Tag Archive | friendship

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

Camaraderie

Being as CF parents can be likened to the military. I know that sounds weird, but let me explain…

If there is a call to arms in the military, men and women everywhere drop what they are doing and rush to help. There is a certain type of friendship and understanding between them. They understand what another is feeling, can relate to their experiences, they trust each other totally. This is called “camaraderie”.

Being a parent to cystic fibrosis is no different. If someone calls out that they are having a bad day, or need help/advice, there are a mass of people who will drop what they are doing to offer their support. Whether it’s a virtual hug online, or a pat on the shoulder saying “There, there.” Everyone nods along when you relate your experiences. They know. They have been there. They have lived it.

I have met many wonderful people since my son’s diagnosis. There are some that I have physically met, and others who have only shared our experiences online, but there is a connection with these people that I struggle to have with people I have known my whole life.

These people are fellow war fighters.

From our experiences, no matter what our background is. We have a common ground that allows us to bond in a way that others cannot. I find myself being able to open up and talk to these people in ways never before. Instantly, I felt like I had known these people my whole life. They know my most inner self like their own best friend. Like being in the military, it can only take first-hand experience to be able to truly understand.

I am thankful for my comrades. Who knows where I would be today with out them. I hope they know exactly how special they are.

Bella 🙂

12th June, 2009

This date is very significant to our family.

At 5pm tomorrow evening (the time I was told the massive news), it marks the two-year anniversary since my son was diagnosed with cystic fibrosis. That was the night that our family’s lives were irreversibly changed.

If you want to read more detail about that eventful night, you can read about it here. I have been told it is a bit of an emotional read, it was certainly emotional for me to write, and it took quite a few hours to get the words out.

But believe it or not, the last two years have been amazing! Any expectations about what could have happened in this period has been blown to smithereens!

I was fully expecting to have had at least two or three more hospital admissions racked up by now. But he hasn’t been hospitalised since his diagnosis. Sure, there have been a couple of close calls, and of those times, only once were we starting to figure out plans what would happen if he had to go to hospital in Perth (reminding you, Perth is 4-5 hours away from our town) How would we get him there without taking too much time away from our cleaning business, or taking the other kids out of school, or leaving my husband without the family car? Who would look after the kids while I am in Perth chaperoning my son in hospital and my husband is working the early, and late, hours he does?

These are questions we have to answer by the time his next admission comes around. Being that it has been so long, and he has thankfully done so well, I am expecting a bump in the road soon. It’s not a matter of “if”, really, it’s a matter of “when”. So I guess we really should have some contingency plans in place.

His gastrointestinal (a.k.a. his guts!) problems are an ongoing issue. It can be difficult sometimes to pinpoint what is going on, Daily inspections of poop are a fun job in this house (sorry…I know that’s the last thing you want to read about! But its the first sign for us when something is wrong.) It could be caused by any number of things. He may not have had enough tablets (the digestive tablets that break down the fat in his food. He is currently up to about 25-30 a day), or maybe he has had too many and not enough fat in his food.Has he had something with dairy in it? (as he is also dairy intolerant) Is it a virus, and at what point do we worry?

But he is thriving, and average for height and weight for his age, which makes him tall for a CF child, as their height is usually stunted.

Daily physio goes…well…ok…I guess. There are certain positions he doesn’t like me patting him down, he is either ticklish, or grumpy. Very rarely do I catch him on a good day where he will lie there and take it. It can be a ridiculous ordeal sometimes, as it usually takes my entire body to be able to pat down his little chest. I have to sit in the recliner, one arm around holding down his shoulder, my legs wrapped around his body, holding the end down so he will stop squirming around enough for me to work on him. Of course, it ends up taking twice as long as it needs too, and a lot of yelling by both of us, but I figure when he is yelling, he is taking deep breaths to do so, which is encouraged. So he can yell and scream as much as he likes!

As far as I am aware, he still maintains full lung function. His annual review isn’t until August, which is when the specialists do lung function tests and a bronchoscopy (which is a camera in the lungs, and they also take mucus samples and scrapings from the back of the throat) These test for CF super-bugs. But I will go into more detail about that when annual review comes up.

So to the family, who have babysat while we take our long trips to Perth for checkups, to friends who have been there for emotional support, and also, to the strangers, such as yourselves who are reading, for taking an interest in CF, and supporting in your own way…THANK YOU for the last two years!!!

Fingers crossed the next two years go as well…but Im sure you will be kept updated 😉

Bella 🙂

65 Roses Day fundraising update

Don’t forget that 64 Roses Day is on the 27th May (don’t worry…I wont let you forget! You will probably be sick of me by the time that date rolls around!)

Our fundraising campaign is coming together nicely. We have at least two butchers donating sausages towards our sausage sizzle, and a local bakery is donating half a dozen loaves of bread.

I have tried to shake down some florists, and have found one who is already involved in 65 Roses Day by donating a portion of their roses sales toward CFWA (Cystic Fibrosis Association, Western Australia) but they have pledged a couple of rose bouquets for us to sell. That is fantastic!

Our nearby convenience store is a liquor/bakery/cafe/fuel station, and they have pledged something from their bottle shop towards our raffle. It will more than likely be some wine or something, but anything is greatly appreciated! We are regular customers, and all the staff know about our son’s condition. One staff member had a possible CF child herself (though it was later discovered after testing that it wasnt CF). So they are more than happy to get on board.

If there are any readers out there, especially local ones, who would like to donate some produce or services towards our raffle, please let me know. It would be great if you could get on board.

But you don’t have to wait until 65 Roses Day to donate, you can donate online here (don’t forget, tax refundable!)

I will keep you updated as plans come together.

If you are in Albany on the 27th May, come down to Western Workwear and Safety on Chesterpass Road for lunch, meet the family, and you have to be in it to win it for the raffle!

Bella 🙂

Just a little bummed

Some people reading this (once I have published and shared this) may feel the way I do. Maybe I am over-reacting a little. But I am trying to deal with a loss of something that has had a major impact on my life for a few years now.

So let me start with the back story.

Not long after my eldest was born, I joined a website found on the back of a Heinz rice cereal packet. Being my first baby, and the only one in my circle of friends to have a child, I was interested in all the information provided on the website, ranging from development, to tips on feeding. While there, I stumbled across a little community in the forum.

I was a quiet beginning, but being the pushy busy-body that I am, I quickly worked my way into the thick of it. I was sharing the milestones made by my eldest, and soon, the joys (and not so crash hot parts) of being pregnant with my second child.

After a while, for whatever reason, the forum admin decided to shut the forum and reopen it on a different platform. So many of us made the jump on to the new website, and continued to share in each others ups and downs, by this stage, we were starting to share everything, not just parenting skills. We enjoyed the features the new website provided such a sharing photos, little smiley faces, the little sort of things to help us express our personalities.

Time went on, and again, for reasons unknown, Heinz admin decided to shut down the forum for good. Friendships were thick and we couldn’t bear the thought of not having each other to turn to, so a few members started up another website for us all to go to once the orignal one had closed.

Again, we all made the jump (of course, it didn’t happen without a few dramas, mainly due to one person who will remained unnamed, but some readers will giggle and know who I’m talking about!)

Once the platform provider asked us to start paying for our use, we created yet another website, and made the jump again. So you are starting to get the idea of how close we are.



These gorgeous, hilarious, and compassionate women have helped me through so much over the past  five years. They laughed along with all the funny things my kids got up to, gave great advice on things from cooking to relationships and health for both ourselves and our children. We do a christmas card list and secret santa (though its pretty obvious when the gift is from me. Since I am the only one in Western Australia. They just have to look at from where it was sent, and they know!) Gifts get sent to those who have just had a child, or if there is a significant birthday looming.

My only disappointment is that being the only one in Western Australia, everyone else is miles away and I can’t meet up with these ladies, for example, go out for coffee like some of them regularly do, or organise play dates for our children. But despite the distance, they have supported me greatly, especially so after the young one was diagnosed with cystic fibrosis. The morning after he was flown to hospital, I sent a text message to a couple of the ladies and asked them to tell everyone the bad news. Everyone felt the shock and shared the pain of his diagnosis. So, to show their support, they rallied together and sent a gift basket to the hospital, complete with flowers, a teddy for the boy, and some much-needed chocolate! I cried when it arrived! I was so touched by their thoughts.

But I have been walking around my house, moping a little. You see, we recently had a bit of drama on the website, and some members left. I guess you can’t expect everyone to like each other, but now that we have a private group on Facebook, and most prefer the features on there,  and the website is being shut down.

While I’m not losing contact with any of these ladies (well, I hope not anyway!), and I am still talking to many of them on a daily basis, but I feel like I have lost one of my best friends. We all helped to build the website. A big part of me went into it. It was like a child. We all helped to nurture it and help it grow, become something magnificent.

I don’t know why I feel this way over a website. Its stupid really. But I cant help but feel that I somehow let the site down by not maintaining input. I feel like I have let my friends down.

But I am so grateful for the friendship and support from these wonderful ladies. I am glad we can still keep in contact once the forum is gone for good.

Dont worry, I will get over my mopey-ness.

Bella 🙂