my life. Please help lady with walker at church. I feel sorry for her. My dad is sick. I am stressed about him. Look after my sister, my brother. Help my mum. Amen.’

When ignorance pierces my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different:

I DO NOT CRY FOR WHO YOU ARE(Author Unknown)

Tears have stopped falling
On the fragments of my dreams,
I no longer mourn illusions
Of yesterday’s reality.

Tears that fell so often,
Almost every day,
But that was when the rain poured down
And the sky was always grey.

Now I feel the sunshine,
And the sky is blue again,
I’m living on a rainbow,
But I still cry now and then.

I do not cry for who you are
Nor what will never be
My pain’s in the confusion
And the vulnerability

My frustration’s with a society,
That cannot see you’re mine,
My anger’s to the ignorance,
That will never try.

My fear is from uncertainty
That increases over time.
My guilt is deep inside my soul,
Each time they make me cry.

I do not cry for who you are
Nor what can never be
I cry because they look at you
But never really see

They don’t see how the differences,
Could make the world complete,
They can’t all live on rainbows,
It’s just not meant to be.

You are not responsible,
For all that we’ve been through,
I would not change you for the world,
I would change the world for you.

Father, forgive them for they do not know what they do. Luke 23:34

With all the Love that I’ve found in the Million Beautiful Pieces that make my story, Desirae

A Million Beautiful Pieces July 1, 2019

Parenting: Is it unfair to other siblings, when one child has a disability?

This is my first blog post in three months. Time is a monster in my life but today, I had to write this, as short or long as it may turn out to be. In a time when parenting has become a central focus for many families, it is appalling to me that many people hold to a belief that in families where a child has a disability, it will always be unfair to the siblings of that child.

Now before I offer some insight into why this blanket opinion is appalling; let me acknowledge that there are families where siblings of a child with a disability have complex emotional needs. Their parents may not be as available to them as they might be to the child with a disability. Consider the myriad of demands on parents in typical parenting units. Can you only imagine what the demands are for parents who parent children with different needs? If you can’t imagine it, then let me offer this first piece of advice here – please do not make any comments or assumptions about what happens in families where disability is part of the dynamic. Zoe Gow’s shares her insight about this – Siblings and special needs: the life of the other child.

I can stand on my soap box here and rant about how if you are not raising a child with a disability, you cannot know how hard this is. You do not know what never-ending exhaustion is nor the mental and emotional stamina we must have everyday to be consistent in therapies and medications while also often trying to keep up with a mind that dances to a tune to which the lyrics and harmony are unfamiliar to the parents. And just when we think we have figured it out, the tune changes again.

Michael pulling Savannah up some stairs so we can browse a bookstore together.

From my soap box, I can also add to my rant that you cannot fathom, the love that keeps us doing this again and again, everyday.

But I won’t stand on my soap box to wax lyrical about that. Instead, I want to offer a different perspective from my own true story:

I am a survivor of childhood and teenage trauma, sexual abuse and domestic violence. I was a mother at eighteen years old to Savannah who is autistic and has cerebral palsy, and other stuff (her description of herself). I was made to feel ashamed by my family and my community because I had fallen pregnant out-of-wedlock, and also that my daughter had a disability.

Savannah taking a short stroll with me .

When I finally got my happily ever after, my parents decided to end their marriage as the sun dawned on mine. While I tried with all my might to bask in the glory of my husband and the fact that Savannah had a dad, the embers of my parents dying marriage caught at my soul and burned me. At the same time I was trying to recover from the loud ringing in my ears that announced that Savannah was “severely disabled” and had no hope of a future. I’m guessing you are piecing together by now that I must have had a couple serious emotional problems. I did but the demands placed on me meant that there was no space to acknowledge my own emotions about both events.

Still I wanted to have another baby. Yes. I selfishly wanted to know what it would feel like to have a child who was more like what I thought a child should be. But people would not let Michael and I have that. When we were pregnant for Talisa, we were told that it was unfair to bring a child into the world who would be burdened with Savannah someday. I was told to limit the time the new baby spent with Savannah because she would pick up Savannah’s “bad habits”.

Later when we had Eli, we were told thank goodness we had him, atleast Talisa will not be alone. (Huh,she wasn’t. She had Savannah.) We were asked how would we manage financially and if we thought about how much Talisa and Eli will be deprived off because Savannah will deplete us.

And while I would not describe our financial situation that way, it wasn’t untrue. But it stung that all people saw was a thing who was here to destroy our lives. They did not see a person who deserved dignity, a good quality of life and who had dreams and hopes for herself. Just because her physical form and her mind had some variants to the rest of us, they wrote her off as no one and nothing. As if no good could come from her. An inconvenience.

Eli asleep on Savannah’s lap while travelling to our holiday destination.

Now all these many years later, Talisa and Eli have actually been “burdened” to care for Savannah, within their capacity. And shocker alert…there are days when Savannah is burdened by the bustle of two neuro-typical siblings. Their unstructured routines mess with hers and they encourage her to do crazy things like play cricket and then horror of horrors they want her to go out and mingle with people. They share insane plans with her about when Talisa has her drivers licence and how they will all three go out partying till late at night.

Oh and yes, those people were right. Our finances have been depleted because caring for someone with a disability in this country is not considered a human right but rather a fantastic opportunity to make money off desperate families who want to ensure their person with a disability is not deprived of care, medical attention and necessary supports. So we can’t give Talisa and Eli everything their hearts desire. However, often what their hearts desire is not what is necessary for a happy childhood. I sleep easy when I remind myself of that.

But maybe all those people were right. This life has been unfair to Talisa and Eli.

Savannah, Talisa and Eli on a recent visit to a Basothu Village.

Then I ask, what of the unfairness to the girl who was molested, watched domestic violence and adultery rip her family apart before she was thirteen, who was responsible for her parents marriage both in its existence and it demise, who was a cutter and a suicidal teenager and who understood guilt, rage and shame as normal. Why had no one told her parents that it was unfair to raise children that way?

Quite simply because somewhere we have lost our way and have aligned good parenting to a standard of living that is defined by where we live, what we drive, where our children go to school, what brands we wear, what technologies we own and what level of entertainment we can afford. Good parenting is none of that. It is very simply having a relationship with your children where you see each other, honestly and openly. The CNN reporter Anderson Cooper said of his mother Gloria Vanderbilt after her passing “I knew her and she knew me. And there is great comfort in that”.

Now I am no expert, but if my heart is my guide I’m going to go out on a limb here and say Michael and I have done something right in how we fostered our children’s relationships with each other. Their lives speak these truths:

While I talk about Talisa studying away from home after her school career ends and if that is right for her; she is in no big hurry to leave home. People who have had this discussion with her are always touched by her contentment and that her personal plans do not include fleeing from her sister and us.
Both Eli and Talisa’s plans include having a family. They talk about marriage and children so matter-of-factly and with such pride, that I’m the one who is stunned wondering what is wrong with these children.
They frequently joke with each other and with Savannah about where Sunday lunch will be held when they are adults, and which of them will take Savannah shopping to get the salad ingredients. They fully expect her to contribute to the lunch by making a salad. You know if she doesn’t, it would be unfair (snigger).
This morning I overheard Eli telling Talisa, that he was up playing on his PS4 till late last night and he heard Savannah call. He said “I was glad to have heard her before dad, because atleast I got to her before he awoke. She just needed help to turn over.” When I approached him about it, he said: “Mum, stop making it weird. She is my sister. And I’m not emotionally scarred from helping her.”

So maybe Talisa and Eli have grown up too fast. Maybe they have more responsibility than they should. In light of what many children are allowed access to on television, the internet and in their gaming, as well as that many children are still living with domestic violence, narcissism and so much worse; I’m going to say that developing selflessness, compassion, kindness, empathy, loyalty and sibling love that no one will ever understand, is not the worst thing that can happen to my children. And no I don’t think it’s unfair to them at all.

A Million Beautiful Pieces March 15, 2019

Did Love Save Us When The “Worst” Happened?

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?

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?

A Million Beautiful Pieces December 31, 2018

A New Year Has Arrived by Erin Hanson

On this last day of 2018 I am filled with gratitude as I recount the amazing year I’ve had. Turning forty years old has been my year of re-awakening, re-aligning and re-learning. Thank you to the people who blessed my life this year, especially to everyone who follows A Million Beautiful Pieces.

Your likes, shares and recommendations helps to put Faith, Hope and Love into the world. Without your support, I would not be able to use my gifts and my story. You are the Wind Beneath My Wings. Together we will soar through 2019 and make it a year that will count.

I’ve been saving this poem by Erin Hanson just for today. You will want to save this to remind you not to pick up again what you must leave behind in 2018.

Take down all your trouble
And wrap up your regret
Tie them to the rays of light
The sun sheds as it sets.
Whisper all that was
To fleeting seconds as they pass,
But hold onto your hope
For something new is here at last.
Beg your own forgiveness
And then grant it in one breathe,
Lay the year down softly
As it waits to face its death.
Then sit with eye turned skyward
As the night-time comes alive,
All that’s been is over
And a new year has arrived.

-e.h

Happy New Year, my friends. Let’s make 2019 count.

A Million Beautiful Pieces December 27, 2018

My Greatest Gift This Year: Journey To You (part one)

Have you ever felt that you needed the world to stop spinning for five minutes so that you can get off, catch your breath and then jump back on again? I felt that way for a major chunk of my life. Life just kept happening and the resources that I depended on began to wear thin.

Those resources were all the voices that took up space in my head and it was the reason behind my drive. It did not replenish already depleted resources nor did it nourish me so that I could keep going. It just drained me to the point that I had no will to pursue my own dreams and aspirations. Yet I did not know how to replace those resources or even if it could be replaced.

I just knew that it was not serving me.

Myself with Deon Groenewald NLP Coach and CEO of Journey To You

These were my resources:
“You are the eldest, you must hold it together”.
“You are responsible for this. You must fix it.”
“You must look after your parents.”
“You must be responsible for your parents marriage.”
“Your mother needs you. Your daughter needs you. Your husband needs you. Your children need you. Your friend needs you. Your job needs you. This organisation needs you. Your church needs you. You must take care of all this.”
“You are responsible for your marriage.”
“You know that when there is a child with a disability, the marriage is under enormous stress. You must make your marriage work.”
“Your other children will be deprived because they have a sibling with special needs. You must make sure that you don’t neglect them.”
“You are the woman. It’s on you to make it work.” (‘It’ referring to anything and everything about life in general).
“You did this. You must fix it.”
“You must hold the family together.”
It’s exhausting just writing that.

Then fast forward to a few weeks ago when my brother Darren called me after he completed a life coach course at his place of employment. The life coach who conducted his training was hosting one final course from the 19th to the 21st December and Darren was very keen for me to participate in this.

Now I’ve heard of a few people who are really good at teaching about self-care or self-help but nothing ever resonated enough with me to attend any course. I also need the guarantee that when I spend money on myself that could be used towards my daughter Savannah’s care, the value must be spectacular.

Past experiences also taught me to stay away from people who need to ‘give me a word’ or promise to ‘heal my life’ or ‘know a lot about how people think’. The most well-meaning intentions by the most passionate people can cause more damage than good. When a pastor, coach or counsellor does not have the skills, understanding and compassion to help a person through an issue that could potentially cause that person to break, they actually have no business engaging an individual on such a personal level.

What was interesting to me is that my husband shares these same reservations as I do, yet it was him who finally convinced me to register for the course, knowing full well that I would be away from home from 9am to 9pm every day for three days.

On the 19th December as I drove to the course, I was ready to be open to the experience and not to show up for anyone else but myself. I have a reputation of ‘mothering’ people wherever I go and I’m known to be an extrovert. This time I just wanted to be true to what I was feeling during the process. Yes, that it’s..I told myself ‘Trust the process’.

The process I was to trust was ‘Journey To You’ headed by renowned NLP Coach Deon Groenewald. NLP is an acronym for Neuro-Linguistic Programming and Deon has earned himself a reputation as a Master of his field. ‘Journey To You’ is a three-day intensive journey of transformation developed by Deon over a ten-year period. It is designed to help people to effect change from a deep place inside themselves that results in an amazing personal journey.

I knew none of this when I arrived at the course. I did not read the course details because I did not want to go into my self-defence mode. As an over thinker and someone who prepares for every possible outcome, I wanted to let the process guide me instead of the other way round.

As I write this I’m incredibly overwhelmed by what took place over the three days. I learnt so much about the science of how the brain deals with information and how that affects our decision-making process. The pivotal points for me was in understanding my conscious mind and my sub conscious mind, aligning my first reaction and my second reaction, learning how to plan for my goals and in learning to plan a celebration for myself when I achieved a goal.

More than learning these pivotal points in the context of the large group, I was also assigned to a life coach Maligay Govender. Each participant was part of a smaller group led by a qualified coach. It was in my small group that I was taught how to apply what I learnt in the larger group. Maligay made the principles and techniques real for me by guiding me on how to integrate it into my life plan which I had begun to fill out from the morning of Day One.

As I write this and recount the timeline exercise that she did with me, I am filled with emotion. Timeline was the most vulnerable I’ve ever been until then and it was the first time I allowed myself to remember who I was as a child. I actually was able to visualise myself at four years old and to reconnect that person to myself today.

Years ago, my then pastors wife asked me to describe myself. Who was I? It took longer than a month for me to give her an answer that did not include daughter, mother, wife, sister, friend and all the roles I fulfil. When I eventually did give her an answer, I gave her a scripture but it did not describe me. It described someone I wanted to be. As Maligay finished the timeline exercise with me, I realised that I could finally answer that question without all the roles that form part of who I am.

I knew who I was without all the events that shaped me. I liked that person. And I wanted to live with her innocence and her passion again. It was so powerful that I cry even now as I understand what a gift Maligay helped me to find within myself.

Maligay and Bharat Trikam, a fellow change maker

On Day three of ‘Journey to You’, I knew that the moment had come for me to commit myself to a process of understanding how to listen to my own authentic internal voice. With the entire larger group of participants in the room, I courageously volunteered to allow Deon to take me through this process.

I am not going to give the details away of how that was done because I fear I may reduce it’s impact and beauty here. I will share this:

There wasn’t any music to influence what happened.
There wasn’t wild applause or coercion from the other participants.
There were many people in the room including a film crew as this was being recorded for television viewing. Yet the room felt that it was filled to every corner and every space with nothing but goodwill and love.

Deon was respectful of me, never asking me to share more than I was comfortable to share. The key though was that his process did not need for me to bare my soul so that he could rescue me. He only needed me to trust the exercise and to trust myself. I walked off the stage without the anger, resentment, fear and oppressiveness that I carried with me for a long time about my childhood. I walked off that stage with the door to a part of my soul thrown wide open and a feeling of self acceptance, contentment and peace.

Myself and Nadia Marillier, a fellow change maker

At the beginning of this year, I wrote that I entered a Women Empowerment Programme as a gift to myself http://amillionbeautifulpieces.co.za/2018/03/09/entering-competition-title/ . I wanted to give myself one year to experience life on my terms. I resigned from that competition because I realised early on that it was not what I was looking for. As I write this, I feel humbled by how God works. Just before the curtain dropped on 2018, God remembered me and He gave me my ‘Journey To You’.

My heartfelt thank you to Deon Groenwald, to Maligay Govender, to all the coaches; and most especially to my fellow course participants with whom I now share another beautiful piece of life with.

I am blessed I am.

I am grateful I am.

I am Desirae I am.

There is so much more I want to share, so look out for part two of My Greatest Gift This Year.

Disability Advocacy November 20, 2018

Parenting: Being Courageous even in Uncertainty

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Being courageous even when our hearts are uncertain.

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

My Story April 10, 2018

The Anniversary Present I Can’t Stop Crying Over (it’s a good thing)

On the 7th April 2018, Michael and I celebrated our seventeenth wedding anniversary. Under different circumstances; we might have been the type of people who absolutely made a fuss about our most special day. But we are living in this life and when we got married the honeymoon literally ended when we returned home to the news that my parents marriage was ending.

A year later it felt awkward to celebrate our first anniversary as my mother moved out of her home and the reality of her being a divorcee dawned on her. Michael’s parents also thought that April was the best month to pay us a visit from their home in Kwa-Zulu Natal. My mother lived with me at the time. While it seems logical that I had three babysitters available for Savannah, she was not the reason we did not celebrate our anniversary.

While trying to get our minds around the fact that Savannah was a person with a disability; it was more complicated to navigate being newly weds while coping with our respective parents and their issues. I suppose in hindsight it wasn’t as big of a deal. Yet there are times I wish for a do over. I guess we all do at some point or other in our lives.

As the years flew by the toughest challenge in our marriage was being able to provide financially for a child with a disability. Therapists and doctors charge more than the medical insurers rates for their specialised services. Medical insurance companies have water tight clauses which leaves families with little room to manoeuvre when funds are exhausted. For many families like us funding the specialised therapies our children need usually results in our medical aid funds being exhausted by March of each year. It was difficult to work on a budget when our child needed therapy, special medical tests and special doctors. As parents we tried our best to provide for all Savannah’s needs as well as for Talisa and Eli too.

So celebrating anniversaries often didn’t make it to the top of the budget.

There were three years when we actually went away for the weekend. They were a good few years apart and were much appreciated. As we have grown older the celebration has become more about spending the day at home with the children and sharing a special lunch which my mother usually prepares.

This year Michael and I planned to go for a mid-afternoon late lunch to a nearby restaurant and that would have been the extent of our celebration. However on the Friday afternoon before our anniversary, we were told by our children that they planned a surprise for us for the next morning and we were to wait in our room until they came to us.

Promptly at 7:30 on Saturday morning our three children entered our bedroom with shouts of congratulations and gleeful singing. Then began what I can only describe as AMAZING.

Talisa and Eli explained to us that they wanted to do something for us that encapsulated what we had taught them. They said that they knew we made many sacrifices for our family and they wanted us to know they appreciated it. They practiced a line for Savannah to say: “Happy anniversary mum and dad. We love you”.

So began the morning. First Micheal’s left hand was tied to my right hand with a ribbon that had embroidered red hearts on it.

Then we were given our first clue. The clue was written on a square-shaped piece of paper that had the letter “O” printed on the flip side:

“The Roses are Yellow,

On this special day,

Where two hearts became one

Are captured in a frame”.

The clue led us to a framed picture of Michael and I on our wedding day that sits on my bedside table. Working together with our hands tied, Michael and I found our second clue hidden inside the frame. And so it went on, with us working out clue after clue.

Our children had written clues that took us to items or places in our house that meant something to us. Eli’s blue teddy bear that we bought when I was pregnant for him held a clue.

Savannah’s wheelchair held a clue that reminded us of her eighteenth birthday when she received her “Audi” aka her wheelchair with pink tyres.

Our bookcase held a clue and the clue that led us there paid homage to our favourite authors.

The funniest clue was the one on the bookcase. We had to sing aloud to one of Savannah’s childhood nursery rhymes. The clue told the true story of Savannah’s fish tank which was where the next clue was hidden:

One, Two, Three, Four Five

Once Vannah bought some fish alive

Six, Seven, Eight, Nine, Ten

Then somehow they died again

Why did they die so soon?

Because the water was not cool,

Can you guess what it is?

If you can then go to it.

All in all in there were seventeen clues to represent each year of our marriage. Each clue touched our hearts more deeply than the previous clue. When we had collected all the clues, our last task was to flip the clues over and put together the words it spelled. I get emotional just writing about it now.

Our children said when they think about us and as they come to understand what life is about; they realised that we have taught them that no matter what “Love Never Fails” 1Corinthians 13v8. That was what the seventeen clues spelt out: “Love Never Fails”.

Michael and I were simply amazed. They planned this for three days; working on the clues and putting it all together. They woke Savannah up that morning and helped her with her morning routines. I had no idea she was even awake when we were waiting in our bedroom because they were so quiet.

It was just the sweetest and heart warming morning all wrapped into one. On that note about sweet, all three children also prepared breakfast. They made home-made waffles with bacon and maple syrup:)

Could it have gotten better than that?

I think if you as parents take anything from this post, let it be that all our children are learning the most important lessons of life from us. As parents the sacrifices that we make will hurt us a bit. But to know that we are raising children who are kind, empathetic, generous and loving is worth the sacrifices. I would give up all the anniversary celebrations we did not do, again and again for this past Saturday.

Talisa and Eli aren’t deprived or less fulfilled because they have a sibling with special needs. They aren’t angry that life for them means we have to go at a slower pace. They understand the preciousness of the moments that make life worth living. They aren’t afraid to love and to live.

What more can we ask for? As parents and as soul mates, Michael and I can say our hearts are so full.