I have never considered myself smart. I get by just fine. I'm not dumb. But when it comes to things like math, and correct grammar and the like I don't always know the answers, and definitely care even less. My husband is very intelligent. Did honors everything his whole life. He gets frustrated at the two things that I do well and he can't (play the piano and read very quickly). I like having a few wins.
I have realised, not just from what we are going through, but from talking with so many other parents out there that have children with special needs, that I know more big words than any other American out there. Okay that's an exaggeration, but I will explain.
Up until May of 2009 I knew enough about the basics of child rearing to be able to say things like, "I think she has an ear infection." I knew signs and symptoms for run of the mill childhood illnesses. I knew a little about cerebral palsy because of my nephew and a little about downs syndrome because for some reason I thought we would have a child with it.
However in the past seventeen months since I was first introduced to the huge word "neurofibromatosis" my vocabulary, as well as my understanding of genetics and anatomy, have increased exponentially.
Someone asked me what NF was one time. I explained that it was a chromosomal mutation on the 17th chromosome that could ....I looked up to a distorted face. Oh yeah, he probably just wants to know the basics, not everything I have ever learned. But the definition is hard and it took me months to understand the basics. But now I know the difference between cutaneous, subcutaneous, and plexiform neurofibromas. I know what a glioma is, a pheocromocytoma, sphenoid dysplasia, and tibial dysplasia. I know what a cafe au lait spot is and what lisch nodules are. I know about avisol, photodynamic therapy, gleevec, and tumor debulking, as well as who the best doctors are, and where the drug trials are taking place for each.
I also have learned a secret language full of letters. I know about things like p.t., o.t., and s.t. I know what an IFSP is as well as an IEP. And more specifically I know whether appointments we are going to are at the ROC. I know the difference between an EEG, EKG, MRI, CAT, PET, and x-ray. I even know things that are more common with NF like JMML and JXG.
I have learned enough that sometimes I doubt my choice to not be part of the medical field. All joking aside, I am at a place where not only do I learn everything I can about NF, it spills over into helping me understand other disorders. And I never thought I would be thankful for this sort of knowledge, but I am.
Sometimes it just feels like I'm part of a secret club of moms with superpowers that have to do with hiring and firing a large entourage of people to care for their children. But most of the time it makes me feel like my daughter will get the best care. I will know everything I can so that I can be proactive, and most of the other parents I know are the same way.
So to all of you other mothers and fathers out there taking care of your kiddos with special needs, what is your secret language? Does it ever make you feel alone when you have to explain all the letters, and words to friends, family, therapist, and sometimes uninformed doctors? Do you wear a cape under your clothes to hide the fact that you have to be a superhero for your child; you are the only one who can fill that job description? Tell me your thoughts!
Hiding my cape,
P.S. When I hit spellcheck every word that had to do with NF and every letter combination was highlighted. Not even the computer can decipher my superhuman code.