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Chocolachillie

The little red-haired boy laughs breathlessly when I catch up with him and swing him into my arms. “I’m your chocolachillie..” he says. Cerebral Palsy, hope, tantrums and sweetness. Equal measures of chocolate and chili.

Wednesday, January 03, 2007

Hi everybody

We are doing well and I'm missing this blog and you guys.

At work - where I usually post - our server has flagged blogspot and a few related sites as p*rn and it sends out pink-tinged warnings every time I try to access it. I cannot read any of your blogs on Blogspot and I'm certainly not going to try and explain to the network people why I need access to it - even though my interest could not be more innocent! (And even though I barely waste half a day on blogging and reading blogs - kidding, just kidding!)

I'm currently posting from home - late at night and on a dial-up connection that's so slow that I can feel myself aging a hundred years for every kilobyte of data it downloads. Oh yeah, and I forgot to mention that the dialup here at home is fine - as long as I don't want to read my comments, read my blog or read any of your blogs on Blogspot. Groovy.

So, to make a long story short, I've transferred the blog to wordpress and its address is:
http://chocolachillie.wordpress.com

Excuse the lack of a few crucial things - such as a blogroll or nice graphics. It'll come, I promise. Also, sorry about the change in name, but I felt that the new name reflects our current situation better. The migration to wordpress went fairly well and I'm still basking in the glory of that.

A very wonderful 2007 to all of you. See you on Wordpress!

Sunday, November 26, 2006

Problems

Nothing serious, but I haven't been able to connect to Blogger since I last updated. I can't view this blog, can't answer comments. So, I've decided that I'll have to move to another host. I'm considering Wordpress, but I'll let you know.

To the people who commented to my last post: Thank you. It is good to know I'm not alone, yet not good, if you understand what I mean. I wish for all of us to have support from family and friends, especially close family. Our children need this.

There was an Afrikaans comment that I could not read and therefore could not respond to. In case the person who sent it returns to this site, could you please send it again? Asseblief? Dis nogal vreemd om skielik Afrikaans tussen al die Engels te sien en 'n groot frustrasie om dit dan nie te kan lees nie.

Lots have happened since I last updated, but I'll have to save it for another day.

Tuesday, November 07, 2006

Choices

My in-laws’ recent visit brought home again the ways in which people choose to react to situations.

Martin Luther apparently said that one cannot stop a bird from flying over your head (and maybe even from doing something unmentionable on your head – Martin Luther didn’t say this!) but you can stop the bird from nesting in your hair. I think he used this in relation to sin, but it is true of most things. Especially thoughts. And we all know thoughts lead to actions.

I have always been a glass-half-empty kinda girl. More inclined to see the negative rather than the positive in a situation. At some stage – fortunately very soon after L’s birth – the realization dawned on me that I had to change the way I think. We have nothing to gain from being negative and everything to gain from being positive. And I’m not talking about a cheapskate everything’s-allright-with-the-world-tra-la-la theology. Because everything isn’t dandy. There is a lot of hurt and anger and pain and suffering in this world. But I can choose how I react to it. I cannot always choose how I feel. There are many things influencing that (hello PMS!) But I can choose how my feelings influence my actions.

Through all of this, my mother (and father) has been amazing. They have been praying, pleading, hoping along with me every step of the way. At first, they were the only ones (apart from a few of my aunts) who were prepared to do this. Even D was scared to hope. Slowly this changed.. A little boy with red hair and blue eyes has fought his own way towards his father’s hopeful heart.

D’s parents were/are very angry with me. I don’t blame them. I would probably be too, if I were in their shoes. But what I find difficult to accept, is their apparent lack of interest in their grandson. For 10 months, we didn’t see them. My father-in-law, who is a minister, christened all the grandkids so far. Not only did he refuse to christen L, but he also refused to attend his christening. D loves his parents. I think this hurt him more than they will ever realize. At first they suggested that we institutionalize L. I was so angry about this. I better admit it: I still am.

During their recent visit, they really tried to make up. D’s dad took L a couple of times and tried to get him to sleep. L was uncomfortable and unhappy in his grandfather’s arms. Who can blame him? D’s dad is a complete stranger to him. D’s mother kisses him, (every single time pressing her nose into his eyes that he is unable to blink), but doesn’t pick him up. One night she stood (unasked) with him in his room while I prepared his bottle. I waited and, as I expected, she called out hysterically:
“Come quickly!”
I rolled my eyes and walked to the room.
L, unhappy to be left on the bed, was hyper-extending. His way of throwing a tantrum.

Mother-in-law walked away from him: “I can’t stand this!” she mumbled.
I saw red. I grabbed her, not too gently, by the arm. “Listen to me”, I said. I could see the fear in her eyes and it shocked me enough to calm me somewhat.

I explained about hyper-extensions. She apologized. She said she wants to help but she panicked. I said I understand. Later on she came to watch and talk with me while I feed L. Before, she hated me feeding him in front of her.

I felt so hopeful that things finally were changing. The next day I asked her if she would like to watch a DVD explaining more about our current therapy. She smiled sweetly:
“Just now,” she said. She still hasn’t watched it.

That night she talked excitedly about one of her older grandchildren’s “graduation” from kindergarten. My sister-in-law stays about 5 hour’s drive from them. We stay three hours away. Earlier she was moaning that they are getting too old to drive this far (to us). But now she was gushing excitedly about how important the graduation was and how they were definitely going to attend it. I didn’t say anything. I dropped my head, felt the tears stinging my eyes. Of course a graduation is important to the little girl involved. But so is a christening. And so is getting to know a grandchild. My father-in-law must have seen the hurt on my face. He silenced her brusquely.

Maybe we are making progress, slowly but surely. But I can see the doubt in their eyes which returns at the slightest setback. Every little thing is a revelation to them: “Wow. He yawns. My goodness, he knows it is you! He sees! He turns his head toward sounds!” I get so annoyed. If they had bothered to get to know him, say 10 months ago, they would have already known these things. Why should my son prove to them that he is worthy of their hope. The fact that he is their grandson should be enough to love him unconditionally. Even if he hadn’t be able to do any of these things.

And now that I’ve said all of this, I’m going to listen to my own words of earlier. Of course these things hurt. But I will not allow them to take over my feelings and energy. Because I want my energy and all my love for this:
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And it is the last you'll hear me complaining about them. Promise.

Monday, November 06, 2006

Birthday celebration

Photobucket - Video and Image HostingWe went to our old home town, where both sets of parents still live, to celebrate L’s first birthday on Sunday.

The two boys had fallen asleep during the three-hour drive there and were bright-eyed and bushy-tailed when we arrived. M settled into my dad’s lap to watch TV. As soon as the program finished my dad said, with a twinkle in his eye:
“I want to show you something!”

And there it was. Barely a meter and a half long but unmistakably…

“ A CAR!” shouted M.
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“Yes, said Grandpa, and it is yours and your brother’s”.

He explained how he woke up one morning with the idea and started welding and cutting. The car isn’t for show either, it has an engine, a gearbox and it runs on petroleum. I listened to him explaining the technicalities, but my eyes were searching for the brakes. Villa Assumpta Close has an awfully steep downhill….

The next day, when we started the car, M got such a fright, that he jumped right into friend Elzabe’s arms. Maybe Villa Assumpta will be safe for another while…

It was a lovely weekend. L felt good and interacted beautifully with everybody who came to visit. I think he is quite the socialite…
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I appreciated one visit in particular. Hester also had a little boy with CP. His name was Sean. He died when he was 11 years old. Hester and her husband separated because their marriage could not stand the stress. Her husband did not even attend Sean’s funeral with her. She is now married again and very happy. But I can see her hurt about Sean. Earlier this year, when L’s health was very bad, we also visited my parents and Hester spent a whole day with me, giving advice and helping with L. This time, she was simply amazed at the progress he has made. She kept on remarking how curious he is and how alert. And she could also see that, physically, he has made progress with ABR.

All good things come to an end, though. Yesterday we traveled back. We were tired and M was difficult. He vetoed his dad’s choice of music, he also wanted bubblegum (which D didn’t want him to have) and he wanted to go back to Granddad. When D asked “which Granddad” he evaded the question neatly. Even at age two and a half, he knows that there are some answers that will land you in trouble….

Just after we left Ladysmith, I could smell big problems in both boys’ nappies. Fortunately the UltraCity near Estcourt wasn’t too far away.

I jumped out to go and change L and D went to the men’s with M. The restroom had a baby changing table, but no door. So much for privacy. I changed L in record time – remember the suctioning machine stayed in the car…. I put a jersey on L – it was cold outside – and tried to wash my hands at the basin next to the changing table. The taps weren’t working. Or so I thought. I got a bit annoyed, but realized that I had no time. L was getting distressed and wasn’t breathing too well. I needed to wash my hands, though, because with the suctioning I work right in his mouth. I tried one of the other basins and no sooner had I squirted soap into my hand when the washroom attendant informed me that there is no water. Anywhere.

No time to lose or get angry. With the nappy bag slung across my back, I marched with my head up through the long line of women waiting to change their kids’ nappies. I received some looks of pity and some horrified glances at L – who needed the suctioning pump urgently by now. If I had a free hand I would have given them a sign. Something like: Yo. Sisters-in-no-water-nappy-changing-circumstances! But my one hand was full of soap and the other tried to keep L from slipping out of my arm.

I ran to the car and got a wet wipe from D. Him and M had the same problem and there wasn’t even a changing table in the men’s restroom. (South African restrooms. Hah! At least they’re mostly free. )

And so we shook the dust from our feet and pressed on. Homeward. Best place in the world.

Friday, November 03, 2006

Photobucket - Video and Image Hosting Our garden, in the spring rain.


Photobucket - Video and Image Hosting Flying ants in the mist?

Photobucket - Video and Image Hosting We've cut the grass on Wednesday! Promise.

Photobucket - Video and Image Hosting Who can spot the reflection of one of our cats in the window?

Thursday, November 02, 2006

Technology maniac


Good thing both my boys seem endlessly fascinated by buttons and technology in general. Because I've just realized I'm useless at it.

I was so chuffed with L's expression when he saw our new camera for the first time that I completely forgot the camera does have a flash. Duh!

And not only did I not use the flash, but I also didn't switch the room's light on...

Hence a photo that needed lots of TLC and doctoring. But too cute not to share with you.

Reminds me of the time that I took M to swing in the garden and at 18 months he still needed a bit of help with the stairs. He wanted me to take both his hands and took the house key out of my hand and put it on the ground. I explained we needed the key to get into the house.

He looked at me and, very patiently and slowly, said: "Pocket."
And lifted my long shirt and put the key into my pocket.

At least then I was pregnant. Now I have no excuse, I'm afraid!

Wednesday, November 01, 2006

Words

Yesterday I had an appointment at the bank to open a bank account for L. His granddad gave him some money for his upcoming birthday and we have other gift money that belong to him that we should have banked long ago.

The sweet, pretty Indian bank official (in our part of South Africa, Indians immigrated here to work in the sugar plantations early last century) asked how old he is and wanted to know how his name is pronounced. She asked if his name was Afrikaans and I answered that our home language is Afrikaans, but that his name is Germanic in origin. For a moment I contemplated telling her that his name means “winner” or “victor” and that it is a true reflection of his personality. But then I decided against it. I needed to finish and get back to work. I completed the forms, she opened the account and made copies of all our documents. Then she sent me to the enquiries counter where I had to apply for an autobank card for him. As I got up to leave she remembered, “ I should have requested one of our cartoon character cards for him. Do you want me to…or… he is still too young, isn’t he? “

Yes. Yes, he is still too young, I thought. Even M at almost three years of age would probably only be interested in the cartoon character card for a minute or two and neither of them are going to use these accounts for anything other than savings for the next four or five years at least. But for the strangest reason I had to fight back tears standing in the queue at the enquiries counter. And when the printer malfunctioned and printed only part of the account number on the card, I could not decide whether my annoyance was justified. It is just a damn bank card and perfectly useable as long is the magnetic strip is intact, after all.

But the fact is that I want things to be perfect for my children. I want them to have the bright and cheerful Disney cartoon cards and legible account numbers. And I find that I tend to overreact just a tad particularly where L is concerned. Almost as if I’m trying to compensate for everything he has had to miss out on so far.

And last night D mentioned that he requested the paediatrician to certify that L is disabled for tax requirements. Under SA Tax Law, someone can be classified as disabled only with the following conditions:
a) Blindness
b) Deafness
c) Mental disability.

The paediatrician sent a letter stating that L has quadriparetic spastic Cerebral Palsy. Because we are relatively convinced that L is neither blind nor deaf (we haven’t been able to test this to date as he does not want to co-operate in the least!) he is therefore classified as disabled under c).

Master L did not want to go to sleep at all last night. In his bright eyes I could read obstinate ness and wanting to be part of the grown ups’ conversation.

Whatever. Everything is just words, after all.