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, 2 July 2013
Living with IPAH – Part One
my point of view as a Mum:
of the hardest things to accept about Idiopathic Pulmonary Arterial Hypertension was hearing that I was going to lose
my son to it.No one should have to hear
that their child is being given a life sentence – especially from something
that has no medical reason for happening. And you know what? It's not fair. I'm sitting here at my laptop listening to Julian chatting with a mate he has over today, and it breaks my heart to think that one day, I won't be able to hear his voice anymore. I won't see those silly faces he pulls, won't be able to wonder at how tall he's growing or feel the comforting squeeze around my waist as he gives me a hug. One day, those bullet kisses he gives me on the cheek at night (the ones where he almost 'punches' his kiss on my cheek!) will stop. I can't imagine a life without my first born son . . . I just know that I will lose a part of myself along with him.
life seems to be full of disagreements with medical professionals, constant
visits to the doctors, hospital stays for a ‘simple’ bout of gastro, trips to
the chemist (I know almost all the staff by name now and definitely by face!),
calls from the school . . . it goes on and on.I’d love to be able to go a day without having to use the phrase “Jules
have you had your tablets yet?” or, better yet, “Julian!Why haven’t you had your tablets yet?!”Right now, I’m constantly worried about the
‘flu, even though he’s had his ‘flu needle.
I wonder what our lives would be like if Julian had never collapsed for that
first time, if this awful condition had never become part of our everyday
family life.Would he be sporty and our
afternoons be spent at sports practice and weekends at games?Or would he still be my little bookworm that
loves curling up with a great book?I
know we would be spending more time in the ‘great outdoors’ as a family,
instead of Nigel taking the kids one at a time for a nice long bushwalk so our
other children don’t miss out on the world.
all this, I don’t think IPAH has to be the almost immediate life sentence (between
2 – 5 years) it once was.I know that
one day we will lose our son to IPAH but it obviously wasn’t as soon as we were
told we would, and as his cardiologist – Dr. W – once told us, Julian’s life
would have be about ‘quality not quantity’.We really took that to heart (excuse the pun!) and I firmly believe that
the ‘quality’ has given us the ‘quantity’ we were told we wouldn’t have.We’ve made sure that Julian is as active as
he can be, doing what he can and, being extremely sensible about it, has enabled
him to lead as fulfilling a life as possible.So many new medical treatments have become available since Julian was
diagnosed, and I’m sure that there will be many more in his future.Julian has told me that he’s just waiting for
the research and technology to allow cloning of a person’s organs from their
own DNA.That way, he can have the
heart/double lung transplant he may one day require and not have to worry about
his body rejecting them!
outlooks are so important, and allow our dreams to flourish where they might
have otherwise perished.
“Keep your face always toward the sunshine –
and shadows will fall behind you.” – Walt