Aug 29, 2012

Our Next Leg - Weeks 9-11

These last few weeks have been rough.  Other words that come to mind to describe it are shitty, unbearable, exhausting and nerve-racking.  Dylan has been dealing with seizures and brainstorming (which means she had uncontrollable fluctuations with her temperature, heart rate and blood pressure) and then last Sunday, she suffered an asthma attack that was bad enough to put her back on the ventilator.  I shut down after learning of her asthma attack.  And I'm still barely holding it together over a week later. Even doing things that I like aren't much fun.  I'm not completely depressed, but I'm definitely on the cusp of it.

So what to do?  Well, I've been living with my feelings about everything.  I'm angry.  I'm extremely pissed off that Dylan is lying in a hospital bed a meager fraction of herself and that prognosis is that she won't improve much from where she currently is.  I'm pissed that the doctors at Blythedale Children's Hospital are so experienced that they don't believe in the miracle and, therefore, treat me kindly but a bit condescendingly at the same time.  They are sometimes annoyed by all my questions and give me patronizing glances when I tell them that I know that she'll recover.  I'm pissed that it's so hard for me to find out what I need to know about stem cell treatment.  I pissed off that it's so damn expensive to get up to the hospital and that it's so bloody far away.  I'm pissed that I'm dealing with this by myself; and by that I mean that I'm the only parent she has that gives a damn.  And I'm pissed that this is my life.

When I heard the message from the hospital last week Sunday, my heart sank.  When I heard what happened, I felt my sanity melting away.  It was such a huge setback for her to be put back on the ventilator.  It just wasn't the type of news that I wanted to hear.  After having the seizures the week prior, I was already fragile emotionally and this just put me over the edge.  I could see myself looking over the cliff and could see the bottom and it was scary.  My mind raced with negative thoughts and fears.  What would she look like when I saw her again?  Would I be able to deal with seeing her back on the vent?  Would she be able to come off the vent?  What next?  Is this what I was supposed to expect with her condition?  Is this really my life??!!!  I was frozen with fear and dread and didn't recover....still really haven't.  But after many days -- too many for me to admit to -- I'll be going back tomorrow to see her.

I know that I'll cry.  I'll bawl, actually.  I'll cry out of shame for not seeing her for so long, for not being strong for her.  I'll cry because I miss her and am down right angry.  I'll cry because I can't do a damn thing to change her situation.  It's simply not fair.  But just saying that is not right. Because a statement like that implies that it's okay for this to happen to someone else and that's definitely not true.  No one should have to deal with this, no one.  So I allow my emotional pendulum to swing from agony to action.  I try to replace my thoughts about what I face everyday to what I can do to change the situation.  I go from thinking about the dry looks I get from the doctors and staff who "know so much" to feeling my heart and soul filled with the knowledge that I will find the solution for her.  This will not all be for naught.  I know that.

Stem cell research.  Closing business deals.  Taking care of myself.  Remembering to see the good in all of this.  That's my focus.  That's my charge.  THAT is my life.


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