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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.

A family holiday

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.

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 Talisa turns sixteen years old. Where did the time go? As we reminisce over the last sixteen years, I’m thankful for so much. Mostly I am thankful for the special relationship that Michael shares with Talisa.

Few fathers understand how to be a dad to a daughter in the different phases of her life. Michael was raised in a very conservative family who believed that wearing dresses, amongst other patriarchal ideas, was how a women showed her dignity. The focus of what made a strong, courageous woman was placed on all the physical aspects of being a woman, and not on what counted….a woman’s heart, mind and soul.

Far from his conservative upbringing, Michael has raised his daughters with the freedom to express themselves and with the confidence in knowing that nothing they do will ever change his love and commitment to them. They are his greatest delight and his deepest heartache as he mourns silently all that Savannah will not experience in her life as a woman with a disability.

From the softness he shows his daughters in so many ways; to indulging their musical tastes; to patiently waiting outside change-rooms while they try on clothing or can’t decide what colour blusher to buy; to waiting while they take over the mirror in our bathroom; to accepting that he will buy hair bands and lip glosses far too often; to sitting up at night until Talisa completes her homework: Michaels’ heart has completely been flooded by being a father to his daughters.

When a girl child is honoured and respected by her father; when she is made to feel capable, and still has a safe place with her dad to be vulnerable; she becomes the most remarkable gift he can ever give the world. A women who is whole.

Today as we celebrate Talisa’s sixteenth birthday, I am so emotional remembering the day she was born. I remember looking at her in my arms and telling Michael that he need only remember two things about raising a daughter:

The first is that you are guaranteed (for the most part) the first eighteen years with them until they become independent. That means only eighteen Christmas mornings when your children are all yours. To me if an average lifespan is seventy years then eighteen seemed like just a drop in our entire lives. So Michael and I agreed to do our best to make those eighteen years as amazing as possible.

Eighteen years where we will hold every moment with tenderness and gratitude before it slips away.

The second piece of revelation or advice if you will, that I gave Michael was don’t ever, ever let your daughters down. Never. Daughters will need their fathers because when you don’t have a dad, the world thinks nothing of breaking you. It knows you have nowhere to go.

Be the dad whose daughters don’t have to look for love in the wrong places or test life to figure out what Love feels like. A strong, capable women already knows what Love really is because she soars from the shoulders of the mighty man who raised her. And when she needs a soft place to land, it is usually right back in her daddy’s arms.

Today as Talisa turns sixteen she makes us so proud to be her parents. She is a remarkable sister, a genuine friend, a blessing to her grandparents, and in so many ways she is both mine and Michael’s ‘right hands’. She is my delight and her fathers greatest gift to the world.

Happy Sixteenth Birthday Talisa. You will always have my voice in your ear praying for you and my hand in yours whenever you need me. So too you will always have your dads’ arms to hold you and his shoulders to soar from. When the time comes for you to soar, don’t be afraid to fly high my darling. The view will be spectacular.

Never forget why we chose your name. May it be a reminder that God is always with you. We love you.

(The meaning of the name Talisa” is: “Consecrated to God”.
Categories: Hindu Names, Indian Names, Sanskrit Names.
Used in: English speaking countries, Hindu speaking countries.
Gender: Girl Names.
Origins: African-American.https://www.thenamemeaning.com/talisa/)

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.

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