The therapy of blogging.

Hello Strangers! 

Well I was just reminded through the memories notifications ( I love this feature as I am a sentimentalist and love looking back in time!)  on Facebook that on this day 2 years ago I started my little blog. And I'm terribly sorry but I think it's been almost 6 months since I have written and shared on the blog. To my faithful followers for that I am so sorry. I started writing about our little bubble of fun in a more turbulent time of our lives. We had been told that we had only had months left with our two year old son and writing became very therapeutic for me. I could write down what I sometimes couldn't say out loud verbally. It helped immensely and many people far and wide around the world read my humble little words and got a glimpse into our little world. It has helped to spread awareness for Cystic Fibrosis too and all that our lil man battles with every day. I was always amazed to see the stats of where my readers were from and truly excited that it was reaching so many people. 

So big apologies for leaving you all hanging for so long but I have to say that things have been going well. Hence my need for less therapy in the way of my writing. Although as I write this I am sitting beside Cadel in his hospital bed he has been relatively well. We were told by one of his Drs that they hadn't expected him to make it to his 3rd Birthday, here he is almost 4 1/2, going to Kindy and we are soon to start filling out forms to start school! He is in for a two week round of IV antibiotics and we are nearing the end. He is doing well and copes with everything that is thrown his way. These admissions are few and far between these days and are just blips on the radar. I feel it's harder to adjust for us now as we aren't as used to an admission as we used to be! Strange isn't it. How routine something can become and how strange it feels when it occurs less often. 

Anywho I already have a few blog ideas in my scrambled brain so I am committing to sharing and inviting you all into our world once again and I hope that you continue to enjoy your view into our Life in a Bubble of Fun. 

K

Crazy days

Well hello there readers. Sorry it's been so long between blogs but what can I say but we have been busy loving life. 

Busy, yes very busy. I'm often told how organised I am, and asked how do I do what I do everyday, well I'm going to give you a little insight into my day. A Monday, not typically a busy day in my life but it may read very hectic and crazy to you. 

Well it started just after midnight when Cadel was screaming out. He wanted me to sleep in his bed with him as he needed some comfort. So I obliged. Luckily the munchkin has a queen size bed for such occurrences. I tossed and turned most of the rest of the night though, thinking of the busy week ahead. Luckily I had taken my phone and charger into his room as the alarm sounded at 4.50am. The alarm read... 'Run your cares away' I turned off the alarm, rolled over and lifted the blind to see gloomy grey skies. I laid there for a while contemplating whether to run or not and in the end snuck out of his bed and was dressed and out the door just after 5am. I had a tough session of interval training in mind and I did it, cut it a little shorter then I had hoped as time was running out but I knocked up 8.5km on the good old Strava app. I walked into the house around 6am and everyone else but Cadel was wide awake. I cooled down for all of about 5 mins then grabbed a snoozy Cadel to do his chest Physio session. 30mins of pounding on his chest to move that sticky mucous. 30mins to sit and not be able to do anything else but percuss his chest and catch up on Facebook. Yes multitasking at it's finest in 2014. He slept through the session until the last few minutes and was ready for the day as I finished up. I jumped up, finished getting the big kids school lunches ready, fruit snack, check, drink bottle, check. Then thankfully wonderful hubby had boiled an egg for me and cooked some toast. But that had to wait. While I waited for the kettle to boil to make my favourite cup of tea, peppermint, I made up Cadel's medicines for the day. About 6 different medications, today was an easy one. Ok the jugs boiled, I grab some clothes for Cadel ready for hubby to dress him but not before he also helps me out by doing Cadel's puffer and nebuliser. So so thankful his job is close to home and he can help out of a morning! Finally I sit down to a warm cup of tea and cold toast. Scoff that down Kristy, I say in my head, time is ticking and I still had to do my daughters hair. Luckily today is a dance day after school. We have the donut dancer bun down to a fine art. Spray with loads of hair spray and it saves time this afternoon. Ok kids are all dressed, say goodbye to Hubby, now I need to change my smelly running shirt before I walk the kids to school. So I set the kids up with some cartoons to keep them happy while I finish up. Ok time to go. Better pack the umbrellas the sky is still gloomy out there. Oh and don't forget the drink bottles, I have plans to walk a rather hilly another, oh 7 or so kilometres. We get to school with time to spare and Cadel and I after saying our goodbyes set off on our walk. He doesn't seem too impressed to be trapped in the pram so I make a game out of looking for different coloured cars and he seems happy. Home again, it's just after 10am and I've racked up over 16km this morning. Whoa. I feel sooo energised. Quick shower and change into swimmers and make sure the bags all packed to head off to a hydrotherapy session for Cadel. Cadel loves his time in the pool. He is starting to share the toys more now with the other kids and today he decides he is confident enough to dive ( from sitting) into the pool today. Yay!!! An hour later and it's 12pm, we both change and head to the supermarket nearby to restock the depleted fridge at home. The 40min drive home is broken up by talking to Hubby in his lunch break about how swimming went. We are almost home and I remember I need to pick up some scripts for Cadel. We love our local chemist. He knows us very well and greets us with a big smile. He helps us out to the car with the boxes of medications and we head home. Just enough time now at 1.30pm to change a nappy, and grab some lunch. Luckily we had some leftovers. Leftovers are the life savers of a busy mum!!! I hang out some washing and quickly chuck on a brush of make up to head out the door at 2.30pm to ensure a park at school. ( don't get me started on that crazy car park!!!) I use this time to have some adult talk with friends at the school but Cadel has other ideas and has a tantrum for the full 30min wait about not being allowed on the playground equipment. ( silly rules from the school!) Finally the bell goes and the madness begins as we head off to dancing. I send in my daughter to dancing and then spend the next 30 mins in the car with the boys being the referee between their niggles. We sit outside to prevent Cadel from catching anything going around as the studio can be very crowded on Mondays. We drive into the garage at home just before 4.30 and I race inside to put the roast lamb on for dinner. It cooks perfectly and the kids are showered and eating dinner at 6pm. Phew. That's always my plan but rarely does it come off. They also get homework done! Yay! I clean up after dinner, pack the school lunch boxes for tomorrow and put away all of Cadel's medications I picked up today. Kiss the kids goodnight and tuck them in.  I put two loads of washing on, pack away 3 kids washing that has been overflowing in the baskets for over a week and I sit and chill out with hubby to watch our favourite show. I'm lucky, tonight it is hubby's turn to do medications and overnight feed formula mixing. We take turns every night so that it doesn't get too much for each of us. Just to keep it interesting Cadel starts having a little coughing fit. It is dry and productive, which means he is coughing up the mucous. Just the stress we need before he has an anaesthetic and procedure done this week. It passes and he goes back to sleep. Finally I carry Cadel off into bed and check my phone. I have messages on Facebook, Wait what!!! Apparently my sister was on Gold Coast Cops tonight. Hubby and I go searching for the show online as we missed it on TV. We find it and give a huge sigh of relief to the fact that she was the girl helping the intoxicated and vomitting nightclub goer! Ok brain, time to switch off now and sleep after a nice shower. Nope brain has other ideas. And this is where I am at 11.30pm at night blogging all this down so that my brain feels clear and I can sleep. Hope it works. 

I have to get up and do it all again tomorrow, do I workout in the morning or afternoon, don't forget about Cadel's Speechy appointment and then straight to another hydrotherapy session.  

Oh well Kristy, you just have to get up and at em to fight on another day with a smile on my face because all of this means we have our little boy here with us. 

K 

I HATE YOU SO MUCH RIGHT NOW!

Sorry about my shouty capitals and just a warning there is a massive rant ahead! I know that everyone has their own struggles and battles but this is mine and my families. I wrote this at the start of an admission and just kept adding things in. It helps for me to put it out to the universe and not let it fester in my mind. 

I hate hospital admissions.

I hate holding you down while oxygen is taped to your face.

I hate trying to explain to you why you need the oxygen.

I hate being the one to hold you down while a 3/4 inch needle is pushed into your chest to access your port.

I hate having to wipe away your tears.

I hate having to again hold you down while they try and take blood from a finger prick unsuccessfully, not once but twice.

I hate watching the pity in people's eyes as they wheel you in the bed around to have an X-ray.

I hate trying to keep you happy when you are just over the hospital on day one.

I hate feeling useless.

I hate that we are away from your Dad, brother and sister. 

I hate waking you, my sleepy bub to have X-rays, blood tests, for doctors to listen to your chest.

I hate having to rip off adhesive from your groin, just so that the nurses can test your wee, caught in a bag stuck to you all day waiting....waiting....waiting...for that little wee sample, twice a week during admissions. 

I hate sitting and watching a monitor for those numbers to be good and the alarms not to sound if your oxygen levels dip. 

I hate that sometimes the Drs and Nurses won't listen to me and my mother's intuition.  

I hate that you yell at me, asking for it all to stop and I can't make it all stop. 

I hate having to distract you while blood is once again squeezed from your finger. 8 times in 3 days is just too much!!!

I hate hearing the pained and frightened cry when they take a swab sample with a huge cotton bud up your nose. 

I hate trying to remove the stickers left from the ECG machine, they are super sticky. 

I hate missing out on my Mother's Day at home and not doing what we actually had planned for the day. 

I hate that I miss your brother's class performance on assembly. 

I hate that your brother and sister need to speak to school guidance counsellors because they are so anxious about admissions. 

I hate that I need to ask for a social worker to help me find the right words to help your brother and sister deal with your multiple admissions and the big conversation of what having CF means for your future. 

I hate that it takes 4, yes 4 nurses and myself to hold you down as they again access your port with a 3/4 inch needle! It sucks that have to do this weekly when you are unwell!!!

I hate watching your little precious body fight.

I HATE CYSTIC FIBROSIS!!!!!!!!

K

Taking a Calculated Risk!

Going to the movies as a family hardly seems like a risk but here is why we think it is for our family. 

As most of you know, Cadel has a very low immune system and is prone to picking up bugs quite easily so sitting in an air conditioned, crowded room in the school holidays for up to two hours at a time is a very stressful time and is what we call a calculated risk. 

We want the kids to have a "normal" as can be life and that means doing what every family loves to do and go to the movies. We tend to do it around school holidays too as that's when the best movies are out, of course! 

We plan it out though and think about how it all is going to work. We tend to go to movies that have been released for a while already so that the cinema isn't packed out, we also choose the sessions more carefully, mid afternoon seems to be quiet, it's too late after lunch and not close enough for dinner. We also get there early and pick the seats that no one wants. We usually sit in the back row of the front section. No one usually wants to sit there but there is no problem with these seats and their view. 

By doing all these things we are able to try and control the environment somewhat as we aren't in an overcrowded room, sitting around people in case they are sick and best of all we get a section of seats to ourselves! 

We don't go to the movies often but when we do these are the things that we need to put into place so that it remains being a positive experience for us all. Small tiny, little things, big plans but treasured memories of laughing, crying and chilling out together as a family. 

K

Letter Z ( A to Z of CF 2014)

Well here we are at the end of the alphabet and at the end of the A to Z of CF for 2014. 

Z is for in the zone. This is something that Cadel does when he is having treatments or tests done that he doesn't like and unfortunately that happens a lot. 

With his port-a-cath needing to be needled every 6-8 weeks he has developed a strategy where he will close his eyes and go into 'the zone'. Don't get me wrong he still cries and kicks up a fuss but he kind of 'zones out' and who can blame him. 

I have been known to go into a zone too. It happens when I have to be a carer to Cadel and I need to take off my Mum hat. This happens when I need to hold him down during needling of his port-a-cath, re-inserting an NG tube or Mic-key button. 

I do this as does Cadel to cope with the situation that is happening around me. As  a Mum you don't want to hurt or see your child in distress but when I'm holding him down to do these things I know that they need to be done and that it's in his best interest. We all have different ways of coping and going into 'the zone' seems to Cadel and my way of coping. 

I hope that you have enjoyed, learnt and shared our journey with the A to Z of CF. Thanks for reading.....

K

Letter Y ( A to Z of CF 2014)

Yes! 

Three little letters that are hard to say sometimes. It's hard to ask for help and sometimes even harder to say yes to help. 

It's something I'm trying to work on. It's easy to just say, "no it's ok" and then struggle on but I am working on putting myself out there and asking for that hand when I need it most. 

There are times especially when Cadel is unwell or admitted to hospital that we trudge on but need that little bit of extra help or support whether it's someone to just come and visit us or take the kids so they have a break and we do too. It's the simple little things like this that mean the most. 

We have wonderful friends who won't take no for an answer and help us out, they can see the signs, they know how to help when we need it the most and we are very privileged and honoured to call them our friends. 

K

Letter X (A to Z of CF 2014)

X-rays. 

Again something else that I have lost count of how many Cadel has had. The Drs are always conscious of excess exposure with X-rays and will only do them as needed. 

I am with Cadel during almost all of his X-rays and he knows the routine, pointing out the protective gown for me to wear and sitting in the chair like a pro. Just another way in which out lil' champ just gets on with what life has thrown at him. We can all learn a lot from him I think. 

K