Wednesday, March 31, 2010

Special Exposure Wednesday: Happy Birthday Emma!


Today's SEW is all about my big girl Emma.  Today is her 6th birthday.  HOW did that happen?

Here are some photos of the birthday girl from the last 6 birthdays...

BIRTH day

Turning One

Turning Two

Turning Three

Turning Four

Turning Five

And now she is turning six

I haven't taken any birthday photos yet, this is one I quickly snapped the other day.  I used it for her Easter t-shirt she had to decorate for school (I just discovered transfer paper that you use with your inkjet printer - fabo idea!)

Emma has been counting the sleeps until her birthday.  So have I.  She has promised that when she turns 6 she will start wiping her own bottom.  No More Sleeps!!!  YAY!!!

Unfortunately the birthday girl is home from school feeling sick.  Hopefully she will be feeling better in time for her party tomorrow afternoon.

For lots of other great Special Exposure Wednesday photos check here.

Monday, March 29, 2010

4 Days to go....

Until school holidays!!!

I can't wait.  As you know from Friday's post I have been failing kindergarten parenting.  This last week of school is really pushing me to the edge!  Today is the walk-and-wheelathon to raise money for some more smart boards.  Tomorrow is the infants school dance - and get this - the children have to wear a decorated t-shirt.  Which means I have to help Emma decorate a t-shirt.  With all my spare time.  Wednesday they have to wear red, yellow and black for an Aboriginal performance, and Thursday is necklace or necktie day.

Are they trying to kill me???

We are going to have quite a few pyjama days in the holidays!

Before we get to the pyjama days, we have also got to survive Emma's birthday party.  I have invited the whole class.  Have I mentioned before that I am losing my sanity???  We are having it on Thursday afternoon after school.  I am trying to keep it low key - no games, little organisation, just kids running around, eating pizza for dinner, having birthday cake and being shown the door.

Wish me luck.

There is a method to my madness.  I wanted to invite the whole class (and I will be doing the same with the twins birthday next month), because I want the opportunity to get to know people at school.  I want them to see that we are like other families, we have parties, we go to parties, we can do most things they can (which kind of isn't true - but I don't want them to know that).  My main concern is that I wouldn't want my children to be treated differently, or to miss out on things because other parents might think it was too difficult for us because of Ashlea's disabilities.

So, instead I am making myself crazy inviting the whole class to Emma's party.  All in the name of people getting to know us, not being put off by the wheelchair.

Even if it is a little crazy, it is paying off.  I am starting to get to know other mums, which is particularly helpful when I find other mums who happen to work at the children's hospital.  I met one the other day who works in Radiology.  Very helpful - soon I'll have a contact in pretty much every department of that place!

Better go - I've got a t-shirt to make, and a red, yellow and black outfit to put together.  Oh, and for those who were wondering, I DID get the crown made for Friday, and I WAS shamed into making the sight word cards.

Someone please tell me school gets easier???

Friday, March 26, 2010

Out of the mouths of babes...

Ashlea has a new sentence.

"I want the bridge"

(It's a Night Garden toy in case you're wondering)

The problem is that when she says it, it is more like this...

"Wan a bidge"

Say it out loud.

It sounds like she is saying "What a bitch".  She really emphasises the "Wan" and the "bidge" too, so she has the perfect intonation for "What a BITCH"

Murray came home from work yesterday, and picked up his little princess to kiss her and say hello.

What does she come out with?

"Wan a bidge"

I heard her say it from the other room.  There was a long pause and then came Murray's voice "Um, what did Ashlea just say???"  (He was of course thinking she must have learnt it from me.  Moi?  I would never use language like that*).

Once I explained that she was actually saying "I want the bridge" I was off the hook!

* OK, so I may not have been responsible for Ashlea saying what sounded like "What a bitch", but I could possibly be responsible for Audrey saying "bloody shit" when something went wrong for her.  Oops.  Bad mummy.  Funny though because I would never actually use that phrase!

In more 'Bad Mummy' news, we had parent teacher interviews this week.  Emma is loving school and doing really well except for one thing.  She does not shut up the whole day.  The teacher said her constant talking is driving her crazy - so much that she had to move Emma's desk further away so she couldn't hear her!!

The rest of the interview went like this...

Teacher:  "Have you put the sight words on cards and are you using them at home?"

Me: "Is that those list of words you gave us?  No.  I lost them"

Teacher:  "Now, do you remember you have to make a crown for Friday?"

Me: "Um...No...Can I write this down?"

I think I failed kindergarten parenting!  Are they trying to drive us parents crazy with all the stuff we have to remember???

Anyway, after the interview I suggested to Emma that maybe she could try and talk a little bit less in class.  Or at least talk to her friends rather than try and have a running dialogue with the teacher all day.  Yesterday she managed to be quiet and got a class award for "being quiet today".

She's a cunning little chook though.  She loves getting those awards, so has worked out a plan to get more of them.  She told me she was going to be noisy one day, and then quiet the next (so she'd get an award).  Then noisy the next day, then quiet again (to get another award), and so on.  We'll see how long it takes for the teacher to cotton on to that!

Wednesday, March 24, 2010

Special Exposure Wednesday: I Want to Bounce!!

The other day I took Ashlea out into the backyard while I was hanging out the washing.  She crawled around on the grass for awhile (!!!) and then requested to go on the trampoline.

I put her on, and she said to me - very matter of factly:

"Want to Bounce".

I told her that she would have to make it bounce herself as there was NO WAY I was getting on the trampoline (I have Menieres - anything that even vaguely moves makes me seasick).

Ashlea wasn't happy with this, but had her own solution:

"Want Audrey come"

SO CUTE - I nearly melted on the spot. This is the second time now that she has requested that Audrey come and help her play with something.  Considering that up until now my twins have barely interacted, I was VERY happy with this request.  I was also over the moon because it was a 'made up sentence'.  A lot of Ashlea's sentences she has learnt by copying us - it is rare for her to put the words together herself and make up a sentence.

Audrey was summoned to come over and do the bouncing for Ashlea, which she did with great enthusiasm as you can see below:









Don't forget to check out all the other Special Exposure Wednesday photos here.

Tuesday, March 23, 2010

A stranger's comment

Yesterday we started 'regular' swimming again as hydrotherapy has finished for awhile. I was a little apprehensive as we were starting with a new teacher and new group of parents. You know how it is on the first day - all those parents being politically correct and not saying anything even though they'd really love to ask questions, so they just try and sneak a peek out of the corner of their eyes to try and suss out what is going on.

Ashlea had a wee tantrum while we were waiting to swim - it seems patience is not her forte - but when we got in the water she loved it and got right into it.

After it was all over I was dressing her on the bench. She was stark naked and giggling hysterically - she is very ticklish so whenever you try and dry her she just giggles. Last time we had a 'first day of regular swimming' experience I was doing exactly the same thing when a stranger politely asked me what Ashlea's PEG was for.

Yesterday I got this comment instead - even though the PEG and wheelchair were in full view.

'Doesn't she have a great laugh!'

Bless her - I could have kissed this mother! Her comment made my day.

She could obviously see Ashlea's disabilities, but instead of commenting on them or asking questions, she saw a positive and commented on that.

What a pleasant surprise - here was I on edge about potential comments from strangers, only to be reminded that sometimes a comment from a stranger can be a good thing!

Sunday, March 21, 2010

Family Fun...?

How many of you manage to successfully pull off the 'family outing'???

We rarely attempt an outing with all of us together as we know a certain little moppet is likely to have sensory issues scream blue murder when in new situations.  Yesterday I was feeling brave so I thought we'd try for an outing with the whole family.

In the afternoon my sister's work had a picnic.  I didn't want to push my luck, so just Audrey and Emma went to that (and had a ball).  After that the plan was for Murray, Ashlea and I to meet them in the city to have a walk around and look at the Harbour Bridge and Opera House.  After going there recently with my photography class I reaslied how accessible it is to drive into the city and park in Hickson Road, and then get out and wander along the foreshore.  It seemed do-able.  Emma and Audrey love the idea of the Harbour Bridge and Opera House so I thought it would be a nice little trip.

I didn't factor Miss Ashlea's lung power into the equation when I was thinking about what a great outing it would be for the kids.  You can picture how it went can't you?

Arrive at the foreshore under the Harbour Bridge.  Emma and Audrey are running around and excited.  Ashlea is screaming in the wheelchair.

Walking along the foreshore - Ashlea still screaming in the wheelchair.  Eventually she calmed down a little, so we thought we'd have McDonalds for dinner - after all McDonalds is pretty much ALWAYS wheelchair accessible right?  Wrong.  Not the one at Circular Quay (steps to enter - no ramp and no toilets).

The whole time we were at McDonalds Ashlea was...you guessed it....howling in her chair.  Sorry to any other patrons but....I'm afraid you're just going to have to suck it up like us.  Murray wanted to take her outside so other people wouldn't be disturbed.  My theory is that if we take her outside every time she gets upset she will just learn that if she has a tantrum we'll give in.  So we all stayed and calmly ate our dinner...while she howled.  Howling children often get looks from strangers...nowhere near as many as howling children in wheelchairs though.

After dinner we set off for the walk back around to the car.  Still howling.  Although she did settle down again while we were walking.  Any stopping though and she let us know she wasn't happy. 

In spite of all this I decided to try and get a photo of the girls in front of the Opera House.  See for yourself how that went.  So many pictures taken, NONE of them any good - but so bad they're kind of funny.





It was such a relief to pack all the kids into the car and send them home! Murray took them home and put them to bed while Carolin and I stayed for awhile to take photos. I probably shouldn't have thanked him by putting that photo of him on the blog should I???

Friday, March 19, 2010

Botox Today

Ashlea had her second round of botox today.  We were initially wondering if we would go ahead with it after her total-body-floppiness from the swine flu vaccine, however as her strength has increased so has her muscle tone - so we decided to go ahead.  Fortunately all went well and she was still strong enough to crawl and W-sit afterwards.

Like anything to do with the hospital (other than hydrotherapy) Ashlea hates the botox clinic.  She put up a great screaming protest when they measured her legs and marked them up for the injections.  However for the actual procedure they use midazolam for sedation and it works REALLY well on Ashlea for some reason.  I took these photos on my phone of her looking a little hammered...


Man I wish they'd share that stuff with the parents!



She was even happy to lie on the hospital bed without putting up a fight - and usually she won't go anywhere near them.


Poor poppet - she really wanted to put up a fight - but she just didn't have it in her!  I am really glad the drug works well on her - it is so much less stressful when you don't have to hold down a screaming, thrashing child.

Ashlea had her calves and hamstrings botoxed again.  This time they increased the dose to her calves as they are still extremely tight.  Her legs feel softer already - but as usual we will have to wait a few weeks to see the full results.

And now to jump to something completely off topic...for those who may have been wondering...  YES I did finally talk about 'that day' with the psychologist this week - and I lived to tell the tale.  It wasn't as awful as I expected.  I didn't become hysterical.  I actually didn't even cry.  I did however shake like a leaf the entire time.  And you know what...maybe these 'talking about it is better' people are on to something.  I feel like I can breath again.  I don't feel like anyone is sitting on my chest anymore.  Even though the actual talking about it part still felt horrible, I do actually feel better for it now.  Now that its over of course!

Wednesday, March 17, 2010

4 years ago today...

4 years ago today I was diagnosed with severe Twin-Twin-Transfusion Syndrome and told that my precious babies lives were in a perilous state.

Look at them now...



I am so grateful to Dr Greg Kesby our fantastic high risk OB who worked very hard to get the pregnancy as far along as possible.



And to the fabulous Neonatal doctors and nurses at RPA who gave my early birds the best care possible.



Mostly I am thankful to God, who in His mercy, allowed me to keep my girls for awhile longer - and to have the opportunity to see them both grow and develop into gorgeous, strong willed little people.

Sunday, March 14, 2010

A Breath of Fresh Air

Yesterday I attended the SMBC Women's Conference.  It is always a great conference - but today it had one thing that made it even better than the previous times I have attended.

Today, a mum named Madeleine was interviewed.  Madeleine is the mother of a child with special needs, and she got up in front of everyone and told it like it really is.  It was such a breath of fresh air.  She was so open and honest about the ups and downs of a life with a special needs child.  She started by saying that it was likely there was only one other mother of a child with special needs in the audience - if any.  Big fat tears slid down my cheeks the whole time she was talking - betraying my identity as that one other parent.  It was fantastic to hear someone who lives in my world, who understands what my life is like, talking about issues that are so relevant to me - and making sure that others who don't live in this world actually get to hear what it is really like.

Unfortunately like everywhere else, disability and inclusion are often overlooked in the church.  Madeleine was talking about the importance of including people with disabilities in church (AMEN).  About the importance of not trotting out platitudes like "God will only give you what you can handle" or "God only gives special children to special parents" (AMEN).  I think her actual words on that one were that she wanted to slap people when they say that - (AMEN sister).  She talked about the stress carers are under (exact words: 'carers are desperate') and that you can't just say "I'll pray for you" and then think you've done your bit 'supporting' someone in your church who is caring for a child with special needs.

It was great.  She got up there and said all the things I have been unable to say.  I really wish that more of my friends had been there to hear her speak, to get more of an idea of what it is really like to care for a child with special needs.

As soon as the session was over I made a beeline straight for Madeleine and introduced myself.  It is always great to meet other mums of children with special needs - there is always an instant connection - even if our life circumstances are completely different.

Madeleine has written a book about her and her daughter Ella's experiences.  Here are the details for anyone who is interested:

Ella
the real story of an ordinary mother's journey with her extraordinary daughter

Madeleine Witham
Published by Ark House Press
ISBN: 978-1-921589-26-5

PS Madeleine is a Christian, so you should probably be aware that God WILL get a mention in the book.

Friday, March 12, 2010

A Little Bit of Crazy...

Before I go into more detail about my current crazy state, I would really like to thank everyone who commented on my last post - especially those people who know their child's condition is life-limiting. Thank you for your kindness and wisdom and understanding.  Thank you for the good reminders about appreciating life in the here and now - because the cold hard truth is that anything could happen to any one of us at any time.  We all need to appreciate what and who we have while we still have them.  I think it has been helpful for me to confront my fears over Ashlea's life and death.  The nursery left me with a real fear that she could die at any time, and while that is still true in one sense, it has been helpful to realise that she is probably a lot healthier now than I give her credit for, and that she is not likely to die imminently and maybe I can let go of some of my fear and hypervigilance.

Now for today's craziness.  Since I have started talking about grief and our NICU experience with a psychologist I feel like I am starting to go a little crazy.  Are you guys sure that this 'talking about it' idea is as good as everyone makes out???

Over the last couple of weeks I have been feeling awful.  I've started talking about how I feel about what we went through and what we continue to go through with Ashlea, and I can feel all the emotions have come up and it feels like they are just under the surface.  The problem is there is no release.  I feel like I am carrying around all this tension and emotion in my chest, but can't do anything with it.  I am not the sort of person who can easily just sit down and have a big cry about it - did I mention we are all a bit repressed in my family?  Anyway, seeing as I don't do the big bawl your eyes out thing,  I usually do the 'slow leak' of tears instead.  So whenever I think about the NICU or 'what could have been' or whatever the particular trigger is I will have a few tears and thats it.  But I could do that every day or a couple of times every day, so eventually I figure the slow leak of tears equates to someone else who would just get it all out in one go.  The whole point of telling you all that, is that since I have started talking about all this stuff with the psychologist there have been NO TEARS at all.  I have no access to any tears whatsoever.  It doesn't matter what I watch on TV, or what music I listen to, or what I think or talk about - NO TEARS will come out.  Which means that I am carrying all this emotion around inside my body - mainly in my chest and behind my eyes.  At times it feels like someone is sitting on my chest and that it is hard to breath because of all the built up stress.

I kind of have an idea about why this might be happening.  I think because I find it so hard to talk about how I feel and particularly to let people see how I feel, I have somehow gotten into this weird state as a way of avoiding showing my emotions when I talk about stuff.  Its like because I know this is such an emotional issue, I know I can't talk about it without tears, but yet I find it so hard to let people see my tears, I have gotten myself worked up into this state so that now even though I WANT the tears to come out they won't.

Also, I think partly it is anxiety.  Even though I have started talking about our NICU experience with the psychologist we haven't yet talked about THAT DAY.  The day where I thought Ashlea was going to die right then and there in front of me.  And I am TERRIFIED of talking about that day.  I haven't spoken to anyone about it.  Ever.  The anticipation of talking about it is nearly driving me mad.  That is why I feel like I can't breath.

I have decided that next week when I go for my appointment we are going to have to talk about THAT DAY.  I can't keep it in any longer.  I can't keep anticipating having to talk about it.  I figure we should just get on with it and do it.  I'm not sure that it will make me feel any better, but at least the stressful anticipation will be gone.

Wish me luck.

PS  Sorry for all the crazy ramblings of late...you've done well if you actually made it through this whole post!  I figure though that if I am still not able to open up my mouth and talk to people face to face about how I feel, at least I can start practising by being more open here!

Wednesday, March 10, 2010

The hard questions

Do you have the courage to ask the hard questions regarding your child?

I like to think I do.  Usually I'm all about the questions.  I like to have as much information as possible - it helps me feel in control.  I have become quite informed about Ashlea's medical conditions.  I know what she can and can't do, and roughly what she is expected to be able to do (physically anyway).  I know a lot about kidneys and kidney transplants, cerebral palsy, botox, vision impairment, diabetes insipidus...the list goes on.

But I realised today that I have never asked any of her doctors the hardest question of all.

What is Ashlea's estimated life expectancy?

I was actually quite surprised to realise I hadn't asked any of her doctors that question.  Especially considering that ever since her early arrival and dramatic NICU journey my underlying fear has been:

Will she die?

Whenever she is sick, whenever she is in hospital, whenever there is a setback my mind immediately jumps to:

Will she die from this?

I am sure other mums who have had critically ill children can relate to this fear.  Some of the people who read this blog have children who are still very sick, and there are even some who are being managed by a palliative care team. I am terrified that that is where we will end up again.  Back in ICU, on full life support, being forced to think about "what is in Ashlea's best interests" - translation "do you want to continue with treatment".

[Please tell me I'm not the only tramatised parent who thinks like this]

I don't think you have to be a genius to work out that maybe the reason I haven't asked the question up until now  is because I have been terrified about what the answer might be.

I am ready to ask the question now.  I am pretty sure Ashlea does not have the same life expectancy as a 'regular' person, but I am pretty confident that it would be measured in decades rather than years - which sounds pretty good to me.  Much more than what we expected back when her survival was an hour by hour achievement in the nursery.  So I am going to ask the doctors the next time we see them - not that I even really expect they will be able to give an answer.  None of us has a crystal ball, but I think it would be helpful to hear from the doctors how long they think she could live for - hopefully it will help me to set aside some of the fear that has been controlling me for the last 4 years. 

Am I the only one who worries about stuff like this?  Have any of you had similar discussions with your children's doctors?  Or am I just going crazy??

Saturday, March 6, 2010

Who would have thought???

Who would have thought my little Ashlea would take to preschool so well?  Yesterday she had her first day of NO tears at all at preschool.  Not even when I left (she usually puts on a big performance as I am leaving but it is over before I've even made it to the end of the street).  She was full of smiles on arrival, happy all day, and greeted me with a big smile at pick up time.

We have a little ritual now when I put her in the car after preschool.  Without fail she says:

"Had a good time"

"I so proud"

 

Ashlea's first painting...or maybe I should label it Mrs C's 5962nd painting as I'm not sure how much is 'authentic' Ashlea.


Who would have thought that if you internalise all the grief and trauma of the last 4 years, that when you finally open up to someone that ALL the emotion is STILL THERE?  Actually maybe even I could have guessed that one.  I come from a long line of avoiders - we avoid talking about our feelings.  We avoid feeling our feeilngs.  Such a shame it doesn't make them go away.  

After establishing that I am not a fan of talking about how I feel, and that perhaps that isn't the best way of dealing with things, my psychologist told me what I had to do.  START TALKING.  And you know what?  As unpleasant as it is, it is also kind of a relief.  Finally I can let out all the 'stuff' that has been in my head for the last 4 years.  She may have unstopped a dam, because I don't know if I'm going to be able to shut up now.  I have pretty much kept EVERYTHING inside - there are things that happened in the NICU that I haven't spoken to anyone about, and I'm sick of carrying it all around.  Its exhausting.  And draining.  I'm looking forward to getting it all out of my head.

Who would have thought?

Thursday, March 4, 2010

Special Exposure Wednesday...on Thursday

I'm a day late, but I had to show you our acheivements of the week (all in the one photo too!).


Ashlea sititng ...and the arrival of our first box of FREE nappies.  Oh and the Night Garden on in the background...its a good day today!

Don't forget to check out all the other Special Exposure Wednesday photos here.

Monday, March 1, 2010

A few thank-yous...

Don't you love these sorts of phone calls...

I got a call today from our local home modifications team letting me know that our application for a fee waiver on our ramp has been approved. Which means we will be getting our backyard ramp built. For free. Work will start in a few weeks time. THANKS to the local councillors or whoever it is that makes these decisions - we really appreciate it and it will make a huge difference to our lives (and my back).

In other news I met some of the kindergarten mums for morning tea today (I invited them all here as I figured that would be easier with Ashlea).  I want to try and get involved at school, but it is hard to get to know people as I don't have time to hang around and chat after school drop off as I usually have to be somewhere straight away.  I also don't want Ashlea's wheelchair to be an issue.  I don't want people to feel uncomfortable or like they can't approach me because  of it.  I don't know...because I am on this side of the chair I don't know what other mums are thinking (feel free to let me know other mums).  I guess it is more of an issue for Audrey when she starts school - or even at preschool - I don't want her to be left out or not invited to things because people think it will be too hard for me with Ashlea.  Maybe that is unlikely to happen, but I am being proactive anyway and trying to be friendly and get to know people.  About half the class parents came - it was good to get to know them a bit better.  I have already started putting that to good use by asking one of them to walk Emma out of school today while the sleeping twins and I stayed in the van out of the rain. Maybe next time I shouldn't pick on the heavily pregnant mum...but she was the only one passing by and is the nicest of the school mums I've met so far! Thanks Tracey!

I'm still having great fun playing with my camera. Our homework for 'school' this week was to take photos of our street at different times of the day. I know photos of a street aren't particularly interesting but I enjoyed doing the homework, although at one stage I did think I was about to be mugged by the local driving instructor. I didn't realise he was the instructor, so when he pulled up across the road and started coming over to me saying "That's a nice camera you've got there" I started acting a little crazy and told him he'd better not be about to mug me out the front of my own house!

Here is my street at 9am and 9pm (I won't show you the whole series as it is kind of really boring).  Most of the people in the class live in the inner west where there are HEAPS of street lights, neon signs, shops etc to light up the roads.  I live in the north west where things are quiet and dark.  I had to wait for a car to pass by to take my night time shot.  Thanks Carolin for standing in the road with me in the pitch black telling me when cars were coming!

 

 

And last but definitely not least a big thank you to God for Ashlea's continuing recovery from the side effects of her swine flu shot.  Today she W-sat for the first time in over a month.  WOOHOO.