my daughter also had what was thought to be a hemangioma on her tongue. What we have found out is that Kayla has a venous malformation on her tongue. We are currently seeking treatment for her.
You are not alone there are others out there with this very problem. I have emailed and spoken with at least 5 other persons. The first thing that you need to do is find a vascular birthmark center with experience in treating this problem. There may be complications that you are not aware of....we contacted specialists listed on the nova website.
there is also a message board there. I have found this website very helpful.
Please don't let what others say about you affect you. I can tell by your post that you are very special person. No body is "normal", this thing on your tongue is the thing that makes you different from everyone else.
Please let me know if you need anything.