hit me with your best shot...

Here it comes once again. It is the day before Tylar goes in for her visits with the cardiologist, the geneticist, the eye doctor, and the orthopedist. She sees many of them throughout the year, but annually, she has the whole lot of them on ONE day. This is the "assessment" of the yearly progression of the marfan's. (By the way, February is national marfan's awareness month, so pass it on) I am a mess, and can now identify and admit this!! I hate knowing that puberty is rapidly approaching, and that she will start to deteriorate at a faster pace. I can't seem to get past the idea that she is not ever going to be normal. I hate even thinking that, and it makes me feel guilty. I know, I know, she has been given this challenge for a reason; she has been blessed with the tools to overcome...yadda, yadda...but...when it comes down to it, I just Hate it for her!! As a mother, you never like to think about pain of any kind being inflicted on your children; with Tylar, it is built in, it is a given that she is going to have extra pain. I hate that. With girls, and especially girls with my gene's, body image is such a struggle. I hate that she has to have extra issues added upon that!!! Although, being thin will never be a struggle for her...so I guess it's not ALL bad news. :o)
With that being said, I am so thankful for her in my life. I try to think about who she will touch throughout her lifetime. And, I truly know that she has a higher purpose here than I can even imagine. I sometimes, or most of the time feel overwhelmed with the responsibility of parenting her. I definitely do not feel qualified in the least. I will post the results of her exams tomorrow. We usually try to take the day and go shoe shopping for her. Since her size is impossible, and her exams are typically in the "city" the shoe selection is by far better than what we can find for her locally. Maybe we should add pedicures to the line up this year~