There are many people who think that Ivy should live in a bubble.

I’ve heard that a lot lately.

Especially from some of the girl’s doctors.

Some, who are immune deficient,  live that way.

I remember when Ivy was first diagnosed and we were placed, in what the immunologist referred to as,

‘enforced isolation’.

It was in many, many ways a terrible time for all of us.

The other kids had their lives turned upside down as we tried to stop as much illness as we could from entering the house.

After school activities were abandoned.

Friends were no longer able to come around (mine too)

and there were hardly any visits to other people’s houses.

Things were cancelled at the last minute if there was even the suggestion of impending lurgy.

Shopping became a one man race around the supermarket, hunter gatherer style,

while the other parent stayed at home with the family.

We were stripped bare of  one of the most important things about being a human -

being part of society.

The kids were very good about it but we all felt strange in those Winters of our non existence

and sometimes I find that we still do it

almost out of habit

almost on remote.

Just so you know, it never worked.

Kids have to go to school, husbands to work and then there are emergency trips for basic supplies.

Even if we never left the vicinity of the house the germs still found their way inside.

It’s the way of the world that these little micro organisms survive

and for most people they’re not really a bother.

I admit though that there were many days in the beginning where I just felt safer staying in.

It’s very easy to do.

At home, you know the people, you know the risks, you have a good idea of the kinds of bacteria that reside along with you.

The stress of going out into the community with a child who’s immune system is dysfunctional was largely taken away.

I didn’t have to worry about random sneezing or coughing, which could drive me insane (and quietly sometimes still does)

or even worse if there was any kind of vomiting bug around.

If colds and flu made their way into the house at least I knew what to expect.

For example – Malachy comes home with gastro.

12 hours later, Noah starts vomiting.  I know then, without a doubt, that Ivy will be next.

The biggies and Dave may or may not escape it

but by then Ivy will be in the hospital with me (who may or may not escape it)

and it happens just like that over and over again

but it’s okay because I feel as though I have some control over it.

I know what to expect.

Where as;

We go to the shops and I mistakenly put Ivy in the shopping trolley and despite taking every precaution

that night Ivy begins to cough.

I have no warning

Nobody else is sick, so I don’t know what to expect.

Her heart rate goes up and her temperature too

I flap a bit

and feel out of control

and wonder when the right time is to ring the paed and tell him the girl is going down hill.

I hold on for as long as I can

but when we get to A &E  I discover she has pneumonia

and then proceed to feel all kinds of terrible because I

a) took her out and

b) waited too long.

The expected versus the unexpected

Isolation versus society.

Honestly, there was a time there where there really was no question which I preferred

but one day you wake up and you think

this is no way to live

children need friends

and to go outside into the sunshine

and to experience all the things that the world has to offer.

I needed it too

and so we made a choice – all of us.

It was that we would not live in a bubble.

Ivy would not be a bubble wrap child.

We would live our lives the best we could under the circumstances we found ourselves in.

Yes, there would still be sacrifices.

Life would still revolve around the limitations of Ivy’s illness

but we could modify

and change

and develop new stratagies

and sometimes

take risks too.

Sometimes you have to dance.

It’s all about finding the right balance.

Part of that is knowing Ivy’s little quirks – like a two hour trip to the shops is going to render her tired for the rest of the day

or that she can’t be out in the sun for very long at all or her skin will burn and blister and both will make her body work hard and put her at increased risk of illness.

Part of it is finding the line between over and under medicating her (the IVIG goes a long way to feeling safe),

listening to the advice of the doctors and following their advice

and part of it is going with your heart.

There have been times, people who have been reading for a while will know,  when I second guess our choices

and times when things have gone horribly wrong

but the thing I’ve noticed most about now is that it’s easier to pick up and start again.

For every single bad day,

down day,

laying low day

there are many more full,

happy,

amazing days

that make it all worth it.

Knowing that there is life out there keeps everyone moving forward to find them.

What is good health without happiness -

if you can’t use that health to explore

and discover

and feel joy.

Lets face it, we have just one life to live on this earth

and I want Ivy to see all of the beauty and colours clearly

and not through a haze of bubble wrap.