The Tangled Web of Living with NF

When I finally lay my head down at night, in complete exhaustion from the day, my mind drifts off in many directions. I often worry about tomorrow, and stress about yesterday.

I couldn't care less about the tumors multiplying on my own body, but the ones attacking my oldest child spin me into a web of guilt and sadness.

My children, all six of them bless my life, and I do not regret choosing to be a mother. What I hate is that Neurofibromatosis has its hand in my life at all....in their lives.

The Dr. is calling the tumors Acoustic Neuromas, or Meningiomas--he's not sure which they are. But they are there. Last month we knew about the one, this week, we learn there is another, slowly growing on the left side.

Bi--lateral tumors? With NF1? This web is pulling me in deeper and deeper. It's true that NO ONE can predict how NF will affect their life, and that Bailey will undoubtedly come through this, just as strong, if not stronger than when she went into it, but I'm scared.

It's easy to wear a 'THRIVING' spirit on your sleeve, but when you dig deep inside a person...That's when you truly see what they are made of. Am I strong enough to not only hold Bailey up while she undergoes major brain surgery, but also hold up myself and the other kids?

Am I just a woman who is full of talk, but very weak on the inside? This "test" is bringing me to the point where I am questioning myself...because all I want to do is break down and cry. Cry for my baby who has to deal with scalpels and saws and long recoveries and permanent hearing loss.

Are there worse things? Sure there are. But all I want to do is pull my little girl in and hide her from the cruelty of NF. But then I would be falling into what my mother did with me....Hiding in her own guilt and anger, caused me to hide from my own issues for 33 yrs.

Memories of my childhood, stop me from repeating the cycle, but I definitely understand why my mother would want to hide from NF. But like ALL trouble that you try to avoid, it will always find a way to your doorstep.

Guess it's time I opened the door and face this head on. (pun intended)