Baby Steps

A fictional story by Anita Gracey

Mummy says I have to put on my Summer dress for the day that’s in it.  I pat down the pink sticky-out skirt, then twirl to feel the freedom of wind, on cotton, on skin.  I stumble but, out of the corner of my eye, catch myself in Mummy’s full-length mirror.  I don’t recognise me; it’s me ok, but I had a beautiful ballerina in my head.  Looking at me, I’m standing with my feet apart, kind of stooped.

My Daddy has taken the day off work. Daddy, Mummy, my big sister, Emma, and I bustled into the Doctor’s office. They had been tearing their hair out to find out what was wrong with me.  Some of the tests had been really sore and no amount of Pooh Bear icecream could make up for it. You couldn’t breathe in the room; it needed a window open or something. Everyone sat in stiff chairs, except me, I sat on my Daddy’s knee.  I knew Emma would call me a ‘baby’ afterwards, but I didn’t care.  Suddenly I felt Daddy’s thighs stiffening and a sharp intake of breath making my ear go all scratchy.  I focused. “Free what,” my Daddy said. “Friedreich’s Ataxia,” replied the doctor.

I rested my head on Daddy’s chest, it was so hot. I caught words like, “Balance… Co-ordinate... Slurred... Progressive... Wheelchair... No treatment”.  Mummy put her hand to her mouth like she was going to burp. She didn’t.  Emma was sitting up straight trying to be all grown up. She had a faint quizzical expression like when she was doing her maths homework.

I started twiddling my feet, first one direction, then another.  I was wearing ugly old school shoes, dyed white for my first Holy Communion Day.  Mummy said no-one would notice but everyone else was getting new ones. Kelly was getting a parasol, Tara was even going to wear white fur.  I was nearly sick with jealousy.  Emma called me a ‘cry baby’.  On the big day, I was gorgeous in Emma’s hand- me- down dress; Emma said she looked better in it, but she’s a big fat liar.

The Holy Spirit shone through the sun.  It was perfect.  I could have burst.  I made Mummy and Emma race down to the church.  I couldn’t be late but I kept tripping up.  Mummy made us slow down and she held one hand firmly; Emma was told to hold the other.  She held it loosely, embarrassed.  Kelly said the Communion tastes like cardboard.  Tara said that saying this out loud will make a big black sin on her soul!  I could feel people looking at me sideways, but they gave me money so I didn’t care.   I made a fortune.  It was weird when a beggar on the street lurched over saying “it’s a pity for her” to my Mummy, like he felt sorry for me. He waved his beer can and laughingly said I walked like a drunk. Mummy didn’t say anything but put her head down and kept walking.

When we got home, Emma took me around to all the neighbours to get more money and to be told how pretty I looked. Maybe we shouldn’t have gone to Crazy Carol in number four, as she gave us nothing but asked me to pray for her dog, ‘Chancer’, who had been run over the week before.  I could see her eyes well up and did feel bad for her. Chancer tortured me and used to run after my bike; he took a real dislike to my stabilisers.  Emma says I wasn’t like other kids and would have baby stabilisers always.  Chancer was the meanest dog in the world.  Surely if there was a dog hell, Chancer would be there by now.

Emma, I and all the neighbours’ kids went round to Brennan’s.  I felt so important buying handballs for everyone.  I was really bad at handball; I could only do three balls, no matter how long I practised.  I bought so many:  reds, blues, yellows, greens – they were dazzling in the grey of the streets.  Daddy was home from work by the time we got back.  He was horrified that I had gone begging to the neighbours, but it was my Big Day and he only had ‘the talk’ with Emma.  Emma always says I’m Daddy’s favourite and I am.  I told Daddy that I couldn’t make up my mind whether to be a nun or a nurse.  Daddy says I could be both and look after the black babies in Africa.  Emma wants to be a vet and be as far from babies as possible. She can remember me whinging all the time for no good reason and the smelly nappies.

Daddy and Mummy have been really quiet since we got home. They keep staring at nothing, they seem sad. Crazy Carol calls in for a cuppa and a chin-wag.  Emma and I are hidden away under the stairs with the biscuit tin.  Mummy is crying slow tears now.  I can’t really see, but her shoulders are moving up and down and every now and then she’s making a groaning noise.  It makes me want to cry too but Emma gives me a warning look.  Crazy Carol says she’s in mourning for her Chancer and says Mummy is grieving for the girl she thought I was going to be.  I don’t really get it, but I feel I’ve let Mummy down and made her cry. “What about all the black babies in Africa? They need me,” I whisper to Emma.  Emma says, “You could be a mermaid – they don’t need any legs.”  I like this new dream and hug myself.  Mummy wants to know how the world can go on turning?  Daddy holds her close and says, “We need to take baby steps”.

Follow Ataxia Ireland on Facebook Follow Ataxia Ireland on Twitter

Monthly Lottery sign up button


Text "ATAXIA" to 50300 to donate €4 now! »

People living with an Ataxia benefit enormously from the many services provided by Ataxia Ireland.
Help us to continue helping them


Donate to Ataxia »

Donate to FASILend a helping hand...
Donate to FASI

Ataxia Organsiations »

Click to view European Ataxia OrganisationsClick on the map to access an interactive map for Ataxia organisations worldwide

Follow Ataxia Ireland