Day Off

My computer is still being a butt about photo uploads.  I have no idea what is it's problem and because of that I am working on the theory that it will just fix itself, without my having to do anything, but I'm guessing that is unlikely.  I might have to at least google the problem. 

 

Today Levi had the day off school.  He has been coughing and wheezing all night and by the morning was so hyped up on asthma drugs, I thought it unfair on him, but especially on his teacher to send him in.  I didn't have the same luxury and he just had to come to work with me.  It meant that he sat at my desk and played on the computer while I saw the kids and went to the meetings that I needed.  Levi was pretty chilled out and calm by then and he was great about staying put.  I think he was tired and sick enough that sitting at a desk for hours or lying on the floor under my desk was just what was called for. 

 

Levi is already having a better night.  Better because I can't hear him from here and even when I walk into his room, I have to be fairly close before I hear him whistle breathing.  I think that we will both get more sleep tonight.  Counting on it!!

 

My mind is a bit foggy tonight, mostly due to lack of sleep I think!

 

Good night!

Saturday

I have some great photos that for whatever reason, my server is failing to upload them!  Anyway, today was good and bad.  First off we had the last soccer game of the season.  It was a great game because it was closely matched and secondly because it was against a team that the other parents are good friends.  The kids played against each other for the game and then they played with each other in a scrap game afterwards because, of course, they hadn't used up all their energy yet.  Levi has had some late nights lately.  Last night we went to sleep around 10pm.  The night before was the sad night that I took forever getting him to sleep.  He tends to wake earlier on days that he goes to sleep later, unfortunately! 

 

After soccer we went to the dentist to get his cavity filled.  This was new for him and he had no real idea going into it, what was going to happen.  I had told him but telling is not the same.  Injecting into the molars is very painful.  Levi tolerated it all and then after she was done he leaned forward and cried and cried.  It has been a bad week for him!  At least it will encourage him to clean his teeth a little better in the future.

 

Learning?

Today I had to give a presentation on Family Centered Practice and sit on a panel for four hours and have people ask me questions.  It means that I talk a little about Frankie and what it was like to be the parent in that situation.  This was for Logan hospital and had a lot of nurses and therapists who are all very used to the medical model, where the professional 'knows best'.  In that model, the parent's job is just to bow and scrape and be grateful for the gems of therapy passed down to them.  That is an exaggeration but still parents have little control or power.

One of the things that I talk about is the things that I learned from Frankie:

 

—Even people who look like they are coping likely aren’t

—In a medical appointment, clients hear the first and sometimes the second piece of information

—If the first piece of information is hard, stressful or scary, you only hear that and nothing else

—A home programme that isn’t integrated to normal daily life is useless

No one knows what is happening at home except the people living it

That came straight off the slide but it always makes me a little sad that I can't tell the full story.  I can't tell in these high level medical presentations, that those things listed above, are only a part of the story and no the most important.  What I really learned from Frankie:

 

The value of time - I learned that each moment of Frankie's life was no more valuable than any moment of Levi's but because Frank's was shorter, it taught me to value each moment, regardless of if you have three years to be with them or a lifetime.  Frank wasn't more valuable than Levi and vice versa isn't true either.  They are seperately precious.  A child doesn't become more important than his brothers because he is dying but the time becomes a finite commodity. 

 

The value of patience - If there is anything you need with a very sick kid, it is patience.  You will need to explain the same things over and over and over again, but it isn't that interveiwers fault.  They too are doing their job.  Some better than others.

 

Don't bite the hand - Other than the quote from Madagascar (which makes me think of this all the time), I think this is an important lesson.  Even though you are tired and beyond stressed, if you yell, scream or otherwise bitch at the medical professionals that you need, even if they are saints, it will affect the alacrity they will respond when you need them.  The extension of that is also true, if you make them a part of your team, they will respond faster.  It is the Pavlov thing over again.

 

The value of stillness - I think that it is easier to be in the throes of having Frankie sick, than it was to be in the stillness after he had died.  I had been in a place where every second mattered and counted.  I had things that needed to be done all the time and the consequences of mistakes were huge.  Afterwards, I had to relearn how to be normal again.  I am not completely normal in that way.  I still watch sunsets more than most and look for pictures in the clouds.  I have learned that the calmness that follows the frenzy is at least as difficult emotionally but that calmness is important.

 

I wish that I could talk about how much I learned from Frank and how important he was to me.  If I did, I would cry and they wouldn't get what they were supposed to be getting out of it.  This was my last slide:

 

"As a parent I felt that trying to keep Frank from dying was like trying to hold sand in my hands in a hurricane.  No one ever gave me more sand.  Most health professionals increased the power of the hurricane.  Only with the people who trusted me and my ability to care for my son, did I feel like they were helping to protect us from the storm."

That is Family Centred Practice

 I was already in a bit of a fragile state when I went to pick Levi up from After School Care.  When he saw me, he burst into tears.  He had had a bad day as well.  Lots of things went wrong today.  His friends didn't play with him, he didn't get two answers on a test and the kid who was reading with him was not as nice as he could have been.  Pretty much he needed to cry for a half an hour beening held by someone who loved him.  Luckily that's what I needed too.  Things are back in flux and we are both craving certainty and clarity.  I hope it isn't too far off, for both our sakes.

Day Off

I took today off.  I have been pretty sick the last week or so but today was the first day that I didn't urgently need to do something at work and I took the opportunity gratefully.  Given that I am still coughing I guess that I still need a few more quiet ones.  Also, unless I am harboring some little green aliens that I have to expel, I probably shouldn't be around anyone too immune suppressed anyway. 

Levi has gone to bed and is sound asleep.  He went on a field trip today to Lone Pine with his whole grade level.  He was so excited that he woke early and was so excited about the whole thing that he barely stopped talking all morning.  It seems his whole year group was infected with the same excitement because when I dropped him off this morning, the volume of the talking was at least double compared to a normal morning.  This afternoon, it was a little different.  They all had a dazed look about them and Levi came home and sat on the couch eating corn chips until dinner.  He was just trashed!

Now I am going to go snuggle up as well pretty soon!

Back Online

We are back online.  Our Internet has been shut off for the last two days.  I am not completely cut off because my phone is still 3G and I can get my emails when I am not at the house (we have no coverage under this house).  I finally got a hold of the provider today and they had cut us off because we had reached a new arbitrary limit above our plan!  So let me see.  You put the limit there, not me.  We have gone hundreds and once a thousand dollars over when my brother Jack comes out, but we have always paid on time.  So randomly we are getting a limit and then held to it, all without letting us know!  Yes I was a little annoyed but I am guessing it isn't the girl on the phone's fault!

It has been a busy and a quiet weekend.  Friday night we had Ty over for a sleepover and the boys played until about 9.30 at night and then got up early.  They played all day.  Needless to say by Saturday night Levi was dragging.  Ty had gone home in the late afternoon and Levi was barely able to make it through dinner.  It was Sizzler which was worth staying awake for. 

Soccer this week was 'Cancer Week'.  We all buy special yellow soccer socks for the kids where all the money is donated back to the Cancer Council.  The kids then all wear the socks together on a designated day.  It made me feel proud of the club for such a good idea and to involve all the kids in something a little bigger than themselves.  It is especially poignant for me with Bill's birthday in August.  I still miss him heaps at times even though it has been a long time, nearly sixteen years.

Today was a slow one.  It started slow.  We were slow to get dressed and lounged in front of the TV for a while before we did anything at all.  We didn't have to go out at all.  We didn't have anything that we had to do and so we didn't do anything!  Levi was pleased about the Internet being down because some of his homework had to be done on the Internet and he thought he would get out of it!

Ekka Motorbikes

Pretty much this was all Levi liked at the big show, 'The Ekka'

Learning to be an Extrovert

I am relearning what I learnt as a child.  I am relearning to act extroverted.  It is really interesting to me, that the world is so skewed to extroversion.  It seems to me that if we had more people that thought about what they did before they did it; or hesitated before they said things, the world would be a calmer, safer and more relaxed place.  But that isn't who gets the attention.  The more confident you appear, the more loud you are then the more attention is paid.  Look at the drivel on TV.  I mean, really, who cares about Lara Bingle or any of the Kardashians.  I have no idea what is really happening inside their brains, but they certainly act as if their neurons barely interact, let alone synapse.  Why the hell are we watching their every move and paying attention to all the drivel that comes out of their mouths.  Because they are pretty and because they are extroverts.  They thrive on that attention.  It is what drives them.

My definition of an extrovert/introvert is a little different than most.  I think it is all about energy.  If being with lots of people gives you energy, you are an extrovert.  If being with a group of people drains you of energy, then you are an introvert.  Now that isn't saying anything about what or how you act in those positions.  I am happy to interact with larger groups of people and have little worry about talking in front of crowds, but it takes an enormous effort to do so.  It drains me and I will require a large amount of 'alone time' afterwards to refill my 'tank'.  My alone time doesn't necessarily require actually being alone but with only trusted people and only a few at a time. 

My family views introversion as some sort strange frightening disease.  I remember talking to my mother about time alone and she said that she could see no value in it and had no understanding of why people used that as an excuse.  This was only a couple of years ago.  My older brother is the supreme extrovert.  He too thrives on people and attention and loudness and chaos.  I wish I could be like that but the best I can do is to act it. 

As I am in the throes of the plans to move out from under this house, this difference in us is more and more apparent.  As I look ahead to quieter times, with more control over my life and decisions, I meet the speculation of why I would want that.  They are right, I don't want that, want is too simple a word.  I crave it completely as a part of my very core.  I am happy to act extroverted during the day because that is what works best, but having to act it at home in private time is becoming impossible to maintain.  I am continuing but I am tiring.

Wild Busy Day

Today was a whole weekend worth of activities in a single day!  It was nutso busy but it was fun.  Levi had soccer first thing and he is still playing a little slowly with his cold but he still has fun and gets his pulse rate up a little.  There are only a couple more weekends of soccer now and we have a breakup BBQ on Wednesday night after practice.  The kids won 5 - 4 so the match was really close.  At one point one of the boys on our team tried to kick a ball and missed it completely.  He, our team, the other team and all the parents thought it was funny.  No one feels to bad about it all and they are still making mistakes like own goals at times.  There was one a side this match.  Levi's good mate Robbie came to watch the match, with his dad Mark and that always boosts Levi's spirits a little.

After soccer we went to Levi's mate Ty's sister's birthday party.  Yes it was really that close.  Actually we were there to give Ty a friend when his sister had her special day.  It was a princess party and Levi dressed up as a prince.  He was gorgeous.  Sorry, he was handsome!  I am getting into trouble with him at times now if I call him beautiful or gorgeous in public.  I still get away with it in private!

 Look at this sweet tired face!

In the beginning, I took some photos.  Levi had to put on this growly face and it wasn't until later and a telephoto lens before I could get a shot of him without this face!  I love it because he was trying to look cranky but still he has the big smile that he can't resist!

After the party, we went and saw Ice Age, Continental Drift.  It was more about trying to slough off some of the party sugar, than it was about the movie.  We had both seen it before but the choice of children's movies at the moment is poor.  As we were choosing by time rather than by movie, Ice Age was the only choice.  Still Levi invited a friend and they had fun talking at the top of their lungs to and from the movie and being good and eating their body weight in popcorn.

Just Back

Just got back from Townsville on Outreach.  It is the last Outreach for the year and I am very grateful for that!  I am just really tired.  It is hard to do very long days that end up in a hotel room and Levi on the phone wanting me home.  It is rewarding but it is exhausting!  I will post again as soon as I get the energy!  Probably tomorrow!

Swimming Mid Winter

We are getting back in the groove again.  Levi is getting slowly better with his asthma but it has been an uphill battle this time.  It may just be that we are having a cold spell and with the humidity and mold around, it is playing with his pipes!  We had soccer again this morning and I took my camera again because we were having team shots and I thought that I might save some money by taking my own while the professional shots were being taken.  I ended up being busy at the time anyway, so I am going to have to cough up the money.  I don't mind but generally the shots are pretty ordinary and not really worth the money.  Levi was having an 'old' day.  One of those days where he could as easily be seventeen years old as seven. 

 

Then after doing homework, Ty came over for a play and a sleepover.  The kids had a blast and are now sound asleep in bed.  They had to have a fire by the creek again and I was happy to help them.  They played in the creek until they were blue and shaking and then warmed up by the fire and then got straight back in the creek!  Then we toasted marshmallows, poked at the fire a bit more and then I put them straight in the shower to get them warmed back up fully!

This is the other thing we did.  Any hints?  Yes, he spent all of the soccer game scratching his head, so I checked and he had some head lice.  We washed, conditioned and combed out his hair with a fine tooth comb!

Night Soccer

Sorry about the blurriness of this shot, it was the best a hand held iPhone could do at night.   Actually it isn't that bad given the fact that it was dark!  Tonight, Levi decided that he wanted to start singing again at night which I am really happy about.  He says that his music teacher 'sings like birds singing'! Maybe he has a bit of a crush on her!  Regardless, it was a beautiful thing to say and we got to sing a fairly eclectic musical array before bed; Maxwell's Silver Hammer, Amazing Grace and Jingle Bells. 

It has been really cold and his asthma (for something completely different) is completely out of control for him.  He needs to use the Ventolin about every two to three hours.  I was talking with friends tonight and all those with asthmatic kids are out of control too.  It must have something to do with the wind coupled with the cold.