Rudely Interrupted!

Scott and I since Cadel's diagnosis have always said that CF would have to fit into our lives and as much as we practically can we don't let it interfere with our day to day living. 

The past week we have had two rude interruptions from CF and it all became too much. 

I had organised to treat some lovely friends to a special catered for high tea. It was a way to say thank you from Scott and I to friends who are forever helping us out especially when Cadel is admitted.  I organised it all from the hospital via emails and we sorted out a date that suited everyone ( not always an easy task). I kept the fact that it was catered for and a high tea a secret, well that was until CF interrupted! 

Two of the three friends kids had been sick so being good friends (one having a CF child herself too) and knowing how devastating Cadel getting sick can be said they couldn't make the afternoon tea. Well I have to say I immediately started crying, not just tears but I had my ugly cry going.  You know the one I'm talking about the one where you just have no control over it and you know that it doesn't look attractive! Definitely not the delicate cry you see in the movies! There was also the obligatory CF sucks with loads of swearing before and after those words. 

After much messaging back and forth, a phone call, spoiling my secret plans by telling the girls and a lovely, fantastic husband who cleaned up the yard in record time, we sorted it all out, had the afternoon tea in an outdoor area with no contact and we got to say thank you. It was a lovely afternoon beside the pool, waited on with lovely food and great company and we got to feel lady like with our tea cups and cucumber sandwiches, the conversation may have not all been ladylike though, mostly it was oh hell, who am I kidding that's what friends are for! 

The second interruption occurred the same day! Probably why my emotions were so high! Lorelei loves to write stories and draw pictures so I wasn't surprised when she came to me with a book she had written about our family. The words literally took the wind out of me and scared me for things to come. As most of you know Cadel has been really unwell over his life time and doesn't have the best outlook for the future. For those that don't know in September 2012 the Drs told us that Cadel is unlikely to make it to ten but then after more infections and more interventions the Drs said in January 2013 that it now may only be months ( really tough to actually put that into black and white, the first time I've done it!) Scott and I are forever hopeful that this is not Cadel's fate and we have never mentioned this to Lorelei and Xavier as its just not relevant to them right now but we will discuss it when the appropriate time arises. 

So when Lorelei came to me with her story that read these words I was fearful and completely not ready. 

" Our Family. Once upon a time there was a little boy who had CF and he was sicker then anyone. One day Cadel went to hospital because he was sick. He still gets sick when he has CF. The End. "

We make an effort to explain to the kids that all CF sufferers are different and not all are as sick as Cadel and they have met other CF kids and even met Peebo and Dagwood, the performing clown brothers who both have CF. In their world though Cadel is the sickest person they know. I know the kids know and feel like there is more than what we let on and the day that we have to explain the full diagnosis of CF scares me let alone the conversation about Cadel's diagnosis. 

So as much as daily life carries on around us and we get back into our family routines CF is always lurking in the back of our lives and waiting to rudely interrupt. BUT the way we react to these interruptions is what is important and we are forever in the good fight against the evil that is CF and even little small wins like still being able to thank our friends are wins against CF nonetheless. One day we will have a big win and Cadel will prove the Drs wrong. 

K

Finding the positives in the negatives.

Yes Cadel is admitted again and once more I have missed those moments in time for the older kids and I can't get them back. 

Today marks the 9th day of Cadel's admission and so far this admission I have missed Xavier's Mother's Day afternoon tea and Lorelei will be performing on assembly at school this week and I'll miss that too. If I listed everything I have missed for the older two kids while looking after Cadel when he is admitted it would be very overwhelming for both you and me but I'll list a few. There would be two Christmas mornings, dance open days, Taekwondo gradings, swimming lessons and Mother's Day sleep in, two Mother's Day school days, assembly performances and school holidays as well as two wedding anniversaries with hubby. 

I've cried so many tears over all of this and now I'm just getting angry. I'm angry that this crappy terrible disease takes so much away from me, my family and my friends families. I'm angry that some of the really good CF friends that we made in the last 12 months or so can't get together and have a family BBQ, kids and all, because of the risk of cross infection. I'm angry that CF doesn't get the recognition that other illnesses get because the sufferers don't look sick. I'm angry that we have to beg and plead for help from the government to only be knocked back time and time again because CF doesn't fit into the right category. 

This disease takes so much and it's robbing me of time and precious moments with all my family. I just hope that the kids don't grow up and resent me for missing these moments. I don't think they would as they have become so resilient and just take it all on board. This weekend when. I told Lorelei that I would most likely be missing her assembly performance she just looked back at me and said 'yeah I know Mum'. Lorelei also comforted Xavier when he realised I would miss an event reassuring him that it's ok because he would have Nan there.

It's hard being away from my husband too. I miss our debriefs on the couch of our days, watching our favourite TV shows together and even just kissing him goodnight.  

All of this melts away when we are home and just have fun and be a 'normal' family creating memories. Having a picnic on the floor or having movie night on a Saturday night, splashing around in the pool or running around in the back yard playing with the dogs and chasing each other. 

I may have missed some important moments but I try my hardest to create more that the kids will remember and cherish. 

As I come to the end of my therapeutic writing session I am reminded of the positives that this disease has brought into my life along with its negatives. 

Scott and my relationship has grown stronger with all the challenges we have faced. He is my strength, my courage, my best friend and my partner in crime. He makes me laugh and giggle and feel so loved. He gets up early to come and visit Cadel and I before work but also stays up late to make me dinner for the next night. 

Lorelei and Xavier are compassionate little souls who are able to cope with more than I give them credit for. 

We have met so many beautiful and special CF families who's friendships we cherish and feel like we have always known them forever. Most importantly without CF we most likely would have never crossed paths. 

I have found strength in myself to stop being a door mat and to do what is good for me. 

Found true friendship and what it is like to have a great support network surround me and my family. 

Have met some wonderful and caring staff at the RCH who inspire me everyday to chase my dream of studying to be a nurse. 

I am determined to be healthier for my kids as they all depend on me so much, especially Cadel as I am his registered carer. I have found so much more confidence since I have become healthier, I am a work in progress and have gained a lot of self esteem back. 

So as much as sometimes I want to yell out YOU SUCK CF ( well probably with more swear words) it has brought some good into our lives. 

K

Sentimentality vs Hoarding!

I have a confession to make.

My name is Kristy and I am a huge sentimentalist and I'm afraid it may be verging on hoarding.

We all have those cupboards or doors that barely close because of the stuff that gets shoved in there just because you can't bare to get rid of it, just in case you need it or because it holds a special memory. Well I'm hoping you all do! Please don't tell me I'm the only one.

I have to say that I have inherited it from my father and sadly one of my children seems to be going the same way. I'm not too bad, I think I have become better at getting rid of things that I no longer use but there are just some things that are too hard to get rid of.

The toughest is the baby things. I have managed to get rid of some baby items that we no longer need as we have finished our family. Although I had to fight that little pang of 'what if you need it' and the even worse ones of 'all the kids used this' as those moments frozen in time flash through my mind, as I'm handing it over, knowing that it is going to a well loved home.

Hubby just this week asked what we were doing with the high chair as at the moment it just sits in the garage in pieces. I got upset and cranky and couldn't deal with making a decision on what to do with it as that means that that chapter is closed and that is the part that makes it hard. It's the sentimental thing that all three kids have sat in that chair, eaten in that chair, fallen asleep while in that chair and made huge messes in that chair. I know things don't hold the memories, my mind does but to give away the big items like that means that there would be a big fight with those panicky pesky pangs!

Also the kids art! Boy does that get out of control. I used to have boxes for each child and kept my favourite crafty creations until that spiralled out of control and the boxes were overflowing. Now we have an art gallery were we can hang the best pictures until they get filed into the big green filing cabinet, otherwise known as the wheelie bin. All done secretly of course because if they the kids saw me I'd be in big strife. There was a good idea I had heard about taking a photo of the art them collating them all together and printing out a photo book. But then what do you do with all the photo books.

Where does it stop?

Please tell me I'm not alone in this mind of sentimentality and that everyone has those treasured every day items that you can't bear to part with, or the onesies so we can really remember how little the little ones were, or even just some of the everyday stuff that you might just need one day!

K

Don't call me super mum!

I'm a mum to three, and one of my children has extra needs of a medical nature that makes me an official full time carer. Yes this statement is true but please don't call me super mum!

I've been called a super mum by a few people and even by some staff at the Royal Children's Hospital (RCH) including some of the social workers but I cringe every time I hear it. Yes I know I do a little bit more than the average parent for my child because he has Cystic Fibrosis but I don't do it because I want to I do it because I have to.

* If I don't do Cadel's enzymes he won't absorb his food and won't get the much needed nutrients from his food to grow big and strong and to fight off infection.

*If I don't give him his physio sessions he can't move the thick sticky mucous that clogs up his lungs and infections will set in.

*If I don't give him his daily nebulised medicine it won't help to break down the mucous.

* If I don't give him his liver medication his liver disease may progress sooner and need a liver transplant.

*If I don't give him his vitamins he may get brittle bones from not getting something as simple as enough vitamin D.

*If I don't give him his antibiotics a simple virus may attack his low immune system.

*If I don't give him his tube feeds during the day he won't get enough calories that his body needs just to be a normal 2 year old.

So as you can see I do it because I need to not for want.

I'm an organised person who loves lists and routine. I again need to be. With two older children at school and extra curricular activities I need to organised and have dinner made by ten in the morning so that I can get to dancing or taekwondo or even clinic for Cadel to have a check up. This is just so that there is some normalcy in our families life. Hubby and I strive to make life as normal as possible for the kids because it shouldn't be normal to spend over a 1/3 of a year staying in a hospital or visting your mum and brother in a hospital. Or helping by holding down your little brother's legs while Mum reinserts a misplaced nasogastric tube. ( a memory of Xavier I will never erase from my mind, he is 4 years old silently enters the room sees me struggling and just kneels down and helps, breaks my heart but also warms it that he is so caring and helpful). Normal should be going to school, doing dancing and taekwondo and playing in a park and not worrying about catching the mucous your little brother is coughing up because you are closer as mum dives for the cloth nappy and races over. ( Lorelei is notorious for this.) So to have some normalcy I need to make lots of lists and be prepared for it all. This is when people usually see my extreme organisation and comment "oh aren't you the super mum!"

I have to also give a massive shout out to my support system which has stepped up into overdrive in the last 8 months or so. Hubby has always been a great support and helps out with all of Cadel's and the older kids needs also but there have been a few friends who have really stepped up without us asking by looking after the kids, cooking meals, asking how we are all REALLY doing, put smiles on our faces and just being there to listen. So I have a lot of people behind the scenes helping to make me look better and look like I have it all together a bit more then I actually do.

So when someone pulls out the super mum tag I cringe because I feel it puts so much pressure on me. Yes you may have said it as a compliment and truly no malice whatsoever but I feel deep down inside there is a guttural scream of "NO" as I then think I can't fail now I have to always be on my game. I sometimes put on a brave face when I feel like my world is crumbling down around me. Those closest to me have learnt to see through the fake smiles, I do this as most people do because I don't want to look like a failure because sometimes you feel there are certain expectations on you. These expectations are probably put on by ourselves and society in general, we have to have it all together and be ready to take on more. Somedays this just isn't the case and I drop all the balls where as other days I'm amazed at my own juggling skills.

So just don't call me super mum, I'm just doing what any parent would do for their child to keep them well and somedays I have really bad days too but smile to hide the destruction of my day. Oh and don't get me started on the whole " oh I don't know how you do it, you are so strong! "

K

Its hard to be the patient sometimes.

So I am one day post gallbladder removal surgery and I am busting to get out of this hospital, why? I don't know the answer. Well maybe I do....It's an enforced rest period yet my mind is racing and I'm so bored because I'm not doing the usual morning routine of rushing around getting the kids ready for school.

I'm also usually the hand holder when I'm in a hospital. I'm very used to being in and around hospitals with Cadel having CF and having 20 admissions and over 10 general anaethestics I have seen my fair share of procedures and insides of theatres but I'm usually the one holding his hand and reassuring him everything is ok.

Being on the other side is kind of terrifying, maybe that is because I've been in and around hospitals so much in the last two years I am more aware of what happens, it may also be the fact that I'm an adult and I'm supposed to ok and tough and strong and not nervous. But who am I kidding as I got wheeled off to the theatre then left alone while they prepared the theatre the anxiety really set in. All I kept thinking is adult hospitals could learn a lot from children's hospitals. They need to still reassure us and make sure we are ok.

It may also be that I'm a massive control freak and the feeling of grogginess scares the bejesus out of me because its that complete feeling of no control. I'm still feeling yuck about all that when I think about it now. For the life of me though I cannot work out why when I woke up I was thinking " I'm stuck in Facebook and Pinterest, I need to get out of here" it was like I was trapped and then I was looking up at the blank recovery ward ceiling feeling ergh!

I would hate to think what nurses and Drs are like when they are patients when it feels this bad after being the hand holder. I know it will help out when Cadel next is in hospital as I have that extra understanding, I just hope that I don't have the Facebook and Pinterest flashback! Shhh don't tell hubby he would just tell me it's because I spend too much time on this sites!

K

Compassion, where did it go?

I am writing to vent and for therapeutic reasons as I feel that I was in a situation that required some compassion from someone and found that they had none, not a bit for me, my family or my situation. The situation itself is not important but the bigger question is when did it become okay to have no compassion for others. After having the biggest gift of compassion of all, being the gift of a pool in our yard how can the great feelings of warm and fuzziness be striped away with one swift move of inconsideration.

It got me thinking about what has happened to our world and what made people loose their ability to have consideration for others. Are we so caught up in our own little world that we stopped thinking of others. Do people still give up seats on the train or bus for the elderly or pregnant ladies. Are you the sort of person who will hold or open a door for a parent pushing a pram? Do you park in the parents park? I know that parents parks are a privilege and not a right but as a mum of three trust me when you have kids to get in the car it's so much easier to be able to open the car door up completely when you have to buckle the child into the middle seat. So why is it ok to park there if you aren't a parent or you don't have your children there. Are you not thinking about the parent that could of used that park for its intended purpose when you see a close park to the shops.

I have found this world to be a cruel one sometimes, don't even get me started on smokers! I just think it is common courtesy and politeness to not smoke around children, let alone a child that has an OXYGEN bottle clearly labelled as an oxygen bottle, hanging off the pram.

We need to stop being selfish all the time start to give and share and be kind. Let that car with the indicator in, in traffic, hold the door open for someone, give up your seat for the older gentleman on your train. I have a friend who was notorious for every time she went through the gateway toll she would pay for the person behind her. This deed went unnoticed by many, had no big fanfare about it all and I'm sure it put a smile on her face as well as the complete stranger that got a surprise when they went to pay. Sadly it's all electronic now but I'm sure that friend has found another way to give.

I think we need to look back at history and the way that people were more compassionate and learn and take note. I know I am. I will set myself a mission to do an act of kindness for a stranger that will put a smile on the receivers face and I hope that you can find some compassion too and do the same.

Lets make the world compassionate once again.

K

Military Precision Packing!

So we recently went away for the weekend and I have to say the packing with three kids doesn't get any easier let alone throw a child in the mix that needs medications and oxygen machines!

I remember the days of just throwing a few things in a bag last minute and taking off but that was what hubby and I refer to as BC, before children that is.

Even as babies going to the shops was a big drama taking extra outfits, bibs, nappies wipes dummies etc. you would never use them then one day you would think ok let's just take the nappy and wipes and then BAM you have the poo explosion of the century ( Mum's you know the ones I'm talking about) and here you are battling with poo and floppy arms and legs and wishing that you should have bought along that extra outfit and wrap to cover the crime scene left behind in the pram.

So back to the past weekend. I must say I've gotten better and more organised at packing and getting the kids involved helps a lot. I have found to pack the kids bags into outfits for each day and then put them in plastic zip locks for the kids to decide which outfit for each day seems to be working well. It's still a military precision operation to get organised and takes a lot of time to even prepare to pack. Cadel has extra things to pack! There are his countless medications his oxygen, the extra oxygen bottles, the hi flow oxygen machine, the folder full of his scripts just in case we forget some medications or they run out, the nebuliser and all its chargers and of course the all important letter explaining Cadel's CF complications and his treatments.

So I'm always doing a mental checklist even as we drive away going through everything in my head ticking it off even though I've ticked them all off physically on the list I wrote out at the start of the week in preparation for the two night stay that we were going on. My anxiety levels go through the roof and I don't think I relax until I unpack at our destination and am sure that we have everything.

I always love seeing the hotel staff and the shocked faces as we unload our massive amount of luggage. The car is always so loaded up for a two night stay, boy but you should see it when we go for a week we almost need a trailer!

K