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That day has arrived!

I have been dreaming about it for four and a half years!

Last week, my youngest son started pre-primary schooling!! All four kids are now in full-time school!!! In the same location!! At the same time (between 8:30am and 3:10pm!)
The idea of five days a week without having to hear “But Mu-u-u-m!!”, or “So-and-so took my toys” or “I’m hungry!” has felt like a distant dream…until last Monday.

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First day of school, 2014

While a massive part of me wanted to kick my heel together and skip out the school gates, there was a small bit of worry lurking in the depths of my stomach as well.

Cameron was at daycare for around two years. The staff all had training from the CF Association for his cystic fibrosis,. They worked very closely with me for his meals in regards to his special diet. They worked breathing exercises  into their daily programs so Cam could do his physio, without being obvious to other kids. I also wrote out medical forms every day to specify how many tablets he had to have, and when.

This was the cause of my worry about starting school.

(NOT Cam's lunchbox!) This is a representation of  a CF lunchbox. Seperated into meals. The round, blue containers contain the medication.

(NOT Cam’s lunchbox!)
This is a representation of a CF lunchbox. Separated into meals. The round, blue containers contain the medication.

The CF Association came to town a few days before school started and did a presentation to the school staff. I was present to make the information more personalised to Cameron’s needs. The staff seem to be switched on and are welcome to approach me with any questions (which they already have- just to clarify they are doing it correctly) Cameron takes his medication in his lunch box, and administers himself. I leave a note in different sections of his lunch box to let him (and the staff) know how many tablets to take for morning tea, lunch…etc..

Let me clarify right here….I am a control freak! This loss of control over knowing how many tablets he is taking…especially IF he is actually taking them just about has me starting the bad habit of nail-biting.

I trust Cam will take them. I trust that he will not start eating his meals without having his tablets. But there is still this niggling worry that something will go wrong somewhere.
At daycare, it was all written out for the staff. They stood over him and watched him have his tablets (he still administered himself, I believe). All staff in the building had CF training, whether they worked in his room or elsewhere….everyone KNEW Cam’s needs and their importance.
My biggest concern is that the teachers, aides (etc.)….but especially relief teachers…will miss the significance. The importance.

One part of my brain is trying to soothe me, saying “It will be ok. Other CF kids go to school!”….but another part of my brain is replying “But this is MY child!!! If they screw up…even just a little…it could mean pain!”

Cameron is absolutely LOVING school. In terms of medication at school….so far, so good!

He missed out on the last three days from the first week of school due to a medical check-up in Perth (another story in itself) but he is keen to return next week.

He is so eager to be a “big boy”. I’m eager to have “quiet child-free time”!! This is what is slowly calming my worries!

Everyone says “You wont know what to do with yourself now that they are all at school.”

Trust me…I know EXACTLY what I am going to be doing! I have a massive stack of books to read. I have a mound of paperwork I have been pushing aside due to lack of energy and concentration. I have friends who I have been neglecting. I have a giant pile of coffee pods to drink. I have many tv shows recorded.

I will be fine!

How was your first day of school?
Bella 🙂

The Dark Hanging Clouds- a personal experience

 

anxietyI do not hide the fact that I have anxiety. Given all that my family go through, is it any wonder?

I have what is known as “Situational Anxiety” , which means that I’m not anxious all the time…but drop me in a situation where stress is high, I tend to temporarily take it to the extreme…and if pushed enough, will have a full blown panic attack where I can’t breathe, my heart rate rises rapidly, I want to throw up and I get dizzy and feel like passing out. Thankfully I haven’t had many of those.

Believe it or not, but this is an improvement for me!

Really, it all started around the time that my eldest son was born eight years ago. It would have been classed then as Post Natal Depression (PND). I was moody, sometime teary, overwhelmed and didn’t have a lot of interest in much. But (and this is NOT recommended) like a lot of women…I hid it.

Then I had my daughter, things were a little worse. By the time my middle son came along (bear in mind, this was three children in 2.5years) things had hit a critical point. I had no energy, didn’t want to move from the couch. I had zero interest in anything….zilch! IF I spoke, it was because I had to, and it was barely above a whisper (and for anyone who knows me, knows how much I love to talk!). I felt numb…like a hollow shell.
I wasn’t suicidal. I didn’t have visions of harming anyone…least of all my children…but I just didn’t care about anything anymore.
This was when my husband intervened and said that I needed to get help because I was freaking him out.

postnatal depressionOff I trotted to my general practitioner (GP) and burst into tears in his office when I told him that I thought that I had depression. He patted my knee and told me that he was proud of me for coming forward. He did the formal examination to officially diagnose, and I was prescribed antidepressants.

I wouldn’t say that medication turned my life around, but they helped me to cope with life easier. I was functional again.

When I fell pregnant with my youngest son, he definitely wasn’t planned. I had eased off my medication, but was worried about a bad relapse again. Pregnancy with Cameron drained me, making me very moody and tired. Part of it was physical, due to the pregnancy, the  other part of it was mental state. I managed to push through. After he was born, I felt fantastic physically, which improved my mental state. I still didn’t need medication.

Then, four weeks later…we recieved Cam’s earth-shattering diagnosis. While we were in hospital in Perth during Cam’s diagnosis admission, the nursing staff told me that my GP called the hospital every few days, not only to check up on Cam’s progress, but to check up on me as well considering my history of depression.
The CF team knew of my history during this period as well, and considering that nature of what was going on, kept a close eye on me as well. They praised me for keeping it together, for helping out during the dramatic parts instead of becoming a hysterical mess.

Throughout all this, I was still numb from the shock of diagnosis, but Cam’s current health condition took my complete focus. I did have a brain snap moment in the hospital, where I had a complete blubbering meltdown over the fact I had completely lost my milk supply (probably due to stress) and could no longer feed my baby breast milk. We had tried medication to boost it, but it didn’t work. I felt like I was under pressure to keep producing, and felt like a failure that I couldn’t do it. A wonderful nurse closed off our room, talked me through it and boosted my mood and self-confidence again.

When we returned home a few weeks later, Cameron had to have his routine, post-birth checkup at around 12weeks old. By then, I could tell it was all getting on top of me again. My GP was very understanding and I was back on medication.

By the time Cameron was about 12 months old, and I had an annual mental health review with my doctor, we both agreed that it wasnt so much depression any more, it was more anxiety. There is a fine line between depression and anxiety, often symptoms overlap…but we were confident that this was the case in this situation.
Little things would set me off. Passing a police car while driving was a major trigger! I didn’t even have to be speeding, but I usually had to pull over because my heart was racing, my breath was short and I felt like being sick. A few minutes later, I could carry on.

Anxiety attacks really suck!

Anxiety attacks really suck!

Occasionally, a panic attack would occur for no apparent reason. I remember one where I had spent the morning getting ready for one of the kids birthday party at our house. Everything was fine…I was happy…everything was sorted and ready to go. When guests started arriving, I suddenly had to rush off to my bedroom for one of the worst panic attacks I have ever had.

Thankfully it left as fast as it came, and I walked back out to the party, with guests none the wiser of what had occurred.

A trip back to the GP and a change in medications fixed that back up.

About a year later, I was able to ease off the medications again, until only a few months ago.

When my anxiety is high, I get very aggressive. Nothing can placate me. My husband urged me to go back to my doctor again. Off I went, where discussing it, the diagnosis changed to situational anxiety.

Basically, I’m not anxious ALL THE TIME. Put me in a high stress situation, you start seeing snippets of anxiety poking through. If you keep prodding me during those moments, it quickly escalates until….KA-BLAMMO…explosions and fireworks, or a panic attack occurs.
Considering the amount of pressure I was under at the time with work, and drama in the family life, these explosions were happening a little too frequently. So I am currently back on my medication again.

It’s not making me feel any different. I am still my happy, chatty, normal self….but when I am dropped in those high stress moments, I am able to cope better.
But it’s not all about medication. You have to tweak your life and environment to help as well.

Support networks are a massive help to me. My friends who pull me out of the house to catch up (and wont take no for an answer!), my online communities allow me to vent, there are so many communities out there in cyber space aimed at depression/anxiety support, for me it is through my parenting communities….they understand most of all since they have families as well. Maybe it is the anonymity of cyber space that helps to spill the beans?

Deep breaths...that is the key

Deep breaths…that is the key

Mediation helps to clear the mind…switch off from all the thoughts of what’s going on, what has to be done…and just general negativity.

Writing is my biggest outlet. It helps me process and deal with my emotions. I cannot recommend enough to people to write their thoughts down. It’s very soothing, and years later, you can look back on it and see how far you have come in the process.
This story may come as a surprise to some of those who personally know me, because while I don’t hide the fact that I am dealing with depression/anxiety, I don’t advertise it either. Some family members didn’t even know I had depression until years later.

I just wanted to share my story in the hope that if someone out there is going through the same thing, they understand that they are not alone, and I urge them to get help! Anyone of you can contact me via email (bellasblog@hotmail.com) if you ever feel overwhelmed and just need a listening ear.

Your life will better for it with some help.

Bella 🙂

Heels are optional

It is nice to pamper yourself every now and then. As I type this, it is a Saturday night, kids are in bed (hopefully sleeping), with a glass of wine in hand.

I have also straightened my hair, donned makeup and put on a pretty dress!

It is something I like to do regularly…even if I am just at home and my husband is the only one to see it. But it isn’t for him, it’s for me.

As a busy mum, I very rarely get a chance to go out, let alone dress up to the nines in the process. For as long as I can remember, I have enjoyed dressing up, styling my hair and applying makeup in the privacy of my home. Maybe it stems back to that little girl in all of us who used to play dress ups…maybe I never really grew out of it.

In the words of Christina: "I am beautiful, in every single way!"

In the words of Christina: “I am beautiful, in every single way!”

But for me, it gives me a chance to feel pretty, pamper myself and generally feel good about myself.

I was talking about it recently with some of the carers at daycare, and I admitted my weekend indulgence, while they laughed, they actually admitted (especially the ones who are mothers themselves) that it is a good thing to do.

So, go ahead… spice it up, spritz that perfume….make yourself feel good and boost your self-confidence, for no one elses benefit but your own!

 

Bella 🙂

Expectations of the modern mum

The 50's housewife

The 50’s housewife

While browsing one of my parenting forums recently, I came across a post from a mother who felt overwhelmed by the pressure of being a “do-it-all” working mum. It inspired a blog post and I thought I would share my words of wisdom.

As mothers, we are our own worst enemies. We expect way to much of ourselves, because we feel that is what “society” demands from us. The bar is set so high, that we often set up ourselves for disappointment and stress.

We are to be the “50’s housewives” who prepare homemade, wholesome meals for our families, keep the house sparkling clean, cater to our husband’s/partner’s every need, keep our kids in full control all while looking immaculate.

We are now expected to be able to drag ourselves away from the arms of our children and contribute to the workforce and household finances.
Men being the sole bread-winner are a thing of the past, however, “society” expects us to fulfill the “50’s housewife” role as well.

Then there is the modern-day reality…

The modern "do-it-all" mum

The modern “do-it-all” mum

We are willing to throw a store-bought, pre-cooked meal in the oven for 40min before slapping it on plates in front of our family. Our homes have dust bunnies- waving at us in plain sight. Our husbands/partners are occasionally left hanging. Kids draw on walls and climb the curtains while running around the house like cowboys and indians in full battle-mode.
We are also often seen in tracksuits, spew and coffee-stained t-shirts while our hair has distant memories of a brush.

And you know what?? That is acceptable too!

I am proud to be the modern mum I described. My family is happy and thriving. That is the only thing that society really expects of us.

Don’t judge yourself, or others, on the stereotype of a bygone era.

 

A mother's reality- take some time out for yourself!

A mother’s reality- take some time out for yourself!

Sit down, grab a magazine, chuck in some earphones to drown out the noise of screaming kids, and smell the coffee! Your family…and your sanity…will thank you for it!

Bella 🙂

*Cough, cough…splutter, splutter*

I have split feelings when it comes to winter.

Special family moments in winter ;)

Special family moments in winter 😉

I love the weather because it is a great time to snuggle under blankets on the couch with hubby and/or kids and lazily watch movies. I have a hot body (I still have fans blowing on me in bed during winter!) and thankfully live in a town with a cold environment (even in Australian summers, it doesn’t get very hot in our town)

My biggest excuse for loving winter is that is easier to warm yourself up, than it is to cool yourself down. I don’t cope well in heat…at all!

But on the flip side, I hate winter for all the extra dramas it brings. This is when the anxieties about CF health rise a little more. You keep you fingers crossed that you don’t catch winter bugs, or that they aren’t severe/last long. Puddles are looked at with dispair…imagining all the bugs swimming around in the water…which tend to be more dangerous to those living with cystic fibrosis than the average person.

It is also when my daughter’s floppy airway act up more than usual.

Due to weak lung muscles, Eva develops nasty, croup-like coughs, which can last anywhere from a few days, to a few months! It is a deep, dry, barking cough. It gets worse in the cold air or at night, and worse again when she lays down at night.

Last year, we were very lucky to escape with only a few coughs that only lasted for a couple of weeks at a time.

Coughs suck!

Coughs suck!

This year, winter isn’t even officially on us yet, and I have major concerns about her current coughing spree (which has currently lasted about four weeks.)

We had driven to Perth the morning of our last clinic visit, after dropping our older kids at school. It had barely been ten minutes since we dropped her off (and we hadn’t even left town yet) when I got a concerned phone call from the school asking for details about the bad cough. I told them about her floppy airways and the history of coughs, and advised them to keep her inside where the air was warm as much as possible, and to call my mother in law (who was looking after them while we were away) if they felt she needed to go home.

This was when I decided that I needed to address the issue with the specialists when we reached Perth.

Later in the day, after Cameron had completed his CF checkups, I changed the topic to Eva.

The doctor advised to do one week’s worth of antibiotics, and then a week of Ventolin ( a reliever inhaler) just to gauge the benefits of each individually. He was quietly confident that neither would work, but it was worth the test, despite the fact it isn’t a wheezy, asthma-like cough.

After we returned home, we started the antibiotics. No dramas- we have been through this part before. Nothing really changed. I rang the specialists last week to double-check how much Ventolin to give her. They advised twelve puffs, four time a day. I felt this was a bit of overkill. As an asthmatic myself, twelve puff is how much you have when you are in the midst of a full-blown asthma attack, and that leaves me (a tall, overweight adult) feeling shaky afterwards due to overdose.

Hubby and I talked about it, and agreed six puff, four-time a day should suffice (before you say it, I know we aren’t doctors, and should be following specialists orders) But it felt extreme to be going through half a canister of Ventolin a day!

We did about two days of inhaler treatment, and her cough started getting worse. She ended up getting sent home from school on Thursday after about an hour as she was in hysterics over her cough, and kept trying to lay down to sleep on her desk. This change came about after only one day of treatment.

Nebulisers help soothe airways and can help loosen mucous

Nebulisers help soother airways and can help loosen mucous

Thursday night was a nightmare. I haven’t heard her cough like that in a very long time. There were times in the night that it sounded like she was going to vomit. But there wasnt much more we could do. We had a heater in her room, raised her bed head so she wasn’t lying flat and even at the point of giving saline (salty water) nebulizer to help ease the lungs.

Ventolin was making things worse, and only leaving her shaky afterwards.

So I rang the specialists today to give the update. The consensus was to take her off the Ventolin and start oral steroids. Apparently, there is a small percentage of children with floppy airways where Ventolin has the opposite effect. Since it is a muscle relaxant, it just loosens the already weak muscles even further.

She hasn’t started the steroids yet, but I will keep you updated on their effects.

But the symphony of coughs and splutter in our house is the biggest reason why we dread winter.

How do you combat the winter months?

Bella 🙂

Open letter to my friends

To my friends (you know who you are!),

I am sorry that we don’t get to catch up very often. I honestly miss the moments we have together, whether they are coffee or wine infused! I had to write today though to express who much I love, respect, thank and even miss you!

Friends come and go. But the ones who stick with you during the hard periods, they are the special kind.

When I had my first child just as we hit our 20’s, you were the ones who realised that I couldn’t drop everything  and come to a last-minute party, or go to the pubs, anymore.
You still made the effort to include us in your lives.

Thank you for making the effort to catch up despite my hectic life!

Thank you for making the effort to catch up despite my hectic life!

When more children came along, and it was even harder for us to have a night out, you didn’t ignore us/drop us, you still invited us to barbeques, included my children, or said “So you have the kids at home today? We will come to your house then for coffee!”
You even visited when I was in hospital after giving birth. Outside of family, not many friends actually visited, I don’t think you realise how special that made me feel!

When our lives became more difficult due to the fact special needs cropped up, again, instead of walking away from our friendship, you said “What can I do to help?” or “How are things going at the moment?”

You take a genuine interest in our struggles and our lives. You want to help. I recognise that!

When we come to your house, you see that I am worried about my kids running riot and trashing your house. You make us feel welcome, accomodate us and tell me “It’s ok!” when my kids have made themselves at home and made a mess of your living room.

I know you don't mind too much, but I don't want to trash your houses!

I know you don’t mind too much, but I don’t want to trash your houses!

You make sure that my youngest son is allowed to have something to eat, before you hand it over, just because of his medical condition. You are aware of the need for this.

You drag me away from the kids if you see me hovering over them, and tell me I am supposed to be enjoying myself when I am at a party. You remind me that it is ok to release my control and anxieties.

You understand that it can be a long time between catch ups because I am busy with work and/or child responsibilities. You work around it, and you dont judge me for it, and you don’t forget about me.

You have no idea how much I love and respect you for the support you constantly give me and my family. My love and respect grow every time you interact with my special needs children. When my children show you something, you act like it is the coolest thing you have ever seen! You don’t ignore them and fob them off. My middle son, Ethan, has a hard time opening up to adults, yet I have memories where I watched in amazement, where he would sit in your laps, open up, and not want to leave your sides. You made him feel loved and secure. I don’t think you realise how much of a rare event this is, or what you did for him in that moment!

There are bad experiences online, but I am lucky enough to find great friends online

There are bad experiences online, but I am lucky enough to find great friends online

To my online friends- although we have never officially met in person, I hope to one day. Some of you I have known for almost eight years. We have laughed together, cried together, shared tips and advice. When my children with born, you rejoiced- sending me messages and gift of congratulations. The horrible period when my youngest, Cameron, was diagnosed with cystic fibrosis, it was the first time that any of us had been diagnosed with a serious condition. I contacted some of you to spread the news. Little did I know, you all rallied together, chipped in some cash, and sent Cam and I a care package of flowers, a teddy and much need chocolate to the hospital. I cried when it arrived. I felt loved and thought of. While I am no longer in contact with some of you, I still respect you for the friendship you extended to me.
One day, I will meet you, but in the meantime, you know that you can contact me, good or bad, about anything. Despite not officially meeting, I still consider you some of my best friends. I hope you feel the same way about me!

To my husband’s friends- I love and respect you for when you call and my husband isn’t available, and you will spend at least half an hour just chatting with me, asking about me (or Mark) and how our kids are, how life is travelling (instead of just saying that you will call back later.) Or when we are actually managed to catch up, you will actually sit next to me and chat.
I have immense respect for the fact that you seem to actually like me for who I am ( not just as your mate’s partner) and take a genuine interest in our children and our lives. Both Mark and I express our regrets that we can’t catch up nearly enough! 😦
I feel like a terrible friend because we don’t catch up often enough, and I can’t possibly return the sentiments that you give. I can only try! I honestly don’t feel like I have articulated well enough how I am really feeling, but I hope you are starting to get
I don’t tell you often enough, and I can’t express enough, but thank you, and I love you!

Bella 🙂
xxxx

Never ending- an update

I have been a little quiet lately. My poor husband has injured his shoulder quite badly, which means I have been helping out by covering his work in our cleaning business. It is going to take a while for him to recover, so if you don’t hear much from me over the next few weeks, that is the reason why.

I wish to thank everyone who gave advice about the constipation issue we have been having with my middle son (both on the blog post and on the Facebook fan page.)

Our GP has the series of these books displayed in his office since his name is Toby!

Our GP has the series of these books displayed in his office since his name is Toby!

We have started seeing our GP (general practitioner) doctor for the issue. This guy is awesome. He managed my pregnancies and tried to deliver my babies (if he made it there in time!) He also broke the news of my youngest son’s cystic fibrosis diagnosis, which affected him greatly, as it was apparently the first time he had to break “BIG bad news” like that, and he knew our family quite well. He apparently admitted to my mum the night of diagnosis while I went home to pack bags to be flown to the next hospital that he was somewhat glad that it was me that he had to give this heartbreaking news to. It’s absolutely not because he didn’t like us and wished us hardship…it was because he knew we could cope with the diagnosis, and that I was able to hold myself together while he broke the news (I guess in comparison to other patients, who probably would have fallen to pieces.)
He has since managed Cameron’s CF as best he can under the guidance of the CF team in Perth (since we are country patients), the team love him for his support and the fact that he follows their directions…apparently something not all doctors do in their experience.

I trust my doctor completely. I know that he will not stop until we have answers, and he is willing to go above and beyond for his patients. He also knows that if I come to him with an issue, it is a legitimate worry, I’m not just arriving in his office for a sniffle or a meagre problem.

Mutual respect is essential with your doctors!

When I arrived two weeks ago with Ethan in tow, and told him of the serious issues we were having with the chronic constipation, which has caused us to make three visits to the emergency room since the start of the year, numerous amounts of medication (laxatives, suppositories, enemas….tried it all), and the issues the fecal overflow/accidents in the underpants was causing both at school and at home…he immediately took action. We are currently giving high doses of different laxatives to clear out Ethan’s intestines. He is on Movicol twice daily, Actilax twice daily, and Parachoc twice daily. Basically, we wanted him to get to the point of diarrhea to flush out his system before we take the next steps. In no way was he allowed to get even remotely constipated in the next two weeks, or basically, we would have had to start all over again

It took about a week for all the laxatives to take effect. After two weeks of all this medication, we went back to our GP for another assessment (this happened only yesterday.) The doctor was very happy at how much better his stomach felt…nice and soft, rather than lumpy and hard in places. He was also very happy to hear that Ethan isn’t having as many accidents in his undies. It used to happen about six times a day. It now happens only a couple of days. Still a drama, but definitely an improvement!

We are to continue the laxatives for another two weeks, but this time, add Benefibre to his drinks daily, which will absorb some of the extra fluid in his tract, and make his stools a bit more solid. We return in two weeks for another assessment to figure out where to go from there.

We also saw a dietician, as part of a feeding team, to assess his food aversion. This woman told me that Ethan’s diet isn’t too bad. I really don’t agree with that (neither does my GP), but I have taken steps to change that. We have increased his water intake, and I have started making muffins/cakes to put in lunch boxes or to eat as snacks at home, which is loaded with fruit and veggies (recipe at the bottom). We are going to try different types of milk when he has finished his medications, just to test a theory that there might be a bit of an intolerance causing the constipation. Ethan’s main “homework” is that he has promised to try at least one new food before we see the dietician again. He has agreed to try chicken…not chicken nuggets, but real chicken (we haven’t tried it yet.) He has also had a bit of a nibble on a carrot, after our babysitter (who he has a bit of a crush on) enticed him with a promise of a hug and kiss if he would at least try it. Since he is very much a Casanova, the ploy worked!

Basically this is going to be a long, ongoing battle, but I will keep you all updated.

Bella 🙂

***Here is my cake recipe. It’s a bit of a “thrown-together” recipe, as I just add whatever I have in the cupboard until it looks about right, but feel free to make your own tweaks:

Bella's fruit and veggie cake

Bella’s Fruit and Veggie Cake

1 carrot, grated
1/2 small zucchini, grated

Large handful baby spinach, finely chopped

2 apples, grated

1 pear, grated

2 eggs

40 ml oil

1.5 cup Self raising flour

60 ml milk

1) Combine all grated fruit and vegetables in a large bowl. Add eggs, combine thoroughly.
2.) Add milk and oil to bowl, mix thoroughly. Slowly sift flour through mixture in parts.

3) Add more flour or milk to reach desired consistency
4.) Pour mix into a large, grease cake tin, or separate into muffin tins.

5.) Bake at about 160 degrees celsius until golden and cooked through.