I’m blogging in response to another blog. Not that this
response was wanted but isn’t that what blogging is all about, to put out
‘there’ what we want to express?
So fellow fibro Ronnie Sharpe blogged this week regarding
being blessed with CF. I actually don’t have a problem with him and his wife
Mandi feeling that way about CF. If they feel blessed with this disease and it
helps them lead a good life believing that…by all means, believe that. However,
he then wrote the following…
“Mandi doesn't
hate CF + I am CF = Mandi doesn't hate me”…
…"I really feel for the people out there who hate CF. I
really, really feel for the kids out there who's parents vocalize how much they
hate CF. You know what that says to some kids? That you hate them."
So there are a couple of things going on here:
1. Notice that he put SOME kids?
Which is a good thing because I believe MANY kids do not feel this way at all
when they hear their parents say they hate CF. Mine is one of them, because—although
I don’t say it daily, weekly, even monthly—I do hate CF and I have stated that
vocally and in written form.
Hating CF is one thing…harboring
that hatred is another. I go about most of my days not hating it. I couldn’t
imagine feeling hatred every single day. That would tear me up and make me no
good to my husband, my children, my family and friends and mostly no good to
myself. I rather focus on LOVE. Loving that despite CF Andrea is healthy, we’re
able to provide for her needs and we’re able to fight towards finding a cure.
Love is what makes me do these things not hate.
During the moments I feel hate, I
usually blog about it to get it out of my system so I can get back to focusing
on life in a more positive way. But CF
rears it’s ugly head some days and slaps me hard across the face. It sometimes
punches me in the gut. It’s days like the one we had last week where the docs
called to say Andrea’s considered colonized with pseudomonas, she’ll have to go
on TOBI indefinitely and they’re going to sedate her with gas/anesthesia and
perform a bronchoscopy. It’s days like the one a few years ago, when I listened
to a dad tell me the struggles his daughter went through with CF and ultimately
held her in his arms as he watched her take her last breath. It’s days like
those that make me say I HATE CF!
I also am thankful of some great
things that have come our way because of CF. I’ve met wonderful people because
of it, we’ve done wonderful things because of it; in the way of promoting
awareness, raising funds, being a shoulder for one to cry on when they’re
hating CF and much more. It makes me feel proud at how well Andrea handled last
weeks news and how courageous she was to bring her boyfriend along to the
doctor’s visit so she can get questions answered and he can learn what all she
has to endure in order to survive.
You see there are always two sides
to everything and in the case of CF there’s a good (love) and a bad (hate)
side. The struggle for some is figuring out how to focus on the good and when you
start to lean towards the bad, figure a way to get out of the funk and move on. It's really a must!
2. The--I am CF--is true, but it’s
not just solely that. Yes Ronnie and my daughter Andrea were born with CF but
they were also born with brown or blue eyes, short or tall, brown or blonde
hair, etc. There are many things we’re
born with that make us who were are. CF alone is not the one defining factor in
who they are. It’s only part of who they are. Of course then you have to add
the environment someone is born into, family, friends, acquaintances, teachers,
co-workers, religion or none, etc. All these things together shape us into who
we are. So I would much rather hear/read I am Andrea and I have blue eyes,
blonde hair and CF; or my mathematically equation would read like this:
Susie
hates CF + Susie loves Andrea who has CF
=
Together we’ll kick some CF booty! J
Together we’ll kick some CF booty! J
People have the right to express their opinion just as
Ronnie and Mandi do and may I add; they do it quite well. However, there are
differences of opinions and in this case we differ. I do not believe that stating
you hate CF means you hate the person that has CF. If a child does feel that
way there is work to be done by those parents to change that. We should strive
to focus on the positive things life brings us, so saying you hate CF
excessively is not healthy. And I definitely know a lot of families that have
children with CF, whose parents state they hate it sometimes and those kids are
strong, loving, courageous fighters and know the difference between mom or dad
hating CF and loving them.
