This was actually written approximately 4-5 years ago. It was during an awareness campaign for Cystic Fibrosis. Added it to the new blog on the 16th September 2015. Editing it 30/09/2015 due to spelling errors and other associated thoughts.
The stupid comments we deal with on a daily basis Enough to make anyone crack
1. She doesn’t look sick / I think she looks great
If there’s one thing worse than being told your child looks REALLY sick. it’s people constantly saying she looks fine or good and healthy especially when you know the truth.
I don’t think she’s that sick, She has a MILD case of CF. Mild case WTF? There is no such thing as a Mild or Severe case of CF You either have Cystic Fibrosis or you don’t!
Jalan went for a year with no admissions, then BAM!!!! A year with 5-6 admissions in quick succession, like another friends child Coen. In more than out at the time. His mum Dawns saying of “We live at the Royal Childrens Hospital and have a holiday home up the coast” really hits home beacause that is what it can feel like.
You can have a year where you have 4 hospitalisations then you can go 4 years like Joelboy did with no chest issues then end up in the hell hole for 2 weeks with serious inflammation. “Joel was 10 weeks prem! ” From Leelee Thankfully he is still here at the age of 13 and yes they are starting to have their holiday home at thier home town of Bunbury too. He now goes in approx every three months. Some times more.
JUST BECAUSE THEIR FACE LOOKS FINE DOESN’T MEAN THEY ARE WELL
You cannot not judge a book by it’s cover can you!!!
So don’t look at a CF Childs face and assume their Lungs look that good too!.
Wish we could get a xray put on their T shirt each time they have a bad one to show the new damage and the crap that is in there and how CF is destroying the thing everyone needs the most to live.
“I cant believe how good she looks even though she is so sick”
YOU CANT believe it How do you think we feel We live with it each day It does our head in but guess what. They don’t look good to us sometimes. We can see the changes in their faces that show progression. We can see how their breathing is different even by the slightest change. We can see the little bit of extra blue around their lips and the nostrils flaring as they try to suck in that little extra bit of breath.
We can see that our child is one step closer to the “Ultimate Healing” when they can breathe freely for good.
“We can’t acomodate your child here for swimming lessons”
Huh what do you need extra for my child. She does not need a wheelchair She does not need a walking frame Its a LUNG disease wanker.
“If i found out my child had Cystic Fibrosis i would abort it”
Yes was said to my by a worker at Dreamworld. I think he should have aborted himself.
“My child has asthma she could have a attack and die easier than yours” Yep and i could push you under a bus too.
This statement is true to a certain extent. But IT IS NOT WHAT WE WANT TO HEAR. We are not in a competition.
“Will she die”
Ummmm YES mate and so will i and so will you. Everyone dies…..just not at the same time.
“Will she need a wheel chair”
Depending on how strong she is when she needs oxygen…..probably yes to carry the bottle of oxygen with her cause they are heavy little suckers.
Wonder how many more i can put here I could fill a novel
Constant so called positive comments, like she looks really good don’t help at all. Especially when your child is at the lowest weight for age they’ve ever been and wont eat this week.
We don’t want to be bullshitted, or brainwashed into thinking our children are fine.
They are not fine! Well they are at that time. The finest they can be at that exact point of time in their lives.
Oh that’s a smokers cough (Don’t ever say that to me!) This has been said to me with my cough all my life and i am not a CFer but shit it annoys me. HELLO I DON”T SMOKE AND NEITHER DOES MY CHILD. (My cough is from bronchitis as a kid) unless you count the crap in the air at the shopping centre because IDIOTS can’t read the signs that are on the bench they are sitting on AND the sign above their head. I believe i should be allowed to turn the fire hose on them After all there is smoke in a non smoking place which must mean its a fire there and other places where smokers believe it is ok to smoke. LIKE THE HALFWIT LEANING ON MY CAR at Main Roads the other day having a smoke.
Jalan would not go near the car and said Mum “hes disgusting smoking hey” and wont go near anyone who smokes. DONT LEAN ON MY CAR SMOKING especially if you don’t know me. On second thought just DONT lean on my car permanently. Rowan to his credit wanted to go and abuse the guy and tell him where to put his smoke.
My friend that Jalan wont even go near thinks Jalan hates her. Nope Jalan dont hate you she hates the fact you smoke and knows how dangerous it can be to her lungs and the fact that you smell of smoke which we have taught her not to go near.
“Your child should be home in bed” (had that many times)
Umm YOUR child coughing like MY child should be at home not out spreading germs that make my child end up in hospital for 2 weeks or more.
If my child stayed home every time she had a cough she would almost NEVER go toout of the house or to school. Their cough is designed to try move the thick mucous that builds up in their lungs waiting to harbour dangerous bugs.
If i feel my childs cough is because she IS SICK or could possibly spread it to your child she definately wont be at school or out.
She will be at the doctors to make sure this cough is not going to harm her.
Well she couldn’t have got it from our side! Must be your mums side. They were always sick.
I have 12 aunties and uncles on dads side they have all had between 3 and 5 kids and now they all have had kids and so on and no one has it.
On my mums side i have 3 uncles and auntys. One aunty with 10 kids and none of them have it either or their kids or their kids kids either. We don’t know if they are carriers and have been the “lucky” ones and been the 2 in 4 that are both carriers and haven’t had a CF child yet or if one or them or their partners are not carriers and have thankfully overriden the defective gene.
Just go get the damn test done and rule it out on your damn side cause i cant test mum She got cremated in 1999 so that causes a big problem. I dont care whos side it came from. I want to warn one side or even both sides that it is possible in the future so THEY can get tested if they want to avoid the heartache of what we go through.
If ANYONE can explain to me the positive spin on that one I’d love to hear it
I wouldnt have the CF gene.
Hello halfwit! There is no such thing as Blue blood you do realise this don’t you!.
4 Functions and Get Togethers
“You use Jalan so that you don’t have to go to family/parties” (ouch)
If I didnt want to come i wouldnt use Jalan i would just tell you I dont want to go. I’m not that nice of a person you know
We just love sitting at home by ourselves not socialising or having fun didn’t you know. We are hermits
I love BBQs and stuff
You will get endless amounts of stupid comments at functions
I’m getting to a point where it is really just easier not to go like other CF mums. Sometimes it is just too hard
5 The Ultimate Insults
YOU HAVE TOO MUCH TIME ON YOUR HANDS BECAUSE YOU AND DARREN DONT WORK
YOU ARE ALWAYS ON THE INTERNET
You clean your house , deal out meds, nebs, physio, drop kids off pick them up. Deal with a 18 yr old aspergers having a meltdown or yelling why can she have this and i cant.
Endless Drs appts, and you have TOO MUCH TIME ON YOUR HANDS?
Ultimate CF Mum Insult.
I am on the internet usually reading the latest research or finding alternative treatments that “just might work” in the slim hope the “cure” is found before it is too late for my child. Getting support because i cant stop crying or thinking about the future and seeing it without my daughter. Darren doesnt work at the moment because I CANT COPE.
LOTS OF Money is not the be all and end all of everything, Sometimes family is more important
Just because i play my games and comment on facebook does not mean i am there 24 hours a day even if sometimes it looks like it. It is open and i do things between doing other stuff. And by the way how do you actually know how long I spend on here unless you are stalking me or on here ALL the time too.
And even if i was what concern of it is it to YOU. This is OUR life not YOURS. I dont comment on how YOU live your life
“You should go out to work It will make you feel better”
Yep and try find a boss that will give me 2 weeks off when my child is in hospital and understand that i am late for work because my child decided she was going to be a NON COMPLIANT day so it takes 3 hours to get everything done instead of an hour. We sometimes have enough trouble getting her to prep on time let alone anything else. What boss is going to understand that my child is too tired to go to school so i need time off. The school rings because she is coughing a bit more than usual Yep no worries just go we can cover your work and do it for you.
MY CHILD is first and foremost the most important thing in my life and i will not compromise her health for anyone.
Who pays for the time off you need from your job. 2 weeks of without pay or use your holiday pay no problem we can live on fresh air.
” You exaggerate or make CF out to be really bad”
It is called a Life threatening/shortening illness.
yeah some people live to 50, 60, 70
THAT IS WHERE THESE AVERAGES come from I HATE averages it means there are very high AND very LOW numbers, and don’t people love telling you they met a 40 or 50 year old with CF. Or even older.
OH MY GOD well everything is going to be ok then isn’t it.
“Oh sorry, did you know I lost a friend at 31 last year”
“a girl in her late teens died in Perth only weeks ago”
“Just over 2 years ago we lost an 8 year old to CF (Ann in USA)”
“and a little baby Boy named Shane was born 12 weks prem and had CF he died 2 days short of his expected due date.”
Funny looking stats of they live til around 35 now………None of these were even close.
We meet a lot of CFers in hospital with Jalan in
Chloe died at 8 as well. She did not look sick enough to die 2 days before damn it. i was with her. We were talking and laughing. She was jumping around attached to a oxygen bottle. It looked like she was in a wheelchair because the gigantic oxygen bottle was too heavy for her body to carry around herself. It was a transport vehicle for her oxygen bottle. She just went along for the ride.
Georgie made it to 16 WITH A LUNG TRANSPLANT. All she wanted was the transplant so she could breathe and have energy. Hell she had more energy before transplant than i did.
These two have made the biggest impact on me ever with their beauty and courage.
All the rest of the ones we have known through friends that have died BEFORE 18.
We don’t put out videos abut those who have passed but I’d love to see a video with photos of everyone round the world who lost their fight with CF. it would be one long video! On second thoughts maybe I wouldnt because the pain is too real.
Go to You Tube and Search Cystic Fibrosis and see how many videos there are dedicated to those we’ve lost
How many of them are kids. How many are under 1, under 5, under 10, under 15, under 20. How many heartbroken families.
“The average age is getting higher isn’t it so the treatments must be improving”
Yes it is
They are finding ADULT onset CFers with strange mutations. They are still CFers though. Of course the age is getting higher. Take away the Adult ONSET. The 50,60,70,80 and 93 yr olds that have only been diagnosed in the last 5-10 years and see what the average age really is. Tell me why these people live to the age they do.
Give me the average “death” age and we will see what the true age is.
Oh thats right The average death age is 20.
YES I HATE THESE STATISTICS
We don’t live each day thinking our child is going to drop dead on their 36th Birthday. That’s what the stats say!
We wonder how sick they’re going TO get,
Will they get married, will they have kids, and yeah will I be attending my own childs funeral one day. You can say you shouldn’t think like that, but if you don’t have a child with CF or another life threatening illness, well, you’re not really qualified to judge are you.
“There are so many more but i don’t want to type forever I have other stuff to do like housework ewww
With thanks to Leelee for the base for this note. Yes there is a lot of plagarism in it from her article. A lot of her words but she says it better than i can I just expand on her fantastic writing.