There is no doubt that uncertainty breeds fear. Anyone dealing with a Neurofibromatosis diagnoses knows this to be true. But sometimes the uncertainty of the unknown isn't as scary as knowing something and not being able to do anything about it.
The news that my 13 yr old son now has many issues related to NF, when just a year ago things were stable, has thrown me into a place that I never thought I would be. The “rules” of NF don't apply to my family, since we have broken any predictable rule that NF had.
Acoustic Neuromas which typically affect people with NF2, now plague my NF1 daughter, Plexiforms that appeared virtually out of no where cover my 13 yr old sons spine, Optic Gliomas that were not there a year before, now being prominent....Our family alone, proves that you cannot predict anything in life...especially Neurofibromatosis.
Why? I often ask the air around me. Why this cruel relentless disorder? What is the point of all of this? And WHY won't God just wave His hands and take it away?
The only thing I have power over, in regards to my kids health, and my own health, is how I choose to handle what is being placed before us. If I run and hide and act scared....how do I expect those around me to act? At the same time, if I act all brave, pretending things don't bother me how is that giving a true picture of what is happening?
It's a battle that I am sure most of us face. The only answer I have for ME...Is to stop ACTING and start living up everything I say I am.
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