There is a barren area on the eastern side of the property where it is at once too shady and too dry for anything to grow. Over the years the soil has been washed away by water from a downpipe running its course. And it’s been bothering me ever since we moved in. So, I reasoned, rather than fight the water, I’ll try and make it work by turning the area into a dry river bed. Plant drought tolerant plants on the outskirts and where the area turns into a marsh at the bottom during the rainy season, I’ll put some plants that like those type of conditions. For now, I’ll have to water the area like crazy and feed the soil to make it habitable. And so, yesterday, driven from the house by restlessness and anger and sadness, I started on this project.
No matter how much you intellectualize it, no matter what anybody says – this is what every parent fears most. Our hearts scream: O God, just not my child. I could bear anything, I’ll do anything – but don’t take my child.
We are burdened with the responsibility of their care. And it isn’t a light burden, though love makes it seem so. We feel that we’ve failed at the most basic of human tasks if they should be taken from us by sickness or accident. After all, parents should not survive their children. It messes up the order of the universe.
Magnus and I set out to gather rocks and stones and pebbles from elsewhere on the property. The house was built against a “koppie”, therefore finding those was easy. Getting them to their new location, was not so easy. We took a sturdy bag and set out. I couldn’t put Magnus down, because he’s only just mastered stairs and on all sides there are sheer stone walls that retain the soil. So, with his, not inconsiderable weight on my left hip and a sack full of stones in my right hand, I staggered down the stairs. We emptied the bag full of stones at the top of the steep incline where the water has carved a groove through the soil and saw with satisfaction how the stones and pebbles settled. As I set Magnus down, he crawled as fast as his little fat legs could carry him to a pebble on the ground, picked it up and held it aloft with a triumphant grin. He was so glad to be of help and he certainly “got” what we were busy doing. We made the trip a few more times until it was time to fetch Marco from school.
Lunch, Clearing up. Ordinary things to do while the mind rages.
Add the factor of disability and the feelings of responsibility and resultant guilt intensifies. Often not because it is more difficult to care for a disabled child but because of society’s reaction to disability. Because our choices are weightier. There are other children and almost everybody is quick to point out how much damage the care of the weaker child will cause to the others. Even though the siblings of disabled children love them dearly and usually become empathetic well-adjusted adults. Because we are told that keeping our disabled children alive is cruel. That their quality of life is such that it is better for them to die. We start to doubt that we are really doing well by them.
We are human. We get tired. We get sick too. And sometimes, for a fleeting second we wonder how life will be without the worry and the sleepless nights and the whispering at the back of the mind that this is forever. But then we cry out again: No, I did not mean that. God, don’t you dare take him!
Sometimes we walk around at night with a child in pain or discomfort and the only position of comfort is being upright – moving. Sometimes we wake up startled only to realize that we’ve fallen asleep on our feet. And then light dawns and we see the tired eyes light up at the view of the sunrise. And in an instant the suffering of the night was worth every second, With light comes new hope. We hand them over to a caregiver – at once relieved and at the same time wanting to yank them out of the caregiver’s arms and cradling them against our breast. We go to work, we come home for lunch, spending it with an older child while our hearts pound fearfully at the gasping breath coming from the bedroom or the worried look of the caregiver. We go back to work, come home for the night and start our incessant pacing all over again. Our conversions with God become incoherent jumbles of pleading sobs. God, let me take this. God, play fair. Don’t punish children for adult crimes. And lo and behold, God is there. He speaks from the pages of a Book: My child, take heart. I love you, I love you. Trust me.
Sometimes we lose our will to fight. And we worry that they will sense it and lose their will to live. So in private moments we whisper fiercely: Don’t you dare go! Please, please stay with me. Later nothing matters but keeping them alive.
If they get sick enough to have to go to hospital we pray for angels. Often we find them. But we also find prejudice and ignorance and misinformation. Together it makes a deadly cocktail. Trying to find hope in just one pair of eyes becomes a futile search. We point out the responsiveness and head growth since the last visit. But our good news get scratched from the page on developmental milestones by a few assertive penstrokes : CP. And sometimes, to rub it in, they ask you the questions: Head control? No. Rolling over? No….
At first we vow to get them on our side with charm. We speak eloquently, we dress nicely. We grit our teeth and become whores to save our children. Later, battle scarred we view them warily and think fuck you fuck you. You will do as I tell you. Or else. We know too much. We’ve lost trust in a faulty, prejudiced system. And they sense it and willfully become the enemy. After all, she’s the bad mother, the one responsible for all of this in the first place. But we need them because the responsibility becomes too much to carry and there’s no one else but paid help. We’re on guard the whole time. Tigresses protecting their cubs. And we have to be on guard, because the whole time they see the CP and not the boy..
Friends offer to look after the children for the night so you can have an hour to sleep or go out. Have a moment to just be the couple you started out as. But the friends who take the suction catheter from your hands and say, teach me, are few and far between. And after spending an evening watching you fight his hyperextensions most friends simply disappear. When they see you approach, they cross the street. They are praying for you, they say when they cannot avoid speaking to you. We must get together. Soon.
So they never get to see the joy. The joy that winks in clear blue eyes. That sparks from the sea on a day in September. That dances around between four people with kisses and hugs and soft warm little bodies heavy with sleep. Peace that slips in through the back door when you weren’t watching. A welcome guest. Peace because of not despite the odds.
And there are rainbows and pink clouds to be stared at in wide-eyed wonder. Bubbles. And aeroplanes droning overhead. You lift your head and look at Mama and together you rush madly out of the house to go see it. There’s accomplishment when you can switch on the light for Mama. There is a brother who calls you my baby, my sweetie-pie and knows to wait until you have focused on the red car he wants to show you. Who looks at babies being fed with bottles in frowning disbelief. How silly.
Nothing is impossible for God. So we have to accept that His will was done. Why then go back to that night with its “what ifs”? And even further back to the day he was born? Futile.
I wake up at midnight to put some saltwater in Magnus’ nose so he can clear the remnants of the cold he has. And then I cannot go back to sleep. I see Loren, suddenly clearly. He was dying before my eyes. Why didn’t I see it? Maybe because I didn’t want to.
And the pain is as fresh as ever. It is there all the time, beating in unison with my heart. It will never go away. He’s not coming back.
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.
W.H. Auden
My sister looks after a little girl whose daddy died. They play house-house.
I’m a little girl and you are my mommy. I’ll play and you sit there and cry.
Why must I cry?
Cause that is what mommies do.
After lunch we tackled the garden again.
I have treasure to show you, I whisper in Marco’s ear. We tiptoe to a thatch of reeds and I start cutting away the overgrowth.
A tap! And look at the stone! There. A hollow in it like a basin.
I nod solemnly. After all, this is a garden where fairies and gnomes live. They come out to play with Magnus while he’s asleep and that’s why he’s crying when he wakes up. He wanted to play some more. But Shhh, only children can see them.
Anything is possible here, in this garden. Maybe even beauty where the scars of yesterday show?
