Living LaVita Rare

When I started the adoption journey of my oldest I was seriously told to “just love him and everything will be fine”. Such remarkable advice deserves applause. Not.

So not including trauma which is always a pita to deal with in and of itself, he was “blessed” with a genetic condition that several years ago was considered rare. It still is, but more and more people are getting diagnosed as genetics continues to evolve. Then when he started passing out randomly as a child and into his teens led us to some new diagnoses. Oh, and add in anaphylaxis and the party never stops.

My son though is a trooper. He has really worked hard so he can do the things that most teens do on a regular basis. Like drive. It doesn’t make things stink less for him, but honestly he definitely handles things with more grace than I do.

Then there’s me. I am probably one of the whiniest and pesty people around. I do NOT handle chronic illness well and the fact that most of my medical team reminds me of placid cows chewing cud in a field and mooing happily versus actually trying to be the bull who charges about and gets someplace, you have an idea of how things can get rather frustrating after a time.

I hadn’t planned on picking up an autoimmune disorder, a neurological problem, and being immune compromised. Guess I am just blessed all the way around.

However, like my son I’m pretty stubborn and determined. I’ve had to learn to navigate life in a new way and honestly, I’m a kick-ass advocate for myself. Somebody has to heard the