I have met a lot of parents lately, who have recently received the diagnoses of Neurofibromatosis for their child.
It's amazing, when you reach out to someone who has a need, how the word gets around, and you have a full group of people, who are desperate to understand their new diagnoses.
I know how confused I felt when my own children were diagnosed. I wanted to know WHY, even though, for me, my "why" was really already known. I was desperate and frantic for answers...only to come up short, and left feeling more alone than ever.
It's one thing to have the disorder myself...I could be strong and courageous, but now this is passed to my children, how will THEY cope?
The first step in "coping" with any kind of diagnoses, is to first understand it. By understanding the illness, you bring the control back to you. The control, can be used as power, as you educated yourself and those around you.
Living with any chronic illness takes courage. But when you learn to face your fears, you will one day move past them, so you can live a happy and full filling life.
Neurofibromatosis, is not the end. I have found that life is what you make of it, and is full of choices. If you choose the "doom and gloom" path, that's YOUR choice, and you will have to deal with what comes from that.....But for me, I choose to show my children what true strength is, and help them THRIVE with NF. By being taught and shown this.....that's how THEY will cope.
Children learn from everything we as parents do and say. And showing them, that I will NOT, just turn over and let this disease consume me, teaches them the courage, they will need to get through anything.