I've been wanting to write about this topic for some
time but was always unsure where to start. What I want to say forms over and
over in my mind, then, just as quickly, dissolves. The angry part me begins and
then quiets down. The tired part of me begins then quiets down. The Advocate in
me speaks up and is usually the voice that stays, making the right words come.
It's the Advocate in me that speaks now.
I talk a lot about Morgan and
her having Dup15q Syndrome. I talk a little about my family and how we handle
everything. I've asked myself many times whether or not I aught to talk so much about everything. To share so much about
doctors appointments, tests, therapies, etc. This question is one that I've
visited often, but always, after much thought and consideration, come to the
same conclusion: I'm in-explicitly drawn to openly discuss our Morgan. To share
her with the world--or at least with anyone who is interested in knowing about
her. And time and again, I've seen some incredible results from my efforts to
be open.
There are those who do not
agree with speaking so openly about medical issues and disability. These things
are viewed by many to be "private" and that talking about these
things is in poor taste. I can see that.
I also see where many are uncomfortable
with disability and illness in general. I'm not sure why this is. Perhaps it's a
strong reminder of our own fragility? Perhaps it's being different that makes
some uncomfortable. The possible difference in looks, mannerisms and behavior
that some have trouble dealing with. Perhaps, it's the different lifestyle of
the day-to-day challenges that most simply cannot relate to. While I don't
share any of these views, and I don't think there is any reason to be
uncomfortable with disability or illness, I can see where these views come
from.
There are some who are just
plain uncomfortable with the idea of being so open about this Special Needs
life we are living.
So here's why keeping
everything to ourselves just doesn't make sense for Morgan's situation and our
family's well being.
When Morgan's team of
doctors, specialists and experts consist of 17 different people, the situation
ceases to be private. Every aspect of her is discussed, both the good and the
bad. We work with her. I share what's going on with them, they have suggestions
for me, and the cycle continues. It's a lot of work. But something amazing
happens when I open up about everything. I
usually get the help we need. I get the information Morgan needs. Magic
happens. If I'm not as talkative one day, or I'm not focusing my energy
completely on every facet of her care, her doctor or therapist doesn't get the
whole picture. So many times I end up learning about some new technique or
therapy available by sharing things I've noticed about her or something I've
read--this happens to be how Hippo-therapy came into the picture. I talk way
too much. And it has proven to benefit Morgan time and again.
I've spoken to a few med
students upon request. I'd like to think that our conversations will somehow make
a difference. That by answering their questions and allowing them to learn from
us, that they will be better for it. What if one of these students takes a
special interest in Genetics or Neurology. What if... Perhaps just wishful
thinking, but still... I'll keep talking and teaching.
When you share your
daughter's story with all State Legislatures to help lobby for the Baby Watch
Early Intervention Program, privacy is the least of your concerns. This program
directly affects Morgan and our family. We were only one of many families who
participated in lobbying. I'm happy to say that we saw good results from these
efforts. This was the first time I had to get involved in politics on behalf of
Morgan and I dare say it won't be the last. People with disabilities represent
about 19 percent of the U.S. population. If this group was a formally
recognized minority group, they would be the largest. Yet they have little to
no voice. It's up to family members and care givers like myself to change that.
And I fully intend to change what I can.
People get nervous about
Morgan. When dropping off and picking up Kyle from school, day in and day out,
there are those who may stare. But something amazing happens when I speak
openly about her. The stares and discomfort lessens. They see that I'm totally
comfortable with talking about her and that affects how they act around her.
When you are your daughters' liaison between her and the rest of the world, not
talking about her differences as well as her similarities, does her a
disservice. I'm not ashamed of her, nor will I ever be. Kyle is not ashamed of
her either and introduces his little sister to his friends with obvious
enthusiasm. She is different, and that's okay. Not everyone will be comfortable
with her, and that's okay too.
I've seen nothing but good
come from talking about Morgan. So I will keep talking about her and sharing
her story for as long as I have strength to do so.
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