Rockabye baby

The other day I was talking to a new father. He was complaining that they don’t sleep. I nodded sympathetically while thinking: “Duh?”

Magnus goes to sleep at 18:30 or thereabouts. He is quite willing. In fact, he reminds me that he NEEDS to be in bed NOW by crying and rubbing his eyes if it seems to him that I value my reheated dinner-on-a-tray more than his bed time.

This leaves us with plenty of time to play with Marco, feed him, bath him and put him in bed. With any luck, we are two free adults by the time 20:00 rocks around. Except that there’s no rocking left. We’re as flat as two overworked torch batteries.

We go to sleep in front of the television on our respective couches. There we sleep – fitfully, because the lights are on and the television’s blaring and we worry that we won’t hear Magnus cry even though the baby monitor is whooshing in the background – until Magnus wakes up and demands to be fed. Usually any time after 21:30.

I get up and stumble to the bedroom to go and feed him and then promptly fall asleep next to him. Dirk stays on the couch until either of us wakes up some time after midnight and realize that the lights are still on and the television is now blaring something that will give the devil himself nightmares. Besides, the dogs want to go out and the key is in the lock where anyone can just smash a glass door and let himself in.

Often Dirk comes into the bedroom at some godforsaken hour and grumble that I’ve left him to die of cold and neglect. But if I do go and wake him up and strongly advise him to get himself off to bed, he turns around, curls into fetal position and mumbles: “Just five more minutes, please.”

At least he’s not as bad as an acquaintance’s husband who invariably falls asleep in the bath. Until the night his wife decided to leave him and he woke up in a bath full of ice-cold water in Bloemfontein in the middle of the winter… (Bloemfontein is renowned for its winter chill.)

Of course Magnus, having slept for a good ten or eleven hours, is quite rested by the time it gets light. And South African summer mornings on the East Coast start notoriously early. It can be light anything from 4:00 onward. I’m not even mentioning that he wakes up at least two or three times after the initial waking up at 21:30, because I’ve accepted that. He drinks and goes off to sleep again. So, I’m not overly unhappy about that.

Clearly Magnus has inherited his dad’s ability to be alert from the moment he opens his eyes instead of my painful and slow awakening. So, there I am trying to ignore the fact that he’s as wriggly as a worm and cheerful and smiling to boot, by drawing the covers over my face. And he’s like:

HELLOOO! ANYBODY THERE?
And I’m like, “Please just go to sleep for a few more minutes!”

Which is, of course, fruitless.
Then Marco wakes up and the cats and the dogs and then we truly have no choice but to start the day. And guess what? I’m still late for work…

But I’m not complaining. I’ve known far far worse!

One, two, three…

Their names were Masisi and Sibongile. They were little girls and the smallest members of a family of girls living on our farm with their grandmother, Christina, in a group of mud huts. They had cattle and planted corn and vegetables.

Why the kids lived with Christina, I never questioned and we’ll never know for sure, but it was likely that their parents worked elsewhere – where the kids could not stay with them – and that they sent money home so that the grandmother could buy food and other necessities. This was and unfortunately still is reality in many South African homes. Families are torn apart and the whole structure of society is disintegrating. No wonder that crime soars. Parents are not married to each other, because lobola costs money and most people are dirt poor. And so women and children have no protection. (Last week the unemployment rate in our city was quoted to be at 60%)

Christina worked in our house as a char and the girls also came to our house after school. Sometimes they swept leaves in the garden. But mostly they came to play – as little girls do. My sister was their age and together they played with dolls, they skipped rope, played school and taught one another songs and rhymes. My sister spoke Zulu, but the lingua franca was a mixture between Zulu, Afrikaans and English. They were clever at school and when it was their turn to be the teacher, they were very strict. Afternoons were filled with the sound of children’s laughter. My mom saw to it that the children got at least one square meal a day from us and I suspect that it was for this as much as for the company that they came to play every afternoon.

One of the farmworkers wanted to borrow money from my dad. He seemed very agitated and when my dad casually enquired why, he said that he was afraid that Christina would put a spell on him as he owed her money. By this time, my dad was worried and further prodding produced the whole horrible story. The children were being used as prostitutes by their grandmother.

I wish I could say that my dad had the children removed from their grandmother’s care. I wish I could say that the children got a fair chance in life eventually. I wish I could say that the men partaking in this were punished. I wish I could say that the community was eventually helped to improve their standard of living. Although thinking about the possibilities makes me realize that there was no clear-cut solution to the problem with the way things things were. But I don’t even know what happened to them. They disappeared. I know that my dad was extremely angry and I guess that instead of facing that, old Christina simply took the girls and left.

I heard the name Masisi today and I was transported to warm afternoons and children’s voices chanting a counting rhyme:

munye,mbili,mtathu (one two three)
inja bhamba iswenza (dog caught a flea)
iswenza yifile (flea died)
inja khalile ( dog cried)
munye, mbili, mtathu (one two three)

Old house

I’m walking through the empty house, my footsteps sounding loud on the hardwoord floors. I’m thinking practicalities: Brown paint on the skirtings, neutral shades on the walls, white woodwork. Spruce if up, make it look presentable. Of course picking out the picture rail in white will look nicer, but there is no time for that. This is business. We want tenants again from January. We have a month for undoing the damage of six years.

Other images keep overriding my thoughts. Images of before: Rooms painted in bright splashes of colour, a fire in the fireplace, the taste of red wine, digging in the garden, sun gleaming on the floors and the old house basking in the glow of our love for it. A life before Marco, Loren and Magnus.

We left the old house six years ago and a number of tenants have lived here since. It has the scars to show for it. The house stares at me reproachfully.

Shut up old house, you never sheltered me. There was too much noise. The busy road was too close for comfort. I never felt safe here.

Maybe not, agrees the house. Maybe not. But if it was my fault that you weren’t happy, your new house must have made you feel safe. Did your new house manage to shelter you?

Against pain, no….

Our child lived and died there. We will never be able to leave it without leaving part of our hearts behind. I did not know when we moved in just how many tears I would shed there.

But pain and joy are not mutually exclusive. Joy comes in remembering red curls and bright eyes, belly laughs and baby smells. Joy plays peekaboo around doorframes while tears stream down your cheeks.

Sorry old house. We had happy times, but we never really lived here.

Update

I’m still busy looking at various options for starting my own business and spending more time with the children. And Dirk, bless his soul, is helping and brainstorming with me.

Magnus is teething and seems to have a cold on top of that. He is understandably irritable and does not sleep well. Poor baby!

We were beside ourselves with worry over Marco for a couple of weeks. He was completely impossible. Crying about the slightest thing, finding fault with everything, waking up screaming at night, clinging to me and crying when I leave for work and doing everything we tell him not to. Which is normal toddler behaviour taken a fraction too far! We thought the altered behaviour was due to an number of factors, namely feeling sick, me going back to work, Anna being too boisterous and playing on his insecurities and missing Loren. Since this weekend he has been his old self. Collective sigh of relief.

A friend has decided to dedicate her doctoral thesis to Loren. We are touched beyond words.

Eek

I have changed my blogroll (not finished – I want to add a lot that aren’t currently on my blogroll) to include categories because I thought that people looking for information might find it helpful to find blogs according to condition.

But it didn’t take me long to realize that some people’s blogs would fit into more than one category for example. And that is only the tip of the iceberg.

Please check if yours was put into the correct category and if I used the right terms. E.g. the Epilepsy category is misleading because it deals with various kinds of conditions.

Upcoming

I want to write a post about early childhood development, particularly the acquisition of language. I realize that I’m not a therapist or specialist in the field, but I’ve made a few interesting observations and I’d like to find out if other people had the same experiences.

I’ll tell you my theories in short so that you can give it some thought and if you have any observations to make, please do.

1) Children speak far earlier than we think they do. We just don’t think it is speech.
2.) Similarly, receptive language skills (i.e. understanding of language) develop earlier than we think.
3.) The ability to speak is influenced more by skeletal alignment and muscles than the language centers in the brain.
4.) The ability to speak or communicate is often rated higher in importance by kids with CP or other disabilities influencing speech than the ability to walk. (Obviously if the child has difficulty with speech or is non-verbal.)

Hooting?

Parenting consists of a million choices a day and we fool ourselves into believing that our kid will turn out well only if we get each of these “right”. The truth is that our kid might be a reasonably well and happy human being despite our choices. We’re going to get some right (by our own standards) and many others not. And you can bet all your money on it that you’re going to get things wrong according to other parents most of the time.

If parenting consists of a million choices, the factors influencing our choices are even more complex. Most people might be able to understand our reasoning if we could explain the reason for our choices logically, but a) We cannot always explain why we are doing things the way we do and b) Chances are that most other parents would not make the same choices even if they understand why. So, isn’t it sad that the one thing we are all looking for – affirmation that we’re doing okay by our kids – is the one thing we are bound not to get?

Parenting a special needs kid compared to parenting a neurotypical kid may not be necessarily harder. I’m not even going to stick my neck out on this one. It depends on the child, the stage of his/her life, the support system and the attitude of the parent. But when the typical is thrown out the door, choices become more of an issue. Choices may impact on making it beyond the child’s first few days or on his or her ability to function in society later. But it also influences degrees of quality of life and comfort. There is just no predicting how it will go.

There are plenty of people out there who think they can advise you. But as you are the parent of a human being with his/her own unique make-up, there is no way anybody can tell you anything with certainty. No professional and no other parent – not even the parent of another child with the same special needs – can tell you how YOUR situation is going to pan out. And nobody has the right to judge your choices.

***

One day a motorist was waiting patiently at a green light for an old lady to cross the road in front of his car. One of the other motorists behind him was hooting angrily. So, the first guy got out of his car, ambled up to the window of the guy hooting and calmly said:

“I’ll get in your car and hoot. You go get in mine and run her over. I don’t have the stomach for it today.”

Let sleeping fish lie?

We went to an exhibition called the World of Cats and Dogs this weekend.

Being animal lovers, we always enjoy looking at the various breeds of dogs and cats on display. I love Abyssinian cats and have promised myself that I would like to be owned by one before I die. But as we already have three cats, who don’t get along in the least, it’s probably not a good idea to add an Abby (known to be a rather hyperactive breed) to the volatile mix.

Marco enjoyed the dog show jumping and obstacle course enormously. And Magnus adored the tank fish. Loren always used to love the fish too, so maybe it is a baby thing. Marco was also keen for us to buy a tank there and then and if it wasn’t for the fact that we already have pond fish, two dogs and three cats, we might have relented.

I shared a house with another girl while attending university and she had tropical fish. One night, not being familiar with them, I innocently asked:
“Louise, do fish sleep?”
Louise was busy with something else and answered rather irritated that she was sure they do.
“On their sides?” I asked, peering into the tank.

Panic station. It turned out that the thermostat of the tank had malfunctioned and that the fish were busy dying. So, whenever I think of tank fish, I’m reminded of that and then I’m not so sure that I want any any more…

Mama’s boy.

Happy Magnus.

Magnus and Lisa, the Birman, interacting. The pacifier is there just to play with. Pacifiers can be a lifesaver and we really tried, but Master Magnus spits out anything remotely looking like a pacifier. I’m his pacifier. LOL

So like his brothers. Just with rounder cheeks!

Nameless fears

I thought I was cool with sick children. Loren was sick so often (seldom seriously, but with him something innocent could get serious very quickly) that we got used to the perpetual tension of having a sick child in the house.

But Marco’s simple sinus infection had Dirk and me scurrying to the doctor. And I realized that nameless fears lurk just under my skull.

Some degrees of Cerebral Palsy and especially the inability to swallow predispose children to serious illness of the respiratory system and often early death. Of course this depends on many other factors such as mobility. So when Loren died, nobody asked any questions. The official cause of death was heart arrhythmia usually linked to SIDS. There was no autopsy done and for that I’m grateful. No parent would like to even have to contemplate that. But it means that we’ll never know what happened for sure.

I often replay the events of that evening in my head. Going to the room where he was sleeping all evening and where we had gone in and out of while packing the kids’ clothes. I wanted to help Anna wrap him warmly so that I could carry him to the car for our trip. I took him from Anna and immediately realized that something was very wrong. There was the strange leaden weight, unusual stiffness and cool skin. But more than that: The sense that his spirit was gone. In shock I looked hard and saw no breathing, pale skin and half-closed eyes. Lifeless eyes.

It was the last thing I expected. I screamed:
“But Anna, he’s dead!”
And Anna laughed soothingly.
“No Nelba!”
She took him from me and started shaking him gently.
”Loren! Lorentjie! Wake up! LOREN WAKE UP!”

Dirk came running and wanted to know what was wrong.
“Loren is dead.” I sobbed.
Dirk started crying. “Is he really? Really? What must we do?”

I put him down on the bed and was kneeling over him. All I wanted was to pick him up and hold him. Make everything all right again. But logic took over. And a faint stupid flicker of hope.

“Phone the ambulance” I said and started CPR. Someone took me by the shoulders and gently pulled me away. So, I picked Loren up and rocked him against my shoulder.

I heard Dirk getting hold of the paramedics and dazedly saying, “We think our baby is dead. Could you please come.”

They were there quickly and I took Marco’s hand and left the room with him. Never in all those months did I ever leave Loren alone during all those crises. I refused to leave even if they chased me from the room. But this time I knew. I did not even need to hear the one paramedic saying to the other one: “There is no heartbeat.”

We waited in the TV room and after a short time the paramedics came back and said gently “We’re sorry but…” and I answered that we thought he was already dead, but that he taught us all about hope. I did not add that it is never easy to let go of hope once you get used to it. They filled out forms for us and left.

Dirk had phoned our closest friends and they started arriving. I felt torn between wanting to hold Loren for as long as possible and wanting to comfort Marco.

Our minister arrived. I remember crying,
“We fought so hard! And it was all for nothing!”
“I know.” he said.

The undertakers arrived. I dreaded it. (They got lost and drove into the old age home across the road’s premises. This made me laugh a bit. Imagine the poor people at number 18 peering out and seeing the undertakers arrive on their doorstep. And what was this, having to come and fetch a baby instead of someone who had lived for seventy years?)

Dirk prayed a short prayer while we held Loren’s little hands in ours. I could hear the woman from the undertakers starting to sob. They asked us for a blanket to wrap him in and I was indecisive – wanting one that was warm enough. I asked if I could walk with them. The woman got into the car next to the driver with Loren on her lap.
“I’ll hold him on my lap.” she said to me. Looking at me as one mother looks to another.
“Thank you. Thank you” I answered.

There was a full moon and we stood watching the van’s back lights disappear around the corner, taking our hearts with it.