Hoochiemumma

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Tag: cystic fibrosis

She’s at it again.

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Today is Cystic Fibrosis awareness day and I just can’t seem to let it pass without writing or sharing or giving it some recognition because for years I thought this stupid disease would change our family forever. I thought it would take our son away. I thought that he might not reach adulthood. Crazy thoughts? In hindsight yes, but at the time it was very real.

18 years ago, life for kids with CF looked a lot different than it does now. Being born in 2005 with CF certainly held more hope than previous years, and the prognosis was definitely getting better and better as time went on, but for new parents it was hard to see any light at the end of the tunnel.

I vividly remember carting my precious baby around the Women’s and Children’s Hospital, side-eyeing the skinny young teenagers I’d see who were muffling coughs with hunched shoulders. During those early years, there were some familiar teenage faces who would be strolling the hallways and riding the elevators. I never knew them by name, but I knew that these were “CF’ers” and I was staring at my baby’s future.

We continually hoped that he would be one of the “lucky ones”, the ones who hardly went to hospital and barely caught a cold. There doesn’t seem to be much rhyme or reason as to who gets chosen to be a “lucky one”. It’s pot luck in a pretty shitty competition.

As I clutched my son, literally and figuratively, through the early months, I honestly thought that our life, especially my son’s life would be dictated by this disease in the most horrible ways. I also thought that I would never be able to leave him or be away from him, that I could never go back to work, have a hobby, an anything. So overwhelming was the prospect of what this disease could do, I was crippled with fear of the future.

But as it does, time marched on, and my deluded thoughts and anxiety for the future settled, while we rode the roller coaster of CF. We navigated our way through some pretty hectic kid juggling phases and at times, some worrying moments but amongst that, life trotted along beautifully. In the background though, there was a cloud – a cloud that hovered without us ever knowing when it was going to rain. It was unpredictable – sometimes it was a brief sprinking shower and other times a lightning storm. A lot of the time it caught us by surprise.

Fast forward to 2022 – A magic little pill called Trikafta finally became available for people living with CF in Australia. I was cautious in my excitement and didn’t want to pin all of my hopes on it, while I simultaneously pinned all of my hopes on it.

Luckily for us, this little pill turned out to be pretty magic. It’s been just over 12 months since Mac started Trikafta and it’s been just over 12 months since he’s needed antibiotics. The cloud seems to have lifted a bit. It’s still there, but it seems to be a fair weather cloud these days and the future looks very different than it did before.

In saying all of this, Trikafta isn’t a cure for CF. Mac has definitely drawn the long straw when it comes to having such a fabulous improvement taking this medication. Some people with CF don’t have the right genotype to take Trikafta and some can’t take it due to rare side effects. For others, it’s simply a case of it just not working as well for them.

So until a cure for CF is found, I’ll continue to do my annual awareness shout-outs. I’ll keep wishing for the same thing each year as I blow out my birthday candles as well as cross my fingers that CF will one day mean Cure Found.

M

D-Day

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Tomorrow is D DAY. Its a fundraiser for the Cure4CF Foundation. Yes, I’m at it again…. Yes, it’s probably annoying. I know how I feel when I see people over share the same thing. I eye-roll a bit and think “yeah yeah we get it”.

When you’re on the other side though, and there is a cause that you’re passionate about, especially one that involves your child, there seems to be motivation to be annoying and speak out.

Sometimes sharing too much can come across as attention-seeking perhaps? I have always struggled with this balance. There are plenty of people out there branding their existence with having a child with an illness. Usually, these people are giant pains in the arses and sometimes their kids are too.

I would give anything to not have this as a topic to write about. But here are.

We all have struggles through, a hurdle, or some kind of challenge that life throws at us. Every one of us. I’m sure you’re thinking of yours right now. When I think of my family and friends I can easily identify something going on in their lives that is, or has been stressful, hard, or sad. It’s called life I suppose.

Most often, struggles have some kind of silver lining. One of the positive things that having a child with a chronic illness has brought me, is being able to put things into perspective. It’s really easy to get hung up on the small stuff and I certainly do my fair share of that at times. Like this afternoon when Scarlett dobbed on Elliot for being a bit of a dick on the bus.

Did I speak to him about it.. yes.

Did he deny that he did anything wrong…of course.

Did he run away to his room while I was mid sentence, yelling “you just don’t get it mum, stop going on about it”… yes.

Did I see red and turn into psycho Sally and tell him that I will ban him from the bus myself and also used the “f” word twice in one sentence. Also yes.

So OK, sometimes I do sweat the small stuff.

Anyway… I digress.

I have often wondered what kind of parent I would have been if not for the experience of having Macauley. I have also wondered how different he would be too. Those early years were tough and I was fairly intense and controlling when it came to trying to keep him well. It was the only coping mechanism I had to make it feel like I had some kind of handle over something so uncontrollable. I was pretty much kidding myself, but it made me feel better at the time. Because his health was my number one priority, everything else kind of took a back seat and priorities shifted a little. I think I definitely had it in me to be competitive and compare. What a joy sucker that is. (Just a tip for new mums too….you soon forget the age they start crawling, or if they walked before they were one. Plus, once you have more than two kids you get them all mixed up and refer to those early years as “well one of you stated walking a bit late… I dunno which one of you it was now?”)

So by the time he turned 5 and started school, I didn’t really care that he couldn’t hold a pencil and write his name yet. Was he meant to? Besides sending me bat shit crazy, I didn’t worry too much that he was stuck on level 3 reader for what seemed a 100 months of Sunday’s. And who knew that being able to tie a shoelace by a certain age was a milestone to be aiming for? Just buy the velcro shoes people. They’ll get it one day. All of these things are important to a certain degree, but I kept thinking how lucky we were that he was at school, that he was born in the new millennium. If he were living in the 60’s I could have well been preparing his funeral, not his first day of school.

Which brings me to my point of being an over sharer. It’s due to people making more noise and fighting for funding and raising awareness that has led to some amazing medicines and research being done in science land. Sure, big pharma is probably all the horrible things that people say it is….to what degree I wouldn’t know. All I know is that without “Big Pharma” my big kid wouldn’t be here. As evil and horrible as people make them out to be, big pharma develop and provide my child with medication he literally cannot live without.

Organisations like Cure4CF Foundation raise money to provide funds for exciting developments and research focused on a CURE. I see it like a giant jigsaw puzzle where all of the new bits of research from around the world get tacked onto the older bits and are pieced together to solve the puzzle. I am hopeful that the puzzle of CF will be solved so that Macauley and many others can breathe a little easier.

Literally.

M

PS….As always, if you can give, please do or simply share to make aware. 🌹

 

 

Just Call Me Karen

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I think I got talked about by the nursing staff at hand-over. I rekon theres a high chance I may have been referred to as a “Karen”.


Well, buckle up. I’m a Melissa.


Here’s a bit of a back story and update:


We’re heading into week 3 with number one son in hospital. Usually it’s a stock standard 2 weeks of IV’s… bug dead.. see ya later. Didn’t quite happen this time. Anyway… he has an inhaled med he does with his chest physio, and because it can cause a bit of lung irritation, it’s being diluted to half strength… all within the orders written up by the Dr etc etc blah blah.


Time comes to have this medication. I remind the nurse that he’s having it half strength.
Nurse returns telling me he’s been having it full strength, because that’s what’s been signed off on the drug chart so that’s what she’s brought in.

She told me this THREE times, because each time I corrected her, her ears must have imploded and she couldn’t hear what I said.


I reiterated my point AGAIN and politely but assertively suggested that it may have been signed off incorrectly on the drug chart by the physios and can we just have it mixed the way I’ve asked….please and thankyou very much, for fucks sake, Amen.


Now this is where I shall intervene and just hit up anyone who is embarking upon a career in the health or caring industry.


LISTEN TO YOUR PATIENT’S. For the love of god, even if you think they’re complete cretins and dumb as a bricks….listen to them.


They’re not always going to be right, but the chances are that when you question those who live with chronic illness, they probably know what they’re talking about. I might even be so brave as to say that the PARENTS of children with chronic illness know more about their disease than you, and sure as hell know what the fuck is going on in the room of which you weren’t present when the bloody mediation had been given.


Gah.


I don’t think in anyway that my exchange was aggressive or rude, I just had to repeat myself until she actually listened, and by the third time, I may have had a tone in my voice that resembled “Karen wanting to see the manager”.


Also, I was tired, so I wasn’t my usual delightful self. After all, I’d been sleeping on a bed the devil himself designed and quite frankly, since I’ve hit my 4th decade, the idea of making others a bit uncomfortable doesn’t destroy my thoughts or conscience as it once did. I’m over pleasing people who aren’t pleasant. It’s exhausting.


What was interesting was that the next morning the day staff mentioned something about the conversation slash exchange I’d had with the nurse the day before. This nurse was older, more experienced and appeared supportive. She empathised about how she is aware that parents know what’s going on with their children’s health blah blah blah…but during our chat she used words and phrases like “argument”, “good for you”, “tiger mum” and “speaking out”.

Ummmm….What!?


And what exactly is a tiger mum..?


I asked the Google machine and this is what it said.


I’m confused because I’m obviously not Chinese and I don’t know Amy Chau so I think she meant being a mum “like a tiger”.



This is much more accurate, plus the father reference is much more relatable too…


Please bare with me while I pull up my feminist knickers here as I ask…


What is the male equivalent of a “tiger mum”?
Who is the male equivalent of “Karen”?
And why are women seen as difficult, argumentative or speaking out of turn when they make others uncomfortable or question something or god forbid….disagree?


I may be wrong, but think I can pretty safely say that if I had a dangly thing between my legs and was in the same situation, I wouldn’t be seen or described in the same way. I’d probably be seen as confident, strong, knowledgeable and interested. We don’t use these words for women enough. We assert them to be difficult, bitchy, sassy, opinionated and up-themselves.

Plus our names get changed to Karen.

Well I love Karen’s. I know a few awesome ones too.


I think we should all find our inner Karen, and I mean that in the most wonderful way possible. We should demand more than the bull shit we’ve been dished up over the generations.

Question the nurse. Speak to the manager. Ask for more information. Disagree. Speak up without fear of how is “looks” or “sounds”. Assert your point when you’re not being listened to. Don’t be afraid to cause someone just a little bit of discomfort.

It’s taken me over 40 years to be okay with the idea that I may offend someone or cause an eyebrow raise by just asking a question and that it’s NOT MY PROBLEM.


Fair chance the people we make uncomfortable are under 25 years old who think they know everything there is to know, can’t differentiate between you’re and your and lack the ability to count back change without a calculator. How’s that for stereotyping?


Their time will come though. They’ll hit their 40’s and feel the freedom of age and wisdom. They’ll want to talk to the manager and ruffle a few feathers because they’re old and sick of everyone’s shit. They’ll do this and look back remembering the Karen’s of yesteryear. They may even smile, shake their head with a knowledge that they have now become the Karens they eye rolled in their twenties. They will embrace this change and their new found title.


Without further adieu, I present to you the “Jessica’s”


And in 20 years time, they’d like to see the manager.


M

*disclaimer.. I adore nurses. They do one of the hardest job in the world and don’t get paid nearly enough for what they do. I was a nurse for a while too, and this is definitely #notallnurses