Ivy was denied the three weekly Intragam and so her meltdown week continues.

I’m disappointed.

Mostly for Ivy because she feels awful for over a week before her next infusion and she just doesn’t know why.

Mostly for Ivy because for that week before she has her next IVIG she starts to pick up all the nasties floating around this neck of the woods (heading into the throws of Winter) and so she misses out on life in favour for lying on the lounge.

You know, when one child is sick, in a house of many, it effects them all and so, I am hurting for them too.

The highschool kids don’t get all the attention they need and homework is left to the last minute because they are helping me run the household and helping to soothe the little girl.

Lily and Mal are often left with the feeling that they are not heard above the cry of the sick child and cannot fit in between us for a hug, for some comfort.

Little Noah has to wait for me to read him a story, wait for me to be free for a while. He seems to always be waiting in that last week.

They all take it though, with little complaint. I mean, what can they do?

They love Ivy and they know she needs to have monopoly for that week

I have noticed though, that there is a trickle down effect going on.

Under the strain of having to pick up more of the chores, having less of my time, the big kids fight more.

There are more tears from the girls and more disruption from the teenage boy.

It’s only normal.

In this house we call it ASB (attention seeking behaviour).

Everybody – young and old looks for comfort and love when they need it, even more so, when it isn’t available.

When it’s not freely given, people look for any kind of attention they can get.

My kids are no exception.

Lily and Mal tend to spend more time in their rooms, withdrawing from a situation they cannot change, as if in silent resignation of the week that will be.

Noah, sweet little guy that he is, will sneek in a cuddle whenever he can. He becomes more needy too, especially in the night time, when Ivy has long gone to bed, he wants to talk and snuggle and he wants his father and I to sit on the end of his bed until he falls asleep. He looks for that security

and I

feel totally and wholly overwhelmed.

I know that I am more snappy, more stressed, less kind.

I become shorter with my answers and conversation as my time becomes limited to sitting for long periods with the girl.

The guilt of all of that is heavy.

I think about what I could do to change things, long into the night, when I should be asleep.

Go back, try to talk the doctors around to pushing her infusions to every 21 days, try to talk with the kids about it, try to balance my time in the meltdown week better, forget the washing, the state of the house, forget trying to please everyone all of the time and just bunker down and take care of the most important beings in my life

instead, I just feel exhausted and achy and sad.

I lay awake and imagine

this must be kind of how Ivy feels.

Originally posted at 5M4SN