Media Ambassdor, Lali Cardozo, talks about being a mother with ataxia to Calypso.
Calypso is my daughter; she was seven pounds and two ounces when she was born at 11.45pm on 17 October. She was a petite, average sized baby and there was nothing wrong with her. She was perfect; not too big, not too small. She had thick, black ringlets covering her head and a nose just like Chuchu’s (her father). She was white and she had a blue layer of film over her eyes, so they looked as if they were dark blue and, as the father is black African, people questioned if he was the father. Her ears, however, were very dark skinned…
The most important thing in the world to me is Calypso and her happiness and my greatest ambition is to be the best mother ever!
Because I have ataxia, there are many things that I can’t do like run, be fast or dance at parties, or go on long, exciting hikes that involve climbing (unless someone carried me – that is another story).
Nevertheless, since I’ve been a mother, I’ve found it very difficult to think of things I can’t do since being the best mother ever is not a difficulty when you have ataxia. It’s true that a situation may arise when I can’t get to her fast enough to save her from anything bad happening and it has bothered me but that bothers any parent whether they have ataxia or not. For example, if their child was at the other end of a big garden or moreover, a different country.
Ataxia has not limited me on how good a mother I can be, in fact, I think it has benefitted my ambitions as I cannot run away and am often stuck telling her stories, talking to her, teaching her etc. I find it hard to manoeuvre but easy to tickle and cuddle. I tell her at least one story nearly every day, often it’s two or three.
Seeing as she is only small, she is often left behind but I am always behind her, I know other parents always try to wait for their child but I literally can’t keep up. She moves faster than me, can dress herself better than me, she does my buttons up for me. It is a great help to me and very encouraging for her. She turns the light off for me when I’m in bed, she puts my socks on for me, carries my plates to the sink and reaches things for me (when I need to get something up high, it is an adventure to climb on my knee and reach it). She knows I cannot win against her, physically, and that is a great comfort to her when trusting that I will never leave her.
It always means so much to a child when they can’t keep up but Calypso doesn’t experience that too much when I’m around.
Since I don’t move around much, I always have the time to explain things to Calypso and before she was one, she talked and has always been able to talk well and she understands things that the average child would not. I partly put that down to me and the way I am so talkative and always explain things due to having ataxia.
She has a unique and broad vision of life that I am sure will bring a lot of goodness to her own life. She knows about people in wheelchairs and some major contributions that lead to happiness. She knows how to help those who are physically disabled and it doesn’t scare her. To her, it’s normal and she is learning how to be caring and giving. She understands that not everything is about her, for example, her father has to help me out of the car so he can’t always carry her… At four years, most children don’t really understand that.
After I gave birth, I weaved in and out of sleep that night, but was too scared to lose consciousness properly because I needed to hear Calypso breathing. She slept in bed with me (story of my life now) and I stared at her amazing, tiny features and let tears weep out of my eyes and I felt as though my heart was overflowing with love as I mumbled to her about how happy, proud and astonished I felt and how wonderful she was.