Archive for February 2010
He.
He has been so settled lately.
Happy.
Content.
He wants to be a footballer.
Play in the big league
and
between you and I
he just might make it.
He is a supreme athlete, a leader.
I am so very proud of him.
He plays the hug card so well.
There is no counter for it.
He may be special needs
but he is far from disabled.
He has an amazing sense of humour,
an amazing sense of self.
His dream is to become an “American gymnast”.
His smile is sunshine on a cloudy day
and somedays, when he slips
and calls me Mum, by accident
my heart quietly sings.
He is personality plus.
My rainbow after the rain.
He makes me a better person.
He is love and light.
He is my heart.
These boys rock my world.
Fashion sense.
Ivy: ”Noah, look at my hair. Do you like my hair? Mummy put it in pig tails, what do you think?”
Noah: ”Yeah, Ivy. I like it. It looks pretty… Hey, Ivy! What do you think of my hair? Do you like my haircut? What do you think?”
Ivy: “Oh Noah, it’s so glass season!”
(Translation: Oh Noah, it’s so last season!)
Fashion opinion starts early when you have older siblings, it seems.
Tuesday was a resting day
and Wednesday looked much brighter:
Without the pump and the accessed port,
she seemed lighter somehow.
Free.
A little worn, a little jaded
but happy
and for now,
I can’t ask for more than that.
She asked me tonight if tomorrow was Wednesday again.
When I answered no, she looked so sad.
I asked her why
and she replied
‘because ballet makes me feel like a butterfly’.
It didn’t start off like this.
It started out much better.
She was a little tired, a little run down
but happy and looking forward to this day.
It was supposed to go;
IVIG day
visit from the good doctor
ear check
given the all clear
all plans and paperwork done and firmly in place,
in case of emergency
up to the infusion lounge to hand over the pump,
be discharged from the program
and to give our thanks
for the tireless work
of ten or so wonderful nurses
over the last twenty weeks.
This is how it went:
IVIG day
suddenly halted by the broken I – med smashing to the floor
about 3/4 of the way through the infusion
tearing away the line from the port,
breaking the sterile field.
Incident forms and lots of cussing.
Loss of remaining IVIG.
The good doctor visits
ear check
all clear
but
she has the beginnings of a cold
so
IV antibiotics for another week
to cover her
and him
because there is no paperwork
and no plans in place.
When Ivy realises she has to be accessed again
she begins to sob
all the way to the infusion lounge.
No amount of soothing helps.
Not even plain chips help.
It feels like the longest walk of my life.
Explain to the nurses (who were not expecting a continuation either and therefore have not ordered more antibiotics)
Wait.
Ivy is clearly anxious.
Access fails four times.
Nurse declares Ivy’s site too traumatised (true) and that access has become increasingly harder over the last month (also true)
Ivy weeps.
Tells me she is tired and she just wants to go home.
Nurse suggests ringing the paed and explaining.
Paed is phoned.
No response.
Infectious diseases doctor is phoned.
He then phones the paed.
No response.
Finally Infectious diseases doctor comes down
assesses Ivy’s site to be too traumatised
and says Ivy can be discharged from the program.
He will take responsibility.
Meaning?
I’m not sure, really.
Ivy is too exhausted to walk
and the IVIG after effects have started.
I thank the nurse and the doctor profusely.
Hand over some Ivy – selected, Ivy – approved chocolates
return the pump
and leave.
Ivy falls asleep in my arms
that are also carrying two bags
a camera
and a pair of discarded shoes that will not fit in the above mentioned bags.
(Those darn bags are never big enough).
Ivy sleeps all the way home.
Cries throughout her first real bath in twenty weeks
declares herself sick
and skips dinner.
I’m feeling…
like I did twenty weeks ago.
The teenagers have already placed bets on how long Ivy will last
and I swear
It didn’t start off like this.