On the 5th Day of Rare Christmas Phoebe wants you to know....living rare can feel like a constant battle between wanting to be like the other children and knowing your body won't allow it. Phoebe especially struggles with this. Unless Phoebe is in the midst of a flare up, it can be difficult to tell that she is plagued by health difficulties. One thing we hear often from others is "she doesn't look sick". And while this may be true a portion of the time, it does not mean that there is not serious complications affecting her, even when she is not experiencing a flare up or health crisis. In Phoebe's eyes, she "doesn't look sick" either. She looks like all the other kids. And what Phoebe wants more than anything is to be able to run around, play, and do all the things the other children get to do. But she knows she can't. For the most part. Sometimes, things are so exciting that Phoebe wants to try. And we encourage her to try. This way she can really learn her own body and limitations, and be able to recognize how far to push herself and when not to. She has been getting better at knowing what her body will and will not allow her to do, as well as telling us when she is having difficulty breathing or her legs are getting tired or hurting. But unfortunately, Phoebe sometimes still pushes herself too far. When this happens her symptoms become exacerbated. And while she has begun to recognize when she has pushed herself too far, the desire to want to participate in everything with other children is still so great inside her. What has happened as we have navigated these six (going into seven) years of Phoebe being rare and undiagnosed is that we have gotten really good at ready her body's cues and signals so we can intervene before things get out of hand. And while this works really well when she is with one of us, there are times Phoebe is at school, on the bus, with friends and other family members that may not know all the things to look for. It is during these times that we have to stress that even though she "doesn't look sick", and she wants to push herself to try, there is a limit to what she can do. Including things that she simply cannot do. Phoebe, knowing her body better and better, understands more and more why there are some things she cannot do at school or when she's out. But it doesn't take away the desire to be able to be like everyone else.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.