Through everything with emmeline i kept telling myself "if "this" would just happen i could finally relax". That was back when i thought there was only one thing wrong with her. When we would find another i would think "surely this is it". but it wasn't. not by a long shot. We really were blessed though. CHARGE has affected emmeline in a very small way compared to her peers. Does that make it easier? not really. It's always hard to watch your child struggle. it's weird to think she has a mild case when she has 9 specialists and 7 therapists but that's just how it works. a little bit of everything. then add the stroke and that just makes everything a little more complicated. well let me tell you. MY KID IS AMAZING!!!!!!
even when she was a newborn in the hospital and a doctor would say "i don't think she'll ever..." or "if she doesn't (fill int he blank) then we will have to..." she would turn around and prove them wrong. no, we couldn't trick her or anything. she had to really want it. and usually she did.
Emmeline can make my life pretty miserable. when she does something she goes all the way. none of this half way stuff. if she wanted to sit she would sit, walk she would walk, eat she would eat, stand on the table and scare mommy, check. she comes by her stubbornness fairly. i mean she is half perkins half harris. And it has saved her life. she would never let go. she sacred us several times getting really close to the edge but she still hung on.
even with all her accomplishments before now i still didn't feel that big relief. there was always another huge goal. something i really, really wanted. that made it feel like i couldn't breath in all the way. the other day, i took a breath. a big one. it reached parts of my lungs that haven't moved in a while. it didn't stay that way but i breathed. all of a sudden i could see other things the next feeding, or appointment. things for me. weird. have i done them yet? no. but i actually had room in my brain for them.
the event that really pushed me over the edge of living was emmeline's annual evaluation with ECI. she has been at least 6 months behind in every area since birth. well, after the eval she got the following scores. they are by month age. emmeline is currently 28 months old.
self help/adaptive 26
communication 21 25%delay. pretty good for having 50% hearing
gross/fine motor 28
social emotional 30!
when they told me the scores i asked if those we just the points she got and not the age. they smiled and said no, it's that age! i was floored! She really is amazing. she did all the hard work. and through her hard work we can both start living. her for the first time, and me again. it has truly been wonderful to watch her grow and learn. pretty much since May 10. before that she was so focused on staying alive. then everything equalized. well, not right away. like i said, she worked/works really hard. if she would every let me video her doing something other then dancing i could show you. you will probably see several more of these type of posts as things start to sink in. i mean i posted plenty about how hard everything was. i figure i should try and give as much time to being happy right?
so, now if i could just remember what to do with an "average" kid.
i have been trying all day to add a couple cute pictures of emmeline to this post but sadly you will have to wait until next time.