2014/10/31

Bees and G-tubes Oh My!

Fall is my favorite season.  It always has been. Now days is reminds me of when Emmeline was in the hospital as a baby.  For weeks I slept in her hospital room until her sweet amazing nurse told me that I was exhausting myself and begged me to get a room in the nearby Ronald McDonald House.  After getting a room there I would guiltily slink out of Emmeline's room after I got her to sleep around 10pm.  I always felt awful for leaving.  I hated thinking she was there alone.  I later found out that after I would leave and she would wake up the nurses would take her out to their station and play dress up with her with all the premie clothes:)  I shouldn't have worried about her being alone because she always draws people in with her cuteness.
I would wake up at the crack of dawn to make sure I got to the hospital before rounds, desperate to talk to the doctor and get more immediate control and input on what would happen next for my child. As I left, I would grab breakfast from the kitchen (usually 2 rolls leftover from the previous nights dinner) and walk as fast as I could to Emmeline's room.  There she would be in a new adorable outfit looking so small.
I made some very tough decisions during that stay, some great and some I regret.  The one I hated the most happened 6 years ago today.  Her  g-tube.  Don't get me wrong, they can be amazing and life saving for some but I HATED IT.  Every second of it.  My daughter has had many surgeries but that was the only one where I sat in the waiting room crying wanting to storm the OR and grab her off the table. As we all know, I didn't, and we made it thought it.  But I still hated it.  So much.

Here she is post op and her first halloween so of course I dressed her up.  Pretty cute little bee :)

2014/10/10

Will They Be Nice?

I struggle with that thought every time I walk away from the cafeteria  after I drop off Emmeline in the morning.  That's where they corral the kids and then dismiss them grade by grade so the halls aren't flooded with kids.  A good idea I guess but it makes me worry.
I always worry about Emmeline is social situations but they are usually smaller groups so she can hold her own OK. But in that cafeteria there are hundreds of kids.  Hundreds of noisy kids.  None of the kids have been mean to her but kids get frustrated easily.  As I walk away I know Emmeline can't hear. I hope the other kids are nice. I know when they talk to her in that noisy room she wont understand what they are saying.  She will do her best to fake it but, eventually the other kid realizes she doesn't know what they said and they move on.  Not moving on to be mean or anything but if they have to choose between a friend who they can't understand and who can't understand them and a friend who can...it's pretty clear but it's just difficult knowing. That they will move on and Emmeline wont know why.  Or maybe she does and she feel rejected? Maybe they will be mean about it, maybe they wont be. But I don't know because I wont be there.
It's almost unbearable walking back to my car. I want to stay and translate for her.  I want to help her friends understand her.  I want to help her not be frustrated. I want it to not be so difficult.  But it is.  Like so many things in her life, she has to work harder to get less.  I think she is realizing that. Which only makes me feel worse walking away.