from Peggy -
after attending a recent workshop, especially when the speaker (a lady diagnosed at the age of 40 with asperger syndrome - a higher-functioning level of autistic spectrum disorder) keeps making comparison of herself and her typical (developing regular) sister..it brought back many precious memories of the time my sister, Theresa who is a Down Syndrome child, was sharing a part of my life..it made me think that night if she’d made comparisons between herself and me at those times..we're 2 years apart..she being the older..we were close in age so i was the only playmate she had since the rest of the girls started primary and secondary schools..
may i just share a little of her lifestory..
when i was merely 4..she must've been 6..the others girls were 9-16
she didn't understand what dressing was all about and that it was socially and naturally important to get dressed..each day after a bathe, while i was drawing dolls and animals by the garage..she would be running naked round the dinner table with mum chasing and screaming at her with her clothes in one hand..i always found it amusing and thought it was part of a daily family ritual..perhaps it was a fun 'game' for Theresa wearing out my folks’ energy..but nobody else in the family plays such funny game..of course along the way, she learnt she ought to get dressed before coming out of bathroom..
the 10 of us in the family (my paternal grandparents, parents and 6 of us girls)..made it impossible to have us all at the dinner table..Theresa and I were always appointed to sit at the coffee table to have our meals..once we’d chicken wings..me being a little girl likes to savour the best till the last..i’m always tempted to slurp the juice on the wing with my fingers and hurried to gulp down the rice..i would never allow any bits of rice be left on the wing..Theresa was the exact opposite..she would eat the best from the start..i remembered that day, she finished her big fat wing..threw the bones on my plate..and took mine wings to her plate..i looked blankly at her..she stared at me and smile..i didn’t knew whether to laugh or cry..i didn’t cry because I knew she wouldn’t understand she’d been awful that day..i just felt I got ‘robbed’ so do I report to my folks..?? hmm..
when i was 6..she was 8..the others girls were 11-18
we moved to a new place..an apartment with linking doors from the kitchen, laundry room, common toilet, back room, hall..and back into kitchen..of cos we 6 girls loved this place cos we could play hide-and-seek with each other..that afternoon while the rest were shifting boxes, I was assigned to look after her..i taught her how to hide and seek the others..i’d taught her so well that she hid her face in the video player cabinet..her head got stuck in there for a good 20 mins..we were all worried sick...@ least i was VERY..cos i taught her to count to 10..her nose had a permanent scar since then..she was scolded for being 'naughty'..what a 1st day @ a new place..
all 6 of us sleep in 1 bedroom.. imagine how rowdy it would be every night..throwing pillows..fighting for bolsters..pulling @ each others’ pyjamas..flapping blankets on our shoulders and be superman..it was room with 1 king-sized bed, 2 beds that you gotta pull open every night & a made-to-measure cradle (the biggest that can fit 2 adults..)..a padlock is ready every night to keep the permanent resident safe in there..you don't have to ask who's been scheduled to sleep in there..i never understood why Theresa had privilege using that bed..but I understood the lock was to keep her safe..i thought it felt so 'kingly' to sleep in there..so i choose to crawl or climb in every night because she would call or pull my hand..she already understood what was loneliness since the age of 8..of cos I was reprimanded for climbing over cos i’m a fall queen myself..after a while my folks gave up locking her and I became the other permanent resident..i made sure Theresa has a 'hotel-standard' bed with soft toys..
when i was 7..she was 9..the others girls were 12-19
this was the naughtiest period of her life..or so I thought..the never-ending things she’d done, always left me so amazed..she taught me how life could be interesting..
one day she would be scooping dad’s guppies from the tank and flunk them out of balcony..another day she would take the tortoise by its shell and leave it by the edge of the balcony and waited for it to drop out of the house.. then on some fine days, she would be eating soap as she showered..and I’d to start pulling them out of her teeth..she grits on them like they are some heavenly choc bars..then one Lunar New Year, she had to plucked all my father’s ‘kam quets’ from the plant and threw them all in the pot..he just bought it that evening..i got scolded for all these because I was always the 1 and only witness to it..but the guppy was already out of the window..tortoise with 1 leg left by the balcony..soap already dissolving in her mouth..last kam quet plucked off..
we started to bring her to church masses..i remember she loved to put on that ‘ABC’ dress sewn by my mum on every Sundays..if it wasn’t ready for one Sunday, I would have trouble trying to coax her into wearing another dress..she loves taking pictures in dresses, wear a big hat, tilt her face towards her left, puts her index finger at her chin and smile..Oh! does Audrey Hepburn take her pics like that too..
when i was 8..she was 10..the others girls were 13-20
she started trying to call my name..but I don’t know how it got to be ‘Pah Kap’..(‘pigeon’ in Cantonese). My friends always laughed whenever I’m picked up from the school bus by mum and her..Theresa would say "Pah Kap.."..N my friends would ask "what in the world is that??"..
for certain things that I’d in life..she’d less of it..friendship, school life..so I always make up to her with snacks from my pocket money..after lunch, mum would say "keep an eye on her. I’ll go bathe."..i nodded my head and grinned cos it mean time for us girls to ‘party’..sitting across each other at the table, we were supposed to do our work but my eyes, always fixed on the toilet’s door.."party’s got to stop when mum unlocks the toilet".. i flash out my snacks (I made sure it was different variety everyday so it would surprise her all the time)..bits of the snacks would go under the table each time..Theresa would grin, pick up the snack and pops into her mouth..tries to chew with as little movements so mum won’t find out..really..till now, mum didn’t find out..it was one of those little secrets..
she’d started school @ MINDS 4 years ago and was made class monitor now..i visited her in school with mum cos her teacher praised her for being able to serve milo drinks to her peers..
whenever it was the school hols, I would cut strips of paper, pretend being hawkers selling noodles with my mum’s pots and pans..then we would ‘close the shop’..’take the bus home’ ..do the ‘laundry’ (we took out every single of our T-shirts from the wardrobe, hang a rope across our bedroom)..
when i was 9..she was 11..the others girls were 14-21
she started drawing on my artworks, tearing up my exercise books..snipping my textbooks..throwing my buscard up on wardrobe tops, hiding every of my workbooks in cushion covers in the hall..i got stressed when I said "er, I lost my buscard".."where?".."in my house"..the prefect would stare at me like.."what rubbish!"..whenever grandmother finds out she would say"let’s send her to the rubbish centre, leave her there so she won’t disrupt your stuff and work anymore.." I would be very very angry with her for saying that..slowly I learnt by getting angry wasn’t the solution..so everytime I’ll keep quiet and spend hours rummaging every corners of the house to find my stuff.. grandmother never made those statements anymore thinking my sister had stopped her mischief..
when i was 10..she was 12..the others girls were 15-22
she started falling sick and stayed home..she was upset whenever I leave home for school..that means she’s back to watching my mum wash clothes by the side of the toilet and listening to her old foggies songs..i did things to cheer her up..drew her pictures..made them into puzzles..made paper dolls and animals with clothes so she was occupied when I’m out..
when i was 11..she was 13..the others girls were 16-23
we moved again that year..it left a deeper impression than the 1st..that afternoon, I was yet assigned to look after her again..i was showing them the rooms to place the boxes when I found Theresa missing..she was out of the house..i panicked..lost in a new environment..!! can you image I was frantic..we live next to a highway!!..i ran out of the house..down the stairs..asked the stupid police guardhouse N they told me they didn’t see anyone..i ran out to the road and tried to spot her..then..i saw..a teenage girl running across the traffic next to the highway in her..ORANGE SHORTS..i was quite sure it was Theresa cos only she’d those shorts..of cos I’d a good scolding from my good ol mama..who else can I blame..not the one with the orange shorts definitely..
when i was 12..she was 14..the others girls were 17-24
She was diagnosed with leukemia and started staying home..I loved to cook her meals at those times because I knew she didn’t feel good physically, mentally, emotionally..she literally waits for me by the gate to finish school..come home..put on apron and cooked her fave instant noodles..those little moments were the things she looked forward to..
My father doted on her most at those times..he would make her favourite hainanese chicken rice..N always reserved drumsticks for her..strangely, I’ve never once felt angry with that..
one thing that made me guilty till now..I’d finished PSLE and wanted so much to go out..at that time..just a shopping trip was good enough..my sisters wanted to treat me to ice-cream..but I thought I ought to stay home with Theresa..she was in bed..i said a prayer to God and asked for a sign.."God, if you feel I should stay home to keep her company..let her tell me.." she did..she said "stay at home"..but I’d wanted so much to enjoy after months of hardwork..i got out of the house eventually..but I promised her I would keep to 2 hours..and bring a snack back for her..
the only thing she found energy to play with at that time was to wriggle my father’s toes..i don’t understand why..but she likes it..she would pull a stool before he sleeps every night by the bedside..touch his toes and be happy about it..it was such simple pleasures she enjoyed..we would never get to see why..it was pure joy for her..
when i was 13..she was 15..the others girls were 18-25
Then she fell into relapses often..soon school became impossible for her..hospital-stays were her greatest fear because it was different from the houses that we’ve moved..all these times..my next destination after school was the hospital..as it has always been..bringing a snack would cheer her up..but sometimes..the chemotherapy sessions made her feel so terrible that even MacDonalds was a no no..she’s lost her appetite.. weight (she was scrawny for once)..N her hair..she didn’t smile very much since..from then on her pictures were often taken with a cap on..she didn’t like at first..but soon insisted on it after I said she looks beautiful in it..
each time she’s sick (before she was sent to the hospital to stay)..she would refuse to take her dinner..I’d to coax her into eating by making smilely faces on her food..when she’s done with hers and when I take mine, she’ll refuse to let go of me..i’d to sit next to her..1 hand scooping my dinner in the dark (because I wanted her to rest her eyes)..the other, patting her to sleep..
She passed on in May that year in 1990..1 day after my parents’ wedding anniversary and it was mother’s day that sunday..my father dreamt of her few days later..dressed in white, she spoke to him "father, i'm an angel now in God's kingdom..everyday i'm dancing and singing at His feet.."
like Wendy says "don’t give up on me.."..i never did not give up on Theresa..so i'm sure she didn't feel less as a sister who’s handicapped..in fact she taught me great things..her smile and courage was the greatest lesson..she was angel to the family..
May 2005
(a tribute to Theresa, 15th death anniversary)
..a child, whether special or typical, would want to feel your love,
like to have your assurances,
thank you for treating them with respect like others..
that’s the best gift you can give to them..
the only thing you’ve to do is..give them all of it..
~~~.
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