Tag Archives: cerebral palsy

My two beautiful children xxxxxx

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Today I feel like reflecting on my many blessings:

  • Thank you God for my little boy. So filled with wonder for the world. He received such an EXCELLENT report this last term. So filled with humour even when someone annoys him and trys to knock him down. So filled with excitement and enthusiasm for each day and each new thing he discovers. So gentle and kind with his sister. So caring for Molly and helping her down stairs or berating me if I forget something. God CHOSE him to be Molly’s brother. That’s a VERY special job.
  • And my little precious girl, Molly. Dad and I have learnt, especially on Friday, that you need protection from the venomous people of this world. The toxic people who don’t have your best interests at heart. Toxicity comes in many forms, disguised and spewing from people’s selfish mouths. We WILL protect you and we WILL cut dead any baggage that pulls us down. We don’t need ignorant people in our lives. You and Aidan are our first priority.

So thank you God, for my two beautiful children. Our two most precious people who John and I will protect with our all our heart and soul.

 

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Miss Molly….

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Been a busy week. Yesterday was Molly’s birthday. She turned 6. This was the first time she acknowledged that it was her birthday and basked in the enjoyment of it all. My sister’s phoned and left messages. Not one of John’s sisters phoned to wish her a Happy Birthday. I despair of that family. Truly I do. But that’s another story and another post.

I’m a bit of a Prima Donna for my kids birthdays. I make a big, HUGE deal out of their birthdays. You don’t need to speak to my kids, just email or leave a message, but  just think about them on that day.

Molls is my non-conformist. Every family has them. She is a stubborn billy. You can smack her, shout at her, moer her  black and blue but she will NOT do anything if she doesn’t want to. (Please don’t get hysterical…it’s just an analogy, I do NOT beat my kids black and blue). I’m tempted sometimes, but manage to restrain myself. Her bottom lip does quiver if John reprimands her sternly. Molls gets treated normally in our house. There are no special favours for her. If we go up the beach, we tag her along. If we go skiing on the boat, she gets tagged along, if we go for a game drive she gets tagged along, and so forth and so forth. She may walk slower than the others, but she gets there in the end. And she loves every minute of it. She loves being around people. Molls loves water and she loves music and she loves horses. Those are her favourite things in the world.

So todays’ blog post is dedicated to her. A little girl who threw our world on it axis  a few years ago. A little girl who forced me to look deeper into the world of physio, speech and facing the world with disabilities. I chose to be a happy mommy. Not a mommy with the world on her shoulders. Molly has forced us to feel emotions to a depth that few can understand. She is a truly remarkable little girl that we love and can never imagine a world without her. She keeps us centred  and rooted and joyful. Joyful in this life that God chose for her and chose for us. It’s not easy. We encounter hectic things everyday, but the joy and love is higher on the Richter scale than the fear and disappointment of it all.

So here’s to you Tinka-Lou, Happy 6th Birthday. Mommy loves every inch of you and stay the happy, giggly, complicated monkey that you are!

Smile and wave………..

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I’m trying really hard to be someone that uplifts others. Everyday I try. Really hard. I bite my tongue very often. If I retaliate, you must know, that you have pissed me off once too often.

It’s so easy to knock someone down to size or put them in their place or give them the correct answer, when you know they’re lying or speaking utter bollocks. So for the moment I nod and agree but inside I’m thinking: ” what an utter doos.” or “what an utter prat” or “you lying cow, that’s not what you said to me last month!”. I’ve decided that I’ll work on this mind control of negative thoughts later. For the moment, I have to deal with the everyday bulldust that people spew constantly from their mouths.

When you lie…do you think people actually believe you? Seriously? Come on now….No-one does. We all nod and agree, but inside we’re thinking:’What a tosser!”

But for the most part, people tell the truth. sometimes too much. For example when sharing with a dear friend that I was thinking of having a third, she replied” Yes, even though you have more chance of having a child with abnormalities, you must still do it.”

Really? You have the balls to say something like that to my face? Really?

Who would be so stupid. It’s just that sometimes people are a little insecure and want to be seen as knowledgeable, so they sprout-forth “pearlers” of wisdom! When in fact, the real truth, I retorted is that, since we’ve had Molly genetically tested we have less chance than most people.

It’s too late now…coz they’ve sown the little seed of doubt in my mind. It’s schmokkling with my brain now.

Oi, people make me tired jong. I’m weary from them all. Some people are not unlike the ‘Death Eaters’ in Harry Potter novels. Or the “Omoebe’s” in Bridget Jones’ novel. Sucking the life out of me.

I think I must go back to my lady in the city and have another brush up 1 hour chat session, to refresh me on my coping mechanisms.

To remind me to smile and wave….

Molly’s Christmas joy

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Been thinking about this a lot today. Do you know how difficult it is to buy presents for Molly? 99.5% of toys she can’t play with. AND all the toys she should be playing with scream at you and tug and pull at your vulnerability when you walk past their shelves. It’s like a test or task that highlights all your failures and all the things she can’t do instead of CAN do. In a nutshell it’s horrible.

But to put this all into perspective, Molls doesn’t care. She doesn’t mind what she gets for Christmas. All she wants is to be around us, to be around all the activity, sounds and noises. This year I’m doing it differently. We’ll all open our presents and when everything is calm, I’m going to sit quietly with her and open them slowly, so she actually sees them. When there’s a lot of noise all she sees, are the people and not specific things.

And I’m going to do what I really want to do….and that’s buy her a little mini hi-fi for CD’s and an MP3. Molly loves music. And for me, the obvious choice is to give her what she really wants and not what she should be  wanting. 

It’s simple really….

 

A bee in my bonnet…

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I’ve had a serious bee in my bonnet the last week or so, a bug that’s flown up my backside…so too speak.

When I’m depressed it consumes me, the drama Queen that I am. I throw myself on the ground thrashing and beating my hands against the floor. But this time I was in a bad way. Not bad…throw myself off a bridge bad, but just enough to make me cry and feel symptoms of light headedness and a thumping heart.

 Two Saturdays ago I was chatting to one of the moms, Susan, whose kids also go to Molly’s school. Moll’s is cerebral Palsy if you didn’t know and her  playschool is 50kms away in another town.

I hardly know anyone and have only met three moms in the ten months of her being there. So this mom, Susan, was telling me who her friends were, after I’d asked her. She mentioned the one group as the “Birthday party” group. That’s when it hit me. Like a ton of bricks. That’s when the pity-party officialy started.

 It hit me that Moll’s hasn’t been asked to one birthday party from any child in the school the whole year. Molly is one of two disabled kids. She’s been to lots of party’s this year. But local ones. But it made me so miserable to think that no-one wants to invite my darling little girl. The nanny that goes to school with her, assures me that Molly has lots of friends and they all rally around her. But why doesn’t anyone ask her to a party? The little ignorant fuckers!

Let’s make one point very clear right now. Molly doesn’t give a hoot. You see, she loves school. Adores it. She doesn’t know any better about the parties. But I know, and it burns my ass! I’m always incredulous when people disregard Molly. I see her as someone remarkable, full of character and totally ALL THAT and more!

So, let’s hold  thumbs for 2012 that when I open her school bag, I’ll find nestled amongst spilled Oros, dry curling up sandwich crusts, soggy tomato, an awesome thick envelope with an invitation for my precious petal to join one of the ‘ignorant little fuckers’ at their party. Huh, they should be so bloody lucky!

Countess’ personal pity party…

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Taken and amended courtesy of Natalie Norton’s blog.   Written to help me cope with finding out about Molly’s cerebral palsy and the days thereafter…

I knew this girl once.

She was happy and brave. She had a skip in her step and a song in her heart. She loved the world completely, and the world loved her right back again.

The girl grew up.

And sometimes, she felt as if the world had stopped loving her quite so much. . . or just maybe, he’d forgotten about her altogether.

The girl felt all alone.

The girl cried. She cried and she cried and she cried.

A hundred rivers, she cried to overflowing, and then she cried some more.

Then one day, the girl woke up, and she didn’t want to cry any more.

The girl wanted to laugh.

She wanted to laugh, and she wanted to sing! She wanted to skip, and she wanted to dance!

She wanted to love the world, and she wanted to show the world how to love her right back again.

The girl declared war on her hurt, and she sang as loud as she could to overcome the
sound of her sorrow.

The girl had forgotten how to skip, so every day she tried to learn how to skip and to put on a brave face. She found new projects to sink her teeth into and to keep her mind busy from the sad voices in her head

She worked and worked and gave and gave. The people around her took and took and took.

She wasn’t working and giving to feel better about things. She did this to survive day by day. She felt like was running right over the top of it all. She wanted to show she wasn’t different and that she was strong and brave, and that she had so much fight left in her. Enough fight for all the world (and then even more left over, just in case).

The girl found her smile again. The girl found her courage.

The girl had proven that she (and you) can overcome anything in life, just so long as you stay brave and keep right on loving (and believing in) the world, no matter what.

So even though the girl knows that in a different life, on a day like today she’d be seeing the world in innocence and through a 5 year old little girls viewpoint. She’d be dropping off the girl at school or watching her swim or listening to her
read she knows that her life in retrospect is not that bad.

.

She’s Ok.

Bruised, but not beaten.

Yes, today, she’s dying from so much ache. The wanting is heavy on her chest, and the hurt keeps finding it’s way to the girl’s stomach until she can literally feel the vomit rising into her throat. She feels lonely.

Yes, the girl has much to wonder about. . .But one thing is clear.

The girl knows that this day will be but a moment. And one day, sooner than later, this pain, so deep and so wide that it threatens to swallow her away, will be filled with joy twice as deep as is her sorrow.

Ants in my pants….

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October is not a great month for me. We find out too many bad things in October.

For example we found out that Molls was cerebral palsy in October. A few years ago, in October, John received a phone call from California in the shearing shed to say that we should fly his brother home ASAP as he was addicted to Cristal Meth.

So not a great month on the one hand and awesome on the other hand. Every October John and I sit down and give thanks for the way Molls has progressed and give thanks that we don’t have to digest any other terrifying news. We have  a lot to be thankful for.

But…..I still have to suppress and ignore this gnawing underlying feeling of anxiety. Thank goodness it’s the 27th!