April 27, 2018
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staying in man with packed bags
  Staying in hospital I'm a well seasoned hospital stayin-er. My daughter has had numerous operations, inpatient stays, investigations. We are the family that rocks up, fully prepared, know all of the staff, and chat to other parents. But it hasn't always been that way when we have been staying in hospital. Walking into a hospital ward for the first time can...
Eureka museum
Eureka! Well, we have had a fabulous day out today. It didn’t look promising this morning. Ben had a full blown sobfest when we mentioned that we were going to a museum (he loves museums, he just wanted to go to our local one…). He was also upset that it wasn’t yet Halloween, another full week to wait for that...
image representing epilepsy with a lightening strike in the head
Severely disabled Epilepsy Global development delay Special educational needs   My daughter has many names Monkey, Pickle, The Tiny Tornado I like the ones that speak of her spirit, her energy, her love of life Names that shatter stereotypes Not for her the sad piano music, conjuring pain Like needles in the heart Her soundtrack is a loud and joyful orchestra With mischievous melodies and the hammer of drums A wild and...
Energy is like a phone battery that never charges for M.E suffers
 Early days  "The smallest things in life matters the most." Those words are never more true when you're plodding along happily like every other parent does. Usual routine, play days, activities with friends and family, fun days out. The path you're on is smooth. A couple small bumps but feels comfortable on every step you take. Then... Wham!  It's like the ground has crumbled...
special fancy word
  I am not meaning the intentional use offensive and inappropriate words or phrases that are meant to hurt and abuse. Here I will be exploring the use of everyday language and how it relates to my son’s disability. Special I have come to really dislike the word ‘special’, especially if it is used to describe Ben! Like every other child, he...
hospital bed
  So I’m sat in Bolton hospital with Elise finally snoring her little head off, she’s poorly with tonsillitis again, this is a common thing with Elise, I’ve fought for 18 months to get someone to finally agree she needs them out! Anyway being back in this hospital scares me, it brings my anxiety on, it’s brings back so much, it...
Disability symbols
  Misfortune? Adversity is defined as difficulties or misfortune, but is having a disability really a misfortune? Sure, it can be a difficulty at times and when the world is not inclusive and is so judgmental it makes it only that much more difficult. Living with a disability makes a person no different than an able-bodied person, they just have different capabilities. In all...
Christie and Elise understanding
When you know, you know I was out shopping yesterday (battling the snow and wind because I’m mad!) as usual Elise was getting a few stares but I was ok so it didn’t bother me to much. I saw a women walking towards me pushing her son in a wheelchair. We both look at each other kids then at each...
March 21st WDSD World Down Syndrome Day was first observed around the world in 2006. In 2011, the United Nations assembly declared March 21st as World Down Syndrome Day with the stated aim of raising public awareness. The twenty first day of the third month was chosen to represent the third copy of the twenty first chromosome which is the...
Christie and Elise
Elise Smashed It I'm Pregnant! Finding out I was pregnant was a little bit of a shock, all these questions were racing through my mind, how on earth could I look after a baby? How would my life be with a baby in tow? I work full time in a job I love, how will I fit that in? Can I...
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