Losing my grip (and my mind)

Today, just like everyday I hate CF. Hate it. It is a bastard disease that I would wish on no one, especially one of the people I love most in this world. My soul. The very reason I get up and keep going.

Clinic yesterday was just crap. After such a huge slide in lung function, doing everything we could then doing an admission and crawling those numbers back up....BANG - we are where we started on December 17th. I am so pissed, so angry and disappointed and disillusioned. I HATE putting on my mama face today and pretending all is ok. I look at Julia and my eyes fill with tears. SHE tells me not to give up (as if I would!!!!!). I want to grab her positivity today as I feel like I'm losing this battle. I'm really scared because she's never had numbers like this before if she wasn't sick. So frustrated and angry and hurt that 100% compliance means sweet fa with this cow disease. Man I hate you CF.

You'll take me down screaming and fighting CF. I'm scared but I won't let her go. We've got to beat this as there is no alterative.

Support in the midst of sorrow

I am so blessed to have a few really close CF mum friends. I often say "no one gets it like a CF mum". It's not a throwaway line. You know they have shed as many tears as you, advocated loudly for their child like you have, love fiercely whilst trying to make sense of it all. That's why when you have to stand by them and watch their ultimate grief, it's one of the most heart stopping experiences.

My CF mama "C" is an awesome woman. She knew the road she was travelling a few years ago when "microbacterium abcessus" actually became a term I was familiar with. She knew harsh realities of this disease that would affect her life forever. It was hard....oh so hard and I didn't know but an inkling when she shared. It seemed like blow after blow after blow kept coming. Then after all the suffering, when she lost her sweet baby girl, she is still showing that bravery, that strength that made her one of my greatest confidantes and such a sweet friend.

I will have the heart-breaking privilege to say goodbye to Miss "A" in 2 days time. I have to call it a privilege as it was an honour to see a young woman go about her life in a teenage way even suffering as she did. I had the privilege of talking to her and getting to know her. I am so happy to have some funny memories locked in my heart. And my CF mama will be there saying goodbye to the love of her life. And the thing that never passes my lips has come up so much this past 10 days which is that ultimately, one day I may stand in her shoes.

Thank you C and A for being part of my life. I will never forget your support when I have needed it so much. I hope I will be honouring your strength and the love you have when we all say goodbye at the final resting.

Some days I get tired of listening to how good everyone is. Sometimes my major accomplishments are getting through the day at all. People will ACTUALLY say to me things like "Oh, we always spend time together as a family on the w/e. It's always family time for us" or when G was overseas "Oh I wouldn't be able to do anything important like holidays without her - I'd feel too guilty". It's like working - me not being in the workforce is sort of a choice - I want to be at home for my kids and I have to be the one available for physio - I'm not able to pass that on to anyone. But I'm over the mother guilt!! And I'm over people telling me that they are doing so well compared to me. grrrrr. It makes me doubt myself as a person and a parent and it's unnecessary. We're all so PC. No one does anything wrong.

Well my kids eat McDonald's. And processed breakfast cereal. They use home brand soap. I don't cleanse and moisturise every night. I get cross at my mum sometimes when her dementia kicks in. I throw up my hands in despair often. I swear. I eat sugar. I sometimes listen to normal conversation and think everyone is crazy!! I laugh at inappropriate non PC jokes sometimes. I listen to people's gripes and think  F@#$, I've never even THOUGHT of that to be pissed about.

BUT...I do love my family. So much. It never changes. They are awesome. 3 sublime kids who are so switched on and a husband who never judges me. Just thinks I'm great Always and is never disappointed in me.

So maybe....I'm the really good one!!! I'd like to think that, but it's not true. I'm just doing what I can like everyone else. Just that I'm not judging you and your decisions - because I KNOW things happen behind closed doors that humble me daily. So maybe others are just the same :)

Some days it's not just CF I hate - it's everything...and it's everything tied up with CF too. While my gratitude is slipping, I don't like the person that I am - the "why us" person. I feel I HAVE to be thankful. To be so glad that J wasn't born 50 years ago with limited treatment options. We would have lost her back then in the two close calls we had.

Instead I'm just cranky to be doing treatments, physio, nebs, pills, clinic - not celebrating them. I just want to be normal sometimes - not get a 13 yo girl up at 545 everyday so she can do her treatment and meds and make it to school on time. Not be happy to buy a new nebuliser head so the nebs go lightning fast. I hate my negativity and I hate hearing about others sometimes.I hate listening to friend's woes even. Sometimes I just want to scream do you realise how hard life is for us? We can do all this and STILL it might not be enough. Yep, I hate myself for feeling like this.

I look at my beautiful girl. She rarely complains. She laughs about all this crap. She doesn't get hung up on the stupid garbage her friends do. It's like she has a better purpose. She is just a better person. So much better than I'm choosing to be today.

Time to choose differently.

The highest of highs...and the lowest CF low

Today has been one of those ultimate wow days. J attended clinic and after the last two weeks on steroids managed to up her FEV1 by 23....who can do that????? What an awesome girl she is. Works so hard on her physio too. So proud of her. Love her so very much. Things looking up for the first time in forever. Even posted on Facebook about it and so many people shared our joy. So little happiness in that cold CF world. My CF mummas always fight the good fight with a brave face. Even the ones I don't "know", I know their fight. This shitty disease tries to rip everything away. We hold on, won't let it.

Then that horrible news. Another CFer gone. This one's personal. We've "tuned up" with her, I've followed her achievements. Such a fighter. She was awesome. Only 16 when she received a transplant. I've seen so many newspaper articles on her. I've talked to her mum. She's gone. How can you fight SO hard and live less than 2 decades? They fought always. ALWAYS. Just like we do. Those thoughts creep in then. That will be us one day. Almost a given. Crying with another CF mumma - her CFer devastated. Thinking the same thoughts. We will always fight. We need to honour B now...try and live the best life. Keep her OFF that transplant list. Fit, healthy and kicking this shitty disease to the wall.

I won't tell her today. She deserves this special day where she has achieved so much. I cry quietly = like most days. And hold all my girls a little tighter. Yet again.

A New Day

Today could have started off badly...J so upset about English test today. I had to redo her hair 3 times (and she never lets me touch it usually). leaving the house and she realises her wallet is missing (no bus pass, student card etc - and her bus driver is an ogre). C arguing about the brush...being her turn etc etc. Putting on non appropriate school socks to further push the boundaries. G basically being fed up with both of them and telling them what to do etc etc (ahhh not YOUR children sweetie).

We all left the house feeling like crap. Left C at least with a hug and a smile. So grateful for the mums who I unloaded on which I rarely do. They made me laugh about the joys of parenting. Got home, some housework and a cup of coffee later. Read a blog about pretty much stepping up and being a CF parent. Be POSITIVE for your children. If they see CF as a death sentence it will be...and I'll be enabling that.

NO WAY. No more. At least pep, 2 nebs and 2 antis taken before we walked out the door. Maybe the day didn't have a perfect start...or did it? Through all this, the major priority of total medication compliance was achieved. Again. Just like each day. I will never let you down and say "ok not today". You are worth my tears of  frustration. You deserve better than "it'sall too hard". I will always be here for you - even if you wish I'd go away. My 3 girls and my husband - yep...I'm not going anywhere. I love you all too much and that's why through all the frustration, I will always be here.

Maybe it was a good morning after all :)

Life is full of realities

I just feel morbidly sad today. I'm so slow off the mark as most people know...always the last to know everything. I follow a blog of a young lady with CF, who has had a transplant. She was one of the first people I ever read anything about when J was first diagnosed. She used to have a website, but no longer felt the need for it and blogged instead. I followed her lung transplant journey. Her emotions raw, her life real. REAL. No hearts and flowers...she knew herself, her mind and her posts were so honest. She hasn't blogged in ages. I only just discovered she died. Last year. I am assuming from transplant complications. I can't stop crying today. CF is so unjust. I don't feel like being strong today. I don't feel like I'm striving for anything. I feel stupid for not looking further when she stopped blogging months ago. She has really touched my life - her honesty was so refreshing. No platitudes. Just hope. I get so cranky at people who think transplant is a cure all. People go through so much post transplant...I know I hope for one when there ever comes a time for my girl. But today I am just so sad for another CFer who never got the chance to experience even middle age. RIP