Tuesday, 27 March 2012

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 :)

Sunday, 11 March 2012

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