Sunday, January 6, 2013

Nurturing The Crew Of This Ship

This evening I was putting the children to bed.  The Christmas break is over and school is back tomorrow so I was spending a little time in pillow talk with each child to reassure them that fun is ongoing.  We can go on outings other Sundays if they ensure they have no homework left to do, it's not long until mid-term, nobody likes going back to school and so on...I was expecting huffing, puffing and complaining. I was expecting 'I forgot I had homework', 'I didn't practice piano', 'I never bought the book I need'... What I wasn't expecting was a breakdown.

You have to remember that when Louise was born the children were all three years younger than they are now.  They had never experienced anything like what we all went through before.  In a lot of ways and from my questions to them since, a lot of what was going on seemed to go completely over their heads...well the younger ones anyway.  Her first operation was on a baby they'd only had to themselves for four days, they barely knew her.  The second operation was a surreal experience I don't think any of us would even believe happened only for this blog.  It's different now.

The specialist cardiac nurse told me recently that we'll find this time worse.  I didn't hear her to be honest, it went in one ear and got lost somewhere.  I remembered it this evening as I was sitting on the side of a bed holding a sobbing 10 year old.  You see, Louise isn't a generic baby any more, cute and cuddly and smelling of Heaven.  She's Louise, around whom her siblings world revolves.

Louise has this quirky little way of being soothed to sleep.  She loves someone, anyone, to stroke her lower leg or arm or tummy very very gently with their fingertips.  It's like an off button when she's tired. Her eyes roll luxuriously in her head and she's OUT.  This evening, after a trip to the zoo she was ready for sleep but as usual fighting it.  She shares a double bottom bunk with her 10 year old sister, Isabelle.  Incidentally, poor Isabelle briefly had the bedroom to herself when Peter was finally moved into his own room.  She went from being like a contented dormouse entwined with her sibling asleep and safe to resembling a poor lost soul floating noiselessly around the house each night hoping someone would take her in.  The thing was...nobody wanted her, their beds have grown too small now...or they have all grown too big, there's not really room for two in most of the beds any more.

It was the final incentive to get Louise out of our room.  There was no real medical reason she needed to be in with us...the reasons were unashamedly sentimental.  The fact is...and I say this with some genuine sadness...the likelihood of another child in this family is pretty slim.  Time has caught up on us.  The memory of the longed for twins we lost still brings a tear to my eye..but then we couldn't have had Louise.  We'll meet them in Heaven and this time there'll be no tears goodbye...them and the rest of our children who got there before us...little lives that were but a brief whisper and the world doesn't even know they passed through.  We do though, and so does God and that's all that matters.

Well anyway, Isabelle was delighted to have a new cuddly little bundle to snuggle with and in the mornings when we go in, just as it was with Peter, it's hard to tell where one child ends and the other child begins.  Like two little animals hibernating in a nest.

Tonight Louise asked Isabelle to stroke her tummy while she was going to sleep.  I don't know if you're aware of quite the mess Louise's tummy is, cardiac scars, drain wounds, stitch triggered questions in Isabelle, how do they reach her do they break her bones...what's the machine long will she be in hospital...she could go no further.  Clearly I answered her questons on a 'need to know' level of detail and with the gentleness due to a child teetering at the edge of a major life event.  I don't know whether it's been building up or whether it's a new realisation that her precious precious precious little sister is going to be gone from her but this little tween had a heart wrenching breakdown.  And I realised that while the pregnancy and the early days were very much about me as well as Louise...this time I have to put on my big girl pants and focus on the children who know Louise so so much more than they did before.  They're older than last time and they know much more.  The fact that Louise keeps saying 'I don't love no 'opital ' isn't much help to them.  I guess it's not for nothing the cardiac department in the children's hospital has dedicated psychology staff, not just for the child heading into surgery but they are also freely available for the siblings.

I think we'll manage to carry everyone through but I'm prepared that my little women and of course Peter might need a few handkerchiefs and a safe shoulder of comfort before we're through.

Just so you's all triggered by the fact that we're seeing the surgeon on Friday.  We'll get an indication of what timeframe he's thinking of.  The cardiologist has said in the next 3-6 months.  I'll update when we know more.

The cardiologist has also contacted the neurologist and the dermatologist for follow-ups re the new findings in Louise's brain scan.

So...continued prayers are requested and very much appreciated.


Jennifer x


  1. Continued prayers

  2. This post really moved me Jennifer. Praying for Isabelle and all the rest of the children (and you and John of course).