It was an interesting point of view

but when I read it I felt really angry.

The reason I went to the internet in the first place was because I felt isolated from people

and so I reached out into the land of cyber to find others who were like me

and for the first time in a long while, I felt as though I belonged somewhere.

I don’t know about other people but I find it difficult and stressful to make friends

and then when I do find someone I feel a connection with,

I find it equally hard to hang on to that friendship.

I lost a lot of friends when Will died.

Something about having a baby die drives people away by the hundreds.

It made me feel wary of the possibility of new people.

We had barely moved into our new home, when he died,

so there were not many friendships forged in stone.

I had a small group of four exceptional friends who worked through that time with me.

One, who I’d known for all of my adult life, was my  rock.

One, who had a baby just three months younger, kept me going,

one, who never let me give up hope

and one who made me laugh and remember that life would go on and be worthwhile again.

The thing is, aside from the rock friend,

we hardly ever saw each other.

My rock lived next door and I depended on her night and day

and eventually I drove her away.

It’s okay – I know I did and she never blamed me for anything.

It just got too hard for the both of us.

Although none of them really knew the other they formed this tag team phone in.

It was great for me

but I guess, you can only give so much without receiving something in return before you get tired.

Sadly when the pair came into my life things changed again.

The thing with friends now is they find it hard to understand that life with an immune deficient child is difficult.

You can’t really plan

and going out makes me feel nervous.

Like I am doing something risky and wrong.

I’m not in a position to go out drinking

or go on an organised outing.

I have a couple of nice friends where we live now but I keep my distance because I have to.

Most of my friends who I would turn to for help now live too far away

or are online -

my  internet community, where I can have a bad day

and it’s totally okay with at least one person out there.

I felt angry because the internet has been my crutch for a long time now.

I know I am dependant

but I also felt angry because some days there is nothing more I would like to do than to go out and have coffee and talk about

whatever it is that women discuss

and the truth is, that post hit a raw spot.

I miss real life sometimes.

One of the things I was confronted with when Immy and Maddy started school all those years ago

was the policy to separate twins.

I fought long and hard to keep them together during kindergarten

and in the end a concession was made -

on the agreement that they would be in different classes in first grade.

When Ivy and Noah started kindy last year, the same question came up.

Having had a set of twins go through school before and knowing that Ivy would cope better with school if her brother was by her side

the choice was easy – they stayed together.

First grade for Immy and Maddy was very difficult.

The pair of them hated being in different classes and would often disrupt school time because they were worried about the other.

The teachers would  tell me that one would just get up and leave the classroom and when followed

they would find the pair of them met in the middle (the rooms were next door to each other)

wrapped up in each other, hugging.

Although, I could see that  each girl was coming into her own,

developing new confidence without each other,

making different friends

the girls were adamant that their life had come to an end

and their behaviour at home reflected that.

They stopped sleeping through the night,

they spent every waking minute at home together.

I often found them in each other’s bed,

and there were nightmares.

On top of that were the issues surrounding having different work schedules,

having to be in two places at once on important days

and different styles of homework and teaching methods to absorb and deal with.

It was hard on everyone, I think

and at the end of that year the teachers agreed with me that Immy and Maddy should not be made to separate again.

They stayed together until years five and six, which is when they made the choice to be in different classes.

Strangely enough now, they find themselves in the same level for many subjects

and they have the same group of friends at school.

Which brings me to Ivy and Noah, who have also been separated this year.

Why, you might ask, did I agree to that.

Well, the answer is simple and complex

but what it boils down to is that Noah was so busy taking such good care of Ivy last year,

that he lost his identity.

He became “Ivy’s brother”

and didn’t have the chance to make his own group of school pals.

Which is kind of wonderful and kind of sad all at once.

I thought about it for a long time and decided that I needed to give the boy a chance to find his individuality

and so this year he went off to his own class

and Ivy hers.

What I can see this time around is different from when the big girls were split up

but there are also some  similarities too.

Firstly, Noah transitioned into his new situation really well.

When I told the pair they were not going to be together, Nowie took it very well.

Ivy cried.

Noah has slipped into being himself with ease.

He loves his teacher, he loves his new found friends

and he especially loves that he is in a demountable further down the school yard and right away from the new kindy kids.

Ivy on the other hand was scared beyond belief on her first day without Noah

and although she says she likes her teacher, her classroom and her friends

she craves Noah.

She says it’s not the same with him gone,

that she misses him a lot.

At home she is quieter about her school happenings,

where as Noah is very descriptive of his days.

Last year, when asked, they did this cute tag team explanation, their words often tumbling over each others in unison.

The interesting thing though is at home.

Like Immy and Maddy,

the pair have lived out of each other’s pockets for the last week.

Playing together and ignoring all other invites to play or join in with the other kids,

which is unusual for them.

Ivy and Noah are very gender oriented.

Ivy is a girly girl, playing Barbies and babies and things like that

and Noah, he loves Lego and building

and crashing planes

and Power Rangers is his new obsession,

so to see them playing together (the Barbies now have new sleeping quarters on Noah’s rocket space station)

well, it’s different.

Ivy drags Noah everywhere with her when we are at home.

Sleeping is suddenly and issue too.

Noah (who has done so well at school) is waking with nightmares and midnight askings if the girl is okay

and both have requested they they sleep in bed together this week.

It’s too early to tell how their year will play out yet but so far I can see that Ivy is struggling

and despite his bravado, Noah is feeling it to.

There are of course the same issues for me as last time

and I am ten years older

and I have to get back into the swing of juggling two different classes, although at the same stage all over again.

It is going to be very interesting.

So, should you separate twins at school?

I think there are pros and cons for both.

On the one hand each twin has the chance to evolve without the other

and for Noah, I think this is very important

but for the girls it wasn’t and I’m still not sure about Ivy.

On the other hand, when they have been together for such a long time, is it right to expect them then to function as just one person?

I’m not sure.

The thing I know, now, after having two sets of twins go through the whole separation in first grade plan

is that every set of twins should be considered on an pair by pair basis.

One policy is not going to be right for all twins.

I knew a set of boy/ girl twins who were always kept together.

The boy was charismatic and popular, the girl shy and cautious (much like my pair).

By the end of their schooling they disliked each other immensely.

She felt overshadowed and he felt she dragged him down

and it followed them into adulthood (which is when I met the girl half of the set).

So should you separate?

My advice is ask your twins.

Find out what they want, listen to the teacher’s advice and then weigh up everything before you make your choice.

Immy and Maddy were happy to be together until the end of their primary schooling

but they were very verbal when they had made their decision to split.

At the moment, Ivy is miserable and Noah thinks its wonderful.

I should have consulted them both before making the decision, although I suspect it would have been the same outcome -

some days I rush into things before thinking it through.

In the end, it’s only for a year

and if things don’t work out then they can be placed back together or separated next time.

He has slipped into our lives and our hearts in true baby sausage dog style.

There has been a lot of this:

and this:

and even some of this:

Mostly though there’s just been this:

His name is Dash.

Dash Gordon – defender of our universe.

Playing along with Trish’s Aussie Wordless Wednesday.

I’ve not talked about it much because it’s the same story over again.

Since making it out from the hospital by the skin of our teeth for Christmas

things haven’t been right.

The two abscesses on Ivy’s chest have now become three.

The one lump on Ivy’s knee has been joined by another on her other knee

and she still limps.

The chest abscesses have built and perforated twice and on the second culture it grew my old friend staph.

They cause great pain to the small girl.

Pain and sickness.

Not all the time.

It’s like this;

two weeks good to every one week of soul destroying bad.

It’s doable.

The paed put her on another antibiotic, along with the two that she is already on

and it has played havoc with her gut

and when that happens, her medications don’t absorb properly -

so there has been a need to increase the prednisone.

It didn’t matter, she got blisters anyway.

Blisters and she’s lost two kilos in just under two weeks.

Her appetite is next to nothing

and how can a body heal without nutrition.

The paed doesn’t want to change anything yet.

I think he is too scared of the outcome.

Now, don’t get me wrong.

Ivy has held her own.

She’s stayed out of the hospital for six weeks now,

she’s had great days

good days

bad days

and anywhere in between

but doesn’t this all seem  familiar somehow?

This plodding along at half health.

The paed’s goal at the end of last year was to see her go to school for a whole term,

which was a nice goal, I think

albeit unrealistic.

She missed her first day of grade one yesterday, for IVIG

and it’s questionable whether she should be going today

but Ivy is nothing

if not  a determined little spirit

and so she’s going.

Despite not being able to keep much inside her belly,

despite post IVIG aches.

It’s grade one or bust.

Apparently.

I spoke to the paed yesterday, who basically said he didn’t want to make any plans for Ivy until we had seen the immunologist.

To quote a very fond friend of mine;

“don’t you love it when there are plans that need to wait until you see the other specialist, who won’t (ever)  make plans”.

It’s exactly like that.

I’m not sure what the paed expects the immunologist to do.

Actually, strike that -

his thoughts were that she will want to biopsy the abscess sites because she believes them to be something different entirely.

She thinks they are granulomas, which are funky little quirks in an already quirky immune system.

The body’s way of encapsulating bad things.

I don’t think they are that

and

I don’t want them to cut Ivy open again.

Every time we have done something surgical, it has ended up badly.

I can see us coming up against alot of doctor manipulation in the future

as we advocate for our daughter and they advocate their own agendas.

The thought of that makes me feel angry.

The immunologist sees Ivy once every six months and yet the paed wants her to make all of the big decisions.

I think that’s not right, somehow.

I value her opinion, I’ve learned alot about the immune system from her

but does she know anything more about Ivy as a person than the paed?

Does she know that Ivy becomes deathly pale  and cold to the touch when she is infected fungally

and that she is flushed and burning when it’s bacteria and that she recovers faster when it’s that?

Does she know that Ivy losing weight is a big deal

and that she craves liquorice when she’s anaemic.

Does she know that Ivy has an amazing pain threshold

so if she complains of pain it’s very real

and if she cries out it’s excruciating?

I don’t know that I want her to be directive about more surgery.

I just don’t.

Until the consult  and the new forth coming plan we have gotten ourselves into an all too familiar cycle.

So, it’s a nice thought, the paed’s goal

but unrealistic.

Unless things change

or someone makes a good decision soon

I can see a lot of  sick days on the lounge in Ivy’s future.

For now -

for today

my one hope (my one goal) is that she makes it through her first day back at school.