This blog is dedicated to my baby daughter Amelie Kiki and her courageous fight against Rett Syndrome. What is Rett Syndrome? Imagine the symptoms of; Autism, Cerebral Palsey, Parkinson's, Epilepsy and Anxiety disorders all rolled into one little girl. Now imagine the pain of seeing your beautiful baby girl slowly slipping away before your very eyes.
Monday, 20 August 2012
Regression?
Oh Holy mother of god!!!! How hard is this job? The last two days have just been the worst. Amelie has woken up at around 5am this last few days and has done nothing but cry and scream and self harm. That has been our whole days trying to calm her down, without any effect. Stephen is at the end of his tether and I am not too far behind. Grace has been staying at Auntie J's house for the last two days, so that just left Scarlett who is easier to handle, she is a little more mature so knows when to stop pushing me. We all went our for Sunday dinner yesterday as it was Stephen grandmothers 1st anniversary, so we went to our local hotel for what should have been a nice relaxing dinner???? Oh Jesus, it was anything but... Amelie started to kick off right away. Nothing we could do would calm her, she wouldn't eat her dinner, she wouldn't let us eat our dinner, and worst of all we didn't know what to do or what was wrong with her. Everyone was looking at us and I was getting so flustered, Stephen took her home while Scarlett finished up, suddenly the tears started flowing from MY eyes! I was so annoyed at myself, but it gets so overwhelming sometimes, especially when your in a room full of kids her age and they are eating their dinner and communicating to their parents what is wrong, just so depressing sometimes.... So to calm me down, Scarlett and myself went for a drive, looking at all the houses that we would like to live in. Oh I didn't mention how desperate we are to move have I? We are in desperate need of more room and we live in a tiny 3 bedroom council house, we want to live in the countryside and prices of houses are so cheap... But the banks here???? Grrrr I won't go there..... Anyway Kiki has us up early again, we are supposed to be going to Dublin to a Gaelic football match in aid of Retts awareness, but if Amelie doesn't nap that will not be happening! Just pray for us that today is a different day for Amelie, but some how I don't think so.
Labels:
crying,
girls,
medicine,
parenting,
regression,
remedies,
retts syndrome,
screaming,
special needs
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