Remarkable New York

I chose to stop believing in jinxing your luck, so here goes; This is the longest time that we have not been admitted to the ward in.... I don't know exactly, but a long time! The start to Secondary school has gone really well. So far, he says 'it's OK', which is a big improvement on the last year of Primary. We just have to hope that he is taking his Creon when he should. We have come to the age where we can only sit back and trust that he chooses to do the right thing for his health, in some respects. Big step for us and him. It looks like his last cough swab was lost in the lab, which is annoying, so we're waiting again for lab results to see how his Pseudo infection is. But he feels well, and that is the main thing for now. We so wanted him well for this start at school. 

I have just returned from a fabulous week in the Big Apple. I don't travel often for work, and this was the longest I have ever left the kids for (1 whole week, eek!). But both professionally and personally, I couldn't have asked for a better time. I found New Yorkers to be so kind and friendly, and the art and architecture incredible. Some pictures of lovely NY below, and some very happy girls with their presents. 

A few people have told me recently that I am 'so strong', 'remarkable' or even 'inspiring'. EEK! Little old me! I am blushing just thinking about it. I guess this is something to do with the fundraising, the working, the juggling 3 energetic kids, one of whom has a chronic illness.... But I always find this kind of comment odd, and argue that I'm not. Because I really am not. So here are some reasons why I really am not very remarkable after all (but thank you); 

If it were your child, you would do the same. At least, every friend I have in this world would. You just do. You too would do anything. You just cope in the tough bits (and privately crumble afterwards when you have time to cry). 

I don't iron. At all. I have no explanation for this other than pure laziness and desire to not waste a minute of life. 

If you had met the many remarkable people I know suffering with CF, you too would feel quite unremarkable in comparison. They are the inspiring ones. 

I rarely brush my children's hair. At least until dreadlocks start appearing. I'm the one in the school queue trying to smooth down the frizz with the spit on my hands, wiping the Nutella off their faces and hoping no one is judging me. I feel this is a very non-inspiring parental trait. 

Staying on children's wards, is always VERY HUMBLING. There are always many people much worse off than yourself (and they manage to brush their children's hair and have clean, ironed clothes). 

I usually have some miscellaneous, child related material on my top at work, and only discover it half way through the day, this might be toothpaste, lactulose or snot. Inspiring or (s)not? It once took me a whole day to realise I had some Lego poking out of my bra. 

I am not coping alone. I have the most excellent family and friends, nearby and far away, who help us when we need it. I am not strong, I am very, very fortunate. We didn't choose this life. They are the remarkable ones for choosing to help us. 

I'm just a Mum, to three fabulous children (and a bloody handsome dog). 

I could go on, but it would be neither remarkable nor inspiring, so I'll leave it there. Have a great day x 

PS; welcome to the world little Bodhi! I can't wait to meet you. Auntie Lizzy x 

National Transplant Week.

It's that week again. My endless apologies to my FaceBook friends as I will post links all week boring them all. But the only one I will post here is this, and the link to the register.

I promised to be honest in this blog (I am often too honest, to my detriment, this is either a character flaw or a blessing, depending on the audience). I've been signed up to donate for as long as I can remember, but these are the very real reasons as to why it's so important now to me personally that people to sign up to the organ donation register; 

It's more than likely that my son, my little Isaac, will need a lung (and/or liver) transplant in his lifetime (yep, CF is pretty shitty like that). We just don't know when. I can't tell you how much this scares me. 

1 in 3 people on the waiting list die waiting due to a shortage of donors. When I think about this I feel like I am falling into a black hole of despair. 

Regardless of being on the register, the ultimate decision comes from your next of kin, who, at that tragic moment, can override any decision made by someone in advance. You need to have that conversation with your loved ones. I know, it's not ideal teatime conversation, but nothing about transplantation or dying is ideal. 4 in 10 opportunities for organ transplantation are missed because of this. 

Think; You are more likely to need an organ donation than you are to give one. 

I miss Jayne. I miss her texts, and her blogs that made me laugh so hard I wet myself a little. I wonder if her transplant had come sooner if she would have been strong enough to survive? I miss Eva, and Toria, and Anders, and Emily and so many more. It's all feels so bloody unfair. And this is just within the CF community. 

One person can save up to 8 lives, and change countless others. 

What greater gift is there? 

Please sign up here. 

With love on National Transplant Week x