Monday, 29 April 2013

alphabet boy

A  for appointments, abnormal, and anaesthetics ... sixteen now ~ or seventeen?

B  for blood tests, biopsy, bleeding and bruises, bruises and bleeding ... pale skin marred by deepest purple, blooming as we watch

C  for chromosomes, consultants, constant attention ... so many things you never seem to have enough of

D  for dribble, dysmorphic, dislocation ... developmental delay growing week by week, and year by year

E  for epicanthic folds, endocrinology and elbows that don't fit together

F  for fused bones, falling over, fevers and fits ... so familiar, so frighteningly routine

G  for genetics, and glasses ~ bi~focals ... constantly smudged with weetabix finger marks

H  for hemophilia, hydrotherapy, hypermobility ... joints that go the wrong way, it still turns my stomach to see you bend

I  for incontinence, infections, injections, intravenous hydration ... your eyes go wide, we hold you down...if only you'd drink

J  for jaundice, and joints ... no problems with joints I say, then remember...except jaw...hips...elbows...wrist...ankles...

K  for keppra, karyotype, and those kidneys of yours ... fused one into the other, and in the wrong place

L  for lumbar puncture, lopsided features and learning difficulties ... letters and numbers just marks on a page

M  for medication, makaton, mutations ... heartbreak wrapped within words of cold science

N  for neurologists,  nutrition, nosebleeds, nappies ... bigger every year, every year less acceptable to those outside your world

O  for occupational therapy, out of hours and orthotics ... supporting your joints, lending you strength

P  for paediatrician, plaster casts, pain ... pins and plates buried deep within your bones

Q  for quiet ... those days of silent shaking, of eyes that can't focus and ears that can't hear

R  for retarded growth, resuscitation, reactions to meds ... unexpected, unpredictable, un~undo~able effects

S  for special school, scoliosis, surgery, seizures, splints and scars ... hips to knees, abdomen, wrists, chest ~ reminders of surgeries past

T  for transfusion, temperature, tubes, tonsils, tripping up ... and falling down, meeting the ground face first

U  for understanding, unresponsive, unknown ... unknown everything, no one offering answers, no one sure of anything

V  for vaccinations, veins and vertebrae ... an op for after you're grown, pushed to the back of our minds for now

W  for walking frame and wheelchair, within and without ~ within your world, without compare

X  for x rays ~ hips and spine and wrist and elbows and feet and hands and skull

Y  for yawning ... we all hold ourselves tense til your jaw lines back up, no trips to A+E this time ...

Z  for zig zag ... up and down and up again ~ heart rate, o2 sats ~ zig zag, zig ... zag ...

* * * * *

This is my 'people who don't know Smiler' alphabet ~ the 'people who do know Smiler' alphabet will be making an appearance soon!


  1. Awesome (and moving)!

    BTW, I nominated you for a Liebster Award. Check it out here:

  2. Thank you Mom on the Edge ~ how kind! Unfortunately Smiler has been a bit poorly so I have a funny feeling my lap may be occupied after bedtime, but I will do my best to check it out!


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