Dan is all for me keeping my mind active but thinks I try and plan too much into a day and I'm beginning to think he might be right. The doctors appointment was the start and end to the day pretty much. I only had to sit in the waiting room to be confronted by mothers with their small babies, blonde curls, usually girls, to suddenly have that panic sweep up inside me.
Ellie was in the waiting room with me you see, we had sat in this same spot some months before when she was due her injections, that funny time, when she lived at home, you remember, those five weeks or so. Her name was lit up on that same board that I was desparately wishing my name would light up and trail across in little red l.e.d lights. I bit back tears until eventually I could leave, I couldn't hold them any longer and found myself being handed paper towels by my doctor.
When I left, my plans to meet friends and collect generously donated raffle prizes were all suddenly a very bad idea. So apologies to those I let down today. This is the day of NOT talking.
On the bright side, we had a letter from the research people in Manchester, the scientists in Amsterdam have identified the second gene mutation that made Ellie die. See, its not all bad.
I got some local press coverage again this week, not a bad article at all.
http://thenantwichnews.co.uk/2011/05/11/family-and-friends-of-tragic-ellie-in-triathlon-fund-raiser/
I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
How to get the best out of this blog...
All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thursday, 12 May 2011
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i no weve never met and you dont no me but if you ever need to talk im here, sometimes its easier to talk to a stranger ,i have experienced loosing someone and going through the motions and its good to talk even if you feel your going over the same thing again and again,just wanting people to listen and not answer.xx
ReplyDeleteDays like that must be so tough. Sending lots of hugs. xx
ReplyDeleteWe are in England seeing the lovely Harrison's at the big family wedding this weekend. Made me think of you. That's amazing Ellie for you xx Hold on and keep strong xx
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