Letter To The Parents

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.