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!