Just Breathe

I'm not sure what words will describe how I'm feeling right now, but I did feel the need to get all this out, even if it is extremely personal.  Actually, I do know what words will work.  I just can't repeat them in polite company.

I have found it harder and harder to hold on to my emotions these past few weeks.  I'm sure Jules can see the worry in my eyes whenever he gets out of breath, despite my best intentions to hide it from him.  I'm trying desperately to stay calm when he collapses to the floor, resorting to pathetic jokes about how out of shape I am while I put my arms around him from behind and help him to stand up.

When I think about what's coming up, my heart races.  I feel sick.  My hands tremble.  So does my chin.  Hell, my whole body does.  My throat gets tight and starts to ache.  But I grit my teeth and swallow it all back down.

Because Will and I only cry when Julian's gone to bed.  He's not supposed to be our rock, and he's not supposed to see our tears.  We can't put that responsibility on him.

Dammit.  It's not fair.

A few months ago, while Julian & Will were in New Zealand - thanks to the generosity of a number of people - we found out that there were a few locals getting quite nasty about us because we had started a GoFundMe page for Julian to travel to New Zealand.  To fulfill his big dream before starting 'Veletri'.  One of the things that was said was that we "always had our hands out, just because we had a 'sick' child".  There's a long story behind that.  I won't bore you with the details though.

If only.  If only he was just 'sick'.  I would do anything for just 'sick', instead of terminal 'terminal' and 'incurable'.

You know, on a day to day basis I can usually ignore the fact that my son is dying, bit by bit.  One heartbeat at a time.  Most days, it's easy.  Julian looks 'fine'.  He's got great colour.  He growing so tall, and his feet are bigger than his Dad's!  He's funny, he's a ratbag, he's so much fun to be around.

And then, out of nowhere, he goes pale.  He struggles to breath.  His heart pounds so hard that it vibrates the sleeve of my own shirt when I put my hand on his chest to check his heart rate.  His heart races so fast I can't keep count of the beats.  He collapses to the floor and can't get up without help.

He wakes up out of breath.

I'm just happy he wakes up.

Jules has gone purple!

 

Why?  Because it's Pulmonary Hypertension Awareness Month!

11.5 years ago, my husband and I were told this strapping young man (who is turning 15 next week) only had between 2 - 5 years to live when he was diagnosed with IPAH at just 3.5 years old.  He continues to fight with everything he has, so what else can we do as his parents but fight with and for him too?  Julian is an awesome - although somewhat irritating at times - big brother to his 2 little brothers and his little sister. 

He is a ratbag, he is hilarious, and he - like every other teenager his age - is trying to figure out where he stands in this world. 

He is my hero.




Next Thursday, on the 26th November, he will be going in to the Lady Cilento Children's Hospital to have a PICC (Peripherally Inserted Central Catheter) line put in.  He'll be coming home that day so he can spend his birthday - 27th of November - at home.  On the 30th November, he will be admitted to the LCCH for 2 - 2.5 weeks to go on a medication called 'Veletri', which is administered through the PICC line via a 24hour pump.  My husband and I have to learn how to mix his medication, change the medication cassettes, change lines, change dressings, not to mention learn and understand all about this new medication.  Can you believe we have to buy a cupboard to put all his medication, lines, dressings, etc in????  We will be away from our other 3 children for this time, and my MIL will be staying with them so they can finish off their school year without too much disruption.  Thankfully, they go to an awesome primary school with awesome staff and teachers!

So, can I ask you all to 'Like' & 'Share' my Facebook page - Saving Jules​ - to help us to raise awareness of this terrible condition.  Follow Julian's journey with IPAH and have a bit of a laugh at his antics.  You'll be amazed at how he faces each day.