Monday, November 9, 2009

The day before....

I feel pretty messy this morning. The messiness has ensued since last Tuesday and just seems to be growing by day. Saturday I was trying not to cry all day. We got an invite to a backyard bonfire and it was fantastic. Hanging out with everyone, talking, and laughing is great medicine on days full of fear. Sunday felt the same. This morning...I am no longer trying not to cry...just trying to make it through the day....trying hard not to let the possibilites of what lies ahead swallow me. It feels like it might though.

So many fears come with nf. I don't think I have ever listed all of the possibilites on here. They are permanatly stuck in my head. Here is the definintion and possibilities.

"Neurofibromatosis involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, defornity, deafness, blindness, brain tumors, cancer and death. While not all nF pateints suffer from the most severe symptoms, all live their lives with the uncertainty of knowing whether they too will be severly affected because NF is a highly variable and progressive disorder."

The list of things that could happen:

Brain Tumors, Deformities, Spinal cord tumors, headaches, deafness, pseudoarthrosis, scoliosis, cancer, pain, learning disabilities, seizures, paralysis, high blood pressure, blindness, short stature, macrocephaly, hydrocephalus, death...

It's scary. That is all there is to that. Nobody given this information for their own life could go through it without wondering what is going to happen to me? Which ones from that list are going to be what I am dealt? Most of the people I have talked to have doctors who seem so passive and dismissive of all of the issues. Doctors who say things like your pain can't be that bad, or your tumors may be noticable, but they aren't interfearing with functioning.

Abigail's case is still "mild" at the moment. I am thankful that we have bypassed some things already that are possibilities. However I feel tomorrow could pull the mild out from under us. It could take us to a new level. I mean your case can only be considered mild until you know otherwise...and tomorrow we will have an MRI of her brain. If they find something, anything, it means we aren't dealing with mild anymore.

Most parents think about their kids future. I wonder what she will be when she gets older. I wonder if she will go to college, and what her passions will be. I wonder who she will marry. Those things don't go through my head as much. As her list of mysterious symptoms grows and we get ready to find out what is going on I often wonder if she will grow up. Will this beautiful child who has taught me to love with reckless abandon ever get to have her papa walk her down the aisle...or will she be walking on streets of gold with her Heavenly Papa?

Children are a blessing from the Lord. Even when they are throwing fits, yelling, have poopy diapers, or throw food on the floor, they are still a blessing. Even when they talk back, sneak out, and make bad decisions, they are still a blessing. When they move out get married, and start a life of their own they are still a blessing. I hope that we get to enjoy our blessing for many years to come.

1 comment:

  1. Oh, honey. I remember those days so well. I remember the days full of trying not to cry because I wasn't sure if our boy would ever be well or if we would lose him. But mommas have to keep on taking care of little ones in the here and now, and so we press on.

    Take heart~ God will uphold all of you.The days of trying not to cry will grow fewer and farther between. God will teach you how to keep the stress from eating you alive. It's okay to lean on Him, even when you feel you don't have the strength to pray.

    I am asking God to heal Abigail in such a way that you will all begin to doubt that she ever had NF. Complete healing. So while you take care of the things that are pressing~ any health issues that need your attention in the here and now~ I want you to know that there are others who are trusting that there will soon be no health issues that need your attention. Just the temper tantrums and poopy diapers. :o)

    We love you all and are praying for you. You will not be far from my thoughts tomorrow.