I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, with a diagnosis of Idiopathic Pulmonary Arterial Hypertension. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!
Tuesday, 12 February 2013
When the attention turns to someone else
Julian has spent the last (almost) nine years getting the vast majority
of our ‘medical’ attention, and as it’s integral to our day to day life, for me
it can become just a part of my daily grind.I didn’t realise
how much of his emotional well-being was centered on the consistency of that
particular kind of attention until this morning, so you could have knocked me
over with a feather when he burst into tears after being told that, for a
change, someone else in our house was sicker than he was.
Our second son, Ayan (who was given the all clear for his CHD early last
year, when an echo showed that it had repaired itself) gets bronchial asthma when
he has a cold, and it can last up to a few weeks.There’s the constant coughing, the runny
nose, post-nasal drip and of course, the dreaded wheezing.These last few days have been particularly
bad for him, and we had to dig out his puffer and spacer and couple of days
ago, taking his spare one to the Primary School this morning.
I can only assume that Julian had a particularly bad night’s sleep
(probably because he shares a room with Ayan, and there’s that coughing &
wheezing thing he has going on right now!) because he woke up cranky.Make that bad-tempered.Actually, scratch all of that.He woke up just plain mean this morning, and
he took it out on two people – Ayan and I.
I managed to ignore the snide little remarks, and the sarcastic comments
that were made towards myself – I understand a bad night’s sleep, I am a Mum after
all! – but when he started to take aim at Ayan, I had to step in.Well, let’s be honest.I barged in, protective feathers puffed up
and everything!Sometimes as a Mum, you
have to go to bat for your kids, against your other kids . . .
I was prepared for the back-chatting, I was prepared for arguments, I
was prepared for anything!Except, that
is, for tears.Wow.I cornered Julian in the kids bathroom after
he lashed out at Ayan, and informed him in no uncertain terms that the way he
had spoken to his younger brother was unacceptable (and all over who could wear
socks inside!), that Ayan had had trouble breathing last night, as well as this
morning, and that he was sick.His
outburst of “Well, I’m sick too, don’t you care about me at all?” shocked me to
the core, and actually hurt quite a bit.Didn’t I care?I almost burst into tears myself!Instead, I fell back on a parent’s best
ammunition.I agreed with him.“Apparently not.”Followed by, “That’s why you’re making your
own lunch today!”
I can’t tell you how much that accusation upset me.Didn’t
I care?I had to hold back all the
comments that were rolling around in my head – If I didn’t care, why am I going to spend all day in hospital with you
on Thursday?If I didn’t care, why is it
always me in the back of an ambulance with you?If I didn’t care, why am I the one that rings up and makes sure your
medication has been ordered?If I didn’t
care, if I didn’t care, if I didn’t care . . .
I didn’t recognisethat Julian was becoming dependent on having my constant attention
for his health.It’s always there,
whether it’s in the forefront of my mind, or chugging along there in behind everything
that happens during the course of day to day life.Even if he’s not aware of it, he’s always got my attention.
I didn’t know that giving this
attention to someone else would make him think that he was no longer on my ‘Mum
Radar’.How could I?He has 3 younger siblings, and my attention is
always divided amongst them, my husband, and whoever or whatever else happens
to be around me at the same time!
So, now the question is, do I change how I’m handling the division of my
attention?No.Absolutely not.Instead, this has made me realise that I’m due
for a sit down discussion with Julian – again.It’s time he understoodthat whilst he requires a huge amount of our attention, there will
be times when someone else is going to need it more.His IPAH will always be humming along, will
always be there, and we will always be alert for even the slightest of changes
in his health.However, and this is the
clincher, this doesn’t mean that he necessarily needs more attention, all the time.And right now, his brother needs me more.
Julian (back) & Ayan (front)
Has anyone else had to deal with a similar situation, and if so, do you
have any hints or tips for me?This Mum
of 4 could use your advice!