October- Day 12

ALMOST FRIDAYY!! good thing right! Now tonight im doing something differnt. Its not really a fact. Today im going to write about Rett Syndrome from my perspective. Im writing about what its like to have a little cousin with Rett Syndrome.


Here we go.


The thing about having a small imediate family is that every birth is huge. every death is like your own. every fight is like its you. Its like they arent just your family members that live miles away and you dred going to visit. Its like every one of them hold a peice of you. I come from one of those families. I spend more time with various family memebers than with my friends from school (which is apparently odd for a 15 year old girl).


As you can imagine the news of the last little baby in my immediate family was not taken lightly. Everyone was so excited for the new baby to be born! She would be the perfect little girl and no one would ever suspect anything was wrong.


And nothing wass! when she was born on april 27 everyone was so pumped! i remember telling the bus driver that after dinner i was going to visit my new baby cousin. I remember how when we got to the hospital that perfect little girl was siting content in her sisters arms. I asked Sarah if she would share her barbies when Emma got old enough to play with them and she replied "only if shes nice to me". Such a sarah remark. It seemed like every thing in the world was perfect.


Until she stopped developing. I can recall moments in like fifth grade when my friend had a new cousin about emmas age and she said that one family outtings she was always stuck chasing the baby around. I remember thinking "wait a secondd..sometihng isnt right". There are times that i look back on those days and think " ohh if only i woulda known what we were in for" or tell myself not to take the little things for granted. Like for instance her ability to hold toys. I wish she still had that.


It wasnt till February 08 i started taking my own thoughts as something real. When em had her first seizures. that was such an eye opener for me. and then the months of serching. i remember being confused at what was happening to little emmy.

(It took like fourteen tries just to get this picture right(:)

It wasnt until the diagnosis that it really hit. This was real. this isnt fake. Now a days i feel like em and sarah have become my sisters rather than my cousins. like theyre part of me. Somedays i cant shake the feeling that the cure is right there. all we need is a little help. Ive come to be that help. Will you be that too?