Today has broken me.
It started well, usual hospital routine stuff. Seeing Drs and having treatments and medications etc.
Cadel had a dental appointment booked months ago for the hospital here today so we went along. Cadel has issues with anyone touching his mouth etc and won't let us brush his teeth and previous appointments with the Dentist have never gone well. Basically the dentist had to force open his mouth. There were tears and even screaming. It's hard to watch and try and convince him it's all ok.
Then the Dentist said he could have a Star Wars Sticker. Well Cadel couldn't decide on one and wanted 4 so the tears started and we ended up leaving with a yoyo! That wasn't good enough and Cadel wanted to go back and started hitting me and having a complete meltdown. I held it together, just.
When he got back to his room he let me have it. Full complete meltdown, tears, screaming, punching and kicking me. I stepped out to take a breath.
This is only half the day, there is still more treatments and medications to go. The worst is still to come today when he has to have the dressing taken down and the needle in his port-a-cath changed. That is always a trauma for him.
It never ever gets easier to see your child in pain or just over it! He is coming to an age where he realises, this is what will be the rest of his life. Daily treatments and medications.
I know we try and stay positive and show positive things but days like today are super tough and happen a lot but we don't let you know the nitty gritty daily struggles. But maybe we should, so you know that if we are having a bad day and seem out of sorts this may be why we seem a bit off but still have a smile on our face, trying to hold it all together.
***kept this to post later***
** Please Note**
I have put a lot of thought and consideration into my words for this blog.
I pour out my heart and soul for you to read, learn and share about the ongoings in my families life.
I love that you like to share my words and blog so all I ask in return is that if you use my words, parts of my blog or entire posts to share via social media or anywhere that you give me a shout out and acknowledge that you are using MY words and maybe even include a link to the blog.
Thank you all for taking the time to read, learn and share my blog I really appreciate the compliments too and love knowing that I am reaching people near and far. I hope that you continue to enjoy my blog.
Friday, 12 May 2017
Tuesday, 2 February 2016
Another big milestone.
I know I use that word a lot but I'm not sure how else to say it.
Milestone is defined as :
1. A stone marker set up on a roadside to indicate the distance in miles from a given point.
2. An important event, as in a child's development, the history of a nation, or the advancement of knowledge in a field; a turning point.
I could say that both definitions fit with Cadel's journey. I feel like sometimes this CF road we have been put onto has those markers and it feels great to be getting to them and passing them but it's also many other emotions.
Cadel started school last week. He started school. Wow! Just letting that sink in is crazy and stirs up so much emotion. I flash forward to him being able to read, do maths do all the projects and class talks like his brother and sister have. I also flash even more into the future to him graduating, going to high school and then if he chooses University.
I also flash back though. I flash back to sitting in his hospital room, I can see it all clearly. We had been told that the team that look after Cadel were having a meeting to discuss Cadel's treatment going forward to make sure they were all on the same page. It seemed to take forever for them to come see us and tell us what they decided. Little did we know.
In these flash backs it's all clear as day. I see all the glass windows, watching people walk pass and someone closing the glass door, the doors were never shut in HDU, ( the High Dependency Unit) I see Cadel's Dr sitting across from me, her face looks stressed and her eyes look red like she had been crying. I see the ICU Dr sitting beside her in his scrubs. We have never met before and I remember looking at the embroidered name on his shirt and wondering why he was there, sitting there in silence with a look on his face that can only be described as worried, concerned and nervous all rolled into one. I can see Cadel and his pale little frame laying on the bed with the noise of the high flow oxygen as it forces high rates of oxygen into his sick, diseased and tired lungs. I can see Scott sitting beside me on the makeshift bed. He grabs my hand as those terrible horrible words are tumbling off the Drs lips. I remember someone passing me a box of tissues and I remember going numb after the word palliative care is spat out. I say spat out but I know it was said with such care and compassion but it always seemed a dirty word as that word seemed to change everything in our world.
After the Drs leave and Scott and I are free to discuss the bad words that have just been said I remember clearly saying. "This can't be happening, he'll never fall in love, he'll never have a first kiss, he'll never even get to go to school."
It doesn't make sense, the order in which I said things but sentences rarely do when you've just been told your son only has months left to live.
Cadel has gotten to go to school. Cadel has reached major milestone moments and that is massive, huge, enormous and amazing. But and its a big BUT it could have been a very different day last week. We could have been grieving our amazing little man and not celebrating his first day school. We could have been sitting at home upset and thinking about what could have been instead of going out together as a couple and celebrating that we have three, count them, 1,2,3 munchkins in school! We are positive and remain positive about Cadel's future, we believe that has helped us get to this point with his health but to be honest it is never far from our minds that things could have been the complete opposite. We don't like to burden our friends and family with these thoughts but we do talk about it to each other a lot. If we didn't it would bottle up and possibly explode.
We are beyond happy with all the steps that have been taken to help our little guy settle into school. We know that the school and staff have his best interests at heart and listen to this crazy control freak of a Mumma. I see already that they have taken their own steps towards making sure Cadel's health is a priority. Many more milestones will be met at the school and we will celebrate every single one, the small and the big. That's how we roll.
We are beyond excited that we get to share our little man and he can make more people fall in love with his big blue eyes and beautiful personality.
Sorry it's a long one and a little late and a long time between blogs but sometimes when things are good I don't need the therapy of writing. I will try and blog some more of the good to share with you all.
Thanks for reading.
Wednesday, 7 October 2015
I'm using this as a place to vent to get out the mess in my head. I know most of my blogs are usually this but this afternoon I just need to untangle this mess so I can move on.
As we drive home from dropping off your sister to her dance class I glance back to see your eyes close. It's been a long day back at Kindy, you've had two weeks off. I think, that's ok I'm let him catch a few z's while we do the 15 minute drive back home. As we pull into the garage I prepare myself to wake you. I don't want to be the bad guy but I have to.
I have to wake you my sleepy child, I lift you out of the car and your eyes open briefly. I explain that you need to have a shower and then do your Physio. You just close your eyes again. I try to stand you up but your knees buckle. I want to let you sleep my munchkin. I don't want to be the bad guy. I carry you to the bathroom and start to strip you off. This is when you really get upset and start fighting it. Screaming and crying I notice that you still have a bandaid on you from when your port was accessed last week. You have a big dislike about removing the bandaids and I take this opportunity while you are angry at me anyway to take it off. It comes off with ease as it was well and truly ready but it angers you even more. You become louder and fight stronger against having a shower. I end up winning and get you in and washed and leave you to wash the suds off as I grab your pyjamas and prepare the nebuliser for your Physio. I return to you still standing, still sobbing and covered in suds. I don't want to be the bad guy but I put you under the water to wash you off. We wrestle as I dry you off and get you dressed. Not an easy task when you are kicking, screaming and trying to take off the clothing I have put on. I don't want to be the bad guy. I take you over to do the Physio session and your fight has grown even stronger. You push off the nebuliser and close your mouth tight not letting me get the mouthpiece in. I plead with you to open your mouth, that it will easier on both of us. I don't want to be the bad guy but I grab the mask and attach it and I force the machine onto your face. I hate this just as much as you. I don't want to do it but it needs to be done. Eventually you surrender and stop fighting so hard. The nebuliser beeps. It's finished and we just hug in silence. We both just hold each other silently apologising for what just happened. I don't want to be the bad guy! We finish the session and you are happy and smiling again but it has left its mark on me.
CF and its crappy shitty ways have left its scars on me once again emotionally. I don't want to be the bad guy when CF is. The invisibility of this body and soul destroying disease affects us all. Not only does it scar my precious boy and his lungs but it destroys me mentally. You may not see it but it takes a little piece everytime if I let it. I hide it well too! I hide it behind my smile as I face the day and try not to show my scars. I hide it as I don't want to bother you with my daily troubles. I hide it from my little boy as he needs to see the smile not the scars it leaves on me. I hide it from myself too keep the demons at bay. I am and I will take those pieces back from you CF. I will fight you too! Screw you CF you've taken enough!
Thanks for reading and letting me vent.
Saturday, 26 September 2015
There is nothing like the threat of losing something you love to make you get out there and enjoy life a little bit more.
When we were sat down and given "the chat" about Cadel it devastated our worlds. I thought life as we knew it was over. In a way I was right. It changed how we looked at our lives and how we spent our days.
We were always pretty positive people and enjoyed our family time but this multiplied the positivity and family time in a way we could have never imagined, and all in a time when it would have been quite easy to curl up into a ball and hide away from the world. We made a choice to get out there and to explore it.
All of these choices have led us to enjoy every moment we spend together. Whether it be sitting on the couch watching a movie together, just sitting outside in the backyard, travelling around or climbing a mountain as a family.
These September school holidays are a time when our family usually escapes the everyday world and goes on a holiday. This year we are doing it a little bit different. We have decided to have a staycation. What is a staycation you ask?
This is when we stay home but we do day trips to our surrounding areas and play tourist. Doing things we have always wanted to do and explore everything that our local world has to offer. I find we take these places and things for granted. When you travel interstate etc you tend to make sure you take advantage of such touristy things but you forget how much fun you can have just on your doorstop.
Our Staycation has been planned for months as we constantly added more things to the list. We have managed to cross off quite a few already in the first and are looking forward to the second week. We have climbed mountains, seen amazing flower displays and gardens, gone on secret missions, had dinner at sunset at the beach with our favourite takeaway, gone to the Zoo and strolled through markets. Most importantly though we have laughed, giggled, talked and shared so much. We have enjoyed each other's company (so far) and there has been minimal niggling fights between the kids. (Touch wood)
Of course all of this could be interrupted at any moment. All of our best laid plans can come unravelled at the sound of a moist cough. CF is always there hovering over our heads and it sometimes interrupts the day with having to pause to do treatments and medications or even to make a choice about what we do on that day when it is really crowded or the environment or situation is just not safe for Cadel.
We are actually living with that threat to these holidays at the moment. Cadel's cough changed mid week and we made the call to duck down to the hospital to have him reviewed by his CF Dr. The Dr wasn't overally happy with his health at the moment so we have changed a few medications and added in some more treatments and we need to see the Dr again early next week with the thought of a possible immediate admission.
What does that mean for our staycation, well it means that we readjust, for the moment we fit in those extra medications and treatments into our planned days. We try and do as much as we can before that next review but be wary of Cadel and his health and energy levels. If he does get admitted we look at our list of planned day trips and see what we can still do.
It's all how you look at life. Cadel's condition made our family look at life in a positive way. It made us treasure and cherish every moment and not waste a second. Yes his condition changed our lives but I think for the better. Sometimes we reflect on the day's activities and think back to a few years ago and think we would have never gone out and done what we did that day.
I hope that the kids continue to live their lives this way and get out and explore the world and not sit by and let it all just float past. I hope that they remember these simple days and adventures in a fond way and that they do the same as they grow older.
I want them to get out there and be a participant in life and not a spectator!
Tuesday, 28 April 2015
I stood back out of sight, hidden behind the glass. I couldn't hear what was going on I just watched like an audience member of a silent movie. I watched as you stood there watching the kids play. I wondered what was going through your head. I hoped that you had the confidence to join in. I hoped that you didn't feel left out. I hoped that you didn't feel different. I hoped that you felt secure. I willed myself to move. I could stand here all day watching and hoping but that won't help you. As I turned and walked out I hoped that I am doing the right thing. That you fit in, that you make friends, that you let others in and they find out how wonderful you are and how much you can contribute to this world. I hoped that they realise how much you will make them a better person just by knowing you. I know that is how I feel. I hope that you can teach them all a little something. Even if it is to get up and fight, especially when life kicks you to the ground more times then you count up to!
All I can do is hope that I have done enough to help prepare you for these big moments that will soon pass and be small memories.
This morning I dropped Cadel off to Kindy as I do most Tuesday's and Wednesday's but today felt different. I am not sure why but it did. This week the signs went up at school announcing that they are taking enrolments for next year. This scared me and gave me goosebumps. I am not entirely sure that he is ready for school or that I am ready for him to go to school. He is my baby. He will be my last to have that first day at school but then throw in all the challenges that Cadel and us as a family have faced and whoa I want to chuck the brakes on. I know school next year is a a long time away and he will learn new things at Kindy, his speech will improve, it already is, he will learn to use the toilet independently and we are aiming to have him swallowing his enzymes by school starting too. It's a lot of pressure for the little guy and for me. I feel very much under pressure to have it all done and sorted so that Cadel can slot into school like every other average 4/5 year old. I know he is far from the average 4/5 year old but I want him to have the average experience at school and not be left behind.
This morning when I dropped off Cadel he wasn't that keen on going, admissions, illness and other family circumstances have interrupted his kindy routine so we are slowly get back into it. One of the boys came running over and said "Hello Cadel" "Do you want to play ninjas with us?" It warmed my heart because it meant that the other kids were including him. They weren't worried that he doesn't speak much, or that he still wears nappies, that he needs medicines when eating or that he has a funny button on his tummy. They wanted him to play with them. Such a relief for this worrying Mumma. Relief and confirmation that I am doing the right thing. All my hopes are being answered. I will never stop hoping or worrying but we are moving forward. Sometimes a little faster then I would like but we are moving forward which is big and something to be celebrated and I am not going to let him take a step back.
Take big steps my lil' man and you will change the world with those steps everytime. I will be here as always waiting to catch you if you fall and give you a hand to stand back up again.
Saturday, 11 April 2015
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.
Monday, 3 November 2014
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.