Thumbs up for a bad night's sleep

Sounds awful, I know, but for once I’m glad Julian slept badly!  After the sleep test on Tuesday night and his appointment with the sleep specialist on Wednesday, continual bad sleep every night are now getting sorted, with the possibility of a medication previously unavailable to him in a slow release tablet form.   Migraines are sorted, his IPAH is stable, so what’s next???

High school!

To sleep or not to sleep

Hopefully that question will be answered after Julian's sleep test tonight. At the moment he's channel hopping between the tennis and The Legend of Dick and Dom and relishing this chance to stay up a little longer than usual. Somehow, I don't think he's looking forward to attempting to sleep all wired up!

Our appointment with the sleep specialist to get the results from tonight's test is tomorrow at 12:30 . . . wish us luck!

Stress relief for Siblings

I have 3 older brothers - you can imagine my childhood! - and each one of them has a heart condition.  My biggest big brother was born with a condition similar to Julian’s called Secondary Pulmonary Hypertension, caused by another condition called Eisenmenger Syndrome.  My middle big brother has had 2 heart attacks and has twice had surgery to have stents put in, as well as having a blood clot in the heart.  My baby big brother has a Bi-cuspid Aortic Valve, sharing the same Congenital Heart Defect (CHD) as Jimmy Barnes.  We didn’t find out until I was an adult that I have a CHD called a PDA, or Patent Ductus Arteriosus.  What a lovely family history for our children to inherit!

We grew up knowing that my BBB (biggest big brother) was not long of this Earth – or so the doctor’s had said anyway – and as his younger siblings, we were always and forever running to my folks, with the words “He’s running again!” echoing through the streets.  Who could have known that my own children would be repeating those exact same words to me?

It’s extremely stressful growing up with the terror of knowing you may lose your big brother at any given moment, on any given day.  Sometimes you wake up at night, paralysed with fear that Mum and Dad might be telling you today that he’s gone.  I know that my BBB grew up with his condition hanging over his head, but I sometimes felt that he didn’t understand that it hung over ours as well.  I was an extremely affectionate (and cheeky) little sister, and from memory, overdid the hugs when we spent time with him just so he could store them up for Heaven.  Or, that’s what I thought when I was little anyway.  I thought that if I gave him enough, God could hand them out one day at a time, they would last forever, and he would never miss out of one of my cuddles.  My little girl is exactly the same with Julian, hugging him to the point where I think he sometimes feels a little smothered by love!

Knowing how much that affected me as a child, Nigel and I try our best to make sure that Julian’s younger brothers and sister have a little ‘stress relief’, away from the worries of their big brother’s health.

So today, while Jules is staying with my parents for his own break, we took Ayan, Ella-Shae and Boey on an adventure drive to Fingal Head.  This time, my sheer terror for my children was from watching them creep closer and closer to the edge of a cliff with their Dad to peer over the edge and watch the water crashing onto the rocks.    

 

This afternoon was full of carefree smiles, and racing on the beach without feeling guilty that Julian couldn’t join them.  We went on a long walk to see the Lighthouse, watched the surfers and searched for dolphins.    

 We collected flowers and shells, drew long lines in the sand, and cleverly used baby powder to brush the sand off our feet to get into the car.

Right now, I’m watching the three of them relaxing on the couch.  They’re tired, and they are relaxed.  And, just for now, they’re not worried about anything.

Thanks Mum and Dad

There is no friendship, no love, like that of the parent for the child.
-- Henry Ward Beecher

I feel like my folks have a sixth sense when it comes to our sanity!  Julian has been quite the handful lately, pushing our boundaries on an emotional level and challenging our parental authority on a daily basis. Yay for pre-teens!

Maybe there’s an underlying exhaustion when we speak, or maybe Mum’s can hear the tremor in your voice easier than most.

Whatever it is, the unexpected offer to have Julian stay for a week (until his sleep test next Tuesday) was exactly what we all needed.  It’s gives us a chance to focus more on Ayan, Ella-Shae and Boey, and it’s gives Julian a chance to have some time to himself away from the pressures of younger siblings and a kitten that wants to play at 2 o’clock in the morning!

Thank you, Mum and Dad.  You are - and have forever been – our rock, our shoulder to cry on and our bolt hole when life gets to be too much.

We all love you more than you could ever possibly realise.

As A Mother, Do You Know?

This post is a follow on from “You don’t look sick”  What the hell would you know?  I wrote this in response to a woman using the disabled car park at the kids’ school because her son had a broken leg.  When Nigel told me of her comment to him of, "If you don't want to share, get here earlier" it got this running through my head.  Please, share this with your friends . . .    


As A Mother, Do You Know?  By Coleen Summers

As a Mother, do you know what it's like to fall in love with someone in an instant?  In that moment you first see their tiny face, hear that beautiful cry, feel that wonderful warmth and smell that unique 'I'm your baby' smell?   

As a Mother, do you know what it's like to wonder how you could have so much love for such a small human being?

As a Mother, do you know how it feels when your baby smiles at you for the first time?  Laughs their first laugh?  Takes their first step?  Starts their first day of school?  Writes their name for the first time?  Draws their first picture?  Reads their first book?

As a Mother, do you know what it's like to to swell with pride when a stranger tells you how polite your child is?

As a Mother, do you know how it feels to be completely in awe of their amazing hugs?

As a Mother, do know what it's like to wonder why you sometimes feel like crying when they say to you, "I love you, Mummy"?

You do?  So do I.

As a Mother, do you know what it's like to hear your child scream "Mummy!" and feel your blood run cold?

As a Mother, do you know what it's like to race to catch your child as they collapse to the floor?

As a Mother, do you know what it's like to live in uncertainty because no one can tell you what's wrong with your child?

As a Mother, do you know how it feels to have the term 'Mortality Rate' used in reference to your child?

As a Mother, do you know what it's like to wait in a hospital waiting room while your child undergoes heart surgery, and watch the other parents be called to the Recovery room, while you sit there, still, 45 minutes past the time the doctor's said they would be finished by?

As a Mother, do you know?

I do.

I know what it's like to put my hand on my son's chest every night before I go to bed, just to reassure myself it's still beating.

I know what it's like to feel like crying, simply because I've heard the words "Just 5 more minutes, please, Mum" when I've woken him up in the morning.

I know what it's like to hesitate before going into my son's room when he's slept in, because . . . "What if?"

I know what it's like to see friends lose their babies, their children, and to feel guilty because "There but for the Grace of God, go I."

I know the feeling of despair when my son tells me, "I don't want to wake up in the morning.  I want to be with God in Heaven.  Then I won't be a heart kid anymore."

I know what it's like to live every single day in uncertainty.

I know what a broken heart feels like.

As a Mother, I know.

"You don't look sick." What the hell would you know?

Have you ever looked at a Disabled Car Park, thought to yourself, “I’ll only be a minute” and swung in, even though you don’t have a Permit to use it?  Do me a favour – DON’T!!!  I cannot believe the amount of people who are willing to use a disabled car park without a legitimate permit.  When you do so, you are taking a car park away from someone who needs it a hell of a lot more than an able bodied person does!

There are a great many ‘invisible’ conditions where people need to use a disabled car park, so don’t assume that the person who has just walked – seemingly able bodied – away from their car is using someone else's permit.  There are days where Julian needs to use these car parks, but doesn’t necessarily need his wheelchair, and I have lost count of the amount of times Nigel and I have been approached by do-gooders accusing us of not needing the car park, of using someone else’s permit, or simply being glared at and pointed at from afar.  Just because a person isn’t using a walking aide, in a wheelchair or has ‘obvious’ medical problems, that doesn’t mean they aren’t ill.

Oh, and if you are in a disabled car park without a legitimate permit, don’t get pissy with those of us who do need it and ask that you move!  I remember one particular time when I approached a man who was parked in a disabled car park and asked him to move (he didn’t have a permit) and his response was, “My wife has a sore knee.  What’s wrong with you, you don’t look sick?!”  I’m afraid I wasn’t very polite when I told him that we had every right to use the car park and to move before I called the police – they probably would have cared about as much about his wife’s sore knee as I did.  This moron very nearly – and deliberately – backed into our car when he moved, hands gesturing the whole time.

I don’t care if you have a sore knee.  I don’t care if you were ‘only going to be a minute’ (I’ve even heard this from Australia Post delivery agents), and I don’t care if you think I don’t look sick.  I’m not.  But what the hell would you know?!  What gives you the right to question me???  I have a legitimate permit displayed on my car, you don't.  I don’t need to explain to every person I ‘remind’ they’re parked illegally, or the person who is glaring at me from afar, why we need – and are legally able – to use a disabled car park.  I will let you know though, in no uncertain terms, despite the fact that it’s none of your business.  Ever.  Didn’t your parents teach you any manners?  Just get out of the car park if you’re not supposed to be in it!!!  Nigel and I are at the point where we will just park you in.  Want to call the police because of this?  Go ahead.  I dare you.  I’ll cop the fine – but so will you.

The next time you park in a disabled car park and don’t have a permit showing, you may find one of these postcards on your windscreen.

(If you want the file for these postcards to have them printed up yourselves, leave me a comment below and I will organise to get them to you as soon as possible.  The more people who find these on their windscreens, the better.)

 That was us.