Chocolachillie

2007-01-03T23:09:00.000+02:00

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!

2006-11-26T08:21:00.000+02:00

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.

2006-11-07T12:08:00.000+02:00

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:

And it is the last you'll hear me complaining about them. Promise.

2006-11-06T14:53:00.000+02:00

Birthday celebration

We 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.

“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…

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.

2006-11-03T15:58:00.000+02:00

Our garden, in the spring rain.

Flying ants in the mist?

We've cut the grass on Wednesday! Promise.

Who can spot the reflection of one of our cats in the window?

2006-11-02T11:41:00.000+02:00

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!

2006-11-01T13:08:00.000+02:00

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.

2006-10-30T10:59:00.000+02:00

ABR Update

I've been thrilled to read that Terrible Palsy is currently busy with ABR training in Australia. And just this morning I found a request for information from someone in Argentina on our ABR support group. Twelve of them are starting ABR in January and she was looking for stories and photos of children who have been on the ABR program.

Here is what I answered and this also serves as my update on ABR:

"First of all, it is wonderful that you are about to start ABR. I must say that when I first heard of ABR, I had this sudden surge of hope. We have been fortunate in that we haven’t tried many therapies before ABR, so we were a bit more, I think innocent would be the correct word, and inclined to believe that it could work. I know other parents have gone through therapies that brought them great hope, but little results. Somebody said to me that she got so tired of people trying to sell her hope….Until she found ABR.

Yet, we also had our moments, especially before we started to see results, when we thought that it is too good to be true. Then it is really great to have a support group like this.

Our son is a year this coming Sunday and has dystonic CP due to HIE Grade III. His breathing has been very bad and together with the constant presence of mucus made him prone to chest infections. His arms are a lot more affected than his legs and could be described as spastic, he is unable to roll, sit or use his hands. He cannot swallow or suck effectively. His face muscles are very badly affected, so he cannot smile or blink or show any emotion but surprise. He is able to focus, but we aren’t yet sure what he sees. He seems to be able to hear.

We started ABR when he was six months old, but the first few months we rarely did the required three hours a day and quite often much less.

After our August ABR assessment and training, we really got cracking. We realized that L was just going to deteriorate further in terms of health and structure unless we do something radical. So, we committed ourselves to five hours and more per day. Most days we manage seven hours, but we are only able to do so because of L’s very committed caregiver, Anna Zondi. And I must emphasize that we had to do more than the usual number of hours a day because L’s health was so very bad.

We’ve done approximately 600 hours of ABR now. The biggest improvement so far has been L’s breathing. He has gone from not using his chest muscles for breathing to using them much more than his abdominal muscles. Even when he is sick, the difference is noticeable. And it is not just us, but also the Occupational Therapist and family and friends that notice this. A friend said that he seems much more “comfortable in his body.” His chest had expanded in volume. L’s head has grown in circumference – initially with a full centimeter the first month of doing ABR. Now the growth has slowed down and I see more of a change in the shape of his forehead which seems to be expanding and rounding out. Photos taken earlier this year, shows how much more closed his mouth is now.

The other functional changes so far has been increased movement in his arms and his hands going from closed fists to half-open. From time to time he will make a reaching movement towards a nice toy or my long hair. He used to hyper-extend a lot. So bad that he could not sit in an upright position – even with support – at all. In the last six weeks this has diminished so much that I’m able to hold him on my lap, sitting upright, just supporting his neck. This has lead to improvement in his ability to focus. I can even see his eyes making small tracking movements. He seems to turn his head toward sounds much more too. He is starting to frown slightly when he is upset.

I have even greater hope for improvement now than I had when we first started ABR and I realize that there are people in this group and out there whose stories will just increase your motivation to start ABR a hundredfold.

Everything of the best!"

I can just add that I used to get very annoyed when people started mentioning structural changes - an increase in volume of chest, or deeper armpits or a rounder forehead etc. I'd think: "Come on, get to the good stuff! I want to know about sitting and crawling and walking..." Impatient as ever!

But I've come to realize that functional changes just won't happen before the structure is changed. And this is the limitation of some of the existing therapies we have used for L. I'm not knocking them, please understand! They can achieve a lot. That is why we still use them.

But our kids are not moving as they should because they have structural limitations. Arms that don't fit into their sockets correctly, don't have the range of motion they should have. Legs that don't have the right angles to the body, won't be able to carry the child and will get stiffer and stiffer. And the problems with limbs point to problems (usually weakness and lack of volume)with the core body - the trunk. Until you fix this, you are only going to achieve limited movement - movement as far as the limited structure of the child's body allows. And I know of no other therapy that actually transforms the volume and structure of the inner muscles of the body, the muscles that cannot be exercised, and don't trigger the spastic muscles on the surface.

So, now I too talk with great enthuisiasm about my child's deeper armpits, knowing they are signs of something bigger. And that something, is called hope.

2006-10-27T12:14:00.000+02:00

Thank you

Thank you for the reassuring and kind words in response to my last post. I am always humbled and amazed when I receive such total forgiveness and understanding from other parents.

Look, I would have understood if your responses had been harsh. In my situation is factored in own choice (albeit limited)which, from where I stand, a lot of you didn’t seem to have. It would (and in day-to-day life I find this often) also probably be easy for parents with normal and healthy kids to condemn me and my choices. Yet those of you in that category didn’t.

It amazed me to learn that a good few of you also deal with feelings of guilt – whatever form it may take.

Maybe we could all learn from this that parenting is hard. Period. The extent of our feelings of responsibility and love for our children are just so overwhelming that there is no space to carry feelings of guilt on top of everything else. And maybe there aren't categories of parents. Maybe we're all just...parents.

2006-10-24T16:14:00.000+02:00

Our story

How to write this?

A homebirth, unassisted because there was no medical support for a VBAC at home with a baby bigger than 3.5kg.

A little boy born after an uneventful 7 hour labour.

Not breathing.

We don’t know why. Nothing was wrong, nothing was out of the ordinary. The paed thought he’d probably inhaled amniotic fluid. Something that can happen even at elective C- Sections. Had we not panicked, we might have been able to get him breathing. As it was, we got in the car and rushed to hospital. It took too long – we hit peak traffic. And though he was resuscitated, he was without oxygen for a long time. Too long. He was taken to NICU - very ill.

I started bleeding from tears high up in my vagina. The nurses were angry, they were rough and they were abusive. I allowed them, because I thought I deserved it. Only at 16:00 did I receive proper medical care. By that time, I’d lost enough blood to warrant a blood transfusion.

I pleaded with them to take me to L. The paed said to get better myself first. Maybe she thought I wouldn’t get attached to him. Maybe she thought it would be easier on me this way when he died. Because she didn’t think for one minute he would survive. Fortunately she was wrong. He did survive… and I? How could I not love him?

Harsh words were spoken. Things were said that will stay ingrained on my soul for the rest of my life. As they were meant to be by the people who spoke them.

He ended up staying in hospital for 35 long days. After a week, he was taken off the ventilator. He fought for breath for a day – and won. A few days thereafter, he started opening his eyes. I sat by his bed, my eyes averted, just focusing on him. Praying and touching his head and feet. After a while I could hold him. And I did. He felt like a ragdoll, but he was alive and he was mine. I became part of the furniture. I would go home, look after M, pump milk, go back to the hospital. Fall into bed, sleep dark and dreamless and wake up knowing something was dreadfully wrong, but couldn’t remember what it was. And then it would hit me... An endless routine.

At first, remorse nearly killed me. But I soon realized that I had two kids, a husband, wonderful parents and a sister and friends who stood by me. I had to carry on. There was no alternative, really…

So I carried on. God helped me. He sent people across my path that said the right words and kept me upright at the time I needed it most. And I chose LIFE. Not just for myself, but for our whole family, particularly L.

It is almost a year later. It is time to share this with you.

Why haven’t I shared our story on this blog, yet?
I was scared. I’m still scared.

Some of my..our bruises have barely healed and others never will.
But here it is. Here is our story.

2006-10-23T12:30:00.000+02:00

Cast the first stone… if you dare.

This past week in the South African news was a man who had left his son - totally absentmindedly and accidentally - in his car at work. He’d gone back to fetch a book at home and his wife asked him to drop his 17 month old son off at daycare. He landed in bad traffic and missed the turnoff. His son had fallen asleep and he simply got out at work and left him in the springtime heat. By the time his wife realized the little boy never ended up where he should have been, it was too late.

Yesterday, with the story front page news, I listened to somebody expressing horror and questioning how it is possible, implying that the father somehow didn’t love his child.

I just thought that the person who has never made a mistake concerning the upbringing or care of a child probably doesn’t have kids! The fact that the majority of us never end up with a dead child as the result of our mistakes, is pure grace.

This is a tragedy. No more, no less. Children aren’t supposed to be left in cars, aren’t supposed to drown in swimming pools, aren’t supposed to die in motorvehicle accidents. A child’s death is against the order of the universe. But when that happens, we need to hug our own kids even closer. There is no place for recriminations. Never say: “I would never”. Because you have no idea what is in your future.

I wish I could embrace that family and shut their ears against the comments that are being made and even the comments they imagine being made.

The worst thing in this world is remorse.

I can imagine only too well this father’s pain. Also the pain of the mother who answered the telephone and found her toddler drifting face downwards in the pool a mere 10 minutes later. The father who reversed his car without looking. The mother who left the cleaning agent within the reach of inquisitive little hands. The mother who chose an unassisted homebirth and whose baby almost died, ending up brain damaged.

There is a moment in time that the parent partly or wholly to blame for a child’s injury or death keep revisiting. It is the place where the course of a child’s future could have been different, if only…

But going back there is pointless. You cannot change a single thing. You can only go forward, step by step. Careful not to fall and not to drop the precious and fragile gems in your arms. Maybe later on, you’ll walk with greater ease. Knowing that Someone is walking right beside you and is ready to catch you should you stumble.

2006-10-13T10:16:00.000+02:00

Tuning in...shhhh!

So I start a new blog in my mother tongue. I’m tired of the endless e-mail list with the newsletter that I send out weekly. And, to be truthful, even though my family and friends urge me to write to them, I feel a little uncomfortable dumping my intimate thoughts and feelings into somebody else’s inbox – almost leaving them with no choice whether they want to read it or not. I mean, even when I can see something is pure spam, I sometimes read it. A mean little voice keeps on whispering in my ear that they just read because I’m forcing it onto them.

The new blog seems to be a success. I’m much more comfortable writing in my mother tongue than writing in English. The great faceless Internet seems hungry for Afrikaans blogs. I get more hits in a week than I’ve had in all the months I’ve been writing here. And people seem to be coming back too.

Yet, when I mail my e-mail group with the news and a link to the blog, they are, with two exceptions resolutely quiet. One male friend answers back:

“So, you have a blog? Does this mean I have to remember to go and check your blog when I want news of you guys? Remember that some of us are rather too busy to read blogs. Besides, I feel about blogs the way I feel about people phoning in to a talkshow. I switch my radio off. Listening to the opinion of every uninformed tom dick and harry is just not my thing”

And then he adds:
“Not that I consider you uninformed. I appreciate what you are trying to do with your blog. But know that I’m going to watch you. If you start talking nonsense, I’ll be the first to tell you. Or even better. Start a blog of my own.”

There are of course a few fatal flaws in his line of thinking. But he has a point.

This got me thinking. Always a dangerous thing.

Why would somebody read the opinions of just another ordinary woman? Why am I, for instance, so addicted to blogs? Some of them are, admittedly, not very well written, opinionated without being researched and some blog writers are guilty of using incorrect language and sloppy spelling. (OK, so am I. But I feel you need to cut me a little slack on account of English not being my first language, okay!)

I know why I read blogs. First of all, I’m looking for a community. It was infertility, then CP that drove me to go out and look for others like me, others in the same boat. I found wonderful people. People that filled the holes in my heart and life with their words. I found information, a way of dealing with two vastly different but emotion-filled situations and the knowledge that I’m not alone.

At the same time, I found a few phenomenal writers. People whose words I’d read no matter what they are writing about. The fact that they are writing about things dear to my heart is a bonus.

So then, if that is the case, why am I writing? What am I hoping to achieve?

Of course there is the psychological release of writing your problems down. It wouldn’t matter if nobody read what I had to say. But the words have to GET OUT. I think I have saved thousands of Rands in psychologist fees by blogging. Seriously.

The fact that people are reading and responding to what I write, is even more fulfilling. Mostly these are people who know where I come from, who experience similar situations. To them, it doesn’t matter that everything I write eventually deals with L and M and my hopes and dreams for them. It doesn’t matter that my blog becomes just another “mommy blog”.

But there is even a more subtle reason for keeping on writing. And this is called introspection.

I am because I reason and feel.

And this has nothing to do with being informed. I know very informed people who lack even an ounce of human feeling and sensitivity toward others.

Lately, I absorb the news of the day mainly through osmosis – catching an item on a radio here, glimpsing a news headline there, tuning in to conversations around me. I certainly won’t be able to give you a blow-by-blow account of things happening in the world right now. My philosophies aren’t formed by great thinkers. My opinions are mostly based on emotions and can change at the drop of a hat.

But I like to tread carefully in this world full of fragile things. I like to see my thoughts in black and white on a computer screen before they cause damage. I’ve learned my lessons well.

I can tell you that my two sons have eyes the colour of a stormy sea.
Yesterday I heard my older son whisper to his brother: “Hello my baby. Hello my sweetie pie.”
And after leaving their bedroom for a moment I came back to find them face to face, locked in each others arms – fast asleep.

This is all the qualification I need to write and to be read.

2006-10-04T11:46:00.000+02:00

A break, please!

Most mothers are extremely aware of possible dangers to their kids. We theoretically know that our children can fall, break limbs or get sick. And we theoretically know that they can die. Yet I’m sure no mother believes that it will really happen to her child.

The mother of a child with a serious childhood disease or condition is probably in exactly the same position. Except that she knows the name of the monster that might claim her child. I don’t think accepting the possibility of death becomes any easier under these conditions.

This past week we received L’s medical records from his stay in the NICU. Both D and I started reading them compulsively. (We stopped when we realized that we were getting too upset.) On the very first page the attending nurse wrote:

“Parents don’t seem to realize the seriousness of their baby’s condition despite being counceled by Dr H. Twice.“

I can only vaguely remember how I felt. Weak with blood loss and the effects of general anaesthesia, I was wheeled to L’s bed in the NICU and lost my balance when I tried to stand. Looking at my baby, I recognized him from the moments after his birth. His one elvish ear and one ear squashed from being inside me, the shape of his head, his long graceful limbs. And yet with all the wires connected to him,it almost felt as if he didn’t belong to me. We were only allowed to touch his head or feet. No stroking for fear of triggering more seizures. I heard the doctor say: “He is very sick, but he has a lot going for him: He is big and has reserves. His heart is strong. He started breathing spontaneously.” And that is what I decided to cling to. Not the bits about him dying. Not the bits about him being possibly no more than a vegetable if he survives. I decided to trust the Lord with everything I have.

And then we faced the monster again. I remember thinking: OK, so, this is how it is going to end. And for a moment I resigned myself to the fact. But then God intervened....

-------------------------------------------------------------------------------------

L has been sick for two weeks now. First tonsillitis, then bronchitis and on Sunday night his temp – which had remained normal through all of this – went up suddenly.

So, on Monday morning we took him to a doc which prescribed (sigh) another course of antibiotics and fever medication.

Night before last night I put a sleeping L in his cot. He hadn’t been himself all day – clearly uncomfortable and in pain. I covered him with a light blanket as it was cold and went to bath M. Both D and I checked on L a couple of times and found him soundly asleep.

When I went to put M in bed, I didn’t switch on the light for fear of waking L. In the semi- dark with light from the passage shining in, his skin tone seemed dusky, but I thought it was merely the effect of the light. He seemed restless and I thought that I’d better get M to sleep quickly so that I could devote my full attention to him. I settled M and lay down next to him (a prerequisite for going to sleep!). I heard L cry out in his sleep and heard him struggle for breath. Shame, boor baby’s got a blocked nose, I thought and waited for him to settle into a better position for breathing. When it didn’t happen and his breathing remained “odd”, I jumped up, picked him up and moved into the passage.

What I saw, made me nearly keel over with shock. He was tongue was blue, his hands and face mottled. And he clearly was seizing. I sprinted to the suction pump as I thought his airway may be blocked. I had the familiar sinking feeling. OK, so this is how I’m going to lose him. I acknowledged the monster. And then my instinct kicked in and the mother animal started growling: No. I’m not letting him go without a fight. I prayed aloud: "Oh Lord, please help my child.” I realized that I couldn’t get any mucus out and decided to do CPR. My first attempts at CPR were clumsy as I tried to remember the steps, but then I got into a rhythm.

In between CPR, patting his back and trying to suction any blockage from his airway, I shouted to D to come and help me. He gave L one look and pressed our alarm panic buttons. He phoned the ambulance and the next-door neighbours. Having never done CPR, I wasn’t sure I was doing it right. I asked D to check if L’s chest was rising. He said it was. His colour started looking better with the extra oxygen I blew into his lungs. The alarm company sent people out, but they had no medical experience. Our neighbour, Laura came rushing in. She has some nursing experience and reassured me that L seemed to be breathing but that he clearly still was seizing. I felt him and he was hot. Laura wet a terry nappy and we wound it round his head. After what felt like hours, but probably was no more than 5 minutes, he stopped seizing and relaxed against my chest, his colour normal again. He protested at the cold of the wet nappy and fell asleep against me. I checked his temperature and it was high. So I inserted a suppository for fever. The ambulance still hadn’t arrived. When D phoned, they hadn’t even left their base. So we drove to the ER, leaving a very upset M, “Mama. Don’t forget to put L’s hat on.” with Laura and Roger.

I described to the nurse on duty what had happened. She remembered us from our previous stay in ICU and agreed that even though L seemed fine and the fact that it probably was just a febrile convulsion (albeit a long and serious one), L needed to be checked out.

Then the struggle to find a paed began. The paed we normally use (the guy charging 300% of medical aid rates)was out of town. The doctor standing in for him refused to come out. He said he was already in bed. It was 20:00. Another paed couldn’t come as she was “ on her way to Ireland”. Out last resort paed couldn’t be located. The night matron suggested we use the ER doctor ( a GP) and we agreed. He checked L, found an ear infection that wasn’t picked up before – probably the cause of the high fever and general icky feeling. He reassured us that even though the seizure was a particularly scary one compounded by the fact that L’s breathing was affected, we needn’t be too concerned. He also said that it often is a sudden rise in temperature triggering febrile convulsions rather than how high the fever is. He suggested that we admit L to the paed ward and keep him under observation for 24 hours and he agreed to take over his medical care for that period.

L spent a very peaceful night with me next to him in the paed ward. When we walked into the ward he was all: “This place seems familiar. Look at the pretty ladies! Wow, Mama, there’s a butterfly mobile attached to my cot. Look! Look! Make it turn?” No sign of anything wrong with him. And when I put him in the cot he turned his nose into the pillow, gave a sigh of contentment and fell asleep. The little stinker.. He was discharged even before the 24 hours had expired.

2006-10-02T15:24:00.000+02:00

Music for the end of the world

At first I didn’t understand our friend Benjamin’s shock upon learning the time of L’s birth.

9:00 on Saturday 5 November 2005.

Sure, it coincided with his (Bejamin is a pianist) performance of Messiaen’s work. I got to know some of Messiaen’s music through Benjamin and have always liked it immensely.

But now he has forwarded us Messiaen’s history and in particular the history of the piece: “Quartet for the end of time”.

A birth is always an end to an old life and the beginning of a new one.

L’s birth was an end to innocence, but a beginning to joy; an end to pride and a beginning to endurance, meekness and patience; an end to self-sufficiency and a beginning to trusting absolutely; the apocalypse of an old life, the start of a new life.

Reading this I sat in front of my computer with tears running down my cheeks. I quote parts from First Things: Music for the End of the World by Michael R. Linton.

“But I am pretty confident as to what the century’s most miraculous work is. Composed and premiered in a German prisoner-of-war camp, Olivier Messiaen’s 1941 quartet for piano, clarinet, cello, and violin is a piece of musical radiance, joy, and transcendence in the midst of squalor and misery. In other words, it’s a miracle.

I have called the work a miracle. Certainly, any masterpiece is a kind of miracle. And it can be called miraculous that Messiaen found himself imprisoned where his abilities would not only be recognized by the camp commander, but encouraged and even rewarded by a performance. But what is most miraculous about this quartet is its character. This is deeply irenic and joyous music, yet it is written in a prison camp, by a prisoner, in the middle of a war, about the end of the world. This is not the kind of work one would most likely expect under such circumstances.

This piece is entirely about the work of God and the glory of Jesus. There is no darkness here. There is no bitterness. There is no rage. Instead there is power, light, transcendence, ecstasy, and joy eternal.”

I now understand Benjamin better. And, knowing a little boy currently * imprisoned by a body that does not obey his pure spirit and courage, whose existence is a miracle to us and everyone who has taken the time to get to know him, I can only bow down to “power, light, transcendence, ecstasy and joy eternal…”

*Note: currently

2006-10-02T10:52:00.000+02:00

A wedding

My colleague, Tusiwe, got married this weekend. We weren’t sure that our children would be accommodated, so we arranged for a friend to look after M and for L’s regular caregiver to come in on Saturday morning.

I got up on a hot summery Saturday morning, feeling optimistic that I would be able to finish a few things around the house with the extra help. Anna was supposed to come in at 7:00. When she hadn’t arrived by 8:15, we phoned her mobile phone. She was in a taxi on her way to us, she said. 9:00 and she still wasn’t there. We phoned again. A harried-sounding Anna said she was standing in a line to withdraw money from an ATM. Her teenage son was with her and he wanted money for an outing. He’d only let her know that he needed the money while she was already on her way to work and then she had to wait for him to arrive and… you get the picture. D went to fetch her. L refused to be happy anywhere but in my arms. I got M dressed and fed one-handed. Anna arrived at 9:00. At this point I still had to get dressed and we had to drive to the opposite side of the city after dropping M off to make it in time for the wedding at 10:00….

I showered in record time, threw on a dress, put on a bit of mascara and some red lipstick (an old trick), dressed my hair in a bun and put a hat on. No time to wash and blow dry hair or for proper make-up….

At some point I consciously decided to relax. We couldn’t make the traffic go faster, we couldn’t find the venue any faster and I figured that a 10:00 wedding in African terms may be more like 11:00. I was right. When we arrived at the hall everybody was still standing outside, chatting. The wedding finally started at 11:05. The beautifully decorated hall was still only half-full. It worried me, because surely so many people not turning up means terrible wastage..?

And then I came to sense and understand the full meaning of African time. Time in African terms is…fluid. People kept on joining the proceedings - dressed immaculately. Other left only to reappear later. By the time the proceedings were finalized, three hours later, every seat in the hall was filled. There was no rush and a great sense of occasion. Everybody listened to the speeches (always too long!) and rolled their eyes, good-naturedly indicating that they were getting hungry. But they respectfully clapped hands and participated when called upon to do so. Family members and friends reunited and hugged and chatted. Little kids ran around outside. I wished I’d brought my own kids with – M would have found plenty of friends and I’m reasonably sure the occasional need to slip out and suction L in the car would not have been frowned upon. But then, it gave me the chance to hold hands with my husband for a change.

The wedding was very Western – some Zulu people marry according to Western custom as well as according to traditional Zulu custom. As far as I know, Tusiwe only had a Christian Western wedding ceremony. But I know that they had to pay “lobola” – where the groom pays for the bride (if that’s how you want to see it – the real meaning is far more subtle) in blankets, cattle, household goods and money.

Except for the printed wedding programme, everything was in Zulu. D and I understood very little of the speeches – even though the format was Western – and I felt sorry, not for the first time, that I never progressed beyond a very basic understanding of the musical Zulu language. The music was superb. There were keyboard and drums and people leading in song, but with every song there was full audience participation. The lead singer would pick up a theme and the audience would harmonise and expand on it – all the voices rich, true and perfectly rhythmic.

Tusiwe looked like a beautiful doll – her hair braided up in a crown with pearls, her crystal beaded white gown fitting like a glove and billowing out at the skirt. Her huge dark eyes sparkled with happiness. Eric, the groom, wore an embroidered cream-coloured suit. When they walked in, I had tears in my eyes.

The food was lovely and filling– chicken and a stew on rice. Vegetables and salads. Cheesecake and custard for pudding. Everthing eaten with a spoon only.

Finally, at 15:30 we excused ourselves, went to fetch M and went home so that Anna could still catch a bus to Hasa, her home town.

A magic day..

2006-09-29T14:27:00.000+02:00

Things I’ve learned recently

NO-ONE’S INTERESTED IN WHAT YOU HAD FOR LUNCH

I got a bag of pecan nuts as a gift this morning. As I opened one and tried to prize the fleshy, edible bit from the disgusting bitter woody parts, it shot out and landed in my rubbish bin. And I promptly dug it out and ate it.

Think I need to start Googling FOOD DEPENDANCE DISORDER?
No?
Okay, maybe I’m-a-mum-and-will-be-damned-if-I’m-gonna-waste-good-food disorder.
You know? The same thing that makes you eat your kids’ leftover lunches…

NOR YOUR SLEEP-DEPRIVATION

Enough to say that L and I sat looking at each other with wide wide open eyes since 22:00 last night. He has bronchitis, he doesn’t breathe well. And I’d completely forgotten that the medication to unblock his sinuses also doesn’t make him drowsy, but wakes him up completely. Not that I wasn’t warned – it says amongst the list of possible side effects: Insomnia. (Note to self: READ THE PACKAGE INSERT BEFORE YOU GIVE THE MEDICINE TO THE CHILD).

DON’T TRY AND HAVE A GROWN-UP CONVERSATION WITH YOUR HUSBAND WHILE YOUR TODDLER IS READING THE PAPER.

Because you’ll have to stop in your line of thought 1000 times to identify the make and model of every car advertised in the paper and if you’re wrong, he’ll correct you. But first he’ll scream AAAAAARGH! And your baby – who hates it when his older brother is upset – will fling his arms up into the air and look shocked and wake up even more. And just as you think you can resume the conversation, your toddler will scream AAAAAARGH! again.

“What the…?” You’ll ask.
“The paper is broken. Pleaaase fix it?”

And you’ll sigh as you put the paper together again and curse your husband’s perfectionism genes.

I HATE DEALING WITH DOCTORS

"His chest sounds wet”
“Gee Doctor. You think?” (Now would you mind writing that script for the antibiotic I actually came to collect. A bit faster, please. My child is drowning in his secretions and I need to reunite him with his suctioning machine. Also, my two-year-old is eyeing that bottle with suckers and unless you want to deal with the results of a sugar-overload in a child who has already skipped his nap….)

OUR DOGS ARE AT THE LEVEL OF SELF-ACTUALIZATION ON MASLOW’S HIERARCHY

They are desperate to move to a different (better?) suburb. Why else would they bolt out of the yard as soon as some unsuspecting human opens the gate? And only return two hours later demanding dinner. Or not at all – as our housesitter found out. Luckily a kind man got our phone number off Sam’s nametag and phoned us while we were in Stellenbosch to inform us that our dogs were resting by the side of the road 2 km from home.

THE STIFF UPPER LIP OF THE BRITISH IS NOT SUCH A BAD THING

So the neighbours can carry on with their barbeque (SA braai) while a madwoman with wild red hair stands in the cul-de-sac and shakes a balled fist after two disappearing dog tails, shouting: OKAY GO! JUST NEVER COME BACK, YOU HEAR. NEVAAAAR!

NEVER CURSE IN FRONT OF A TODDLER

Even though your dogs running away makes you feel very helpless. Because your toddler will remember the less-than-savoury word you used. And he will use it in turn. Even two months later. In front of your mother-in-law.

2006-09-27T15:38:00.000+02:00

Detour

I sat sipping my coffee in the shelter of a coffee shop in Struisbaai, L sleeping peacefully in my arm and the sun sparking off the turquoise sea in a million diamonds. M and D were playing on the white beach far below.

I’m happy, I thought. And the realization jolted me, because surely, I have had more reason to be happy in the past. And yet my recollection of those seemingly perfect times is not one of happiness…

Now I’m happy because I choose to be. Only I know how far I have traveled to get to this place… and at what cost happiness comes.

In Struisbaai all of us became sick. M coughed and L got another bout of tonsillitis. We had to find a doctor before we left for Stellenbosch.

So, my plans to visit with friends in Cape Town – a short distance from Stellenbosch -came to nothing. Early Saturday morning Elbie, the friend we were staying with, left to go to a birthday party, D attended a day-long choir practice and I was alone with the kids. The weather was sunny, but windy and cold and I stayed inside with them, promising M that we would visit the play area close by as soon as it became warmer. I couldn’t get them to nap and I kept on running up and down the stairs to attend to L and keep M from doing too much damage to a house not meant for kids. Cabin fever struck and I knew we had to GET OUT. I loaded the pram with all our suctioning equipment and the converter and battery. I dressed them as warm as I could, grappled with the double lock on the security gate and set off.

Within a few minutes I knew the outing was doomed. M kept running away from me, I couldn’t control the pram with the suctioning equipment and the battery AND keep L from arching himself out of my arms. In fact, the pram developed a mind of its own and either bumped into the curb or headed for the middle of the street. The wind blew us nearly off our feet and I feared that I didn’t dress the two kids warmly enough. Yet I was sweating from the effort. I had to stop every few meters to suction a distressed L and had to put the pram’s brake on to stop it from running down the steep hill. We turned around.

The day went rapidly downhill from there.

M arrived upstairs without his pants and diaper mumbling something about “poo”. Fearing the worst, I left L and ran downstairs and, yes, there it was… On Elbie’s lounge rug. Fortunately it was easy to clean up.

Later I heard something fall downstairs and found M playing with the T V remote control batteries. I replaced the batteries, but couldn’t find the battery compartment cover. I forced M to help me look for it, but he kept losing interest and wandering off. “Gone” he shrugged absentmindedly when I kept pressuring him. Later when Elbie came home, I confessed and – you guessed it – was told that the remote control had lost its cover years ago….

L vomited milk for the first time since he had his Nissen fundoplication done and it happened so fast and quiet that he turned blue before I realized something was wrong. Fortunately I had the suctioning machine next to me and I could clear his airway pretty quickly.

D had arranged for a trained nurse to babysit for us so that I could attend the mass choir concert that night. Even the sweet reassuring air of the nurse couldn’t calm my worry completely. Yet I enjoyed the concert and the cocktail party afterwards. It was nice talking to grown-ups and meeting D’s university friends. We came home to find both children fast asleep and happy.

The next morning we had a leisurely breakfast outside a friend of Elbie’s coffee shop in Stellenbosch. M made friends with the tame rooster and the waitresses and L dozed off in my arms. Later we drove for nine hours to Bethulie where we stayed with our pianist friend, Benjamin.

Last year, I stood in front of rows upon rows of gravestones salvaged from the second Anglo-Boer War concentration camp outside Bethulie (now covered by the Gariep dam) and cried when I saw the ages of the children who died – 3 days, 1 year, 10 months….thousands of them. I remembered the stories I was told. Of a healthy child who was sent to get medicine for a sick sibling from the camp authorities and who died after being given the “medicine” by mistake. Of ground glass being mixed with sugar and handed out with the meager rations. Of women and children being taken from the farms by the English and held in these camps where many of them died. Of farms burnt down. Of a nation that had to start over from scratch.

This year I sat on Benjamin’s wide verandah and ate breakfast listening to his latest recordings, too weary from my own battles to think about those of more than a century ago.

On the last leg of our trip, we asked M what his favourite part of the holiday had been. We didn’t really expect an answer. He is only two and a half and we visited so many new places and people. But he thought for a moment and then answered softly:

“Playing with Jaco and Carla and Tiaan and Narisa. There were cars and a tractor and I sat in the boat, Mama.”

And as an afterthought.

“I stepped in a thorn. At Struisbaai.”

2006-09-13T10:41:00.000+02:00

Apparently the fact that we are barely sleeping five hours each a night is not nearly enough punishment for us. No. We need to take our two children, overload the car with all the paraphernalia that children under the age of three need and drive
1 400 km to the OTHER END of South Africa to go and sleep less than five hours each a night OVER THERE and THERE and THERE and finally THERE for THIS.

If my husband says I don’t understand him, he is very right. (Actually it is more the concept of a reunion that I don't get. I'm just not sentimental that way.) But he has been looking forward to this for more than a year and who I am to deny him his pleasures?

Besides. I get to spend more time with him and the kids. They are too small to bicker and fight on the road and they are pretty used to travelling. I get to see friends and family that I've missed. And we visit particularly beautiful areas in South Africa. Probably a win-win situation?

We’ll be gone for more than a week. Toodledoo.

2006-09-12T11:23:00.000+02:00

200 hours of ABR in one month – Who-hoo!

If one takes into account that ABR is mimicking the breathing of a typical child for the first six months of its life to develop core strength in the torso and neck, and you work out that this amounts to between 4000 -5000 hours of breathing, then 200 hours of ABR is small potatoes indeed. But this is a milestone in that the ABR organization takes 200-300 hour’s work in a particular area as an average gauge for visible improvement. For instance – 200-300 hours of ABR on the chest should visibly improve volume and strength in the thoracic area…

To give you an indication of the handicap we are busy overcoming, I have to describe L to you.

L’s brain damage occurred as a result of oxygen deprivation after he was born. We have estimated that he has been without oxygen for at least 10 minutes (probably more). The fact that he survived is a miracle in itself.

L has sustained damage all over his brain. We were told that his CP would probably emerge as the dystonic type because of the damage to the basal ganglia (the movement centre of the brain.)

Initially L was very floppy with all his muscles being affected. We know that he can hear and see, but we are not sure how well. If I have to guess, I’d say his hearing is better than his sight, because of problems with focusing (eye muscle involvement). I still have to pluck up enough courage to test both his hearing and vision properly – we’ve tried to before, but he refused to co-operate!

Later on, L started hyper-extending (arching). This is extremely distressing – not only to him, but to us as well. And once he goes into a pattern of hyper-extension, he can carry on for hours. With the hyper-extension he started getting more spastic in his arms. His legs are not as badly affected as his arms, but I’d also describe them as more spastic than hypotonic.

Practically this means we carry L everywhere. L gets extremely distressed when he is put in a half-reclining or upright position such as in a carseat or feeding chair. Laying him down on a bed or any flat surface while he is awake causes him to hyper-extend. I think his dislike for a half-reclining or upright positions stems from his breathing problems and that, because he is so extremely weak, his lungs are compressed by a more upright position. Besides carrying him, we also have to constantly fight against the hyper-extension. Some nights I go to bed with my arm muscles burning with fatigue. He is so very strong when he is hyper-extending.

I believe that we are still like bulls in a china shop as far as the brain is concerned. Initially the hyper-extensions scared me because I thought that they are manifestations of his brain “mal-functioning”. They’re not. His hyper-extension is simply the result of extreme core weakness. Any movement he makes with his neck (which is a limb for all intents and purposes) is not controlled because his trunk is weak. So the movement is exaggerated. (hyper-extending). This scares him and he moves more (more hyper-extending) Until it becomes a pattern. I’ve noticed that any discomfort (pain etc.) triggers the hyper-extension or makes it worse.

He is not able to swallow very well because his mouth is open and his head is back. However, he does swallow. I can hear him swallow and when we feel brave and feed him per mouth (we have to close his mouth and stimulate a swallowing response) the food does come out the other end! We feed him through a G-tube 99.99% of the time due to the risk for aspirating his food and milk. We have done swallowing therapy but soon realized that we’re fighting a losing battle due to his body not being aligned properly for swallowing. In time we hope that ABR will improve that as well…

These are only the tip of the iceberg, but when we were assessed for ABR our main priorities were:

Getting L to BREATHE PROPERLY! I.e. strengthening his chest and abdominal muscles as well as his upper respiratory airways.
Getting his neck into position and his chest aligned with his neck for swallowing by doing ABR on his mouth floor.
Expanding his forehead which was very narrow by doing ABR on his temples.

D and I took a long hard look at these priorities. We realized that L is only 10 months old. We need to maximize any time we have to stop any bad habits from developing and aid him in growing into the right patterns. ABR is no miracle cure, nor does it work fast. But we have had great reports from younger kids.

So, Anna and I have been doing ABR almost every waking hour. I think our Occupational Therapist has been worried that we are doing ABR at the cost of Neuro Developmental Training and…. she’s right! But I have had to be extremely brutal in prioritizing. It does not help I try to force him into neuro-developmentally beneficial positions when his body cannot support them.

After a month of doing an average of 7 hours a day I am happy to report that:

L’s breathing has improved in leaps and bounds. Even when he is unwell or when he is battling secretions, his breathing is deep and even and involves his chest rather than his abdomen. Obviously we have a long way to go, but from now on L will also start to add to his own development by simply breathing well…

I can put L down on the bed and he will actually keep his head more in a midline position – watching us or the mobile above him. Most importantly: the hyper-extensions are diminishing!

This weekend we put him in a car seat that the OT and I have adapted to be more upright and L actually sat in it for more than 5 minutes. He wasn’t too happy, but he didn’t stress to the point of turning blue….

Also this weekend I could hold him sitting on my lap in an upright position with minimal or no support of his neck. (All neuro-developmetally correct and everything!) I even left him without supporting him in any way for a few seconds. Developmentally he reminds me of a four to five month old baby – just pre-sitting. Except that his head control is still hampered by some hyper-extensions and I don’t harbour any illusions about the possible length of his pre-sitting stage! (Then again, who am I to set a ceiling to the speed of his development….?)But he sat and watched all of us happily until he got tired and started grizzling.

I can see his temples expanding and for those of you wanting the stats: his head circumference has grown by a centimeter since July 28th. We have been told by a neurologist that his fontanelles would close prematurely. L’s fontanelles are still wide open – 3cm by 3cm at least. If you take into account that the average time for closure of fontanelles is 13.8 months and that L is 10 months old……it means his head and therefore his brain is still growing…

His mouth is more closed and he is developing a jaw line. The other night I put him down to sleep and I jumped when I heard a completely new sound from him – sucking!

Everybody seeing him is remarking on how much he has grown and how much stronger and comfortable he looks. He makes eye contact, responds to new voices and gets very annoyed when I face him away from something or somebody interesting. When I sing him songs, accompanying them with gestures and facial expressions, he watches intently and follows my face or hands with his eyes. He watches the pictures in the books I read to him and responds appropriately (as far as his weak facial muscles allow). One of the story books has pictures of a cream-coloured Labrador – looking exactly like our Sam. I read him this book and his expression of surprise – Look! There’s Sam!- is just too precious!

L communicates in his own way. The formation of specific vowels and consonants are hampered by his open mouth, but he has sounds for irritation, pain, loneliness and just talking for the sake of talking!

All in all I am feeling very positive. I take care to focus on the positive and I try and instill positive words and thoughts into both the children and my husband. Oh, I know the realities are hard and that we have a long road ahead of us in human terms. But I also know that there is a living and loving God looking after us and that I have Him to look at – not reports or scans or human knowledge….

2006-09-08T15:53:00.000+02:00

Who’s afraid of the big bad wolf?

Back in November last year when L was born, I wasn’t treated very well by the hospital nursing staff. One day, when I feel a bit less bruised, I’ll tell the whole story, I promise.
I bled profusely, had to have emergency surgery and blood transfusions. Subsequently we found that my medical records were falsified to make it look like a nurse had checked on me every half an hour. In fact, I spent almost three hours completely alone in the labour room – waiting for news on L. Later I overheard two nurses (who thought I was too out of it or too stupid) agreeing to fudge the records, acknowledging that they were going to be “in sh*t for this.”

We also had issues with the hospital about their habit of apparently warning theatre staff when somebody with a medical or legal background or any of their family goes to theatre. In our case, we were phoned by the surgeon who had to do L’s PEG surgery as he was about to start surgery. After he overheard theatre staff saying that D would “sue his pants off” if anything ever happen to L. D never said this. (It is very clear to me that the nursing staff treating me didn’t yet know that D has a legal background…)

We took the matter up with the hospital nursing manager who promised to look into it and discipline staff involved. Although we clearly had grounds for legal action D and I were too miserable about everything going wrong in our lives to spend time or energy on this. We decided to drop the matter.

A month ago we requested L’s medical records to help our insurance company investigate a fraudulent claim. The hospital dragged their feet and eventually said we could have the records on payment of more than R200 for photocopying expenses. This was when D and I decided that we had better also request my records – before they went “missing”. I also thought it would help in my healing process to confront their version of what happened.

An e-mail correspondence and some phone calls with the hospital group’s nursing manager (in another city, at the large hospital group’s head office) ensued. D mentioned to her that we were still feeling unhappy about a number of things. She expressed her concern and D asked me to write to her to tell her what my problems were. I did. Next minute we get a very short e-mail saying we should take up any outstanding matters with the hospital in question. She also said that they don’t want to withhold any information from us and that they just need to recoup any costs. The tone of the e-mail irritated both of us immensely and we responded by saying that we consider taking up any issues with the hospital, a complete waste of time. We are aware that they may not really withhold any information from us and so, could we please have both our records at their receipt of the money…? We cc’d the message to the regional nursing manager and the hospital manager of the local hospital

Within an hour we had a reply. No. An apology. The e-mail ended abruptly because the lady had “computer problems”. She actually meant to add that we could have the records for free as a gesture of goodwill.

Goodwill. Ha.
Also. Computer problems?

I cannot help feeling intensely amused by this. If I were them, I would have gone through the records with a fine-tooth comb to see if there was any thing dubious in them. And yes, I would definitely also have supplied the records for free… Who else is with me that I just may find the records “altered” to some extent? Fortunately I have an extremely good memory.

2006-09-05T11:05:00.000+02:00

I’m on my third cup of coffee for the morning while I’m waiting for the e-mail that will contain my directorate’s quarterly report. And hopefully inform me of what I need to do a presentation on at next week’s midterm review. I assume I need to report back on everything we’ve done the past six months.

Except that I cannot remember a single constructive thing that I’ve done these last six months.

Oh wait.

Spent 14 days in hospital with a sick child.
Started a blog.
Gained great perspective.
Done 255 hours of ABR.
Made new blogging friends.
Made peace with some (but not all) of my circumstances.
Seen my kids grow.
Cried countless tears.
Found new joy.

Do these count?

No?

Ah well!

I hate being a working mother.

2006-09-04T15:55:00.000+02:00

A season of change

When somebody first tells you: “If he survives, he’ll probably suffer from Cerebral Palsy”, your brain goes into denial mode. They must be wrong.

Then the reality kicks in and you think to yourself that you are living a parent’s nightmare. The most basic wish every parent has for a healthy and normal baby has been denied – in fact, you have made choices that have led to your child being denied normalcy and health. Month follow month. You’re in and out of hospital. Acceptance comes and goes. Hope remains.

Until, one day, you realize that life with a disability is still…life. And that being able to hold a small warm body in your arms is infinitely better than empty arms. This may be your life now. (Which isn’t saying that this will remain your life. Ahhh. Hope.)But there are plenty of joys to be found in the hug of small arms, fragrant wisps of hair and bluer than blue eyes and if you keep on regretting past choices and losses, the joys are passing you by.

Grace continues. And your life becomes chocolate and chili.

2006-09-01T12:25:00.000+02:00

I’m giving up. I’ve been trying to upload photos on Blogger for the past two days and it just won’t work.

So I’ll just say that it is Spring day here in the Southern Hemisphere and that, despite the still cold weather, just the thought that this long cold winter is finally over is enough to make me feel a great deal better….

It’s my sister’s birthday, too! We live too far from each other to celebrate together, but we are indeed close in spirit. When I phoned her to congratulate her she asked if I had been awake between 2:00 and 4:00 last night. As it turned out, I was and this is not the first time that this has happened either.

(Guess whose fault that was? Hmmm? Yes. Him. The one with the red hair and blue eyes. The spoilt brat who is perfectly comfortable in Mama’s arms, but starts arching and complaining when he is put in his cot…)

2006-08-28T14:42:00.000+02:00

Mousey mousey where are you?

On Saturday night as I was about to put M in bed I thought I saw something scuttle under the living room couch. I chose to ignore it because D wasn’t there and I wasn’t about to tackle whatever it was as long as it didn’t want to tackle me. If you catch my drift.

But then I heard M exclaim: “Oooooh, Mama! Just look at the sweet mousey!

And yes, it was a mouse. And rather sweet. To be precise, it was a very small shrew. It was small and sweet enough that I made the mistake of trying to pick it up....and it bit me.
I guess it’s not called a shrew for nothing.

So, I held one of M’s socks in front of it and it promptly hid inside the sock so that I could pick it up easily. I wanted to put it outside to protect it from our cats, but M protested. His interest was so joyful and genuine that I realized that I wasn’t going to get him to bed unless we do something meaningful with this mouse and I resigned myself to harbouring wildlife in my house. Not for the first time. Our cats regularly drag bats and mice and moles and, yes, even snakes into the house as “gifts” for us.

We got a large shoebox, punched holes in it, left some food and water for the mouse and placed the sock with the mouse still in it inside the box. We put the box next to the nightstand and I promised M that he could look at it again as soon as he wakes up in the morning. On Sunday morning M jumped out of bed and opened the box. And…. the little shrew had clearly departed for greener pastures….mouseholes(?) Oops.

We explained that the mousey was probably hurt by the cats before M and I found it and that it had died. It was M’s first encounter with death and for the rest of the day he kept asking where the mousey was. And then he would remember and say: Mousey gone. It was hurt.

I keep suffering from a terrible attack of guilt. I’m hoping that it was in fact the cats that caused its untimely death and not me putting it in the box…..

2006-08-28T14:22:00.000+02:00

Guilt..

D and I have planned weeks ago to attend a concert on Friday evening. We had been looking forward to it since we haven’t had a “date” by ourselves in many months and actually haven’t been out more than a couple of times since M was born. We made provisions for someone to watch the kids – and then L got sick.

Initially we both didn’t feel like going. But then, on Friday afternoon D phoned me at work and tentatively suggested that we go after all. L was in hospital and Anna (his caregiver) had offered to stay with him and our friend was still more than prepared to look after M. And we wouldn't be gone for more than three hours.

So we supressed our guilt and worry and went. We really enjoyed the concert – an a capella group. And we bought some lovely books for the two kids at a book display.

We came back late at night, went to check on L in hospital and found him fast asleep with a lovely nurse assigned just to him for the night AND Anna in attendance. My plan was to stay with him, but Anna urged me to go and have a rest. So we went to pick up a sleeping M from our friend as we had promised. The next morning, as he woke up the following conversation took place:

Him: Mama, M slept in Charmaine’s bed.

Me: Yes sweetie, you did.

Him: M cried.

Me: Oh I’m so sorry! But we fetched you like we promised…See?

Him: Don’t worry Mama. Charmaine kissed it all better.

I must say, this tugged at my heartstrings. Guilt ...intensified!

2006-08-28T14:15:00.000+02:00

Discharged

On Sunday morning L was discharged from hospital.

He has been making remarkable progress in so many ways during the past month. He has picked up more than a kilogram in mass, he is taller, he is more responsive, he focuses better and his head has grown almost a centimeter in circumference.

The change in the attitude of the nursing staff towards him was noticeable. The previous time when he was admitted, he was very sick . It was the time he had kidney failure and it wasn’t picked up before he had “crashed”. He was unresponsive, his eyes glazed and his breathing laboured. I desperately kept on insisting that he DOES respond, DOES see us, DOES hear us under normal circumstances. And I could see the doubt in the very kind nurses’ eyes.

Now they could see it for themselves and their relief was almost palpable. They talked to him, they responded to his sounds, they carried him around when he insisted on it and they picked up on his likes and dislikes.

I felt such a sense of relief...

2006-08-25T15:51:00.000+02:00

L is in hospital. Again.

His tonsils are so swollen that he can barely breathe. He was put on a minimal amount of oxygen to help with breathing.

Last night I slept next to L’s cot in hospital. Two nurses were on duty. They nebulized L, they saw that his IV fluid was running and they were both kind and efficient. They also saw to the kids in the rest of the ward’s needs.

L woke up on two separate occasions simply bubbling with secretions. It even came from his nose. He coughed and spluttered and, not being able to swallow very well even under ideal circumstances, his eyes just went big and he started choking on the gunk in his throat and nose. I usually wake up immediately when his breathing pattern changes. Last night, by the time the nurses realized that something was amiss, I had already suctioned him. The third time this happened, neither of the nurses was in sight. I could smell toast from the kitchen and guessed that they were making themselves a well-deserved (and I mean it – no sarcasm) snack. I suctioned L once again as he was coughing and spluttering his way through awful phlegm.

Next moment, one of the nurses came into the room, frowning: “Should you be suctioning him so often? she asked. “You are irritating his throat even further. “

Very good point. Except that if he chokes or his airway gets blocked by secretions, he may not be around to worry about the state of his throat. I explained as well as I could and left it at that.

When morning came, I went home to get fresh clothes and see to M. D took Anna (L’s caregiver) to hospital. When D arrived, he was accosted by the nursing unit manager who asked him that we don’t suction L as it may inflame his tonsils even further. When I arrived he duly relayed the message. And that’s when I lost it.

The ward’s nursing unit manager walked into the room and I asked her what the story was. She said that L was wheezing when she arrived on duty and that she was told that I had irritated his throat by suctioning him too often. I told her that he had been wheezing all night – even when he was fast asleep and that it boiled down to a choice between choking and throat irritation. She kept on challenging me – talking to me like a wayward child. I realized I wasn’t going to make any impression on her being reasonable and grown-up and expecting a fair exchange of opinions.

So I silenced her, not too friendly, and said that I’m not going to waste time reasoning with her. But that I do want to state one thing. If anybody questions my authority as a mother ever again or tells me what I should or shouldn’t do regarding my son, there will be huge trouble. She said she’s just acting in my son’s best interest. I said, funny, me too. She said she is just stating facts. I said, so am I. And the fact that I’m stating is that I’ll polish the floor with anyone ever talking to me again like you just did. (very grown-up of me, don’t you think?)

D was furious with me. He has a point, of course. I could have acted with more grace and patience. And I’m shamed when I realize that in an exchange like that there really cannot be any winners. But man! I really felt provoked and vulnerable and misunderstood. And I don’t take kindly to such a supercilious tone of voice. They call me, “Mom”. The only people allowed to call me Mom are my kids. It’s the same as the irritating habit (mostly nurses) have of walking into a room and sunnily asking: How are WE.

Dear. Last time I checked I was fine. I actually don’t give a rat’s ass how you are.

(Writing it down like this makes me see how funny it really is! Next post I’ll have a better demeanor. Promise. If my child could just get out of that hell-hole!)

PS And this, dear friends, is the problem with LIFE. I think I’m all saintly and can now finally not “sweat the small stuff” and then. BAM

2006-08-24T09:28:00.000+02:00

Christening

L's christening went well and in the end only my parents attended.

M couldn't decide if he wanted to help bring his brother to the front of the church or wanted to be with D and I. It certainly brought a bit of comic relief! Especially when he clung to a pair of legs he thought was his father's and it turned out to be the minister's. He was horrified when he realised his mistake. My mom was there to save him , but I still felt sorry for him. I tried to explain the concept of a christening in simple terms: Jesus shows that he loves us thaaaaaaat much....but I'm sure the whole thing seemed a bit confusing to him. L certainly didn't appreciate the water on his forhead and started sobbing...

Afterwards people (some of them strangers) came to us and congratulated us. They told L that they love him and that he is a blessing to them. It meant a lot to me.

That night we witnessed how God has been with us through difficult times. I also tried to explain what it is like having a child with special needs. For this I used the Christy Everett's post A year later... thanks Christy for giving me permission to do so! One of our ministers also witnessed about his depression and how he finds it difficult to see God in the midst of it. He shared that L's christening brought him comfort in the knowledge that he has also been baptised. I think what he meant was that we may feel that God is far, but that God still has a relationship with us (despite our feelings and our depression) and that He stays unchanging. He loves us no matter what and is able to fix what is broken...

L wasn't well that day - lots of arching and hyperextensions. It always causes him to be less "there" - as if he is in a world of his own. So, taking pictures posed a bit of a challenge. I've been holding off posting them - hoping that I could use my usual picture hosting service, but I'm unable to access it for some weird reason. So, given the time Blogger takes to upload images, I'll stick with only the two pictures for now. More later, I promise.

2006-08-17T08:07:00.000+02:00

To sleep..perchance to dream.

A while back I decided to see a psychologist. It was after I broke four plates one morning before breakfast. On purpose. Actually, it wasn’t so much the plates that worried me – even though they were my favourites. It was the fact that I really wanted to throw them AT MY HUSBAND that scared me. I realized soon that the breaking of the plates was much more therapeutic than seeing the psychologist.

Anyway. So, she asks me what I dream of. (Hey! Here is somebody who’s being paid to listen to my dreams. How lucky can I get?) But I couldn’t recall a single dream. How many hours of sleep do you get at night? she asked. I tried to count on my fingers. Wellll…four? Maybe five?

Ahhhh. She says sadly. To dream, we need at least six consecutive hours of sleep a night. You can’t recall your dreams, because you’re not dreaming! And you need dreaming to make sense of the world around you.

You must be kidding, Lady. I blog.

But yeah. The lack of sleep is getting to me. Last night I kicked D out of bed to go and suction his son at 1:00 and slept for another two hours. (The plate incident must have made more of an impression than I realized.)

D woke me up at 3:00 and after that, it was L and me until the others got up at 6:30 this morning. At some stage I thought, Carpe Diem, or something to that effect and hauled out the ABR stuff. L immediately started protesting and yawning pointedly. OK, I said. But he also didn’t want to sleep so I just lay down next to him and kissed his head. Drifting in and out of sleep, I thought, his head feels funny. Also he was snorting very indignantly. Then I realized I was sucking on the tip of his nose.

2006-08-14T15:41:00.000+02:00

Rites of passage

A christening is a rite of passage. It is an affirmation of the belief that God includes our little ones into His plan for the world. It is an acknowledgement of faith. It is an occasion to be joyful and proud and for family togetherness.

This Sunday, God willing, we would like to christen L. My parents will be there and I’m considering asking my mother and older son to jointly bring L to the front of the church. I’ve been thinking that I need to get a smart outfit for L, have M get a haircut and buy a new dress for myself. We’ll invite a few friends for tea afterwards and hopefully take lots of pictures.

That evening D and I have been invited to share our story. I plan on making the most of it. I hope and pray that I can make people understand that they should look beyond the label. I want to focus on the positive. I want to thank God for my son’s life in public. I want to speak life.

But in my heart there is a small pang of sadness.. D’s parents won’t be there. D’s father is a retired minister of religion and he has christened all his grandchildren so far. We’ve asked him to also christen L, but he has declined. On a practical level, I can understand this. He suffers from Bell’s palsy and he is, after all, 76 years old. I can see that it may be emotionally difficult for him.

The fact that they won’t be attending the christening at all is another matter. However much I try to understand and explain it away to myself, I just can’t. My in-laws are very sentimental and family-oriented people. I’ve known them to travel 500km to attend a school concert….

D has accepted their decision with uncharacteristic quietness. And this bothers me more than I would care to acknowledge.

Whatever our shortcomings in the eyes of the world, God accepts us as we are. There is nothing we can be or do or say that will change his love for us. Families are God’s representatives on earth. Our love is an echo of God’s love. It is unconditional love.

And when my little boy with the heart of a lion faces the curious and judgmental eyes of strangers, I want him to be bolstered by that kind of love. The kind of love that makes people blind to imperfection. I want him to be surrounded by family. Preferably ALL of his family.

But if it cannot be, then that’s how it is. Then our love will just have to be enough.

2006-08-10T14:12:00.000+02:00

More on lemons …er.. limes

Our two-year old son is at the stage where repetition is very important. His favourite video is Stewart Little Two. He has managed to memorize passages from the film. Heck. He watches it so often that even I am able to quote whole scenes.

Taking into account that English is not our home language, it is clear that his quotes from the video have nothing to do with the meaning of the words, but everything with the sounds.

“Falcon!”he’ll yell, giggling madly.
“Catfish!” This one cracks him up no end. Catfish must be the funniest word in the English language.
“GRRR. Hairball. Major hairball!”

And then the grand finale. Wait for it.

“I’m a LIME! I’m a LIME!” (I’m alive. I’m alive.)…

Remind me to record this so that I can blackmail him once he is bigger…

2006-08-08T16:09:00.000+02:00

Edited to add link ABR - more info

ABR (Advanced Biomechanical Rehabilitation) is a fairly new and reasonably unknown rehabilitation program, but there are ABR centers around the world.

My understanding is that there are mainly two ways brain damage could be approached. One is through therapies that target the nervous and sensory systems. The other is bio-mechanically. I think that both have a place and should preferably be used together. We are choosing to focus on biomechanical repair for the moment because L’s sensory integration (not to speak of his health!) is affected by his poor biomechanical condition. But even people with reasonable biomechanical structure could benefit from this therapy.

ABR strengthens the smooth muscles in the body (the muscles that surround organs and make up most of the volume of the body) through a hands-on technique. Smooth muscles are usually the ones affected most by brain damage in terms of volume. And because there is no volume in the torso, neck and head, the outer muscles and skeletal bones are not aligned correctly and limit functionality of the torso, neck, and limbs and even lifeline functions such as breathing. Once volume, strength and correct alignment is achieved, the brain receives a correct electro-mechanical picture of the body and is able to find pathways to restore normal function such as head control, sitting crawling and walking – in that order.

ABR do not claim to improve brain function or mental ability. But often these also improve with an improvement in structure. Human beings are so complex that straightening out one problem often causes a ripple effect with positive things happening even on emotional level.

The technique is spectacularly non-spectacular! But it works.

Look at the Belgian ABR website (in the links sidebar of this blog) for more info. Also see the Canadian ABR website which gives a very good explanation of ABR.

2006-08-08T15:58:00.000+02:00

Lemons

We’re back from Johannesburg. And boy! Am I glad. We’re not used to spending hours in traffic – which is exactly what we had to do the whole week. In freezing temperatures and with an irritable two-year-old and a sick baby in tow. Fun? Not.

Krista and Kris from Belgium presented the training sessions. They were appalled by L’s condition and they want us to put in more hours of ABR therapy. They are reasoning (correctly) that his life is currently in danger and that we need to help him with his breathing as soon as we can. So we are going to concentrate on chest ABR, head ABR and mouth floor exercises. Five hours a day. Yep.

To prove them right, L’s secretions developed a nasty colour while we were in Johannesburg and we took him to the ER to have him assessed. While we were giving one of the trauma nurses our history, another came back from her tea break, gave an arching and noisily breathing L an alarmed look, grabbed him from me and started yelling for oxygen. I literally had to run after her and grab her arm to stop her. When I explained the situation, she laughed sheepishly and said she couldn’t understand why her colleagues were standing around doing nothing. L gave her one of his focused stares and promptly decided she’s a GOOD THING. I don’t think he minded being in her arms one bit!

Even so, X-rays confirmed that the bronchio-pneumonia was back to a degree. We got given another course of antibiotics and it finally looks as if his lungs are better now.

I am once again very impressed with the improvements in other ABR patients. Clint, a thirty-odd year old man with muscular dystrophy has deteriorated to the point where his breathing was affected and he couldn’t even smile any more. After six months of dedicated ABR therapy by his mother and wife, he looks like a new person. His face has filled out, he can smile once more, his eyes are more prominent and he seems much happier. Stephen has autism. The structural changes in him are noticeable, but the big surprise is the improvement in his behaviour. From storming into a room and destroying things, he can now greet, interact and obey commands. And every other patient had his or her own little victory..

We learned a lot and we were reassured that our technique is correct. It would be truly heartbreaking to spend all those hours and not do it correctly.

We were motivated by stories of drastic improvements on younger children. It is definitely to L’s advantage that we started earlier. But, as Clint proved, you don’t have to be very young to also benefit.

Now it is just finding the hours that remain a problem. L has “co-operated” by not sleeping more than four hours a night for the past three nights. Well, you know what they say about life handing you lemons…

2006-07-31T15:34:00.000+02:00

Soldiering ahead

It took a bit of soul searching to decide whether we should soldier ahead with the ABR training this week. L has after all just been discharged from hospital.

Apart from being a bit more verbal and nervous (crying more and making sounds I haven’t heard him make before) L seems okay. It is possible that everything is just loosening up in his lungs or the fact that he is trying to cut two teeth simultaneously, but he is simply pouring with secretions.

As a matter of precaution, the paediatrician has suggested that we put him back on a minimal dose of phenobarbitone. I don’t think that the jittery movements we have seen in hospital were seizures. I do think that they were reactions to stress. Having a tube down your throat and a rectal thermometer probably would stress anyone out. I’ve noticed in the past two days that he shakes after we suction him – especially after a lengthy suctioning session. Which kind of reinforces my stress reaction theory. I wish suctioning weren’t necessary.. As for the phenobarbitone, he is on barely 5 mg once daily whereas he used to be on 20mg twice daily. (We discontinued that in February after three EEG’s didn’t pick up any seizure activity.) And the doctor only prescribed the current dose for a week.

Anyhow, we have decided to go ahead with ABR. We’ll travel to Johannesburg tomorrow to attend an evaluation and then on to Pretoria where we’ll stay with family – an aunt of mine and her husband. D’s sister offered to look after M for the two hours every day we will be involved in ABR. We should return home next Sunday.

I am looking forward to have him properly assessed and have Anna, his caregiver, receive firsthand training from the experts. I am also looking forward to the time with both boys. Just hope L keeps on improving in terms of health…..

I’m feeling a bit tired and overwhelmed at the moment. Thanks for your comments to my earlier post – it really boosted my courage. I’ve noticed that my policy of taking one day at a time is effective, but when I’m down, it seems like I lose touch with the goal. I need to lift my eyes from my feet – taking one step at a time – and focus for a brief moment on the dreams I have for tomorrow.

2006-07-28T14:36:00.000+02:00

So, we had to face the choice we knew we most likely would have to make at some stage or another…

A fever that I could not bring down, hospitalization for broncheo-pneumonia and by Thursday evening last week, I thought L was on the mend. I was totally unprepared for D’s panicky phone call from the children’s ward at the hospital:

“You better come quickly. His Oxygen saturation is 50% and his heart has stopped.”

By the time I arrived, a sleepy M in my arms, the paediatrician and trauma doctor was there and they were resuscitating him. The night nursing manager was also there and she grabbed my arm: “Pray” she whispered urgently.

I stood watching them.

“Lord. “I prayed. “I’m not ready to let him go, but you know best. If you take him, just, please take him now.” I was shaking, but after praying, I could feel myself calming. One of the doctors left his side and I went to stand next to his cot.

I called his name and he responded. I told him that I love him and asked him to fight. He gave a little sigh as if to say that he was trying…

The doctor called us to one side:
Suggesting making him comfortable. Not to ventilate. His condition (CP) is quite bad. Bla Bla Bla.

In other words: Let’s leave him to die.

I could see D was halfway convinced and I knew I had to do some very fast talking. Staying very calm, I stated that I disagreed. I reminded the doctor that he only saw L as a very sick baby. The degree of response is not like he usually is. He is a little boy with the ability to respond, love and the will to live. If it means ventilation, so be it. We cannot and we don’t want to keep him ventilated for ever. But we owe him the chance to fight.

I saw clear relief in D’s eyes. The doctor clearly disagreed, but he transferred L to ICU and ventilated him.

By the next day we had a diagnosis. Kidney failure. The toxins in his body were double the levels of that of an adult. They supported his respiration, brought down the high levels with medication and gave him antibiotic. Two days later, his kidney function was restored and he was on minimal levels of ventilation. On Monday, he was taken off the ventilator and this morning I could take him home from hospital.

I was interesting to see the nursing staff and doctors starting to respond to the little boy behind the label. I think we have all learned something about courage and the ability to be happy despite circumstances…

Once again, a miracle.

2006-07-17T11:51:00.000+02:00

Miracles

“You’re my life’s one miracle” sings Celine Dion. The city’s lights are flickering on down in the valley as the last light is fading away. The full moon hangs above the city -getting more and more luminous the darker it gets.

We are twirling and rocking with the music, L and I. His fragrant hair tickles my neck and his rag doll body is so close to mine that I can pretend that we are, once more, one. That he is still safely inside of me. He is so quiet that I suspect for a moment that the music and rhythmic movement had lulled him to sleep. But when I peek, I see that his eyes are wide open and blue. He is content.

Happy that his tummy is full, that his nappy is dry, that he has no pain and that the noonoos in his throat are not suffocating him. He is happy to have my full attention and not having to compete with his brother’s wails: “Put him down, Mama!” The lot in life of a second child…

Supper has been prepared and the other two men in my life have left to run an errand. For the moment I don’t have to tune in to three channels. I don’t have to feel nagging guilt about the portions of attention and time that I have to measure out during a day that, after all, has only so many hours. I don’t have to stretch my lap by layering legs, M’s under mine, L’s over M’s tummy to accommodate M’s need for a quick nursing session. I can cuddle with L, kiss his reddish-blond wisps of hair and I can even dry a few tears listening to the sentimental songs. When Celine sings:” If I could, I’d help you cross the bridges that I burnt” my tears run a little faster and I breathe, ” Oh Lord. Please…”

When I pray, I don’t pray for acceptance or strength. I love my son unconditionally, but I choose not to accept the CP that makes his life a living hell sometimes. And strength? Strength is a given, because after all, what other choice do I have? No, when I pray, I ask for 100% healing.

I start with his head and work down to his toes and I pray for the perfect workings of each and every aspect of his body and mind: A clear mind, the ability to remember, understand, interpret and solve. The ability to perceive and hope and dream and interact with others. Emotional stability. I pray for sight, for hearing, for smell and taste. I pray for eyes that can blink and a mouth that close. I pray that he will be able to swallow and suck. I pray that he will be able to nurse. I pray that he will be able to speak. I pray for a strong and healthy body, the use of his arms, legs, hands and feet. I pray that he will be able to sit, stand, crawl, walk, jump and run. I pray that he will have life in abundance and I even urge the Lord to hurry up! But He knows that there is a time for everything and this I have to accept.

This weekend we met with acquaintances who I hope could become friends. They belong to a small church and this whole congregation – total strangers to us - took us under their wings while L was in hospital. For two weeks straight, they brought meals to our door once a day. Always with the simple message: Accept this with our love. I know that they have been praying for us ever since.

After watching the ABR DVD with us and experiencing the difference that this therapy made in the lives of some children and young adults, Dene said:
“I am going to pray from now on that the Holy Spirit will work in synergy with what you are trying to do with ABR. For every hour that you put in, the Lord will add many more.” And right there, with M taking a bath 23:00 at night and with me holding a wide-awake L, this is what she did. As the words tumbled out and mixed with the pleadings of my heart, I could see them rise beyond the ceiling…up…up to where they belong.

2006-07-14T11:48:00.000+02:00

Sleep training?

If anybody has some advice for me, I'd be grateful.

I have never been fond of the idea of sleep training/ crying it out. With M, we slept badly for 16 months. He would wake up four or five times a night, I'd nurse him back to sleep and he only started sleeping through when he started walking. He has also been sleeping with us since he was a few months old. Getting up every time, was just too much for me.

L has actually been sleeping better than M at the same age. Especially in the hours between 20:00 and 2:00 when he may only wake up once for a 23:00 feed. But when he wakes up in the early hours of the morning, I can often forget about sleeping again. He produces one stinky nappy after the other - and to him this seems to be enough of an effort to keep him awake. In order to get enough sleep, I have to go to bed the same time as the kids 19:30 -20:00. Needless to say, this leaves me with no time to do anything!

L has breathing difficulties. Because he doesn't swallow well, his airway gets blocked quickly by saliva and sectretions from his lungs. If I position him correctly, he can sleep for a few hours or more without needing suctioning. But once he is awake, he is sufficiently annoyed by the stuff in his airway to start stressing - making his breathing sound awful. In the past the slighest change in his breathing would have me awake and running to pick him up.

In actual fact - and I've only realized this fully during the past week or so - he is often capable of reposistioning himself so that he can breathe and settling himself back to sleep. By taking him out of bed and suctioning him, I'm only managing to wake him up even further.

I've changed his feeding schedule to 200ml 5-6 times daily. If he is sufficiently awake during the nightshift, I'll give him the extra feed at 3:00. If he isn't, I assume he is not hungry enough and I leave him to sleep.

He has also been getting more solids during the day. (Some of it even successfully by mouth as evidenced by the butternut-coloured nappies I change. Yay!) This seem to postpone the need to produce a stinky nappy. This morning, he only woke up to poo at 5:30.

The thing is: I want him to sleep well. For his sake as much as my own. But how do I achieve this?

Please share with me your thoughts and experiences?

2006-07-07T09:17:00.000+02:00

South Africa

Since the US has just commemorated its Independence Day, I thought that I would put up a little photo collage to show you some of my fondest memories of South Africa and why I am also feeling patriotic about my country. Well, mostly!

I’m not good with web design, so I’m going to venture into the unknown and try and put together a video - which I'll leave in the sidebar area as soon as I get it done. Brave of me, huh? This way I can tell you the stories behind the pictures too. But I'll also include the pictures in the body of the post so that you can view them that way.

Some of the photos are of before we had children and some of them feature a much younger M. We simply haven’t had that many photo opportunities with L yet, but I’m hoping that we soon will. So, let’s start, shall we?

When anybody mentions the word South Africa, this is the picture that immediately pops into my mind. All shimmering heat and hazy wide open spaces. The picture was taken on my dad's Karoo farm 40km from Beaufort West in the Western Cape. The Karoo is semi-desert - very dry, sparsely populated and only suitable for game or sheep farming.

The Drakensberg is a mountain range stretching over a large part of South Africa. Literally it means "Mountain of the Dragon". Its rocky peaks are no use for rock climbing as they are of sandstone. Snow - an unusual sight elsewhere in South Africa - can often be seen on the Drakensberg in winter. We live close to the "Berg" - as it is known. The photos were taken in May last year and show D, my husband and M, our son on happy meanderings in front of the Cathdral Peak and Monk's Cowl. We were too close to get decent pictures of the peaks, but you get an idea of the landscape. D was brave enough to even go swimming in one of the icy cold rock pools.

This is cheating! But this is my blog and I can cheat if I want to! Of course Namibia is not part of South Africa. But is is part of the Southern African region and SO worth sharing with you.

The first photo was taken while we went quadbiking in the Namib desert in the dunes outside of Swakopmund during June 2002. I always feel that having a desert with the sea's waves lapping in the background is such a contradiction in terms!

The second photo of Namibia was taken in June 2004. M is four months old and climbing the highest dune, Dune 45,
in the Namib desert with his dad. I'm standing below them, literally shaking with fear and pleading with D to come down with my baby. M, of course, wasn't in the least phased by the adventure...

Sunrise, one late winter morning. The view past the deck of our house. I was trying to capture the blooms on the tree in front, but of course it was still too dark. I like the silhouette effect it creates, though. We live in an area that could be described as sub-tropical. A troop of monkeys regularly visit and drive our dogs to distraction. A bushpig also appears occasionally.

This is Oubos - on the Southern coastline of South Africa.
It is in the Tsitsikamma area which consists of large areas of natural bush with some huge centuries old trees. Because it is so far South and because of the angle of this particular little beach, this is one of the few places in South Africa where the sun seems to rise from and set in the sea.
Oubos is a pretty special place. The smell of fynbos – bushy plants smelling like herbs – permeates the air and fights with the smell of the sea.
The photo was taken at the end of one hot December day in 2002. Friends had invited us to stay with them at their beach house in Oubos and I’m sitting on the rocks just outside of their house.

Howick is a small town in the KwaZulu-Natal Midlands. The scenery in the KZN Midlands reminds one of England - rolling green hills, heavy fog and stately old homes. The Howick falls are quite beautiful and the area surrounding it consists of a little "rain"forest.
This photo was taken close to Christmas 2002. I’m posing with my sister and her husband.

Ostriches are funny birds. This one
we encountered on a farm in the KZN Midlands.
The likeness between the ostrich and M stems from an interest in the camera with its buttons and the glare, but it is very amusing, isn't it? M is 11 months old.

2006-07-04T14:22:00.000+02:00

The angels along the way – Mama Gloria.

In this journey of ours we often meet people that seem to have been sent to us by God. In my life, and especially since L was born, I have encountered many of them. The minister of our church once put it very succinctly when he said that sometimes we needed to be “Jesus with a skin around” to people in need.

Today I would like to give tribute to one of these angels. She isn’t distinguished by her beauty or intelligence or the fact that she is rich – although she has all of these things in abundance if I think about it carefully. But to me she personifies the courage and strength of women who triumph over adversity all over the world.

Esperanz, for that is her name, her husband and two of her younger siblings fled Rwanda after the war more than ten years ago. Her older siblings and parents were all killed in this war.
“We couldn’t even bury our people” she said.” Their bodies were left on the streets to be carted away.”
I could see that this still caused her considerable anguish.

They fled to the Republic of the Congo where another war broke out. Destitute they spent three years in a refugee camp in Malawi. Eventually they decided that they had to create a better life for themselves. They wanted to go to a place where they would finally be safe. They chose South Africa for its relative political and financial stability in the Southern African Region. Also for the fact that, beside their native language they speak French and a smattering of English and that most of the countries in Southern Africa use Portugese as a lingua franca. South Africa uses English.

Not knowing more about South Africa other than that they didn’t want to move to KwaZulu-Natal because of the bloodthirsty Zulu people who live here, (my Zulu friends would probably have a good giggle over this) they chose Cape Town. I didn’t ask Esperanz how they managed to emigrate or how they survived at first. Knowing the shanty towns of my home country, I dread her answer.

But now things seem fine. She is employed as a nanny for my friend Izelle’s three children. It is her job to see that the kids get dropped off at school, get to their extramural activities and get home, fed and do homework. At four in the afternoon she leaves to pick up her own children from school and then goes home.

Soon after they arrived in South Africa, Esperanz’s young sister was diagnosed with a malignant brain tumor. She was hospitalized and her condition deteriorated steadily. For three years Esperanz visited her in the Red Cross Hospital in Cape Town to touch her and talk to her and to try and tempt her with home cooked food.
“I believed that she would be healed until the day that she died.”
She was thirteen years old.

In the meantime Esperanz’s own three kids were born. Two boys and finally, the little girl that she wanted so much. Now Elsperanz is, according to Rwandan culture not Esperanxz anymore, but Mama Gloria (Gloria’s mom). Her face lights up when she speaks of her children, like all mothers in the world

In Cape Town Esperanz drove me and the two boys to the Red Cross Children’s hospital in Izelle’s car so that L could have his milk scan done. She sat with me until she saw that I would be helped and that we would be okay. Then she took M back to Izelle’s house and entertained him until we finished our business at the hospital and she could bring him back to me.

Her sweet smile and loving manner stayed with me long after we left Cape Town. Her story will stay with me for a lifetime. And her faith, her faith I hold in my heart. For this is what sets her apart from the rest of the world.

Mama Gloria, I salute you.

2006-06-30T11:50:00.000+02:00

Adjusted expectations
This time last year, a friend phoned to say that he would be in town at the beginning of May and to ask if he could stay over with us. As a confirmed bachelor he does not relate to children at all. I answered that he would be welcome, but warned that he would have to contend with a six-month-old and a two-year-old. My mental picture was of messy mealtimes, teething problems at night! laughter and gurgling. I thought I knew what to expect and I was looking forward to it.

The reality has been a constant adjustment in expectations. But then, sometimes I am surprised so pleasantly.

At the OT session on Wednesday L looked like an elderly gentleman about to fall asleep in his soup. Shelley (the occupational therapist) sat on the floor with him on her lap. She was trying to show us how to go through the normal range of motions of sitting up. L nodded off, sometimes waking up just long enough to give an exaggerated sigh, co-operate for a second or two and then fall back asleep again. We were just about to write off the session as a waste of time, when M and Shelley’s two little girls stormed into the room. L woke up immediately: Kids! Kids! Why didn’t you say? What did I miss?

D made the mistake of introducing M to a DVD game and did not take into account that it would require constant input from us… He also kind of forgot that M is at the age where he likes to have everything repeated …e…several times in a row. So, after supper on Tuesday night we sat and played the game with M. After every correct move, we cheered loudly. L sat on my lap and after a few cheers I realized that he was “cheering” along with us happily:
“Ghuuuuuu!”

L and I play a game where I lift his little hand to my mouth and kiss kiss kiss it. Eventually he starts lifting his own hand to my mouth. A few times recently I have noticed that he watches my long hair intently and makes a little movement towards it with his hand. So, I’ve taken to helping him to bat at my hair with his hand. At the OT session he also tried to play with Shelley’s hair (well after the kids got him to wake up!)

This morning I washed my hair when I showered. Hearing him wake up in the next room, I toweled myself dry, dressed and wound the towel around my wet hair. I then went to pick him up and suction him. As I sat down with him on my lap, he focused on my face and seeing the towel where he is used to seeing hair a look of complete consternation crossed his face: Mama, why is your hair….pink?

I feel honoured to say that he prefers being in my arms to anybody else’s. My mom was holding him the other day and he threw himself backward repeatedly. Just as I was about to get worried over this new thing, I noticed that he was looking at me. So, I took him from my mom. And voila! He stopped and settled down with a contented sigh.

His brother demanded to be tucked in for his nap by “Mama. Not granny. Give L to granny.”
So, I gave L to my mom. I picked up M to take him to bed and behind my back both my mom and D burst out laughing. L’s face was a study in indignation: Where are you going with my mom?

2006-06-29T15:05:00.000+02:00

I guess it’s just his condition…

When the idea of a Percutaneous Endoscopic Gastrostomy (feeding tube fitted into the tummy) was first suggested to me, my gut reaction was: OVER MY DEAD BODY. The paediatrician dropped the subject like a hot potato. But a few weeks later he was back nagging about it.

“You can feed him a steak, if you want to!” he cajoled.
The idea of liquidized steak made me feel like vomiting and I rather did not say that eating steak without being able to taste it was in my opinion rather like listening to the radio with your ears removed. I could feel tears stinging my eyes, but I refused to give in to the impulse to cry.

The doctor quickly sketched a diagram on a writing pad. Even though he tried to be nonchalant his hands shook and he dropped his pen a few times as he explained the procedure. He could probably feel my resentment crashing against him even though I didn’t say a word. He suggested we speak to a couple whose child had a feeding tube fitted soon after he was born and who was now four years old.

With the type of black humor I’ve come to associate with parents who’ve been through the mill, they said: “Look on the bright side. He can’t tell you the food tastes vile. He’ll never be able to refuse to eat and he has to eat his vegetables.”

After attempts to scare me with horror stories of how a child can drown in milk if the NG tube is not in the correct place and how he would have difficulty swallowing as long as he had the NG tube, I still held the trump card: “Suppose he does not survive the operation? He is only a month old and he’s been through such a lot. Can’t it wait?” I pleaded.
“He’s never going to get stronger or more alert. And he will never swallow. Accept it.” the NICU nurse said. Brutal. (Wish you could see him today, Cupcake!)

“If we have the PEG fitted tomorrow, you can probably take him home on Friday.” They were blackmailing me and I knew it. But I was so tired of kissing his downy head and leaving him in the care of strangers every night. I was tired of leaving my older son in tears. I was tired of asking permission to bath, pick up and feed my own child. My baby. Home. Finally?
I relented.

He came out of the theatre after being anaesthesized for far over an hour (Too long. Too long.) with a heart rate of 200 bpm, the blood pressure of an adult and with jerking limbs. For five hours I watched helplessly as they tried to stabilize him. When I took his hands or held his foot, the jerking stopped. I questioned their observation that he was having seizures, but they gave him the medication anyway. The only vein they could find was in his head. The medication caused an allergic skin reaction…But, he is a fighter and God is good. His heart rate and blood pressure finally went down and the jerking stopped. He slept.

I took him home on that Friday. The moment I had the discharge form in my hand, I bundled his remaining clothes in a bag and almost refused their offer of a discharge bag of goodies (lotions and soaps and a teddy bear) in my haste to get the heck OUT OF THAT PLACE with my baby.

And so my love-hate relationship with the PEG started. It was always in the way –getting caught in my clothes, his clothes. He pulled on it in his sleep, causing my heart to nearly stop a few times - the TRACTION REMOVABLE sign on the PEG uppermost in my mind. A threat or a promise, I wondered.

As for him not being able to refuse food….I grimly wished I could haul those parents out of their beds in the middle of the night when 5ml of milk took half an hour to run in due to him tensing his stomach muscles. Something hurt and nobody could tell me what it was. After initially picking up weight he started losing until he weighed less than his birth weight. He writhed and panted for hours and eventually even started crying after being completely silent for two months. I wished I could find joy in finally hearing his voice, but I couldn’t. Not when he was crying in pain.

A Nissen funoplication followed. Although the operation went far smoother, he was still in pain around every feeding time. And he still wasn’t picking up any weight. We went from one miserable doctor to the other until I finally lost every ounce of patience with and trust (not that I had a lot to begin with!) in the medical profession.

The original port on the PEG had to be replaced – by a fancy new port which didn’t allow the feeding syringe to fit properly. Time and again I ended up in tears as the syringe slipped out and the (liquid gold) pumped breastmilk ended up on the floor, all over me and L and every other damn place except in his tummy! Finally the PEG support company devised a feeding attachment that would fit the port and into which the syringe fitted snugly.

We had a milk scan done which didn’t show up anything funny. Eventually the doctors collectively shrugged their shoulders and concluded that the pain he was experiencing wasn’t pain at all and was a reaction due to his “condition”. And they washed their already snow-white hands and sent us off to deal with this “condition”.

We started loading his food with calories – adding supplements meant for preemies and even adding formula feeds in an effort to maximize his energy intake. He would pick up 500 grams in a week and then spend three days writhing, sweating and crying in…nothing, I guess… must be just His Condition (insert heavy sarcasm). After the three days he would have lost every single gram that he gained and more. Life was hellish, thank you very much for asking.

Around five months of age, the periods of pain became less frequent and eventually stopped altogether. Old-fashioned colic with a new twist? A raw area around the PEG on the inside of his tummy being irritated by stomach acids? I don’t know, but I’d love to..

And so the PEG remains. My son swallows, but not efficient enough to allow feeding by mouth. ABR will finally address the weak muscles in his throat and the posture that keeps him from swallowing. I still occasionally threaten to remove the PEG (by traction or otherwise) when it annoys me. And I WILL get that doctor to demonstrate feeding a steak to my son when the time comes, even though I keep on hoping that my son’s swallowing will improve. I would love to see the doc manage to keep the tube unblocked when something like applesauce regularly blocks it .

2006-06-28T14:30:00.000+02:00

Life stories

A couple of months back I visited my home town a few hundred kilometers north of where I currently live. My parents and D’s parents still live there. I saw a girl (let’s call her Wendy), I finished high school with. We traveled to school on the same bus and although we were never friends, we got on well.

Back then we all had our problems. My parents, farming folk, went through a rough patch financially – a few crops failed and although we had enough to eat, there wasn’t money for much else. Wendy’s parents were rich. They had inherited extensive properties and money from both sides of the family and there was no real need for them to work. They were a sweet and loving couple and they were excellent parents to their three young girls. When they weren’t drunk.

The three girls – of which Wendy was the youngest – were forced to be independent very quickly. Like most farm kids, they learnt to drive as soon as they could see over the steering wheel. They even had their own little pick-up truck which they drove from their house over the farm roads to the bus stop. One night Wendy and her parents went to a motel some distance (+- 30km) of where they lived. The parents drank too much and were in no condition to drive. Wendy (11 years old at the time) got both of them to lie down on the back seat of the car and started the long drive home. A traffic cop saw a vehicle apparently driving itself and pulled Wendy over. Stunned by the image of a little girl behind the steering wheel, he started spluttering and lecturing Wendy. She merely pointed to the back seat: “Want one of them to drive?” she asked. The cop saw that there was not much else to do but drive behind Wendy to see that she gets home safe.

Although we were always aware of their alcoholism, Wendy’s parents seemed relatively harmless when they were drunk and the girls usually managed fine. One day my mother received a phone call from one of the girls. She was clearly panicking. Her parents were drunk and for some reason they were getting violent. Her dad was waving a gun around and threatened to shoot her mum. Could we please come and help. My parents drove over, managed to diffuse the situation and got Wendy’s parents to sleep off their stupor. My mom gently suggested that the three girls stay with us for the night. The fact that they eagerly complied, showed how scared they were by the episode. They packed their pajamas and school things for the next day. My mom helped them with their homework, fed them supper and tucked them into bed. The next morning we ate breakfast and my mom took us to the bus stop.

The moment we got on the bus, we awkwardly went to sit in our usual seats. I heard the three girls whisper and after a while, one of them came over to me. She pressed a bank note into my hand and mumbled something about buying myself an ice cream. With the amount she gave me, I could buy twenty ice creams and a new pair of shoes – and we both knew it. I blushed, but I knew better than to refuse the money. I knew what it must have cost them to rely on us – if only for one night.

In our final year at high school, Wendy’s mom was diagnosed with cancer. She died a short while later. Her dad went into rehabilitation a few times, but it never lasted long. He ended up in jail a few times after being arrested for drunken driving. Eventually his liver gave up and he died a few years ago.

After studying, Wendy opened her own optometrist practice in our home town and got married to a young farmer. They currently live with their two kids in town during the week and on the farm she inherited from her parents over the weekend. Wendy and her sisters have grown into three lovely women, but their troubles seem never-ending. Two divorces, the death of a spouse and a violent attack on Wendy’s in-laws (unfortunately a regular occurance in South Africa) have left their marks on the family. To top it all, Wendy was diagnosed with an aggressive type of cancer about three years ago. It was found and treated in time to give her an excellent prognosis, but she is grateful for every year she spends in remission given the fact that her mother died of cancer when she was more or less the same age.

For people who hadn’t seen each other in years and were never close to start with, we quickly got to the heart of the matter and talked freely.
“You know, I am grateful that I am the sick one. I would never be able to handle one of my children being sick or disabled” she said, looking at L.
I thought to myself that, given the choice, I would probably choose to be the sick one as well. But I kept my mouth shut. How would I really know, not being in her shoes?
And then she said: “One thing I must tell you. I have found true angels along the way - sometimes in the most unexpected places. And God has been with me all along. I know that He will be with you too.”

2006-06-26T15:19:00.000+02:00

I think he needs a nappy change...
Help. He's not tired yet!

Sumi was a cross-Birman dynamo. He came to us as a kitten and has never left us again - in a way. We lived in an old house on a very busy road. The cats had to be held captive inside the house as we had already lost two cats through being run over.

The cats hated the captivity. Sumi handled this by bullying the two female cats mercilessly. He had such a lot of energy that he literally bounced off walls. One Saturday, I let them go outside thinking that I’d supervise. I went into the house for a few minutes. And then I heard the thud and the brakes and saw a woman with tears in her eyes cradling a bundle of soft fur….

We were heartbroken. We moved into a house in a quiet cul-de-sac. When we finally felt ready, we adopted Lisa – another Birman. She is as gentle as Sumi was a fighter.

Our pets were our only children for a long time. When M was born, Lisa adopted him immediately. She cuddled with him when he was small and when he became mobile, she started playing hide-and-seek and chasing games that made him shriek with laughter.

I hope you don’t have cats! a nurse said when L could come home out of the NICU.
We have three, I answered.
She lifted her eyebrows.

But initially the cats ignored L, even Lisa.
Gradually they started showing an interest. I’d come into the room to find one of them sniffing him. And then, one day, I heard a funny noise on the baby monitor. I rushed into the room and there Lisa was. Cuddled up against L’s back and blinking her eyes very slowly. As if to say: Don’t worry. I’m here now…

2006-06-23T14:19:00.000+02:00

It rains down in Africa

The idea of having children was, for such a long time, totally surreal. While I was infertile, I sneaked looks at moms with babies or pregnant women and would immediately look away – as if somebody caught me doing something perverted. Even after M was born this sense of alienation continued. It felt as if he would be taken from me and the pregnancy, the birth, the breastfeeding, the beautiful little boy would just be a dream.

Yesterday I stopped at the supermarket to get some groceries on my way home. And there they were: A mom and dad and two little boys. The older one was pushing the trolley, his thin arms almost not reaching the handle. The petite mother was carrying the little boy of eight months or so in her arms. He was big and strong – his round head solid, his eyes steady, his neck stable, his body firm. Everything L isn’t.

I looked at them, found myself staring and guiltily looked away. I wondered about them. How did the older brother react to the baby? What was the baby eating? What does he look like when he smiles. My uppermost feeling was pure, undiluted envy. I compared…. and when I finally reached my car, I collapsed on the steering wheel in a sobbing mess.

The mother of a seven year old boy with special needs warned me about this once. She said: I don’t even go there. I tell myself: Stop it! the moment I see a little boy of similar age to my son.

So, I picked myself up from the steering wheel, I dried my tears, I asked for strength and I turned my favourite song on the radio as loud as I could tolerate. I drove home. The moment he heard my voice, my little one turned his head and tried to locate my face, his weak eye muscles almost co-operating. I took him from the nanny and felt how big he was getting, I saw him opening and closing his hands and I brushed my lips against his silky hair. He is so soft and warm, I thought. And look how blue his eyes are….

2006-06-23T10:39:00.000+02:00

Labels

It has only been a while since I have started reading the blogs of other mothers with special needs kids. At least once a month, maybe even once a week, I encounter a post dealing with the labels and the tests. We all get angry at people for generalizing. We even sometimes get annoyed at ourselves for staring ourselves blind against the label. I know I do…

We know our kids cannot be compared to kids without problems. Why do we insist on comparing them, then?

The answer would probably be to satisfy ourselves that we are not missing something important that could help our children. And sometimes, yes sometimes we do it just to satisfy the powers-that-be.

In a number of countries (notably the States and Canada) there seem to be an early intervention program in place. Please correct me if I’m wrong. I am not sure about the financial implications of this, but I assume that it is government funded. To make sure that it isn’t abused you have to submit to tests and procedures and red tape - like with anything funded by any government.

[I had to laugh at an e-mail from a friend currently living and working in the UK who innocently stated that one isn’t considered pregnant in the UK before a doctor confirms the pregnancy. I’m sorry, but the idea of a highly pregnant woman staggering around with her hand on her back and being told, “Sorry, you cannot be pregnant. The doctor didn’t say so...” is highly ludicrous.]

In our country, any special intervention or program is the responsibility (financial and otherwise) of the parent. We are lucky that we have medical insurance. Even so, we had to upgrade to the top – and most expensive – scheme.

The paediatrician who attended to L after he was born, was very pro-therapy. But even if he wasn’t, I still would have explored any avenue that could help my son. Even if I had to get a second job, or incur debt. It was our responsibility to research the options open to us and we did.

Currently we are using the services of an Occupational Therapist only. She is neuro- developmentally trained and she has experience in sensory integration. She is a good therapist and I listen carefully to her opinions. She has taught me things about handling L that are beneficial. However, the moment he experiences pain or discomfort none of her measures help in controlling his spasms, for example. She sees my son once a week for an hour. She is therefore, in my opinion, less able to judge what my son is capable of than I am. I listen to her, but I weigh what she says against my experience as his mother. And if I don’t agree, I say so.

We are still doing ABR and I can see that most of the improvements we have experienced during the past few weeks, can be attributed more to ABR than OT. There are physical changes that we just have not dealt with during OT sessions. So, I take the OT sessions with a pinch of salt hoping that they will start showing dividends in a year or two.

We had to get a referral from the surgeon placing L’s PEG (feeding tube) earlier this year to the surgeon doing his Nissen fundoplication. The diagnosis in the letter said CP with mental retardation.. My child was four weeks old at the time. How is a person doing a surgical procedure capable of judging a four-week-old’s intellectual ability? Not that it is any of his business in the first place. He blithely came to this staggering conclusion after seeing the baby in question for about ten minutes pre-operatively and an hour while he was anesthetized… I exploded then and I’m still angry thinking about it. How dare he label my son when he is not equipped to do so.

[For the record. I don’t know what my son’s intellectual ability is. I know that he responds to his name, he knows our voices, he looks for the dogs or cats or his brother when I ask him where they are and he is clearly curious about what we are doing and things happening around him - which leads me to believe that he has plenty of intellectual capacity. But even if he had not done any of the above, I’d be careful to label him as anything before a significantly higher age. Or ever, come to think of it.]

Even the paediatrician seeing him twice a day after his birth would miss significant things about him. Once, after a consultation, he gushed about the improvement in his movements and alertness and I was, like: He’s been doing that for weeks! Blank stare from the doc.

This paediatrican stopped practicing in March. The person taking over his practice had to give us a referral to the Red Cross Children’s Hospital in Cape Town for a milk scan that we wanted to get done. She cancelled the appointment we had with her at the last moment and proceeded to give us a letter full of protestations of how she did not know our son and how he is “Cerebral Palcyd” (sic). I am sure nobody can blame me for never going back to her… Then the hunt started for a replacement paed. Let me just say that we interviewed two (coming with glowing references and practicing in our neighbouring city) and I got so annoyed with both of them, that I paid their exorbitant accounts and never went back to either. One of them wouldn’t touch my son. He was scared that L’s drool would end up on his examination table. The next guy spent an hour with us. At the end of the hour he shrugged his elegant shoulders, greeted us sweetly, never phoned us back with a promised telephone contact number and … you can guess… sent us a bill for double the amount an average paed charges. Both of them immediately wanted to know if we would want active resuscitation for our son – should he end up having to go back on a ventilator. I got the impression this was far more important to them than our immediate needs.

My point is this: Our kids are labeled because we allow them to be labeled. And the people we allow to do the labeling are not necessarily the people who know our children best. The label does not define the child. It is a handy explanation, but if we as mothers see our kids as CP, ADD, autistic or whatever, we invite other people to see them the same way. And maybe we even mold the way they think about themselves.

I don’t have the answers for dealing with the problem without going through the motions.
But we all want the best for our kids and if we feel in our gut that something we are doing is against what we consider necessary and may even be harmful – even if it is just to our psyche - why submit to it?

2006-06-20T15:08:00.000+02:00

Get to know me. How about you?

I LIKE powertools and make-up. I believe that both can change your life if you use them correctly. I don’t.
I HATE the presumption of mainstream medicine that it can improve on nature in all respects. And that ordinary people believe this.
I AM stubborn.
I SING nothing, nothing nothing. Not allowed to. Only Papa may sing.
I READ Terry Pratchett.
I COOK dishes that only use one pot. Like pasta or stew or quiche.
I ADORE planning my garden. I don’t get to the actual gardening. Ever.
I WATCH Barney, Make way for Noddy. Have no idea what’s on TV at the moment. Movies? Even less.
I CELEBRATE beauty.
I HOPE for healing.
I TRUST in God.
I WEAR whatever is clean and ironed and comfy and warm. Because I inherit a lot of my clothes from my mother and sister the clothes in question are normally reasonably pretty/smart/classic. The last time I bought something for myself was… let’s see…June last year.
I ENJOY chatting to friends in a coffee shop. Playing outside with my sons. Being loved by my cats.
I DREAM of wholeness.
I APPRECIATE my family, my house, the food I eat.
I THINK I can do it all. I am mistaken, of course.
I CRY when I feel helpless.
I SLEEP too little.
I SMELL of Chanel no 5.
I EAT chocolate, bread and cheese and fruit.
I DON’T EAT tomato, olives and lettuce. If I can help it.
I AM GOOD AT sensing the emotional atmosphere around the person I am speaking to.
I ADMIRE single parents.
I GET ANGRY AT injustice, child abuse, cruelty to animals.
I PLAY the piano. Badly.
I DRINK red wine or sparkling apple juice.
I PRETEND not to be scared.
I LAUGH at myself. Mostly. Oh, and foot-in-mouth disease. Because I suffer from it too.
I LISTEN attentively.
I DISLIKE phone conversations.

2006-06-20T11:24:00.001+02:00

Happy birthday to me

Today is my 36th birthday. 10 Years ago, I had just met my future husband. He bought me a bunch of yellow flowers and left them in a glass vase in a prominent place in his house. I walked in – tired from work – and saw the flowers. Oh, they’re pretty, I thought, not realizing that they were for me.

Last year I had foolishly invited friends for dinner on my birthday. I had underestimated how tired I would feel at 20 weeks pregnant and with a toddler that wasn't quite walking yet. So, I defrosted soup as a starter, cooked whole chicken, vegetables and fresh pasta with a sauce out of a bottle and served chocolate muffins with a mulberry sauce for dessert. I remember very little about the evening except how I fretted over stupid details and wished that my guests would go home!

I don’t feel all that different from 10 years ago (OK maybe less naïve), but I am somehow immeasurably older than a year ago. I’ve been trying to pinpoint the feeling all morning and the best way to describe it would be to say that a year ago I thought that I was untouchable. That nothing could go wrong. I mean, I knew the possibility existed, but it was not real. Today I understand with absolute clarity that I can lose everything I have and everything I am in the blink of an eye.

So many things have gone wrong in the past eight months, that I have decided to pull up my anchor and drift. Because every time I think that I am going one way, the storm pulls me away and bashes me around for a bit. It is disconcerting to everybody I love to see me like this, but I am just tired of fighting the current. I pray that soon I’ll see a new direction emerging. That God will make the storm stop and that I will regain a measure of my former self-composure. May this be a better year…

2006-06-19T14:08:00.000+02:00

Goodbye, Frans

I met Frans and Sylvia through an evangelism project at my church back when I was single and carefree. They took me under their wings and introduced me to my husband-to-be.

D worked with Frans. Every year, D and Frans would have to attend meetings in Cape Town. Airfare and hotel accommodation were included for the wives. Sylvia and I enjoyed each other’s company, despite the big difference in ages. We were not in the same financial league as the other wives and we had a few quiet laughs at how serious they took themselves. Soon we decided to do our own thing. We went shopping, sightseeing and spent hours getting spectacularly lost in a city that was strange to both of us. This past April, I knew that it would be the last time. Frans was about to retire at the beginning of next year. They had already scaled down and would eventually be moving to a different city to be closer to their only daughter and her family.

Frans had a back operation last Friday, but he was recovering well. So, when the call came on Saturday morning, I was ill prepared for it. It was very early and Sylvia’s voice was shaking, so I knew it must be bad news: Frans had died of a massive heart attack early Saturday morning. I drove to the hospital and sat with her and two of her friends until all papers were signed and she could take his few belongings with her.

Walking out of the hospital with her hand in mine, leaving him there, was hard for me. What it must have felt like for her, I don’t want to imagine.

2006-06-15T10:05:00.000+02:00

Closer to the finish line

Tomorrow is a Youth Day here in South Africa. It is a public holiday and it is also the day that the Comrades Marathon is run between the cities of Durban and Pietermaritzburg. The Comrades consists of 90km of grueling hills and allows athletes only 11 hours to finish. It is usually broadcasted on TV. But helping out at one of the water tables or standing close to the finish is really an experience. This is where total strangers sometimes pick up a fellow athlete who has collapsed and carry him/her to the end. Jeopardizing their own chance of finishing to help another. It never fails to bring tears to my eyes.

I wish I were a better writer. So many thoughts are going through my mind right now.

14 June is a date that will always stand out in my mind. Three years ago on this date, I found out that I was pregnant with M. I had been battling to fall pregnant for four years and had finally decided that if I wasn’t pregnant by 20 June 2003 (my birthday) I would stop trying to have children. It may sound strange, but I needed a rest (maybe forever) from the constant hope – tension – failure - mourning cycles my life had become. So, when I took that pregnancy test it felt like the whole world stopped for a moment. And when I saw the second pink line, I just collapsed: “God! Thank you, God!” It felt as if I had been snatched from the fire.

While L was in NICU and we spent our days traveling between home and hospital, we often encountered one of our young neighbours – busy mowing his lawn as we were driving up our street on our way to hospital. He would wave as we passed him and when I looked back his hand would stay raised in a gesture of blessing. To me it felt as if someone had picked me up and carried me closer to the finish line in that instant.

L was totally distressed yesterday. Not sleeping, going into one spasm after another and acting as if his tummy was aching. Last night he slept until 23:00 and then would not go back to sleep until 3:00. Not that I would know. My poor mother took this shift. I feel remarkably well-rested… and very guilty. But she assures me that she will take naps throughout the day.

When I listened to his lungs this morning they sounded lovely and clear except for one little spot at the back of his left lung. We seem to have turned a corner.

Logging in this morning and finding messages from mothers who have been there, was also very special to me.

Once again I have been picked up and carried.

2006-06-14T13:50:00.000+02:00

Terror

I really hope that it is possible to shake off the terror of seeing your child connected to wires and beeping machines. To the mothers who deal with this on a daily basis or more often that I have had to: Oh. What can I say? Nothing that’s not going to sound completely stupid and inadequate. If I could hug you close to me, I would.

There are so many aspects of my son’s stay in NICU that I will have to come to terms with – eventually. Now it is still too fresh and real. Like the one nurse who kept on calling him “it”. As if he had no right to be acknowledged as a human being. Later on I understood that she was trying not to bond with him. She thought he was going to die.

But even though I can remind myself of the long way we have come, I still cringe when any of my boys, but especially L, gets sick. You see, I know that his chest is compromised due to not being able to swallow. I knew all along that seeing him through this winter was going to be hard. Yet, now that we are battling the second infection – the worst so far – I feel that familiar sense of helplessness that I have to fight at all costs. I have to tell myself NOT to panic. I try to be logical: He has no fever i.e. no infection. He has gone through a set of antibiotics. One more is probably not going to help. Lots of chest physio, nebulising him and positioning him in such a way that the gunk runs OUT, is likely going to make all the difference in the world. But I still feel a bit short of breath. Cannot get that nasty picture out of my mind.

2006-06-14T08:36:00.000+02:00

Hepatitis A

All of us have been sick. The two kids and I had flu. (Please, God, let it just be flu….) But my husband was diagnosed with Hepatitis A. No less. After a week of vomiting we realized something more was wrong and he was hospitalized for three days and put on a drip to rehydrate him. He is back home, but was booked off work for a month.

The two kids, the nanny and househelp and I had to get IG injections against Hepatitis A. But I guess it will still be a week or two before we know if we had contracted it or not.

In the meantime we have enough on our hands with battling the flu. L is so congested, that his spasticity is back in full force. I was about to brag about how much he has improved. That will teach me! The doctor wanted to hospitalize him as well, but I resisted. Really, I just know from bitter experience that it is actually safer for him with us. So far every time he was hospitalized for something we have had a bad experience. On two occasions I have walked into hospital to find him blue. It is usually the hospital staff who act with the best of intentions and end up almost killing him.

We have had a few really bad nights. The two boys woke up one night at 9:00 and one way or another just never went back to sleep properly. They would just keep on setting each other off and because I was alone in the house, there wasn’t much I could do – except cry with them, of course.. At one point I was sitting with L on my lap, suctioning him every minute or two and M standing next to me – almost falling asleep against my knee and refusing to go back to bed by himself.

“Put him down!” he wailed.
“I can’t, sweetie. He is battling to breathe.”
“Whaaaaaaa!”

Fortunately my wonderful mother arrived yesterday.

2006-05-31T14:52:00.000+02:00

Just sayin' II

I wrote a long post about a fight, heartache, plotting revenge and lots and lots of tears. Besides airing my feelings (which I got from writing the post in the first place), it would have served no purpose. But then I saw yesterday’s post and I deleted it….This is the way God works.

2006-05-30T15:03:00.000+02:00

Just sayin'

I try to be critical about what I post here. My blog is a reflection of what I believe and experience. I don't want to be untrue to what is happening in our lives and how I feel about it, but I have an idea that words are for keeps - especially writing them down. And what I DO NOT want to reflect at this stage, is helplessnes, the attitude of being a victim and feeling sorry for myself and my children. Because that is not how I see us and how I feel. Mostly anyway...

2006-05-30T12:05:00.000+02:00

The trip in search of breath.

I was six years old when my little sister was born. And I can clearly remember the heartache of sharing my mother with this helpless, colicky and (in my six-year-old mind) useless creature. Becoming a big brother or sister is hard.

I knew that having two children less than two years apart would be difficult, but I had somehow hoped that the adjustment would be less stressful for a younger child. What I hadn’t bargained on was that my second child would have special needs. At an age where most babies become a little bit more independent – sitting up, sharing mealtimes – our second son is still very much like a newborn. And our older son is running out of patience. I have found a very thought-provoking post on the site Special Child dealing with siblings of special needs kids. For those of you in the same situation read the article under Editor's Note

After L was born and when I was still on maternity leave, I took M out at least once a week. A favourite activity was visiting a nursery just outside the city, drinking milkshakes and watching the chickens (pretty reddish jobs) and birds. Sadly, after going back to work our M and mommy times have decreased. The other day M asked pitifully to go “see the chickens” and I realized with a shock that we hadn’t been out for a while.

On Saturday, my husband had to work and, since it promised to be a lovely day, I decided to take the two kids out to the nursery. While M had to still share his time, I hoped that getting out may be a treat in itself. I phoned up the only friend with enough nerve and asked if she wanted to go along, but she had something else on. Well, I thought, at some stage or another I have to learn how to handle both in public…

I planned our trip for the time between L’s feeding and M’s nap. Getting everything in the car proved more difficult than I thought (rather like the classic puzzle of how to get lettuce, a goat and a lion across a flooded river in a boat), but by 9:30 the three of us sat in the car, ready to go. M was in his car seat at the back and L was in front with me, strapped into his seat with his suctioning equipment on the floor next to me. And this is where I ran into the snag that I knew I would. L hates being in his car seat. I am ashamed to admit it, but when we travel by car, I usually sit at the back with L on my lap… I know. Generally, I would frown on having an unrestrained child in a car too. But please hear me out first.

L doesn’t just cry when he is in his carseat. He turns completely sideways, throws his head back and goes into spasm. If he turns to his left side, he is totally unable to breathe and goes blue. And of course this is exactly what happened on Saturday morning even before we set off. I turned L back to the front, suctioned him and sneaked a look at M in the back. He was sitting quietly, staring out of the window, already resigning himself to the trip taking longer than anticipated. The cheerful music that I had chosen with so much care, spilled out from the car speakers and somehow mocked me.

I gritted my teeth. We. Will. Have. A. Good. Time. We started the drive. I lost count of how many times I had to stop and get L suctioned and breathing again. M’s only comment was the odd: “Mommy, L is battling.” Understatement of the year. In the next little village, I had to pull the car into a bus stop, calm L on my lap and change his wet clothes. A kindly-looking cyclist stared at us curiously and for one wild moment I was tempted to offer him a lift in exchange for his lap. But he was going the other direction. Pity.

When we arrived at our destination, M brightened considerably and L calmed down the minute I took him from the car seat. We loaded the pram with L’s equipment, and off we went. The milkshakes were lovely, L dozed off in my arms and M ran around excitedly, looking for the chickens. We never found them, come to think of it.. Maybe feral cats got them, maybe they have just learnt some very cool nest-hiding techniques. The only other customers were a couple of elderly ladies. By the time they realized that one of the two little red-haired boys has a problem, M sensed my antagonism and yelled: “GO AWAY”. And they retreated, unasked questions boiling in their throats. Which suited me fine. Sometimes I just don’t want to explain.

The trip back was considerably less traumatic. L turned sideways once again, but to the side that doesn’t block his airway and promptly fell asleep. M also napped in the back seat and for about half an hour peace reigned.

Was the outing worth the effort and stress on poor L? I don’t know. I just know that we have to stretch ourselves slightly, while we still can. I don’t know what the future holds, but I want us to be as normal as we can be. I just wish I knew why this has to be so hard…

2006-05-26T14:06:00.000+02:00

His pretty nose....

2006-05-26T11:25:00.000+02:00

So much more than a watchdog...

Scene: Bedroom early this morning. Sound of something falling in the kitchen.
Me: Uh-oh! What was that?
D (Shrugs)
Sound of tiny feet. M appears in the doorway.
M: Heeelp!
Me: What's wrong?
M: Messed.
Me: Messed what?
M: Milk
D: Let me go and see.
D: Oh, no! How are we going to clear this mess?
(The entire contents of a litre sachet of milk that I had just opened is on the kitchen floor)
M: Call Sam. (Our Labrador)
D: (after a momentary pause) Sam! Sam!

For the record: The kitchen floor was washed a short while afterwards. But Sam did a really good job of getting rid of most of the milk. It really beats trying to soak everything up with rags...

2006-05-25T09:48:00.000+02:00

The world. According to M

While taking the mail out of the box outside our gate, D and M bumps into our neighbour across the road. (Doug P, a dignified 80 year old) They chat and, as he is leaving, D says to M: “You remember Uncle Doug ?”
M (huge puzzled frown): "Donald Duck?"

2006-05-24T10:57:00.000+02:00

No, he’s just pretending to sleep (and other useful answers)

The other day I had to bring the two kids to work with me. Upon leaving (all our medical equipment, nappy bags and toys in tow), I bumped into a co-worker.
“Is this the baby?” she asked.
“Yes” I answered. And then I made the mistake, “Come see!”
I’m not sure what I had hoped her response would be. Maybe a comment on his lovely red hair. Maybe questions about his health…

“Are his eyes always open like this?” she asked. I felt as if she had slapped me.
“Yes, he does not close his eyes completely when he is asleep.” I answered, marvelling at how calm I sounded.
What I wanted to do was to grab him out of the pram he was sleeping in and hold him against me, shielding him from her penetrating gaze. I wanted to snap something hurtful or sarcastic. She wanted to hang around, ask more questions. I turned my back on her, said bye in a firm voice and started loading the children and all our things in the car.

A few days ago I bumped into her and a colleague of hers again.
“How is the baby?” she asked, lifting her eyebrows meaningfully.
‘Fine,” I answered cheerfully and maybe a little bit untruthfully. “He is really getting cute.”
“Oh,” the colleague responded. “You are lucky. Our kids are at the stage where they get naughty instead of cute.”
“Oh dear! So, you’re saying I must enjoy the cute stage while it lasts?” I responded with a hearty laugh.

Clearly this encounter is no big deal. I have had worse thrown at me. Doctors who don’t want to even examine my son, immediately attributing his colic-like symptoms to “his condition” and denying that he feels pain, “tactfully” asking about active rescussitation or not. * In-laws that want me to institutionalize him.** But…. her question still hurt and I resented it. I don’t want my older son to think that his brother is worth any less because of his disability. And I know that I would never ask another mother a question like that.

It made me think about how people’s perceptions are formed. How can I change them? Can I change them? And how do I protect my vulnerable children, my husband and myself in the process?

* My initial responses to this were what I thought they wanted me to say: That I would not want him to suffer. Whatever the heck that may mean. The next unlucky sod asking me this question will be sorry…
** As a virtually newborn baby. Because he takes up too much time. Yeah.

2006-05-23T13:29:00.000+02:00

Hope - again

I know they said not to expect too much too soon. I know they said give it 200-300 hours of ABR. But…. I am so sure that I am starting to see subtle changes in L.

His hands are so much looser and his fingers are actually moving independently. He has a greater range of movement in his arms. His jaw seems less slack and I’ve seen him close his mouth more. We haven’t had him arching his back and hyperextending his neck that much lately. ABR? Maybe.

2006-05-19T08:23:00.000+02:00

Ms Popularity

Back in high school, I definitely was one of the most unpopular girls around. I was geeky, pimply and shy. And I wore thick glasses. I used to think people hated me. In time, I realized they just never noticed me. This continued to my mid-twenties when I finally ditched the glasses in favour of contact lenses, got rid of the pimples and slimmed enough to make people realize I have a good figure. Throughout this, I was lucky enough to have and keep a circle of really close friends. So, my relative lack of popularity was always buffered by the knowledge that I had people who knew that I was smart, funny and lovable. (How’s that for a good self-image!)

As a more mature! (36) person, I still occasionally have flashbacks to my high school days. I hate large social gatherings. Walking into a group of laughing strangers having a good time, I feel a bit like the clumsy sixteen-year-old I once was. Nowadays, the need to fit in is less. And I have also realized that those people having a good time may feel much more alone inside than me.

I married a man who seems much more socially adept than I am. In reality, he is not. A strong personality fighting with a really big need for approval, makes him as high-maintenance as can be. On top of that he has, to put it bluntly, verbal diarrhea. As one acquaintance put it: “Within five minutes of meeting D, I knew far more about him than I really ever wanted to know…” Hey, I love the man. But I can be honest about him after knowing him for 10 years and being married to him for nine.

So, we have Ms Unpopular married to Mr High-maintenance. I really pity our children!

Our social life doesn’t amount to much, these days. We still have a circle of good friends and most of them go out of their way to keep in touch and initiate social contact. But it remains an effort on both sides. All people with children under die age of five know that going out to fancy restaurants with the kids in tow is pretty much asking for trouble. Going to see a movie? Attending a concert? Ditto. So, we are left with My house or yours? If we visit them we have to take along all L’s medical equipment. L refuses to sleep in his pram and I end up with him on my lap, trying to eat with one hand and running to suction him every few minutes. That is on bad days. On good days, I merely try and keep my toddler from destroying their belongings. If they come to our house, I have to cook. That pretty much sums it up.

Maybe there are advantages to not being popular?

2006-05-10T14:26:00.000+02:00

New nanny

We have had a pretty miserable few days around our house. The children are both sick now. M is still very active – he just gets a bit cranky at bedtime and when he gets up in the morning.

But poor L has been really battling. It is difficult enough for him to breathe with his weak chest muscles. Having a blocked nose and saliva he cannot swallow blocking his airway on top of that, must be hell on earth.

The new nanny was interviewed and made a good enough impression to get the job. She started on Monday under the wakeful eye of my mother. Initially L started crying whenever she picked him up and M was trying to hit her at every opportunity. I thought, oh swell…just…swell! But things are going slightly better now.

Last night my mother and I were bathing the two boys. My mother put M in the bath and I undressed and wrapped L in a towel. Carrying him, I thought: I smell poo. But I could not see anything. I unwrapped him in the bathroom and put him with his brother in the bath. Next minute I heard a squeal from my mother. There was poo all over the floor and she stepped in it with her bare foot. I don’t even want to think what it must have felt like!

Sadly, my parents had to leave today. I know they also have things to do at home, but still… After last night’s poo incident my mom at least have something to remember her youngest grandchild by!

2006-05-05T13:19:00.000+02:00

Loong weekend past

We came back from our trip to Johannesburg via the Drakensberg. We stayed over at a selfcatering cottage we shared with friends in the Drakensberg. Between our two-year old and their two little girls getting rid of excess energy, it felt at times as if the cottage walls were vibrating. L – our CP baby – was off-colour the whole weekend. We hardly slept. I never realized he was getting sick. Bummer. So were we, actually. By Saturday afternoon both D (my husband) and I had sore throats and throbbing ears. I am already on the mend, but D and L are still very sick. Our two-year old (M) seems to be germ-free for the moment and I am eternally grateful for this small mercy.

The ABR training was short and intensive. The technique is even weirder or, actually, less spectacular than I anticipated. But I was convinced that it works when I could feel the heartbeat of the person we were practicing on through a 30cm high wad of towels and padding. Now it is just a question of where to find time to put in the hours upon hours of therapy required.

The children’s nanny phoned us on Friday to notify us that she found another job and was starting after the long week-end. Our protestations that she owes us at least a week or two of notice, fell on deaf ears. I really don’t begrudge her a better-paying job. I am the first to acknowledge that looking after kids is probably much harder than most jobs – especially looking after L. All babies are a lot of work, but there is compensation when they start smiling and cooing and being cute. With L the rewards are few and the responsibilities are enormous. But the bottom line is that she left us without any care for our two kids with three days’ notice.

My parents agreed to come and help us out. They arrived on Monday evening. And I must say that, once again, things are working out for the better. I am not sure what I would have done the past two days with D sick in bed, L needing constant care, feeling sick on top of having no sleep and meeting the demands of M (however cute his demands may be) and work. My parents are incredible people. They have taken over cooking and keeping M entertained. My mum has allowed me some sleep last night by looking after L. And just having them around is a boost to my morale. We are seriously looking for another nanny, but finding somebody who will look after your kids like you would yourself, is probably an impossible task at the best of times. We are in a hurry to boot.

Tomorrow I have set up a meeting with a potential nanny. It looks like she’s been working as a part-time carer at a step-down facility so she has had some experience with tube-feeding and suctioning. She has children of her own and she sounds really nice over the phone. I hope she’s the one!

2006-04-26T10:51:00.000+02:00

ABR

We are off on a long weekend (courtesy of Freedom Day, tomorrow). We are D.V. traveling to Johannesburg to be taught the technique of Advanced Biomechanical Rehabilitation – a relatively new therapy that we are hoping will make a big difference to our son’s quality of life.

In a nutshell: The principle of ABR is that normal child development initially takes place by just breathing against gravity. CP kids do not breathe correctly, because their smooth muscles around the organs are too weak. They therefore do not develop normally and the lack of overall muscle strength cascade into structural deformities and spasticity.

ABR is reversing structural problems by targeting the smooth muscles. As they become stronger, normal development starts taking place slowly but surely. When structural and biomechanical function is restored, a correct electromechanical picture is sent to the brain. This leaves the brain free to find alternative pathways to restore function.

See the link: http://www.abrbelgium.com

Hope is such a strange and wonderful thing. Initially we tried finding hope in the eyes of doctors and nurses. And there was very little. Eventually hope started creeping up on us in the most unexpected places. I realized we had to culture it and nurture it. Because we need hope in order to survive every day.

I started “speaking life”. Meaning that I started saying positive things – even though I felt very negative. My picture of him will become my son’s reality. And who am I to deny him a reality of health and normality?

If I believe in an almighty God (and I do), I would be a fool not to see a picture of two normal little boys running outside and playing in the sunlight as our projected reality.

2006-04-25T14:29:00.000+02:00

All mothers know that having a baby changes your life. In Ruwandian culture, even your name changes when you have a baby. From then on you are referred to as: Mama ....(insert child's name -usually firstborn or daughter).

In my case, my life changed to become my biggest nightmare, all my fears rolled into one: My son is cerebral palsied and he is badly affected.

Life does goes on, though. Now, six months after he was born I can laugh at jokes, enjoy food, count my many blessings. Occasionally I allow myself to sink into misery, but I dare not do that for too long.

Hey, let's play a little game...It is called: Hope.