Archive for July 2011
To babysit or not to babysit. That is the question.
When my big girls turned thirteen and fourteen
they asked if they could babysit for Dave and I.
I said no
and gave them every excuse under the sun as to why that would not be possible
and then,
like I have every year
I said I would think about it when they turned another year older.
The day those big twins turned fifteen,
it started again,
as if on some strange loop
and I tried all the usual excuses
and the usual yearly promise
but to date they haven’t let up.
They don’t want money.
They just want me to trust that they are capable of looking after the little ones
and Mal
and Lily
and not get into any trouble, problems or arguments with the teenage boy.
They have tried every single angle they can think of
but still I haven’t budged.
The thing is -
I would love to go out on a ‘date’ with my husband,
eat dinner at a restaurant that didn’t start with Mc and end in Donalds.
Go to a movie with a greater rating than PG.
We don’t ask anyone to look after our brood
because frankly,
we don’t feel as if we have the right to.
We use our grandparent ‘allocation’ up on hospital stays.
Also
we know that seven children are a small army
and people often feel overwhelmed by the large number of young humans dwelling here.
It’s a trust thing too
and
it’s also because I hated being left alone with my brother and sister
while my mother worked
and my father shirked his responsibilities all over town.
It’s all of those things
and I don’t know if I will ever be ready.
At least, not without a good hard shove.
So, the push has been on from the girls
and even more so,
this weekend.
I don’t know what to do.
I know I was younger than Immy and Maddy are
when I was asked to look after the younger ones.
I know that there are many parents out there,
friends,
who are now leaving their older children to baby sit, while they do adult things -
have time out
rediscover themselves.
I also know that there are fifteen year old kids who babysit for money
and adults who happily trust and pay those teenagers.
Should I let them do it?
Should I just take that big step?
What would you do?
Did you babysit your brothers and sisters?
Did you do it for money and if so, how old were you
or were you a little one, being cared for by an older sibling – how was it?
Would you let your little ones be looked after for a couple of hours by two (very mature) 15 year old girls?
What age is the right age?
I’d love to hear your advice, your stories and your thoughts
because I’m not getting very far at all
on my own.
A little lost.
My biggies have gone to camp.
it’s the first time I have sent them away over the school holidays.
They were offered a place at Camp Breakaway’s Sibling camp – specifically for kids with a sick brother or sister
and I thought that it was something they could do with.
Some time out.
Doing something that didn’t revolve around hospital
or doctors appointments.
Something for them.
The teenage boy was angry with me for sending him
and I must admit that I feel a little lost without them here.
I’m already struggling with my emotions at the moment
so why not throw in the whole -
“what will I do with myself, now that they don’t need me any more”
question.
You can only wipe a kitchen bench down so many times.
Anyhow, I was missing them wildly this morning and then I found this:
This is what they did yesterday
and that’s my girl screaming her lungs out,
as they drop her from enormous heights
and then giving an interview,
flushed
and excited
and happy!
If you look carefully, you can see the other three in there too,
looking relaxed.
It’s just what I needed to see.
I can handle feeling lost
because seeing that video makes it totally worth it.
The trial.
It’s time.
We have to trial Ivy off the IV antibiotics.
Test her ears.
Test the immunologist’s theory.
We could be waiting forever,
if we don’t take that leap of faith.
The paed says he is looking forward to the trial.
I’m glad somebody is.
+++
The Lactoferrin is not going very far at all.
We can’t seem to get the girl to a therapeutic dose without
reactions
and tummy upsets
and blisters.
+++
We’ve managed to get Ivy back into some kind of terrible blistering cycle
with all of the pain that goes with it.
The girl has been loathe to walk
or to go to the bathroom
or move very much at all
and it has taken bucket loads of prednisone to break it.
I’m not even sure if we have been successful there
but I’m ready to wean the pred back down to see.
Lucky it is school holidays
and the girl can rest,
tucked up into my bed
searching You Tube
for tutorials on cake decoration.
She may not have made it through the week otherwise.
+++
The immunologist spoke to us a few weeks ago.
She told us that they had discovered
a dysfunction in the girl’s neutrophils.
She was excited about the new information
and I just felt for the girl.
Another problem with her immune system.
Another part that just doesn’t work the way it should.
+++
I’m ready for all of this to stop.
What an understatement that is.
I’ve been ready for it all to get better for years
and for life to get back on track
but to me,
it seems we are going backwards some days.
Either that
or just treading water.
+++
The paed wants to get everything going
for a trial of growth hormone.
Ivy is rapidly falling off the charts for height
and it’s not helping anything.
Without growth, things don’t change.
Without growth
the risks of something else going wrong
just keeps going up.
It all sounds very ominous, I know.
I can’t help feeling like this.
I can’t seem to grow either.
+++
The trouble is
that the endocrinologist is being difficult
and
for what ever reason
has not followed through on paper work
and applications to the governing powers that make these kinds of decisions
that make the trial possible.
It will be a year next month since the idea was first suggested
and despite everyone’s best efforts
it hasn’t gone anywhere.
Again,
we won’t know until we try
if this therapy will help Ivy at all
but
the paed
and the immunologist
and the infectious diseases doctor
think it’s worth a shot.
Me too.
I just wish we could tie the endocrinologist down now.
+++
So, I’m nervous
about these trials
about all of it, really.
I keep telling myself it will all be okay
but
I am struggling to keep the positive at the moment.
I’m thinking I may need help
need to go to a doctor (although I’m not sure who)
and be medicated for a bit.
Just until my brain can get with the program.
Just until I can see that things are getting better
and not falling apart around me.
Just until I can see the sunshine again -
just until this trial is over.
Starlight Express (part 2) – Train Works
Last month Ivy and our family were lucky to have a day out with The Starlight Foundation on their Starlight Express train.
This is the second part to our adventure.
We alighted from the train, which was the first XPT to pass through Picton Station ever
to find ourselves at Train Works, in engine heaven.
Noah (and quietly Dave) were beside themselves with train goodness.
We spent the late morning looking at beautifully restored old carriages.
It was like stepping back in time.
The train that the Queen had travelled through Australia in was there.
They even had ‘red rattlers’, which was the type of train I used to take to school and home again.
It was such a blast walking through that one.
Everything was the same and the smell of the carriage brought back strong memories of when I was a teenager.
At lunch time we went to the main area, where the boys climbed through fire engines,
and met Thomas the Tank Engine.
We had lunch, while the Captains serenaded us with music.
There was a talent quest.
Mal entered by showing everyone his muscles
and telling the audience how long it took for him to grow said muscles.
Noah entered too
but when he got up onto the stage, he suddenly became stage fright.
With the Captains’ encouragement he decided his talent was to stick out his tongue!
Dave and I thought that was quite a good talent,
considering that he had a severe tongue tie
and couldn’t stick his out very far at all,
once upon a time.
There was lots of clapping and cheering.
The atmosphere was really happy.
After that the kids who had dressed up
walked the red carpet
and gave everyone a fashion parade.
Ivy was strutting her stuff, along with Noah
and everyone was clapping and cheering them on.
We had a lovely day.
Soon it was time to get back onto the train
and everyone was tired,
especially the girl.
For a while the carriage was quiet as everyone settled into their seats
and I thought Ivy might fall asleep
but as soon as the Captains came through the carriage with balloon animals
she caught her second wind -
they all did.
Captain “Gigantor” stayed to talk with the teenagers for a long time,
asking questions about our family and
joking around.
He and Lily got on really well
and he made Lily’s day by offering to be her twin
because she was the only one without one.
He was so sweet to her
and I will always be thankful for that.
The day slowly came to an end
and we thanked everyone for giving our family an amazing day.
We all left smiling and relaxed.
It truly was a wonderful experience and gave our family time together
that we really needed.
