Worry list

He has tonsillitis, again. Fevers persist, and his throat is nasty. Especially annoying at the start of his summer holidays. But I suppose he has had a long stretch of good health, so I shouldn't complain too much. He doesn't. His chest is pretty bad too tonight, despite the three different antibiotics he is on. Extra physio seems to be helping. 

Like all mums, I worry, but because of the things I REALLY worry about, I have learnt to worry a whole lot less about some things that I just can't fit in my head. Here is my list of worries today (I reserve the right to re-order at any given time) - if you would like to purchase any worries, please do contact me, I seem to be over stocked right now.

Things that terrify me:

Losing any of my family and friends

Cepacia

mycobacterium abscessus

Transplant

The words 'sudden decline'

Things that worry me a lot: 

Pseudomonas 

CF related diabetes

Aspergillosis

Not having enough of me left to do my best at work and letting people down

CF liver disease

Not having the time to do all the things that I want to do with the kids

Syria, Gaza, Ukraine.....

Being there for my girls as much as I am there for my boy, when CF takes me away

The teenage years 

Have they cleaned their teeth properly tonight? 

Being the best mum, wife, daughter, friend, sister I can be

Things that I don't have time to worry about (sorry):

Ironing

Being anyone other than who I am (used to worry me in my twenties, couldn't care less now)

Getting the kids to sleep in their own beds, rather than diagonally across ours

Travelling, reading, exploring, seeing as much art in the world as I possibly can (because while I can't do it all now, one day I will catch up, I will immerse myself in all the beautiful things in the world..... you won't see me for years!). 

I feel kinda better now for writing that down. Good night all x 

Evenings in the garden...

Just too nice....

Struggling lately, just a little.

I've been struggling a little lately. The boy has been really well (until waking up with a sore throat and fever today) but has seemed out of sorts these last few weeks. He is pushing for more and more independence, like playing out with friends, but instead of pleading nicely, he is grumpy and rude, and then the next minute cuddly and quiet. Tired and pre-teeny I guess. On top of this our big girl has chicken pox, I have ongoing work stress, end of school-term mayhem, more sad news in the CF community (23 is far too young), staying up in the garden a little too late every night (it's so hot right now) and a toddler who never sleeps in = tired and slightly withered Mum. We wait now, 24-48 hours, and if the sore throat doesn't improve, start him on a back up antibiotic (he already takes two daily, but one more might be the ticket) to try and nip it in the bud before it hits his chest. 

In other happier news, I went to Madrid for a short work trip, and fell in love with the place. I could have spent weeks rather than hours in the Reina Sofia, and need to go back to explore more. This is all made possible by my amazing family - a husband who encourages me to go despite all the hassle of managing without me, and parents who are willing to come round at sparrows fart to get the kids ready for school while he works. I am so lucky. 

Some lovely friends of mine are having problems too, B with her own health, and another two friends with relationship problems. I'm glad that I can be there for them. What goes rounds comes round, and I have great friends, and try to be the best friend I can be too. So a few people struggling, but together we laugh and cry and get through it. I am so lucky. 

Have a great day x 

Live life then give life.... Again.

It's National Transplant week. I have previously posted on this topic before, which you can read Here. I feel both lucky and yet also immensely sad that I have known so many stories of people either waiting for an organ that never came, or receiving that most amazing gift from a generous stranger. Some of those stories have affected me deeply; I miss some of those people very much, while I celebrate the new lives that others have gained.

I just urge everyone to think, you are more likely to need an organ donation, than you are to give one.

Eva lived only 3 years after her lung transplant, too little by far, but I know they were 3 amazing years and she did so much to raise awareness of these important issues. When she knew she was dying, she wrote;

a mark on the world
a difference
some proof that i had been here
something to say that i mattered
that when my body left this world my soul had made its imprint

She did matter. Very much, and she has left her heart shaped imprint on me, and no doubt thousands of others across the world. Organ donation can mean a whole new life, a new chance. Sign the register Here.

Read more about the amazing Eva here. Goodnight all. 

Canoe to the coast? Well, almost.

I am most excited. Our next fundraiser for the Cystic Fibrosis Trust is planned! It's the boys turn (I am still growing my hair out after the last fundraiser) and Isaac and his friend Matthew have decided to canoe from our home village to the coast. Only you can't quite get to the coast (due to muddy banks and strong currents towards the Wash, Kings Lynn) so they are doing the next best thing, going to the last navigable part by boat, Denver sluice. This is still a huge trek; 60k, numerous locks, setting up camp, and paddling over 3 days. They are only nine. How great is that? Their Dad's will be with them (no doubt enjoying the odd pint at pubs along the way). The girls and I will be driving the support vehicle, and I hope we can get other friends and family to either join them on the river, or camping along the way with us, or even cheering them over the finishing line (please do contact me if you'd like to join us). Most importantly, you can sponsor them by clicking HERE. It will be very much appreciated, the boys are very excited about how much they might raise. 

Have a great day x

Pre teen and teens

The teenage years scare me. He already acts pre-teeny. The giveaway is the answering back and the overuse of words like epic and awesome (pronounced awwwwwwsum). He makes me laugh so much, it's hard to get cross with him even when he is being cheeky. I imagine like a lot of kids his age, getting him to clean his teeth, hang up his coat, not have crap all over his bedroom floor and haribo stuck to the car window requires some nagging. But add onto that everything else he has to fit into his day, and it can feel some days like nag is all I do.

And yet, right now, his compliance with meds, nebulisers and physio is good. We have a zero tolerance policy on treatments, so he knows no amount of arguing will change the fact that he has to get on with it in the end. But what will he be like in a few years when you add in more homework, friends calling for him to come out, more medication, more physio, more nebulisers....?

Recently one of his nebulised drugs (a nebuliser is an electronic device that turns a liquid medication into a fine mist, better absorbed in the lungs) has been replaced by a super dooper dry powder inhaler, Colobreathe. We celebrated! Instead of 3 lots of nebs a day (10-20 mins each), for now he has just one, plus these inhalers twice a day. But the inhaler isn't quite as perfect as we had both hoped..... It is FOUL. It's like trying to breathe down salty, burning lumps of sticky powder. He has to extensively rinse and spit out after each breath, meaning we have to do it at the sink, and even then he manages to soak the fruit bowl, the eggs, and anything else in the area. Trying to get him to hold this down for the recommended 10 seconds is next to impossible. He really tries. But the older he gets, I worry he tries a tiny bit less. This morning he took mouse sized puffs, so we had to repeat again and again and again, until done. The old nebuliser might have been quicker (and better tasting). So I get on at him, he gets cross with me, I get on at him some more, and then we both laugh. We always end up laughing because I can never stay cross at him. We laugh about how yuck it is (I try it too, to try and prove I can hold it down longer than him.... I can't). But imagining how this and everything else might be a few years down the line... When he's a grumpy teen and we just have more to do?

Maybe I'll be blessed with a lovely, health conscious, polite, hard working and compliant teenager...... they do exist, right?