This person IS suffering from NF. They have what is known as a plexiform, neurofibroma.
This to me is not a freak of nature....Its a person who needs medical help.
HAVE A GREAT WEEKEND EVERYONE!
We must simply let go, stop struggling and have faith that God will pull us out of the pit. That's the hardest thing for me to do. Giving up my control, and putting my faith in something is near impossible. So I sit in a tug-of-war, with someone, I could never win against.
Today, I got the results on Braden's MRI. His Dr., is definitely not educated in NF, and struggled through reading the complicated and confusing notes that the technician left. I was left feeling very confused myself.
Braden has "several" tumors that are at the base of his brain. When I asked the Dr. what "several" meant.....he responded that he didn't know, and it wasn't charted. "There are many, Ms Hopkins".
He prescribed medicine, for the frequent headaches, that Braden suffers....and he informed me, that Braden would likely have to take this for the rest of his life.
I was told to really pay attention to his vision...and to be sure Braden gets regular eye checks. Which he would, regardless of this damn NF.
Physical and motor skills were also another thing to watch for...."If he starts to get really clumsy, or falls down.....we need to have him in for another MRI"........otherwise, MRI's will be done yearly.
No optic nerve tumors *yay*
I got off the phone, gut wrenched......My head, hot and heavy. Flooding my body, were emotions that are all too familar. Guilt, fear, anger.....I wanted to scream, and run from this news. Now I have 2 children, who definitely have NF.....2 children who have brain tumors.
I find peace when I hang my head and say a prayer. I thank God for all 6 of my children.....and especially for my children who are dealing with such unknown. I pray for strength. I pray for God's healing hand to come over my family. Then, I feel it. I feel the Lords loving embrace...and all of the feelings that were weighing my heart down with such agony, fade.....I smile, and know that whatever may happen....I know the Lord is part of it. I find strength in Him.
So, hold your children close...tell them how much they mean to you. And show them. Play with them. Get dirty, messy.....and laugh!