Not sure what to title this one

 It’s never far my mind, it’s always there, it may not show but the facts never leave. I know I have a chronically ill child, who now is facing cancer and I know we were told it’s treatable and curable but it’s still cancer and we’ve seen time and time again our poor kid be thrown the worst things health wise. My actions show me trudging on, soldering on, but if you stop and looked you would see I’m really not, if you just stopped and looked me dead in the eyes and asked am I ok and really meant it, I would crumble. 

I know we get called strong and resilient and get told “I just don’t know how you do it”. To be honest sometimes I don’t think I do do it. Somedays are an absolute struggle and I feel awful and so deeply dark inside and I have to just push on and make sure meds are taken, treatments done, appointments attended, go to work, make sure the washings done and we have food in the house.  We get told by social workers and psychologists that we “cope too well”, that’s what the outside world sees and why we don’t get offered help. I call BULLSHIT! What the FUCK does that mean? I don’t understand, am I supposed to not function, not push through and do the very best for my child, for my family, for me? I’ve been vulnerable, I’ve asked for help and every time, EVERY DAMN TIME we get nothing. Limited help even from the closest people we know because they don’t know what to do! You know why though because they don’t ask questions, they don’t want to know because it’s hard, it’s sad and it’s soul destroying so they protect themselves. I don’t get that choice. I have to face it. I can’t hide neither can my kid! I have to sit in tiny rooms with Doctors with serious and glum faces while they deliver diagnosis' or test results. I have to try and remember what they just said and hold it together as I have to walk back in and see my sweet little man’s face. 

I ran into someone today, who I haven’t seen in I think 15+ years. We’ve stayed in contact on social media and watched our kids grow up in pictures shared on screens. That’s where I watched her daughter be diagnosed with cancer, go through treatment, get better, get sick again and eventually succumb to cancer. I have watched over the past years on a screen my friend celebrate milestones for her daughter that she never reached. I found her daughter’s name on the special tree in the ICU garden at QCH, not many people see this space. The day after Cadel’s PTLD diagnosis was her daughter’s 2 year anniversary of her passing. When Cadel got diagnosed she reached out as she had some advice and support. We have messaged briefly but today I saw her. We were at Costco. I saw her first and to be honest I pretended I didn’t and kept moving. I was afraid. I was afraid I wouldn’t be able to hold it together. She caught up to me and I could feel her looking at me. I looked up, we made eye contact and I saw her eyes. I saw her broken sad eyes too. I held it together. I did because Cadel was there too. We chatted and she gave some advice to Cadel and me. We embraced and it was a tough interaction as I found myself trying to make Cadel’s battle less, smaller as she had lost her child. Why I did that I’ll never know, if anything she understands. I just couldn’t get past the pity eyes from her, she has been through absolute hell and she still had pity eyes for us. 

I don’t know if I said the right things or acted the right way but it’s done. I can’t have a do over. That hug felt different though. It was a “I know, I know” hug and I can’t explain that. It was from one sad and broken mum to another and not one anyone watching would understand. In that moment our challenges with children were acknowledged like so many tend to ignore. 

I hope my friend felt that too and she knows I’m never not thinking of her and her loss too. 

Not sure this one makes sense as I just needed to empty my thoughts. 

Thanks for reading 

K 🚂 

“Too hard”

Greetings readers.  Wow. It’s been a hot minute and a metric f@$k ton has happened since I wrote anything here 8 years ago!  

Cadel is in high school, he is officially a teenager, he is coming up to 4 years post lung 🫁 transplant and 9 months post liver transplant. Yup you read that right two separate transplants and now battling post transplant lymphoproliferative disorder (PTLD) or lymphoma. Yup we are in the oncology world now with tumours, immunotherapy and chemotherapy! 

Yeah the world feels really freaking cruel right now and I need somewhere to vent sooo hiiiiii 👋🏻 

There is not much else to say right now other than that we are riding the waves of the new battle as best we can and it’s been one freaking bumpy ride to say the least.  

We have family close in our inner circle for support but our lives became “too hard” for all the other so called friends we had around us when a little pandemic hit in 2020. Let me unpack this for a minute. 

Bye trash  👋🏻 🗑️.  I always knew it and stupidly I ignored it but you were all such toxic people anyway. They know I know all their little gossip about each other so made me the villain so I would be on the outer and no one would talk to me. Oh the secrets I could tell about how some of you spoke about each other but act so nice in their face. Ha!I no longer sit at tables where I might be the topic of conversation when I get up. I saw it happen to you all time and time again, so of course I knew it would happen to me. It’s funny how you ignore so much when you are just wanting to be supported.  

I tried, I really did but I had to protect my family and my peace so I pulled back. It broke me, it truly did and I was in a very dark place with loved ones concerned for me. I’m good now and processed it all, I see the cockroaches scatter at the local shops when they see us now, it makes me laugh. I just look straight through them, like strangers. They must be so proud of how they acted that they scamper away and bad mouth us to anyone that will listen. 

Ok ok, it seems I did have something to say. Now that rant is done, hopefully I can use this space to vent some frustration to help me navigate all of this. I’m not sure anyone is reading but if you are thank you and please value your worth in your self and don’t put it into others. Trust me I learnt the hard way. Oh and if you are part of the trash so called friends and this somehow found you, 🖕🏻you can report back to the others,  I know you will, you can’t help yourself, have a gossip and feel good as you laugh and make fun of someone’s pain 🖕🏻. Just as an FYI to pass on though I’ve become a much better and truer version of myself, and I think the trash took itself out for me! 

K🌻 

Trying to put the pieces back together

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.

K
***kept this to post later***
From February

Another marker on this road passed.

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. 

K

Untangling the mess

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. 

K 

Live in the moment.

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! 

❤️ K

Yes! No! Yes! No! Yes!

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. 

K