Letter to
the parents:
This posting
is for all of you out there who are parents of girls with Turner’s or are soon
to be parents of a little girl with Turner’s. This road you are on is going to
be very long and have a lot of bumps in it.
If you are a
parent that has found out that your unborn daughter has Turner’s, my thoughts
are with you. From what I’ve gathered from the other butterflies and butterfly
parents I have been in contact with this is the most difficult road. The doctor’s
will say a lot of really scary things to you. They will tell you that the
chances of this baby even coming to term will be slim. They may even suggest
you contemplate termination of the pregnancy.
They will most likely tell you that if the odds are defied and the baby
survives that she will have a very hard time fitting in and possibly have a
difficult time with school. While these things may be true for some of us butterflies,
it is not true for all of us. You must have faith that your little butterfly
can defy all odds, because that’s what we typically do.
Now, I am a
butterfly..not a parent to one so I can only tell you what I have observed and
what I believe my own parents went through with me. Some of you parents may be
very extraverted or outward about your concerns for your daughter, and some of
you might be introverted or inward about your concerns for your daughter. Both
ways are perfectly good, because either way your daughter will know you care. I
recently realized that I had one of each type growing up. My mom was very
extraverted about her concerns. She was very vocal about her worry and concern.
My dad on the other hand was very introverted about his concerns and worry.
What I recently realized was that he did that for a very good reason. When I
was a kid, it may have felt like he wasn’t very involved. Now that I’m an adult
and have a different perspective I realize that the way he was involved was
very behind the scenes. In his own way he did certain things behind the scenes
so that while the Turner’s may have affected my life, he was going to provide
everything else so that nothing else besides the Turner’s would affect my life
so much. Either way you are with your daughter is a good way.
There are
other parts of being a parent to a butterfly I want you folks to know. You are
going to be somewhat bombarded by doctors. Your daughter is going to need a
regular pediatrician, a cardiologist, and an endocrinologist. She may also need
more doctors than that at some point. These doctor’s may not always agree on
certain treatments either. As the parent, it is your job to listen to all of
them and decide what route is best for your daughter and fight for that
decision. Most of the bumps in the road as a parent to a butterfly will have to
deal with medical decisions. Never fun, but necessary.
I hope this
has been helpful and has helped you prepare. May all your butterflies always
soar and defy the odds.
