“Okay,honey,”hesaysagainina
high-pitchedvoice.“Let’shaveyou
comeout.”
Butbeforeshecanstandonthe
footrestandlowerherselfdown,he
grabsheraroundthewaistandpulls
heroutofherchairhimself.I cal-
culatethatmymethodshavesofar
failed.
Thefootrestistheonlythingto
fix,sothemechanicisinandout,
andmyworkasa parentisminimal.
Butit finallydawnsonmehowmuch
invisiblelabourI do.
FionaandI have
beenvisiting alot
ofdoctorsandspe-
cialistslately.They
demandchunksof
time(sometimesfull
days),theycostpet-
rol(sometimesa half
tank)andtheycause
stress(sometimes
immeasurable) as
myhusbandandI figureoutthe
logisticsofwhowillpickupwhom,
andwhenandwhere;wealsohave
a three-year-olddaughter.Butthey
alsocosttheenerg ythatgoesinto
subtlyadvocatingforFiona.It’sa
bulletpointinmyjobdescription.In
additiontomycareerasa writerand
adjunctwritingprofessor,I’vegot
tomakesuremedicalprofessionals
speaktoFionawithrespectsothat
shecanpreservehersenseofdignity.
I’vegottomakesuretheyappreciate
that she comprehends them.eatsherweightincheese,she’svery
thinanda headshorterthankidsher
age.“Hithere,”hesaysina pitchusu-
allyreservedforchihuahuas.
I getupfromthecarpet.I’mgoing
tohavetodothething.It’sathing
I don’talwaysevenrealiseI’mdoing
inthemoment,andyetI’mcompelled
todoitwithregularity.I’mgoingto
havetoshowsomeonethatFiona
understands,thatshe’snota dogbut
a human.
My daughter, who has Wolf-
Hirschhorn syn-
drome,ararechro-
mosomaldeletion,
islargelynon-verbal,
andthewordsshe
cansayaren’tusual-
lyintelligibletopeo-
plewhodon’tspend
alot of timewith
her.“Hat”issome-
times“ha”.“Daddy”
is“geggy”.Strangers
don’timmediatelyknowhowtorelate
toher.TheyassumeFionadoesn’tun-
derstandthem.I oftenneedtoshow
themthatshedoes.HowdoI doit?
I usea normalvoice.I talktoherlike
a person.I presumethatsheunder-
standsme,whichsheoftendoes.
“Allright,Fiona,”I say,“goahead
andclimbintoyourwheelchair.”She
placesa legonthefootrestandtries
tofigureouthowtogetherbodyinto
theseat.Withsomeassistance,she
getsthere.Themechanicnoticesthat
thefootrestneedsto be lowered.
READER’S DIGEST
“SHE’SA SMALL,
THIN,WEAK...”
PERSON, I THOUGHT.
SAY “ PE RSO N ”.
BUTINSTEAD
THE DOCTOR
SAID, “THING”64 March 2020