Letter M ( A to Z of CF 2014)

M is for Mum! 

I asked Lorelei what she thought letter M stood for in relation to CF and she said after some consideration 'Mum'.

I have to agree I thought the same thing. I am a registered carer for Cadel but I am his mum first and foremost, as I am also Mum to Lorelei and Xavier. 

There are some days that I wish I was only a Mum and not a carer, having to do treatments or medications or medical procedures in my own home, like reinserting feeding tubes, but I also need to be a carer to make sure I continue being Cadel's Mum. 

I have to remind my self though that I am a Mum and I'm just doing whatever I can for my child like any other caring Mum would do. 

I am a Mum and I love being a Mum. Some of the last words my grandmother said to me was that she always knew I would be a great Mum and that it was who I was supposed to be. Those words always meant so much that she can see what I feel and that I had made her proud. 

K

Letter L ( A to Z of CF 2014)

L is for laughter. The saying laughter is the best medicine rings true with our family. 

There are many times when having a giggle or laugh has completely turned a situation at the hospital around. 

We try and surround ourselves with very positive people, who share our sense of humour so that we can all laugh and have a great time. 

Apart from hearing the word Mum ( well sometimes it gets annoying, let's be honest) from my kids, especially when Cadel calls me Mumma or Ma, their laughter is the best sound in the world. 

I love hearing my kids laugh and when they are all laughing together it's even better. 

Who can be mad, sad, angry, upset, down, or any thing else then happy when you hear the giggle and gaggle of children. It nourishes the soul and I believe that means a happy and healthier life. Laughter may not cure any disease but it makes things bearable to laugh at your situation sometimes. 

K

Letter K ( A to Z of CF 2014)

K is for keeping it real. This blog is a great place for me to tell it like it is. Sometimes it's easy to put up a front and pretend that everything is ok and behind close doors crumble into a mess. This blog space allows you, friends, family or complete strangers in on our journey in life and with CF. 

I try to be really honest in this space and I think that has helped me deal with a lot of things easier as I can write down exactly how I'm feeling instead of just letting it fester. It also may help others going through the same thing to now that what they are feeling is ok and someone else feels the same. 

So thanks for letting me vent sometimes and for putting up with me spilling out my feelings and I hope that it benefits, you, me and my family. 

K

Letter J ( A to Z of CF 2014)

J is for just breathe, two little words with such big meanings! 

These words are something we will our CF'ers to do and hope that they do it with ease. It's so simple to say but something that they struggle with daily. 

It's also something that many take for granted, me included. To be able to take a big deep breath and suck in all that air and fill my lungs is what Cadel strives for daily. To experience how CFers fight for breath it is suggested to pinch your nose closed and breath through a straw for 60 seconds. It's tough but at least you can stop doing that and just breath "normally". 

We are so grateful that Cadel's condition has improved in the last 12 months. His breathing rate and work of breathing has decreased and he has been oxygen free for a long time now. It's testament to his strength of character, his will to never give up and of course to the fantastic CF team that always look for new treatment options for Cadel. 

Here's to plenty more good years, great health and being able to just breathe. 

K

Letter I ( A to Z of CF 2014)

I is for isolation. 

CF patients cannot get too close to each other for fear of cross infection of the nasty bugs that they can harbouring in their lungs. 

In this way CF is very isolating for both family members and the patient. You can often feel alone, and not know where to turn. 

We are very lucky in that through our clinic and some mutual friends we have a great network and support base of other parents with children with CF. While we mostly connect via Facebook, we do also organise catch ups, we have all grown close friends very quickly as we share a common fight against CF. There is no greater bond then sharing a common enemy. 

There are so many avenues, thanks to technology,  that CF patients and family members can go to for advice, help and above all support. 

We are forever grateful that we found this support and hope that others can have the same fortunes. 

K

Letter H ( A to Z of CF 2014)

H is for heat. 

Especially over the last couple of days the heat as played a big part in Cadel's world. We have had very high temperatures and we need to make sure that Cadel remains cool and replace the salt that he has lost through sweating. 

We give Cadel 1 full teaspoon of salt a day with his medications as well as adding extra salt to his foods he eats. 

There are many ways we escape the heat and they include,

* air conditioning - we are lucky that the Australian government helps subsidise our heating/cooling electricity bill because Cadel's condition doesn't allow his body to regulate his temperature. 

* swimming in the pool, what better way to cool off by swimming in the pool and getting some Physio in too, oh and have some fun! 

* taking time to rest and have a break. We are always getting Cadel to just stop take a breather and relax before he heads out again to play and play and play and play....

* drinking plenty of water. We have a constant supply of cold water drink bottles in the fridge that Cadel can help himself to. He also has a water bottle in bed every night. He drinks a lot of water and seems to like it cold, look out if it's not is all I can say! 

Although the heat can play havoc with Cadel and his CF I think I would rather the heat then the nasty bugs that hang around in the cold and Winter! 

K

Letter G (A to Z of CF 2014)

G is for greatness. 

I truly believe that Cadel is destined for greatness. He has a strength of character that I have never seen before in someone so young. I think this character will grow and be even bigger and stronger as he grows up. 

He is not his diagnosis and we will never let that be the case. We encourage him, just as we do our other children to chase their dreams and to never give up. 

Cadel already has the attitude in life that nothing will hold him back and I admire that. To look into his eyes you see an old soul who is wise beyond his years and is always thinking about what his new adventure will be. 

We will encourage Cadel to chase the big dreams, whatever they may be, he will be great, good, grand and gorgeous at anything he does. 

Chase the big ones my Boo and never ever give up! 

K