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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/)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is what I learnt:

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

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

A few weeks ago I came across this infographic from the National Council of Persons With Disabilities which I shared on my private Facebook profile.

The stripping away of the rights of people with disabilities is a lived reality. Whether they experience one or two of the denials or all ten, or more; it is a human rights violation and it is EVERYONE’S job to put an end to it.

So I was pleasantly surprised when two old friends who read that post asked what they could do to make a difference in South Africa to children with disabilities. My answer was simple: listen to people with disabilities instead of deciding for this community what they need. People with disabilities can help us to understand better than anyone what will be the most helpful supports for them. A few days later I was sent information about a joint project by The Solomon Academy and Bishop Bavin School (Bedfordview, South Africa). The Bishop Bavin School Pilot Project aims to educate and accommodate six learners with physical disabilities from sub-optimal backgrounds into Grade six at the school this year.

The learner’s educational plan will be individually designed to accelerate their skill set by ensuring the learners have the necessary technology as well as individual tutoring and medical aid. This project believes that every child deserves the best chance of gaining entrance to university. Furthermore, they aim to increase that number to twelve in 2019.

Now that’s doing something to put the power back in the hands of these learners. This is presuming competence and having faith with works.

The Solomon Academy is also running the Wheelchair Basketball Training Centre Rollout project at the school. Learners will acquire the skills needed to play and compete but the project needs a building to house the court, accommodation for the learners at the school, equipment and more. The aim is to house 40 children in the school by 2020 who will be part of this project. For international funders, this is a great opportunity to get involved in uplifting South African learners from previously disadvantaged backgrounds as well as aiding in furthering the policy of Inclusive Education. A capital prospectus is available for review for this project on request.

If you are like my two friends who want to make a difference, a REAL difference; then please speak to your places of employment about contributing towards a bursary or bursaries for the learners. Companies will qualify for B-BBEE points in either the Skills Development category of the new B-BBEE Scorecard or in the Socio-Economic Development category of the Scorecard. There other financial benefits for individuals such as tax rebates in terms Section 18 A of the South African Income Tax Act. Simply put you can get money back from the tax man when you donate.

It’s a win-win situation both for the learners, the school and for corporate and private South Africa. If you can’t contribute financially, there are other opportunities that will enrich your life even more than what you will do for a learner at the school, such as joining the volunteer program.

To help a child to get an education is the greatest gift you can give; especially when that child due to disability might otherwise be denied access to an education. Let’s stop throwing a pity party when we meet a person with a disability, and let us genuinely help to change the course of a persons life.

Have a chat with Andy Fraser or Quentin Robinson of The Solomon Academy to find out how you can help either with the Basketball initiative or with the learnership programme.

Andy Fraser 083 326 2928 or email andy@solomonacademy.org.za

Or

Quentin Robinson 083 446 6411 or email quentin@solomonacademy.org.za

or Donate to

Bank: S A Bank of Athens
Account number: 3000 000 4682
Branch code: 410506
Account Name: Bishop Bavin School
Reference: Solomon Academy

Here we are two days before Valentine’s Day 2018. The invites for our Valentine’s Day party (to take place on Saturday) have been sent. The party games have been arranged. The list of to do’s is growing smaller. (Just remembered I didn’t add *Get Eli’s gift to the list*. Must do that. List growing longer.)

Oh, and before you get comfortable please get a cuppa of your favourite something because I think this post is a little longer than usual.

So Michael and I have never been big on Valentine’s Day as a couple but we’ve indulged our children, especially as it’s been a big fundraising event in their schools over the years.

For the past couple years, we’ve made a big deal of calendar celebrations for Savannah’s sake. She misses the excitement of how schools make days like Valentine’s Day fun. Since she is no longer part of school or any organisation that would be suitable to her needs, we have tried to recreate the events she most enjoyed.

Our close family and friends are quite something and attend Savannah’s parties with their great energy and love. Savannah has a splendid time and replays those moments in her mind or by looking at photos of the special day for months thereafter. It is these parties that compensate somewhat for all that makes her sad.

What makes Savannah sad? The same things that make any young lady sad. Savannah has given me permission to share this story with you told from my perspective and not on her behalf:

Two years ago, out of the blue after a therapy session, she asked her then carer “Why no boyfriend for me?” My mum who was with them at the time, assumed I had discussed having a boyfriend with Savannah. She told Savannah it’s a good idea to discuss it with mum and dad.

I hadn’t had a conversation about a boyfriend with Savannah so when my mum told me, I had no idea where that was coming from. It was hard to hear when my mum also said that Savannah was just unusually quiet that afternoon.

The same evening as Michael and I cleared up the dinner table, we chatted with Savannah about her question. What ensued was one of the greatest heartbreaks I’ve ever known.

Savannah repeated her question “Why no boys like me?” Michael said because most boys, lots of boys aren’t nice enough. He told her that we don’t know why boys were so silly but that she was always going to be our wonderful, beautiful, special lady and we loved her so much. He told her that Eli and her uncle Darren and he would always protect her and make her happy. She said flatly “No boy look at me dad.” I think Michael’s heart broke in an unrepairable way that night.

I tried to make light of it. I reminded Savannah of some of our friends and relatives who are single and happy. I then told her that when you have a boyfriend and eventually a husband, you have to do crazy stuff for them like their laundry. And that’s gross. I heard myself giggle and say I don’t want her to have to do stuff like that. And that guys are more trouble than she thinks.

I sounded calm and light hearted. So I thought. But I was trying to fight back tears. Later I thought off all the things that might have been better to say, but when you feel like the blood is draining out of you and recognise the angry screams you are trying to block out are your own silent screams, nothing I said would have made her feel differently or would have made me handle that evening any better.

Savannah wheeled herself to her room, still quite down. A few moments later we heard her play our wedding song “Paint my love” by Michael Learns To Rock. Michael and I were stunned. She never played that song before. Then we heard sobs.

I’m very brave when my children need me but that night I couldn’t see her like that. I went to my room as Michael knocked on her door and she told him he could come in. He sat with her for a while while she cried. Then she said “Can’t help me dad. My heart broken. Me be alone now.”

Michael helped her into bed then with a deep sigh, he came to bed. We both just lay awake unable to say anything that would make sense of the evening. Wrapped in all those diagnosis, was still a young woman who just wanted to be like every woman:in love and happy. Where was that darn Cupid and is there an arrow aimed at someone for Savannah?

But the world’s definition of beauty and love doesn’t look like our daughter Savannah. It does not help Savannah that any opportunity to make friends independently of Michael and I is also very difficult to organise.

Savannah can’t attend any adult community day facility because nothing is within reasonable driving distance. Mainstream community groups like youth groups aren’t an option because it would mean that Michael or I have to attend because people generally don’t have the time to invest in getting to know her.

Her being in a wheelchair, having difficulty in making herself understood to unfamiliar people and being autistic is just beyond the abilities of most people to comprehend. Rapunzel’s Tower, Sleeping Beauty’s curse and Cinderella’s wicked step-mother would have been far easier for us to deal with than society today.

For our daughter no Fairy Godmother or Knight in shining army will be arriving to make her the Belle of the ball. People aren’t teaching their children that it really isn’t an imposition to spend a little time with her.

Moreover if they did, I’d be afraid because we’ve already been subject to other parents mimicking her speech in jest or repeating her phrases thinking it would be funny to Savannah too. Not funny. Not at all.

So here we are. We celebrate the things that make her happy. We accept what is true for her and what is true about the world we live in. We don’t like it but we make what is in our control… SPECTACULAR for her.

Valentines Day is going to be awesome for Savannah. Later today she and I are going to get her new red clothing for the party and an Alice band. This year she wants an Alice band. She has already made a special gift for her sister and then she’ll work on her brother’s gift….because that’s LOVE. She knows that better than most.

“Love is patient, love is kind. Love always protects, always trusts, always hopes, always perseveres. Love never fails.”
Excerpts from 1 Corinthians 13.

 

In my previous post I shared that our family sets goals at the beginning of every year.

Life is unpredictable and a little too tough at times, so it helps us to place some anchors into our dynamic especially for the children. One of those anchors is to have a great go-to song to carry us through the year. For those days when life doesn’t make sense: when our children have to cope with twists without mum and dad because Savannah is in hospital, when we have to say no to a necessity that is unaffordable, when we can’t understand Savannah, when people are mean, when we feel exhausted and sleep doesn’t fix it, when we need to escape from reality…we simply turn up the volume of our favourite song.

This year, how could our theme song be anything other than “This is me” from the soundtrack of the Greatest Showman. Wherever you are right now, turn the volume up and play this song.

 

[youtube https://www.youtube.com/watch?v=CjxugyZCfuw?rel=0&w=560&h=315]

Be you.

YOU are meant to be!

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

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

I don’t believe in assuming what Savannah might be thinking, but just as I imagine what I’d like Talisa or Eli to think about me, sometimes I imagine what deeper conversations are denied to Savannah and I because of her disability.

“I know different” by Tricia Proefrock helps my imagination and lightens some of the burdens of my heart. May it do the same for those of you who walk the same path. And may it help you to be Different to us if you are not on this path.

I KNOW DIFFERENT
by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Desirae & Savannah

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