Browsing Tag



Sick Days (and Long Nights)

April 19, 2016
Sick days

Hold out your clenched hand in front of you. Release your first, second and third fingers. Got it? Three, that’s what you can see, THREE. THAT is the amount of times that I have suffered a tummy upset at the hands of a 3 and 5 year old in the last six weeks. THREE TIMES in the last FORTY-TWO DAYS. I am sick of being sick. I guess it’s my own fault for giving birth to a child who has…

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On Writer’s Block And The Frustrations Of Being Ill

January 24, 2014

I have writer’s block. But not only do I have writer’s block, I have a tummy bug. And at this point in time I really don’t know which is worse. I’ve sat down at my computer 3 or 4 times this week (before the bathroom became my best friend), written things and then deleted them straight away. Or written them, re-read them the next day and rolled my eyes to the heavens. Because, really? I thought writing was my thing,…

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Oodellally Golly What A Day

February 6, 2013

Isn’t it typical that two days after pouring my heart out about Elfie’s disorder she becomes ill? Will and Hux have both been afflicted with man flu this past week and after thinking Elfie and I had escaped it, she fell ill this morning. She woke me up crying at 6am and was lying on her bedroom floor. I scooped her up – poor thing was all rolling eyes and floppy limbs – and deposited her on Will’s side of…

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Illness, Baby Cuddles and Britney.

November 10, 2012

Whenever Elfie is ill I get the overwhelming feeling of “it’s not fair”. When she had a bug as a baby it was all whinging, taking blood sugars, constantly checking temperatures and days in hospital. Thankfully now she’s older, stronger and we know her condition inside-out we no longer need to do the dash to casualty but there are other reasons why a poorly Elfie pulls on the heart strings. She can speak, for one, and when she’s ill she…

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Huxley Pregnancy

The Homecoming

May 23, 2012

  We came home yesterday. Let me tell you, a whole week in hospital on a hot, noisy maternity ward with your new baby really makes you think about and appreciate the small things. Especially when neither of you are ill so the stay seems kind of futile. I  tried to view it as extra healing time for me and extra bonding time with Hux, but I missed Elfie and our home so so much. Our families were brilliant and…

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33 Weeks Pregnant

March 30, 2012

  We are now entering that strange period of time when we could realistically have a new baby here in 4-8 weeks and there is no way of predicting when it will happen. I think the to-do list of things we have left to accomplish before d-day is as long as my arm (I only think this because I haven’t gotten around to writing it yet) and the thought of all the washing and toy cleaning I have to do makes…

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Elfie at 19 Months

January 27, 2012

It’s weird, looking at Elfie now you don’t see a baby anymore. You see a toddler, a mini-person. Especially when she’s dressed in the next size up of 18 months-2 years clothes which seem seem so much more geared towards making toddlers look like children rather than babies. Thank goodness for onesies which I will be keeping her in forever – she’s always my baby in her onesie. Elfie is growing so fast and can now walk if you hold…

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A Hellish 24 Hours

November 21, 2011

When Elfie is growing up I never, ever want her to consider herself different. Despite the medication and the doctor’s appointments she will always be normal. One hugely comforting thing I took from my last post about her is that it’s not just us in a difficult situation; every family has their quirks, their intricacies, their differences. People have problems and issues but they just don’t get discussed, and that’s why it’s easy to feel isolated and alone. So thank you…

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Elfie Pregnancy

Genetics and Pregnancy: What Would You Do?

November 13, 2011

A background on Elfie’s condition can be found here and a post I wrote when she was diagnosed is here.  We had some really good news from our genetic counsellor last week. The scientists in Frankfurt who have been analysing Elfie’s blood have managed to isolate and identify the changes in Elfie’s genes which leads to her condition, and rather than her having one gene abnormaity, she has two. Which means that they are now going to be testing mine and Will’s blood…

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Life with Elfie as a Poorly Baby

July 14, 2011

I‘ve been wanting to write about Elfie’s condition for a little while, to record what it’s like to live with a little one who has different needs to normal babies. Elfie was born with a very very rare genetic condition. She is about one in a very small number of people in the whole world who suffer with this: it’s so rare that there isn’t much research to go on so Googling (my usual saviour) didn’t help when she was…

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Archived: Hospital Beds

April 12, 2011
Ill Elfie

I originally wrote this on 22nd October 2010, around the time Elfie was first diagnosed with her condition. It’s still hard for me to read; I feel a lot of guilt even though I logically know it wasn’t my fault she was so very poorly but the thought that we could have lost our little girl is unbearable. I write this in hospital, sitting by Elfie’s bedside, which is where I’ve been since 5pm on Tuesday. We have been so…

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