So, now what?

After you have spent a large part of your time in and out of doctor’s rooms and hospital, things begin to take on a kind of routine.

Have you ever noticed that?

You come to expect that you will see the staff in the ward and the familiar medical professionals who have followed you through.

With any situation, really, where people are thrown together, a comfortable reality evolves.

What happens though, when all of that stops?

When the doctor doesn’t want to see your child for six weeks, when there are no hospital admissions, when all of the contact (your lifeline) is suddenly gone?

Losing the routine that has been yours for the last eighteen months. Losing the people who you have laughed with when things have been good and cried with in the most terrible of times.

People who, in a strange way, you have come to care for because you have been pushed together under circumstance and because your social network no longer comprises of friends, rather it is made up of nurses and a paediatrician.

It’s pretty weird.

Last week we saw the paediatrician for the first time in six weeks.

The first thing he said was that he felt like he hadn’t seen us in ages.

I felt the same way.

I told him; I’m not ready for this big gap.

It’s too long.

Strangely,he agreed.

We haven’t seen the paed medical ward nurses in eight weeks and, to me, that is just plain bizarre. Especially when we were averaging a five day stay every three to four weeks.

Even though we are at the hospital for tests and the IVIG every twenty eight days, we never see the nurses who came to love and care for Ivy like she were their own. Ivy asks me if we will see Pippa and Milly (her two favourite nurses) every time, so I know It is wigging her out as well.

What happens now?

We have to learn to stand on our own two feet, we have to find another new normal. We have to  become comfortable with the day stay nurses and learn to live again.

That is what it’s like.

Learning to live again.

There is a kind of grieving process, a letting go of what we know and an acceptance of what will be. Digging in for the long term, settling into the cycle of infusions and getting on with life.

For Ivy that means pre school and being able to go places

For the family, it is being able to rely on me more, trusting there will be less upheaval.

For me…

I don’t know.

I guess, I need to find a new network, get out, be social, *gulp* make friends. Something I have not done for almost two years because when Ivy became very unwell, I had to have her in what the immunologist referred to as ‘enforced isolation’ and that meant me as well.

I lost alot of my friends because they couldn’t understand why I couldn’t go out.

I had to leave the one group of mothers I felt comfortable with.

I had to leave work.

 I somehow  lost me in this process and now I need to find her again, although I think I am different from who I was before Ivy’s illness took flight.

I’m not really sure where to start. I don’t think any of us do.

As the weeks feather out into months, it seems to be a case of one step in front of the other.



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