The Big Steep Hill

This blog is a lazy one I have to admit. I have stolen it from a past post I have written before on Facebook. 

I was doing training for my fun runs ( why they are called fun runs I'll never know!)  this morning and it was hill runs! A tough task that I never look forward to but love it when I finish them. It involves sprinting up the hill, to walk back down to turn around and do it all over again another 11 times. 

While I was distracting my self from the pain I was reminded of this post I had written around this time last year and found it appropriate to share. The hills may have become even easier still to accomplish and we have also gathered more support and grown as people.

So without further ado here is a post from early this year when Cadel was admitted......

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"Jan 9

So for the past week or so I have been keeping myself sane during this admission by getting out and going for a walk. On the first walk I decided to take a different path then I have used on previous admissions. The signs said "caution step path ahead" I pushed on regardless. It was a tough hill as are most around the hospital but I made it! Today I did the hill quicker and more easily then that first day and as I turned around and looked down at the steep path I had just walked I started to reflect on the last two years. 

Our family has had no choice but to take on the steep path and battle alongside Cadel with his illness. It has gotten easier as time goes on to deal with the steep path and it has made us all a lot stronger too! I myself have changed from the people pleaser I was into someone who is comfortable saying no if it doesn't suit me. I have learned to ask for help a little more too ( still a work in progress!). I think Lo and Xav have become very resilient kids and are more compassionate for seeing all that they do in the hospital. Cadel well he is just wise beyond his years and very well rounded with all that has happened. Scott, I should let speak for himself but I believe our relationship has strengthened where others may have cracked. 

There have been many friends who have found our path too steep and dropped off but more importantly there are those who have reached out their hand and given us the boost and help that we sometimes need to reach the top. Most of the time without us even asking. 

So thank you all for joining us on our journey with Cadel and CF. Your kind words and positive vibes help us tackle our steep path a little easier every day."

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Our support network has grown to even complete strangers with whom we share our story, we hope you continue to learn, share and help push us along.  

K

Counting my blessings.

My day has been a really shitty one! You know the ones where nothing seems to go in your favour. 

It all started in the shower when trying to shave my armpits the razor was blunt, it made me angry. Then my deodorant ran out, this made me mad,  my breakfast wasn't one of my favs but I ate it anyway, thinking about what I would really like to be eating and it made me mad.  ( I'm doing a 12 week program of planned out food and diet). I had dramas parking my car in the school car park this morning and it made me angry. My newish car got a little ding in it, completely not my fault (honestly I had nothing to do with it) I got angry. You can see where I am going with this. To top it all off Cadel's feeding tube became blocked and I had to remove it completely to unblock it. ( this involves removing the whole thing from his tiny little belly and leaving a gaping, stomach content leaking hole while I unblock it. Stomach juices don't phase me anymore obviously but sorry if you are reading while eating!) Then I had to reinsert the bugger, it had only been out for a few minutes and poor munchkin was asleep so it needed a little force. Have to say that in this moment I am not a Mum, I'm a carer.  A mum could never do it as she sees pain cross the face of sleeping child as she pushes a plastic tube into a surgically made hole in the front of a tiny stomach. As a carer it's something I've done several times and will probably do again in the future. Needless to say it was not how I wanted to end my Monday night and it made me really angry and wish the day was done. 

That was until I was having a shower preparing for bed ( why do all the moments of clarity strike you in the shower, a blog for another time perhaps) that I thought oh the day is almost done. I then thought why am I thinking this way. I get to kiss all my children goodnight as I do my last laps of the hallways checking all the obstacles for late night dashes to screaming children are packed up, I get to kiss my husband goodnight as he sleeps beside me, stumbling in after falling asleep on the couch and checking on the kids too. 

I am lucky. We are lucky. Things could of been very different for our family right now if the Drs predictions were right. They didn't think Cadel would be here with us right now. He is though. He is living proof to never give up and to never take any day, shitty, mediocre or good for granted. I am lucky and tonight as I close my eyes and nod off to sleep (after I've cleared out all these thoughts into a blog) I'll remind my self to count my blessings as I am lucky to be able to say that small things made my day shitty and that one big thing hasn't destroyed me or my family. 

Good night, sweet dreams and hope you all count your blessings too. 

K

Sticks and Stones

"Sticks and stones can break my bones but words will never hurt me."

This children's rhyme has a deep meaning for me this week. After watching another story on bullying I realised that sometimes we forget words can hurt! They can hurt a lot actually. 

I was bullied in primary school, year 6 was probably the worst and I was almost moved schools because my parents could see how much it was affecting me. 

I was lucky though, lucky that I didn't live in the world of fast paced technology that we live in today. Bullying never stops now, with Facebook, Twitter and other social media sites the bullying continues and follows you home. Keyboard warriors  forget that even though they sit behind a computer or phone screen that the words the type are hurting someone and that there is a real person on the other side of their viciousness. 

As a parent I fear for my children everyday that they will be a victim of bullying. I'm even more fearful that they will be a bully. I would be so devastated to learn that my child had made another child feel less valued to the community then they are. 

One way in which I'm trying to be a good example to my children is to not use certain words in every day language.  A couple of years ago I decided to make a list of words I don't think we should use and put them up for everyone to see. 

The list consisted of words that I think are not nice words and that are words that are used to harm others and thrown around too flippantly today. I also think that they are words that I think are lazy, I think my kids are better than that and need to really think about all the words they use as sometimes words can be sharper then knives. 

Some examples of my words on the list are: 

FAT. This is a word that I really dislike, I think when used to describe someone it is a vicious word and I have been on the pointy end of this word. My kids don't hear this word used in a negative way to describe anyone and I still remember poor Lorelei bringing home a reader in Prep and it was about five fat fish, she was reading it, came to the word stopped and looked at me like she didn't know if she should say it. I explained that it's okay in the reader but we need to choose our words carefully and we shouldn't use words in a bad way. 

HATE. Hate is such a strong word and I don't think should be used lightly. There are many other words that can be used instead. 

STUPID. I know it sounds strange but again it's a very strong word that can cut to the bone and words like silly can be used instead and doesnt have the power that stupid does. 

That's my point I think, is that some words have a lot of power and can harm , so using different words that have the same meaning but less impact can teach my kids that words can really hurt, sometimes more then sticks and stones. 

They also learn that words can make someone feel very good and special so we teach them to compliment people and to say thank you and make people feel appreciated. 

K

Admission adventures.

Well we have recently just come out of the latest hospital admission for Cadel that was half expected but also a surprise.  We had a planned admission for Cadel that was a 24hour admission to do a top up of IV vitamins. Cadel has on previous admissions had this top up of IV vitamins so now it is almost a necessity to keep his vitamin levels up. It is typically a 20 hour infusion which means that a set volume of liquid vitamins is pumped into his blood stream over a 20 hour period. When we arrived at the hospital though we were given the news that they would like to keep Cadel admitted for a 10 day 'tune up'. For those not in the know about CF a 'tune up' is a term used to describe a course of IV antibiotics to help improve the patients chest hence a 'tune up'.  Cadel had been 16 weeks between admissions and had made it through winter, which totally amazed us and the Doctors but they wanted to just make sure his chest was back up to his baseline as it had dipped a little in the previous month. 

So off we set on the new adventure of this admission. It was tough keeping a relatively well, almost 3 year old occupied busy and happy in a room measuring about 4x4 metres square, as he was hooked up to different IV antibiotics, IV vitamins and feeding pumps. We managed and I think I kept my sanity but I just wanted to share with you how an admission for Cadel typically goes and what happens especially in the first few hours. 

We knew this admission was happening and on which day but we were unsure if Cadel had a bed available so we had to wait for the hospital to call us, this is how our day played out. Yes it is frustrating and tough and it is something we have done over 20 times. It doesn't get any easier, I think we just adapt quicker and take it all on board. 

9.30 We got the call that the CF Clinical Nurse Consultant ( CF CNC) had been to the hospital bed meeting ( a morning meeting everyday to discuss available beds in each ward) and they should have one today but unsure what time as they were waiting for the patient to leave.

11.30am We get another phone call from the CF CNC that the bed should be available by 2pm. 

1.15pm We pack up the car and head in down to the Hospital. 

2.10pm We arrive at the hospital, load up as much as we can and head on into admissions. 

2.30pm We finish all the paperwork at admissions and they send us on up to the ward. We are told on the ward that the room hasn't been cleaned yet so we will have to wait. We head on downstairs to just relax on the lawn. Luckily Cadel is alseep and misses all the drama! 

4pm we get the call from the ward that the room is cleaned and ready for us now so we head up. 

4.15pm a researcher from the Liver research team that Cadel is participating in has caught on that Cadel has been admitted, she asks if they can do this regular ultrasound for research purposes. 

4.30pm Scott arrives at the hospital and both Cadel and I are happy to see him as he is a big support for both of us during admissions. The Dr also arrives at this time and proceeds to tell us it is going to be a 10 day admission and discusses the medications etc. 

5pm Cadel's feeding tube becomes blocked and luckily his Dr is still on hand to help unblock it! Phew! 

7pm Cadel has his port needled. Cadel has had many admissions as you all know and his veins don't cope well with the IV lines so they decided over 12 months ago to give him a port-a-cath* this is a process that Cadel has to go through every 6 weeks as they need to flush it regularly to maintain the line and make sure it doesn't get blocked with clots. During admissions the needles are changed every 7 days to lessen the risk of infection. Although this happens regularly it is not a nice process as Scott and I have to hold Cadel down as the nurses insert the needle and take blood samples. Sometimes the port can be tricky and it may take a few attempts. Hard to explain to a toddler to just keep still when all he sees are needles coming at him. Scott had to leave not long after. We miss him and the big kids already. 

8pm Cadel is connected to his usual overnight feed. He also finally settles and goes to sleep. 

10pm The first of the antibiotics are finally started and I finally can settle down to get some rest myself. 

The next day and everyday after for the 10 day admission is different as they try and fit the meds in around his Physio times and letting us escape etc some points to share though are that at 

8am, 12pm and 3pm everyday is a Physio session. 

IV antibiotics are hooked up for periods lasting up to an hour at 6am, 8am, 1pm, 10pm and 12am. 

He has blood tests at 10am and 2pm on his second day of admission to make sure the levels of the antibiotics are not toxic but are enough to be effective. These blood tests are unable to be taken from the port as it is where the antibiotics are administered and may give a false reading. They typically do a finger prick and then squeeze the required about of blood into a test tube. Hard to watch and again hard to explain to a toddler. 

2pm on the second day the 20 hour infusion of IV Vitamins is hooked up, this now means he must remain connected up to the machines and therefore stay in the room. 

Hope this has given you all a quick insight into our admission. Maybe I will do a post on a typical 24 hours at home for Cadel. Well Cadel isn't so called ' typical' but you all know what I mean. 

K

*In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

Sitting on the edge.....

With Cadel being so well at the moment and avoiding admissions. We as a family have been busy during the weekends just doing everyday things and some extraordinary things. 

Because of Cadel's health we haven't been able to visit my parents who live in a small coastal town 4 hours away for over 18 months. Although we have seen my parents as they have visited us, it's always nice to go back to your home town, even if it is to remind your self why you left in the first place. ( Bit cheeky I know!) 

Not being able to visit for so long has meant that I haven't seen my grandfather in many months also. With the use of some technology it has been great to see him on Skype but there is nothing like giving him a hug! 

I am happy to report that just this past weekend we made the trip down, with the clearance of Cadel's CF team. We had to pack a few extra items then the normal road trip but we made it down and really enjoyed ourselves.  It was great catching up with my grandfather and going back to my hometown. 

CF and Cadel's condition are never far from our mind even when we are enjoying ourselves on trips like this or just hanging out at home. Every step of the way, every where we go CF is always lurking in the shadows, waiting to give you that jolt back to the fact that we have a child with a limited life. 

I refer to it as sitting on the edge of a cliff, waiting and worrying that someone is going to knock you off. Staring down at the black hole that is the unknown. Its like a terrible waiting game. Yes Cadel has been well lately and has avoided an admission for 13 weeks now,  but the fact that the Dr's told us in January that he may only have months left is stuck on loop in my head. Those words have never left me and as each month passes, hubby and I high five but we never stop worrying about the next month.  So even when he is well we are concerned about what's around the corner.  We remain positive and hopeful that Cadel will be a statistic of a good type. We want him to have the story to tell at his wedding that at age two he was told he had months left to live and that he proved the Drs wrong. Oh and don't worry this Mum will invite those Drs to the party, not to gloat but to thank them for all their efforts and for never giving up. 

As a Mum of a child with a terminal illness I don't think that I will ever stop sitting on the edge of the cliff but I know that I can look around and see the family and friends who are waiting to grab me. My support group, my safety net, my harness, they make it possible for me to just function daily but I know that they also genuinely care about Cadel's health too, sometimes they even sit down beside me on the cliff. 

K

My wish for you....

As I sit waiting for my princess to do her Jazz and Ballet classes for the next two hours I think about how hard it is for girls to grow up these days. It has always been hard but I think society has made it even harder. So there are a few things that I wish I had of known when growing up and I thought I would share what I wish for my little chicken! 

****WARNING this blog will be full of positivity and lots of inspiring affirmations! *****

My wishes for you my chicken little:

❤ Always be yourself. Don't change who you are to fit in or make someone like you. If they don't like you for you or take you the way you are they aren't worth your time. 

❤ Appreciate your brothers. They are the ones that will always be there for you and stick up for you. You may need to look after them sometimes too! 

❤ Be kind to yourself. Don't get sucked into what the magazines say you should look like. Women are all different shapes and sizes and no one is perfect. Even models have something they don't like about themselves. Some people are tall some are short, some women have bigger breasts and some smaller. Love the body you got as its the only one you have. Also know that beauty comes from within and shines outside. 

❤ Be your own person. Like what you like and what you don't like. We are all different and if we all liked the same things it would be a very boring world. Don't give in to the pressures to do something just because someone else has the idea that doing that it can be cool or good for them. Make your decisions wisely and with much care. 

❤ Create your own path. Don't follow in the footsteps of others. Nothing good ever comes easily. If you work hard at something you can look back and be proud that you have achieved something special and know that you gave it your all and that no one else did it for you. 

❤ You are awesome. You are smart. You are beautiful. You are kind. You are unique. Have great self esteem and don't let anyone or anything strip it away. But don't be too proud to admit that you are only human. You can be strong but humble. 

❤ Don't be too proud to admit when you have made mistakes. Mistakes mean that you have tried and are living. Learn from your mistakes though and move on. Don't over analyse moments in time that can't be changed or taken back. 

❤ Girls can be nasty and cruel creatures if they want to be.  Don't be a 'mean' girl. Stay clear of these types of people in general. Surround yourself with positive people. 

❤ Choose your battles. Sometimes it's best to let the little things slide. Fight for the big things and be strong about what you believe in. 

❤ Boys, where do I begin! Some will become great friends others will float in and out of your life. The really special ones will love you for you and build you up and never tear you down. Love isn't all Fairytales and Prince Charming but, you will find your soulmate, maybe when you least expect it!  

❤ Be kind to your parents! When you become a parent yourself you will know how much we did, do and have done for you. 

❤ Be kind to everyone you meet as everyone has their own struggles and battles to deal with. 

❤ Be compassionate and treat others how you would want to be treated. 

❤ Smile, be you and love will shine from you and be returned to you! 

K

"Let me be, Mum"

So sometimes it's easy to forget that Cadel is also an ordinary 2 year old as well as a two year with chronic lung disease, liver disease and sufferers from CF. 

Last week I had a few reminders! 

Cadel had a massive tantrum. It wasn't about anything in particular but it was a terrible two tantrum because he didn't want to have a sleep. He was so, so tired and was just fighting it so much. I was holding him as he squirmed and squealed at me for the half hour that it took for him to calm down. I kept reminding myself this is normal, this is normal and then it came to me, I'm not holding him down fighting with him as they needle his port or take some blood instead I'm just dealing with 'normal' two year old behaviour (if there is such a thing as normal two year old behaviour) and I smiled. I know strange that I'm smiling as my nerves are frayed by the screaming and squirming but I was happy in the fact that Cadel was able to be a two year old for once. 

The same week Cadel was having some bad dreams ( probably explained the above tiredness) and just wanted Mum to sleep in his bed to know that I was there. Again I was grumpy that I was having interrupted sleep but then reminded that I wasn't getting up to an alarm on his high flow oxygen machine or because his overnight tube feed machine  was alarming. I was getting up to my son who just wanted his Mum. It's nice to have those moments. To be a Mum and I know that as a parent we all take on many roles but it feels so great to be Cadel's Mum and not Cadel's carer. 

Another moment was letting Cadel play in the park with his friends and brother and sister. It was fantastic and heart warming to see him playing without a care. I can't say that it was the same for me in this instance. It was a park that was covered in sand. 

I was panicking on the inside about any bugs that could be hiding in the sand that any other parent wouldn't have to worry about. Resting assured that I was probably just being over cautious. 

I was panicking about the bugs or viruses left behind on the rails of the stairs as he climbed the stairs for the slide. Reminding myself that I had hand sanitizer to wash his hands when he had finished playing. 

I was panicking about the sand that was now everywhere and now making its way into the area around his button. Upon inspection I found the sand had made its way into the delicate area around his button but I decided it was bath time when we got home to make sure it wouldn't cause any complications. 

On the outside I was smiling and enjoying the park play but inside I was screaming with anxiety. It's a battle to control that screaming and anxiety and keep it on the inside but it is important to do that so that Cadel can be a two year old and not always be a sick two year old. He needs to enjoy the small things as so do we as we watch with so much delight as he discovers all the goodness that this wonderful world has and not just the terrible sterile hospital environments. 

It's also important for his big sister and brother to see him play and have those memories and not just have memories of treatments and seeing Cadel unwell. 

Once more I found myself letting go a little bit more of those little anxiety demons but know as any parent knows you will always worry for your child regardless if they are well or unwell and knowing to learn what I can and can't control is the biggest lesson I could I ever take from all that life has thrown at us. 

K