Tuesday, May 15, 2012

You Seem Fine...So What's the Big Deal?

I get comments all the time, telling me that our medical issues don't seem like that big of a deal. That because Bailey isn't deathly ill, laying in some hospital bed, that we must not be that bad off.

I'll tell you the reason we all seem fine, but first let me stress that medically speaking...We are NOT fine. As of 3 months ago, we are "stable"....But we are far from being CURED or FREE from danger.

 Bailey has gone through 16 months of chemotherapy....With NO SUCCESS! (unless you look at chemotherapy as something that prevented Bailey's tumors from growing out of control)

One of Bailey's brain tumors lays extremely close to vital nerves that control hearing, balance and facial muscles. The other, lays so far inside her brain, that Drs have even refused to biopsy it, for fear of brain damage or death.

 The thing about Neurofibromatosis is that, a person can appear to be a generally healthy person....But inside the body, the tumors are wreaking havoc. Growing and twisting around vital nerves and organs, cutting off blood supply and much needed oxygen. And because Neurofibromatosis is an unpredictable progressive disorder...We are never "out of the woods".

 Now for the reason we seem to be doing so well(medically)-- Despite the FEAR. The FRUSTRATION. The ANXIETY. The WAITING. The "THERE'S NOTHING MORE WE CAN DO". The ROLLER COASTER. The HEARTBREAK. The HOPELESSNESS. We are a family who THRIVES. We have decided, together, to NEVER focus on all the bad stuff.

 We have chosen to set an example and have decided to let HOPE, steer us. So when I enter a room and you ask me "How are things going?" And I reply, "Things are good!" Believe it. But also know that behind that "Good"...is a mountain, that we are holding up...And it's only because of our FAITH in God, that the mountain doesn't crumble around us.


  1. I totally hear you...My daughters tumours are all "inside". One plexi is wrapped around inside, affecting her breathing....But everyone thinks just because she runs and plays and looks "normalL...she is ok.
    I feel you and I pray baileys tumours dont cause her further issues.


  2. Believe me! The mountain will always be there. I feel you and Bailey's too. Keep the faith! People out there don't know how it feels and the rite feelings. Only we know it. The answer that I gave to them was also "I am good", but "inside", there is a lot of feelings like you said. Smile at these people and that is the strength that we have. That is why they say ok/fine and what's the big deal... These people are actually feel insecure to themselve and that is why they like to say it.

  3. Dead on, you never know with NF. When you finally think you got some time off, something new comes along, a new obstacle to over come. I've always been active, out there in the world, doing doing doing as much as I can. I'm doing so much that my friends and family members seem to forget all the limitations and obstacles in my way. I make it look like its all good. I wish I wasn't so misleading (-: