A.R.K
I remember back in 2006, when Nathan got his death sentence, and we were told about the ways he might die, I thought silently to myself that these people know nothing. They couldn’t (wouldn’t) even tell me in no uncertain terms what was wrong with Nathan and therefore, I decided, they have no right to speculate as to his life expectancy, abilities, disabilities and the likes. Statistics are for research. Not determining a child’s worth. I only recently realised that his doctor really never expected him to live until the age of 1. We were sent home about a week before his first birthday with a sick child and monitors and oxygen and pumps and god knows what else, because she had given up on him. I never realised.
I remember when we came home with him that day. It was a Friday night and I refused to wait until Saturday to fetch him. At that stage he had spent a whopping total of 6 weeks at home during a six- month period and I was desperate to get out of the whole hospital cycle. It was a typical Cape Town winter’s night. Freezing cold. Very wet. And Sir Lowry’s pass was one big misty mountain. So misty in fact, that even with headlights on you could see absolutely nothing in front of you.Doef and Nathan was in the back of the car and as I drove home, concentrating on not driving into the mountain and yet using it as a guide to make sure I am not in the middle of the road, I remember thinking that this was not a good way to die.
That was when I first started bargaining with God.
I made peace with the fact, that whatever happens to Nathan, it will not be because I didn’t try. I also vowed that Nathan will be the best he can be, and I will make it happen. We came home with a complete stranger and with lots of love and patience he turned out to be the most amazing little kid I have ever come across. He never once saw the inside of a specialist office for more than a year. It became an obsession of mine to keep him out of hospital.
I remember when he came home, he was on more drugs that could possibly be legal and if he wasn’t staring in front of him, he was sleeping and if he wasn’t sleeping, he was whining. It became my mission to figure out the drugs he was on. At first, for a very selfish reason…I had to get it cheaper somehow. So I took one drug at a time and made it my business to know what the active ingredients were, what the side-effects were and what would happen if I stopped giving it to him…
Once a month, I faxed a progress report to the specialist and requested the procedure on how to withdraw the drugs. I started with the one with the most serious side-effects. And month after month, he was off another of his drugs. Slowly, very slowly, I met Nathan. The real Nathan. That was marvelous!
During this time, I often felt that people pitied us. They looked at us with eyes that said shame, poor parents. I hated that. I still do. But in the end, that was the exact reason why people donated money to enable us to look after Nathan when his medical expenses became entirely unaffordable to us. I hated that too. But people were kind. And they helped, without expecting anything in return and without ever wanting more than what we offered. That made a real difference to our lives. We became able to afford our son. And not only did that give us a little bit of dignity back, but also did it enable us to hang our gloves up for a while and just be parents.
When Nathan died, I knew we had to give back. Somehow. That is why A.R.K was started. (Click on the word A.R.K to visit our website).By no means do we pity parents of children with severe neurological conditions. There is nothing to pity about them. We know how hard it is. We know how sad it is. And all we want to do, is take the stress of how the hell do I afford this, away.
Help us in our efforts.
