I am a little CF crazy right now. May is Cystic Fibrosis Awareness month AND
when we have the largest CF Foundation fund raising event! When Bella
was young she didn’t realize we were going into “CF Season” but she did notice
that I talked more about her having CF.
One day we were in the car and she asked why I told everyone she had
CF. I explained that we wanted more
people to know about the disease so they could help us find a cure. This was her first introduction to advocacy,
something that she has been more and more involved with ever since.
Bella’s outgoing personality is perfect for raising
awareness for CF. She can be a VERY
bright light and there is simply no ignoring her. The first time she spoke at an event I was a
little nervous of how it was going to turn out.
She is fearless and in no time charmed her way into getting her hands on
the microphone during sound check. She was singing and calling people over, it
didn’t faze her at all that we were at a serious Clinical Research organization. When it was our turn to speak I held my
breath. I had NO idea what was going to
come out of her mouth. Then, standing
there with her face peeking out just over the podium she transformed into SERIOUS
BELLA (I had never met her before). She
spoke from her heart in a quiet voice.
She was not silly or funny. She
simply told everyone what it was like to have CF and that she wanted a cure and
thanked them for helping her find one. She
got a standing ovation! It was the most
amazing thing I had ever seen, and of course it disappeared immediately. She went right back to her sassy self.
Bella is obviously a natural at sharing her feelings, but
for me I tend to keep my opinions more closely guarded. People often describe my thoughts as being a
“unique perspective”. I used to wonder
why I saw things so differently until I took the Myers Brigg personality test. My “matrix” is E.N.F.P. (Extrovert, Intuitive,
Feeling, and Perceptive). If you were to
think of an animal that best represents an ENFP it would be the Unicorn, a big
pink polka dotted Unicorn. We are never
described as “down to earth”. Never ask me my opinion on something like the Presidential
Race. I guarantee I will not be as upset
as you would like me to be. I don’t get
that worked up about something that is going to last 4 years - 8 years tops. An
ENFP would rather just go start a new country than deal with what is going on
in politics right now.
Refreshingly, when I share my thoughts on CF parenting I
find they are pretty much the same as the other CF parents. I know that I am speaking on behalf of every
other family battling Cystic Fibrosis because I am involved in the lives of
other families with CF. Being of like
mindedness with others is completely new territory for me. I can’t help but see the similarities between
myself and Bella. When we speak about
this disease we are speaking about others just as much as ourselves, so we
speak in a way that is bigger than just our individual personality. She becomes serious, I become normal.
When I first became a part of the CF community I described
it as a heart opening experience. It has
been that and so much more. It has been
a heart changing experience as well. It
is not always fun knowing the treatment plans of most of my friend’s kids. I don’t like the feeling of worry I get when
Bella goes home from the hospital but someone else stays. This is no longer just about Bella. This is about loving so many more people than
I ever thought possible. I feel loved
by more people than I ever thought possible as well.
I hate that pain and suffering is so closely
tied to all this love but I don’t see this going away even WHEN a cure for CF
is found. Jesus was very clear that we
would have suffering and He was also clear that love was the defining part of
being His followers. Jesus is the perfect
example of this because it was through His suffering that He loved. There is no way to FEEL and not feel pain and
love …so we need to stop running from one and hoping for the other. Now this is my kind of ENFP conversation!
what is your Myers' Briggs personality matrix? https://www.16personalities.com/
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