And now, it begins.

She gets frustrated when she needs her diaper changed.  She kicks her legs in all directions, hoping to make contact with the body, that is attached to the cold hands, that are currently tearing away her last bit of dignity.  She says she gets embarrassed, and I can’t imagine how she couldn’t.  She’s seven, not two, and she was already a very smart and mature young lady, for her age.  She was starting to get very private about bath and potty time.  Even accidentally opening the door while she was on the toilet, was too much for her to take and she’d give a much deserved scolding to any who so blatantly missed that the door, was closed!

She’s frustrated that she can’t wear clothes, for obvious reasons, but not to her.  She’s frustrated that she can’t communicate, well that we don’t understand her is more like it, in her mind she’s communicating just fine, only we don’t speak her language.  I tell her “try again sweetie, a little slower this time and take a deep breath”.  After a dozen or so tries, watching her tongue closely, the words are revealed to us.  I tell her to just say “Dad” when she needs something, and we’ll play a game of 20 (or 75) questions.  So far it has worked, but I know she should be practicing speaking as much as possible, this is the only way she’ll relearn how to do it.  But I hate to see her frustrated and my instincts as a father, to want to problem solve, are at high alert.  She cried so hard today when she was desperately trying to tell me something, but I kept guessing wrong.  I know how frustrating this must be, I know because I watched her lifeless body for three months, not knowing if she’d ever move or speak again.  I know frustration.  I try to explain to her that she’s doing great, compared to how she was doing while in the coma.
But to Ella, there was no coma.   She was a vibrant, talented, six year old, who went into the hospital and went to sleep.  When she awoke, she could no longer speak, or walk,or move her body the way she used to.  Let us all imagine that we go to bed tonight, expecting to do all the important things we have planned for tomorrow, but when we wake up, we’re paralyzed.  Frustration wouldn’t even begin to describe how we’d feel.  Especially us adults we aren’t nearly as strong as our children, we’d know right away that something was severely wrong with our bodies, and a wave of fear and panic would sweep over us.  Then when we attempted to vocalize our fear, to the people in white lab coats standing over us, we’d find that we’d lost our ability to speak and more panic would overwhelm us.

I’m so happy to have my Ella back, I don’t care about the lack of speech or her inability to reach her arms around me and hug me back.  But Ella cares, she wants out of this bed and out of this hospital and she wants to go back to being that vibrant, young girl, singing and dancing in her room, bug hunting in the back yard, playing with friends at school.

I can only tell her the truth, that she needs to work hard to be able to talk and walk again, that it won’t be easy and that she will get frustrated.  I don’t tell her not to get upset, I ask her to try and stay calm and to listen to the doctors and the nurses and physical therapists.  I’m so sad to see her going through this, but I’m also so happy that she is alive.  I’m devastated that my daughter won’t make a full recovery and get to go back to her old life, the only life she knew.  But I’m overwhelmed with joy that she will still have a life, that right now she is cancer free, and that we don’t know what the future holds and that it could be awesome!

Ella’s new life begins, let’s hope it’s long and fruitful.