Some days are good. I always hope for those days.
Some days are bad; in fact, some days are so bad, I worry
that I will get home, go to sleep and get up and she will be gone.
And I will hate myself for having been away from her.
Lately, this is all I think about. Because there are more
bad days than good.
Ebony can no longer communicate verbally; she cannot
initiate her needs; she cannot stand without assistance; her right side, leg
and arm, are impaired – lame, if you prefer – and she cannot feed herself. She
is incontinent and needs to be cleaned, changed and dressed. Every day she
needs to be cleaned, bathed, dressed, fed and later, put to bed. It is
physically and mentally -- and emotionally – taxing. In five months her
condition has deteriorated and this is where we are. Nevertheless…
All of these things are inconsequential to me: I will do whatever
I have to do to make her comfortable and take care of her. Sometimes I just say
it or write it because this is my battle cry. I just have to say it out loud so
I can keep on keeping on. It is not easy; in fact: it is difficult. Regardless,
I keep on. Ebony is here and she is surrounded by love. Her mother does what she can and we keep on keepin’ on. Ebony is here, in the apartment. There are no roommates, no
one screaming in the middle of the night (well, Queens, but no one, you know,
in her room) and there are no strangers peeking in and poking around if she
wakes up. It’s us and just us and this is how we do. I will go down in a hail
of bullets before I put her into some fucking facility.
Doesn’t make me any less frightened, just defiant.
And it doesn’t make it any easier: not for me, not for her
Mother. Not for Ebony.
And yet, here we are. I promised her I would not put her
into one of those places a long time ago. We never really discussed it but that
is where we’re at. I have kept my promise. It is not easy,
But I keep trying. I keep trying. I keep trying and it is
overwhelming at times. Today was one of those days.
Nothing good to report, just more whining and whinging on my
part.
Trying to stay strong -- for Ebony – but sometimes I fail.
Tomorrow, I try again.
What else can I do?
ETA (Edited to Add): I heard a great joke tonight -- How many Irishmen does it take to change a lightbulb?
Go fuck yourself.
Ha.
Go fuck yourself.
Ha.