And so this is Christmas

Well in a week it will be :) The girls have finished school. They both got fantastic reports and even better, fantastic comments.

I am so looking forward to none of the rushing around that school life entails. I love the days when they can play together and we don't have to leave the house.

I can't believe Christmas is nearly upon us. I love Christmas. I have some amazing memories of Christmas past.
When I was younger and we lived in Darwin it was always a day full of cousins, food, noise and fun. We moved to Perth and it all was different. No cousins and lots less people. Then we created our new Christmas and there were friends who became the family we chose :) We would gather and eat, and the adults would drink, and we would all play board games. There was often a stray person that a family adopted for the day and there was much much laughter.
Then older again and my friends had this tradition of Boxing Day Cricket. We would all gather and the boys would play cricket, most of them anyway. I would be a spectator, and champagne drinker with the ones who didn't play. Then they started to get girlfriends, so I wasn't the only girl there anymore. Then Christmas Eve became either a night at the local pub, catching up with what seemed like every.single.person that had ever lived in our town that came home for Christmas. Or another friend had a Christmas Eve gathering at his house.
They were great times. They seem like another lifetime ago now, but I still remember how carefree those days were. They were full of friends and fun.

These days I live on the other side of the country to those friends. And we made our own traditions again. And I got married and we again made our own traditions. Gone are the Christmas Eve late nights at pubs or with friends. Instead we sneak around building bikes, wrapping presents, stuffing stockings. We get excited imagining the girls faces as they walk out to the Christmas tree laden with presents. Life has changed, but I am somewhere I am content to be. I am blest to be able to have such good Christmas memories :)

It's just not fair

She's sick again. She's cranky...really really cranky. And her trial of Intragam has finished. It had too, it's the rules of the blood bank and none of us want her to stop it, but she has too. They are expecting her to go back on it in a couple of months, in time for winter, and then she will be back on it for life.

We need to see her paed on Friday. And he quite possibly will put her in hospital for 2 weeks. And that means she will miss her first ever school excursion. And that sucks. A lot. I know in the grand scheme of things an excursion isn't a big deal. But it is for her who has so many not normal things in her life. For a short time it would be nice for her to be able to do all the things other kids do. To feel just like all her friends. She knows she's different. And at 6 different is not a great place to be. I really hope she gets better before Friday. There is probably more chance of us winning lotto than that happening.
Maybe there is an antibiotic we can use at home to stop hospital again.
I'm tired already and I wish for a little while she could just forget she was sick....

I wish she didn't have to

Our big girl is gorgeous. She has a lovely nature and people always always comment on her kindness, her gentle heart, her caring nature.

She at times isn't those things at home, but hey, none of us can be like that all of the time can we :)

She adores her little sister. At times, that little sister is really annoying...really really annoying and demanding and loud and sometimes mean.

Chloe has another infection. Quite a bad chest infection really. And Jess also has a cold. Jess gets a cold like other kids get, miserable, cranky and then better. The way Chloe never does. Never...ever...

Anyway...the girls were in the toyroom playing and Chloe was coughing coughing coughing. Jess says " I wish I could take your sickness Chloe and you could be better and I would be sick instead"

And it made me teary. She has such an amazing heart. And she loves her sister so much. And I wish she didn't have to think about the seriousness of Chloe's illness. And that she didn't have to know how damn hard it is to be in hospital long term. And that I wish she had no understanding of illness at all. I wish her biggest thought processes revolved around what book to read next, what Hannah song to sing next and what Christmas presents she will be getting soon.

And it doesn't, and it can't, and yes I know she is amazing..but I wish she didn't have to be.

Here we go

Again. Round and round it sometimes appears is the direction our life goes in.

She's sick. Not so sick that we need to race her to hospital. Just altogether exausted, constant low grade temperature, looking awful sort of sick. She's breathless, and more breathless than I remember her being for a long while and that sort of scares me a little. She can go from ok to sobbing hysterically in less than 10 seconds. She has people that don't know her asking me what's wrong with her, she looks like she hasn't slept in weeks. So yeah, she's sick.

We are in our final week before Intragam time. That is always a shocker. Even when she is "well". It is when her immune system is returning to it's crappy normal existance. So she is tired, catching more of everything and feeling not so great.

I am glad we are seeing our paed( I know he's technically hers as he is a child doctor but hey he is such a part of our life that I think we have earned the right to say he's ours :) ) on Thursday when she has her infusion as I want him to give her an all over check out to see if he can figure out what is going on.

So it will be a long few days with a little girl not very well. Feel better soon princess xxx

The wisdom of 6 year olds

She is wise beyond her years our youngest daughter, and never fails to make me laugh.

The bath last night. The girls playing at being adults. Jess says to Chloe, where's your husband ?
Chloe says " Oh I broke up with him"
J says " Oh no, why ?"
C answers " because he got dumb and I can't live with dumb "

Precious girl, no person should have to live with dumb. Now please hold onto these thoughts till you are an adult :)

The week that was

It was one of those weeks. Monday we headed up to see the paed. Who we really respect and like, who cares for Chloe like she exceptionally precious. Who has made some calls that appear left of centre, but are then correct.
But this appointment wasn't really for the medical stuff. Of course it ended up being. It was infusion time this week. And Chloe has crappy veins (that is the nice way of describing them:) ) And I am not exagerating when I say that dr's fear having to cannulate her. Partially because her veins are so bad but partially because they really know her, they really like her, and they hate having to put her through it. It is not that they don't like the other kids, no no no. It is just that many of those kids are one off stays. It is horrible cannulating them, but then they go home and lots never ever return to hospital as a child again. So the pain is still the same but they don't have to do it over and over.
And our paed wanted to send her to theatre to have a drip put in every month. The anaesthetic gas makes veins pop up. Sounds ok. Except she has a fear of the mask that contains said gas. A huge fear. The thought of it causes her to hyperventilate.
(Yes we are seeing a psychologist to help our baby with these awful fears, that are her realities)
And she had a bad reaction to her last anesthetic. And she has crappy lungs. And a bit of a crappy heart. And you know she has so much medical intervention we just don't want unnecessary stuff.
So we went up and we had our chat. And he agreed. We could try one more time on the ward. So Thursday it was infusion day. And so much relied on this working. Not just that it was nicer for her. But that our paed put himself out there again for us. First time failure. I couldn't look at Greg. Second time...it was in. Not quite success. Drips have tissued 5 mins after insertion and also 15 mins after insertion before. No one breathes till the line is flushed and then fluid is attatched. And it worked. And we breathed easily for another month.

So that was one part of the week that was.

One other thing came of our visit to the paed. Chloe's fingers have started to club. Shit. I didn't want that to happen just yet. It's something that happens in people with lung and heart conditions. Normally it happens when there has been a shortage of oxygen for the person. Yes I know she has lung disease. But I sort of thought we had it semi (sometimes badly) but semi controlled. So that sucks. But anyway.

Then the other part. The bit that has made me angry. I am not going to write too much. It has to do with school. And some incredibly unprofessional things that were said.

So the week that was...that's it.

Looking back

I never really understood when people said they blocked out bad things from their memories. How do you do that ? Isn't it there anyway ?

Last year as I have said before Chloe had a thrombosis. A deep vein one. And I blocked out the memory of the day we discovered it. Blocked it right out as I realise now I couldn't handle the awful reality of what it meant.
The day we found out it was there, we needed to remove her PICC line ASAP. There could be no waiting. The NUM came down and told us what had to happen. At the time I thought it was nice she did (yes I am delusional at times) that she just wanted to make sure we were ok. We knew that it was there by this stage so that wasn't a shock, we discovered that a little earlier. It was nice she did, and I know she wanted to make sure we were ok, but she also knew the potential seriousness of it all. So Chloe was sedated through her drip, off to a wonderful land :) We were on the ward and in the treatment room. And there were 4 registered nurses, including the NUM and oxygen and resus equipment waiting. That was the bit I forgot. The bit where they needed to watch her O2 sats so closely as removing the line could have dislodged the clot.
All we cared about was getting rid of the line. I forgot the look of worry on the faces of the nurses who adore her. I forgot the looks they all exchanged as the line was removed. I forgot the fear that permeated the room we were in. I needed to forget it I now know. I needed to not look backwards with fear as then we had to begin anti coagulant treatment which all by itself was traumatic. I needed to concentrate on her, not on the could have beens. And the nurses did such an amazing job of staying calm. And for that, I thank them.
And you know, it was ok. And you know I will never ever take for granted my children's lives again. We were so lucky. And we had our own little timb bomb ticking there for 6 weeks, as that's how long it took for the clot to go.
And since then we are all a little jumpy. Chest pain (that goes hand in hand with chest infections ) always evokes the fear that there is another thrombosis. Sore leg...the same. Has it come back ? It may at anytime. We won't ever breathe so easily again about anything. But we will always treasure the moments as you never know when they will be taken away.

I wouldn't swap it for the world

So we all know it is tiring to be in the situation we are. A child with a chronic illness is exausting. The continual reevaluation of what we are doing. The therapies. The dr's appointments. The medication regime. The dealing with dr's, teachers, receptionists, well knowing people, it is tiring. The sleepless nights when we listen to her breathe, when we see her breathing falter a little. The sleepless nights when I lie there worrying that we are doing the right thing. The fear that the next infection could be the one that puts her into PICU or worse.

But I know we are lucky. So so blessed actually. We get to experience all of this.
Most days walking the girls into school I pass a car that has a website address on it. It is the car of a teacher at school. They lost their little baby girl earlier this year to whooping cough. And I know they would give it all to be able to be looking after her on earth still. I am reminded every day that our stress and worry is nothing compared to the grief of parents who lose their children far too early. I know that their sleepless nights eclipse ours. I know that no matter what she is here and she is gorgeous and we are lucky. And the heartache we experience pales in comparison to the heartache of not being able to do this anymore. We are lucky.

It is tiring

What a week and it's only Wednesday now.



One of the hardest things for me, and I know others in similar situations, is the vicious circle you get caught up in of trying to do the best for your child, please lots of other people and still maintain your sanity.



The dealing with drs. Well mostly it is fine. But sometimes drs suggest things we as parents don't agree with. So we question their choices. And on a good day, they are ok with the questioning. But they are human and they have bad days. And on bad days they get defensive of what they suggest. They believe that they truly do know best. And sometimes they do. But sometimes...just sometimes there is more to a patient than they see. And then when you question, you risk upsetting the calm of the room that your child depends on to see them through. It is our job as her parents, to give her the feeling of trust she needs in these drs and nurses. If we disrupt that calmness by our questioning, leading to unrest in the adults, then she loses her feeling of security. And she needs that, so so much.

And then there is always the knowledge that if we refuse things, then we can be seen as neglectful. And although people may laugh and doubt that anyone would call either of us neglectful parents, I do know it does happen and the system is designed to pick up this. And I can't argue with a system that sometimes gets it right where kids are concerned.

And then every man and his dog has an opinion of what we should do. And sometimes that is hard for us to deal with too. If we ignore that in their minds we are not doing all we can to help her. So someone, somewhere often thinks we are doing the wrong thing. And that knowledge sometimes for us is really hard to deal with.

And then you add in school. And the different people we need to deal with. And the fact that a medical professional suggests one thing, the school disagrees. What do we do ? Do we agree with what the medical professional says and isolate the school entirely. We do actually agree with the medical professional so now we need to challenge the school. And it is not personal you know. When I ask questions of the people at school I am not attacking them. Every day I am grateful for what they do. But I am her mum. And I need to do what is right for her. And sometimes that means I question and I challenge. It is not personal. It doesn't mean I am not grateful. It means that I need to do what is presented to us as the best long term situation. And I am sorry that it appears I am not on their side.

When do you go

From little girls toys, to CD's and big girls things. To pretty stationary and diaries to lock your secrets away.

Jess was 9 last week. Nine. Where did that go ? Where did that gorgeous smily baby go ? Who gave me a big beautiful smiling fiesty girl in return.
So Miley Cyrus, Hannah Montana, Camp Rock, and High School Musical stuff is now even more in evidence in our house. She's such a bookworm though. Every book she was given was cherished. My mum and dad gave her a couple of books as part of her present and she disappeared off to read them while they were still here :)
We were on holidays , up the coast at Burleigh Heads for her birthday. She chose to go into Surfers Paradise and to Timezone for her special day. We all swam in the pool at our apartments and had a really relaxing day. It was a great celebration of our biggest girl.

Beautiful big girl, we love you so. You are so patient and long suffering when it comes to your little sister. So often you just get on with it, in the midst of the chaos. Your smile truly brightens rooms and even now 9 years on strangers comment on how gorgeous that smile is. You are funny, clever, beautiful and full of a happiness that many people could learn from. We are so lucky to have you as our daughter. xxxx

I have no idea

Where they come up with some things. The girls were playing in the toy room. I was sort of listening in, and watching from the lounge room.
Jess says to Chloe who has a handbag thrown over her shoulder, where are you going ?
Chloe says "oh on a date"
Jess says "oh that will be fun"
Chloe throws her head back, flicks her hair out of her face and says " well sort of. He loves me you know, but I don't love him but I'll go on a date with him just because he loves me "

Oh my goodness I laughed. Where did my six year old learn that attitude from ?

Little pig who stole my heart

Growing up we didn't have a guinea pig. We always had a dog and at least one cat(mainly two). There were also rabbits, fish, mice (what were my parents thinking, mice are the animal of my worst dreams, well them and emus) and budgies.



Greg loves animals. A lot. So we got ourselves a dog just after we bought our house together. We were 7 months pregnant with our first princess then. I had my cat. My gorgeous Nala who I adopted and bottle fed. She fitted into the palm of my hand and I had to set my alarm to feed her through the nights. Nala loves Greg. She decided he was hers as well and in the way only cats can she walked into his heart.



Just after Chloe was born we found ourselves with a little white guinea pig. Rolie , Jess named her. After Rolie Polie Olie, a show on Playhouse Disney. I had never had a guinea pig. My cousins had had one though. Anyway this little piggy was pretty cute. She was a bit fiesty and quite brave. She loved our cat and curled up next to her. She became so so tame so quickly. You would turn around and there she was. This little piggy. Chloe in many ways is her father's daughter. She is a mad animal lover. And Rolie was her buddy. Greg built a box for the back of Chloe's bike and she rode, slowly and carefully with Rolie in the back.

Rolie would squeak at us when we went into the backyard. She knew when we had food for her. Chloe would push Rolie in her pram. Rolie was the third player in so many games the girls played together. Rolie was a huge part of our lives.



And last night Rolie died. I can't believe a little pig can make me cry so much. She was such a character. Thanks little pig little pig for making us all smile :)

Some words

Not mine, but I read them tonight and they rang true for me.

"In the midst of winter, I finally learned
That there was in me an invincible summer"

Gosh we're struggling at the moment. Struggling to keep putting one foot in front of the other.
Struggling to parent two girls with such different needs. Struggling to maintain any sense of order.
Struggling to see the bigger picture.

Tomorrow we have an appointment to see the paediatric cardiologist. I am a little bit scared. I mean I know her lungs are crap. Her heart had a couple of little issues and my mummy gut feeling tells me they have worsened. I don't want that. I want something to work well for her. I want to throw away the concerns and let her be a little girl again.

She is sick. If I wrote what has happened in our house in the last few weeks...you would think I was making it up. I wish I was.

Until tomorrow...

You know what I hate

When people say things like "you must have been a terrible person in your last life " or "you must have killed a whole village full of chinamen" when we are talking of health issues.

I understand people don't know what to say. Look there are days I don't know what to say either. And I get that blaming God is an easy thing to do. But you know...in my world it doesn't work like that. My God doesn't punish a child for the sins of their mother or father or of someone in a previous life. He doesn't say well that Therese was a naughty girl so I will make her child ill. Really...my God is not a punishing God. Bad things do just happen to good people. And hey good things happen to so percieved "bad" people. It is just the way life is. I cannot spend my life looking for the reasons. Or I miss the moments. the magic moments, the mad moments, the just being moments. Those moments are what it is all about. And looking for the why's ? Well that is wasting what we have been given.

I hate having a sick child. I hate dealing with all the emotional stuff that goes with it. But I love her. More than life itself. And so I will deal with it. And maybe there is no reason for all the suffering. But maybe my God knows more than we do, in fact he does, and one day I will understand. And until then, I love her and I get on with it. And I remember that He is always with me.

You have to laugh

Or else you would cry..either that or you would take to a quiet corner with a bottle of scotch at 10am...

School..(a whole new post in itself.)..has meant Chloe has been sick. There is a whooping cough epidemic on the north coast (and in some other parts of Australia too) Whooping cough really scares me. Chloe's lungs are comprimised enough, she really doesn't need anything else. Thursday morning I found out Chloe was exposed to someone who had been exposed to whooping cough. By the afternoon after the school had rung the health department, and the exposure wasn't enough to cause any issue at all(thank goodess)
Then about 6pm Jess comes in off the trampoline. Mummy I am itchy. She takes off her school shirt. There are little pimples, filled with fluid. Yes exactly like chicken pox. She's immunised (we all need to keep up to date with our immunisations as Chloe doesn't form antibodies to them like the rest of us do) Friday morning I took her to the dr. Yes he confirmed it.
So we watch, and we wait. And we pray.

It did get worse

Never again will I say that was my worst day. There can be worse. We then experienced worse.

After that horrible Friday when the PICC line was placed, Chloe refused to weight bear on her leg. She said it hurt, a lot. She is not a whinger and so we all listened. Originally her paed was pleased as he wanted her to stay off her leg. By Sunday it was odd that she refused to walk...at all. So Monday came and it was off for an ultrasound to see what was going on. Jess was supposed to be at school and Greg at work, but it rained and Jess was very sad so they decided to come up and see us. Thank goodness Greg was there when all this happened. He kept me grounded and him being there meant we supported each other.
So off to the ultrasound Greg and Chloe went. When they returned Greg said"they think there is a clot" Our paed rang. The registrar came in. The NUM came in and said the PICC line is coming out now. So through her drip C had some magic medicine that made her all dopey and drunk and they removed the line. We were then on bedrest so as not to dislodge the clot and we would reultrasound the next day.
The Tuesday showed the clot was larger, in her groin, knee and calf. And we had to start anticogulants. Needles into her tummy twice a day. It was awful. So so awful. She hated it. Apparently they hurt. A lot. Their were nurses so upset by all of this. She is so so brave but my god it is so so unfair.
Lots of phone calls to Brisbane. Our paed was a legend with all he did. The nurses were amazing as well. I will never cease to be thankful for all the support they gave me as well as Chloe. They hated it as much as we did as they are a little besotted with our youngest daughter.
We went home and had to return for the needles. The NUM thought I should be taught to inject her at home, so as the disruption was less. I agreed. Some nurses, especially the ones who hadn't nursed Chloe, thought I shouldn't. That it would effect her relationship with me.
Kerry and I disagreed. Chloe is mature enough to know it had to be done by someone.
God it was awful though. I hated it, Greg hated it, Chloe hated it the most.