The unfortunate part of being a chronically sick teen

As I'm sure you have read in some of my posts, my daughter Taylor has a lot of pretty serious medical problems with her GI tract. We still, after almost 4 years haven't nailed down an exact diagnoses despite seeing the head pediatric GI doctor at Johns Hopkins Hospital and consulting with The Children's Hospital of Philadelphia. We do know what she has is an array of problems that resemble many other serious GI diagnoses that don't fit 100% in any one category.  Quite honestly it is extremely frustrating and scary knowing your child has a condition that doesn't fit any one criteria, therefore its tough to manage her.

Whats even harder is seeing the toll it takes on her trying to be a normal teenager. Relationships are hard for her because many teens don't understand what she goes through everyday and why she misses so much school and why her weight goes up and down so much. The latest rumor, that she claimed she didn't care about, is that she is anorexic or bulimic because she recently has lost over 10 pounds in less than two months. She has had an intestinal infection that has really reeked havoc on her body as the antibiotics have not been super helpful as of yet.

Last year her best friend turned her back on her because Taylor had to be cyber-schooled for several months and I guess she just didn't see any benefit in keeping her as a friend. The situation was unbelievable and without going into lots of detail lets just say Taylor has learned the hard way how cruel people can be including adults. And me, well I have never felt such animosity and hate towards any three people,( the friend and the parents). The mom instinct was in full swing!!!

Luckily her school is very understanding with her situation and works with her and us to keep her up to date on what shes missed if she is out.

We know that next year will be different because the real world is not as understanding when time is missed.

I continue to remind Taylor that she is not alone. There are so many kids who have it very rough and that she is blessed we live in this country where we can get good medical care. I also remind her that all that she goes through will make her a more empathic, understanding and compassionate person which the world needs more of.