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 

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