Tag Archives: cerebral palsy

end of the year salti crax……

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Great that Summer has shown her face for more than 3 days. Another stunning sunny day.

So horray (I hate the word hurrah), for warm weather and the promise of lazy days in the pool, sundowners, sunburn and cheerful dispositions. and of course work in between.

Jingle bell rock, the smell of pine shedding on my new carpet (well, newish), the promise of a holiday for two weeks away from the same mundane-ness. I love everyone around me, but it’s great to have a break. To just re-group, chill and smell the sea. Those of you that live close to the sea, probably don’t realise the healing properties of the sea, I suppose just as I don’t realise the full healing properties of wide open spaces, our view of the valleys and mountains in the distance, of thorn trees and aloes, of blesbuck and Cape Vultures.

I’ve stagnated a bit on the Christmas present front and need to get my backside into gear.

One of my mom’s friends, adult children have discovered that their child is cerebral palsy. My mom is now the expert and is telling me what she told the friend about all the stages  I went through. You know, when you discover the cerebral palsy thaannnng. Well, I must say, I never knew I went through all those stages. If you detect an underlining undercurrent of annoyance, yes, you’d be correct! It’s still a raw emotional thing for us and remembering that time in the black whole of Calcutta (do you remember Auburn Alice?) is sort of stepping over private unchartered territory. surmising and bringing it up may result in a snapping puffadder. (that’s assuming puffadders could snap)

Although I didn’t snap, I courteously ended the phone call and moved on.

One month until I’m on holiday.

Yay for me!

 

Hold thumbs for my Molls xxxx

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So today I did a big thing. I put my big girl panties on and went and sussed out a potential school for Molly to go to next year. It’s a school for mentally challenged children. GULP. Even difficult to write, let alone say that out loud. School for the mentally challenged. Not an easy pill to swallow and heartsore at best.

Although, credit where credit is due and I’m handling it very well. So well done to me. Clap clap clap. Pat on the back and all that.

I feel at peace. I got such a good energy from the school, the teachers and the kids. Truth be told… I was impressed.

There are still lots of hurdles for me to jump. Like, taking Molls for Education assessments and Educational psychologists to test her IQ. Gulp. Getting her case reviewed by the Board, being put on a waiting list. and then we fill out an application form and we wait.

Please say a prayer for my little Molls. It’s the school for her. And as her Mommy, I say it’s the school for me too. Just think, a whole school of little Molly’s, a whole school of parents that will give me knowing understanding looks. Bliss, I tell you. and very comforting.

Holding thumbs. You must to.

A letter to friends…

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Dear Friends of a Mom whose daughter is not like your own,

Please don’t undermine or disrespect my daughter. And above all don’t disregard her. You have to watch what you say, because sometimes you can come across as tactless. Well, not all of you, rather one or two out of twenty. I know it’s annoying having to sometimes walk on eggshells when I’m in a sensitive mode, but quiet frankly, it’s not nearly as bad as the daily shite I have to put up with, so grow a pair!

Please don’t feign politeness or concern. I don’t care if you don’t mention my child. I don’t always care about your child either. I’d rather have no concern than tactless insincerity. All it does is annoy me and I seethe and imagine witty retorts I should or could have said when lying in the bath at night.

Please ask questions if you feel like asking questions. Your interest in my child is welcome.

Again, please don’t disregard my child. Ever. It’s so rude and disrespectful.

And above all, please treat my little precious girl with kindness. She reacts well to kindness and you may get treated to a glimpse of the awesome person that she is.

Thanks to most of you that handle this with aplomb and grace,

To the other 10%, come on, you can do better!

with fondest love

countesskaz

xxx

The eviction……..

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Today a bad thing happened. I knew it might, but I had to chance it as only a mother would. I had to give my little girl the chance to take part and enjoy a musical show. So there we sat and she shrieked a few times and made a few guttural sounds with excitement.First song, second song, snickering and turned heads from the other kids to see where the noise was coming from, and then there she was, the female teacher from the Drakensberg Boys Choir, asking me if I could take my child out? Now, before you get all huffy about this, let me make something clear. She said it very nicely and kindly. But it hurt. It still hurt me and I felt humiliated for my Molly and for myself.

I knew she might be noisy, but as a mother I had to expose her to the music. You see it’s all to easy to keep her away from everybody, it’s easier for me. But what about Molly? But I know now, that she can’t do everything other kids do. There are limitations. I discovered that today. It was a lesson I had to go through as her mother. I had to give her a chance too.

Fortunately Seko, Molly’s nanny, and I had discussed a game plan if this did happen and so I looked at Seko, who nodded her head in understanding, and off she toddled with Molls down the stairs. I sat there, childless, a friend who’d joined me earlier had witnessed the expulsion of my noisy cerebral palsy child, promptly burst into tears. Now, I don’t know why, but it FKED me off completely. Who is she to pity my child? How dare she make me feel worse by crying tears of pity? So there I sat, humiliated, feeling bad at Melanie crying next to me, feeling bad for the woman who had the bad luck at having to turf Molly out, angry at God for making me feel like this, angry at Molly for putting me through this, and I sat with bottom lip quivering and eyes welling up with tears. I physically restrained myself from crying, smiled and clapped like mad and enthusiastically at the performance.

You see if I’d cried, everyone around me would have felt bad and it would have been everyone’s day spoiled. Not just mine. So God knows where I drew the strength from. I forced my down-turned lips upwards, concentrated on the performance on stage and by sheer will and determination behaved normally.

Truth be told, I love my child. Molly is my daily blessing. God chose well by making me her mother. I’m strong and I have a sizable pair of balls.  But phew, it’s hard sometimes. It’s hardest to smile at everyone around you while your heart is weeping silently in your chest.

I’m tired now.

The week of the ortho’s………

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So  we are  doing the whole Cerebral Palsy thing for the week. The fortunate thing about being stuck on a farm is that our support group is really strong. Our community embraces Molly with open arms. It takes a village and all that……

But heading into the unknown… heading into the city where people are more ruthless and relentless with scorn and pity is scary. I’ve had to take an Espiride today and I took one last night. For the calm, you know?

We forget she’s Cerebral Palsy most of the time. Coz she does everything that we do and she neeks aan with life. But the difference is palpable around people who aren’t used to her sticking her tongue out and licking and sucking her fingers and open hands. A phase? We don’t know but she does it and it keeps her happy and quiet.

The sounds Molly makes are quiet diverse and can go from high-pitched screams of excitement, moaning and guttural noises when she’s annoyed. We know what they mean. I suppose for someone who doesn’t know, it’s very confusing and embarrassing because they don’t know how to react. So John and I over compensate with happy, high-pitched chattering which is EXHAUSTING.

I am so looking forward to the orthotics, but most of all the orthopaedic tackies. She needs them so badly. All in all, this is a good week. Something good to come out of it and quality time with my family. Even though, John and I are stressed out and treating each other with ill-disguised irritation.  It will all work out in the end.

Thanks for writing………..

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Even though I’m trying to act nonchalantly, I was completely flattered by my favourite blogger http://reluctantmom.wordpress.com/ mentioning me in her blog post today. Why? ‘coz she’s a cool blogger. She makes me laugh. I think I pee-ed in my pants once from laughing. She pisses me off too sometimes. But that’s a story for another day and it’s only happened once and was shortlived. http://reluctantmom.wordpress.com/2012/07/16/no-seriously-what-the-hell-is-in-pritt/ That’s good, I promise you. It’s not great to feel indifferent to someone. Reactions are AWESOME, ‘coz it means you’re ALIVE and kicking. My biggest fear is for someone to find me boring, the Mayor of Dullsville in the County of Predictability.

So I’ll include the Logo Award in my blog post:

and then I’ll mention 7 Random things about myself:

  1. For the first time in my life, my weight is starting to dictate my actions. It’s making me feel insecure and I hate feeling like that and I want to STOP feeling like that.
  2. I want another baby so badly. Another 2-3 babies. But I’m frightened ‘coz of Molls being cerebral palsy.
  3. I dislike rude people that have no manners and behave arrogantly. I want to punch them in the mouth, so their lip swells and blood trickles down their chin. Fckers!
  4. I’m creative. I love art and being around people that make me see things in a different way. People that make me think and stimulate me intellectually.
  5. This blog is a means of practising writing in preparation for the book I’m going to write one day. A story about the life and times of Nonkoliseko Yabo, my Molls’ fabulous and bossy nanny. A truly remarkable woman. I can’t recall any book that documents the history or life of a Xhosa woman growing up in the rural Eastern Cape in the fifties and sixties.
  6. I love laughing.

So, my favourite bloggers I’m nominating are:

Love

The wry and brilliant Countess Kaz (copied and pasted from The Reluctant Mom’s blog.) Sorry, but had to slip that in somewhere.

There, but by the Grace of God, go I.

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Being the mother of a cerebral palsy child, I could not help but be moved and touched by that incredible girl on Carte Blanche last night. I gulped, and pinched myself and refused to cry at her determination. I did not want to cry from pity or empathy but rather at the beauty of her and the living of her life and how she lives her life.

 So wonderful and so humbling for me. I was humbled to my core. I was humbled to tears of gratefulness, I guess too. Grateful that a child can succeed and make a difference and create awareness for disabled children. Give, me hope for my Molly. Michaela Mycroft on being inteviewed said:” ‘There is a song by Nickleback, you have got to get the music in there… And it says, ‘What is worth the prize is worth the fight.’ And I believe that the prize of inclusion is definitely worth the fight.”

 At the end of the day, this could happen to anyone. How does the old adage go? “There, but by the Grace of God go I.”

let me say that again: ‘ There, but by the Grace of God, go I.”

Michaela Mycroft, I salute you my girl, it is an honour to have watched you and all your achievements. I think you’re wonderful.

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