‘Angel Emilee’s’ (story written by her dad Charlie)

Emilee 1


Continuing on from the last blog I had written I think it is about time to go into after my beautiful Emilee had to leave school . Emilee had a hard time with this, but she could not stay awake in class and was starting to get to the point where she would get violent out of nowhere.  It seemed crazy to me when the violent outbursts would happen because Emilee was the type  of person that would not hurt anyone or anything.

I learned when her outbursts were going to happen because you could see in her face it was not her or not the true her it was a crazy blank look . Only people who spent a lot of time with her could see it happen.  This lasted for the rest of the time she was with us but it did seem to have cycles where it would happen more in certain times than others .
Soon after Emillee would behave like this, she was always so sad and saying how sorry she was which would make me very sad.  I knew that was not how my girl normally was but it did make it hard for us to take her to see people she did not know well because they where scared of her and it seemed to me like Emilee knew this and it would make her worse.  When she was not doing this she was the most loving caring person in the world.  Emilee had dreams and one thing she would often say was 'I want to be a scientist so I can find cures for all the diseases in the world' this was so nobody or anything would ever have to be sick ever.  This often lead to her becoming extremely upset and she would start saying everyone is dying and she would scream and cry.
It was so hard on her not being able to control all the feelings she felt so much. I had to hide my tears a lot of times. I tried to never let her see that i was upset or sad about anything for good reasons. If Emilee seen someone feeling bad she would try to cheer them up if she was feeling good and having a good day but if it was a bad day she would have a very hard time and her mood would change quickly from happy to sad to angry and so on. This could happen very quickly and go on like this for hours changing from different moods all in a matter of minutes.  The emotional and mental side to ROHHAD is incredibly difficult for the children to go through and so incredibly hard for all the family.  That is all from me just now I will have another blog soon about Emilee and my son.


Lisa Hunter

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