Thursday, May 6, 2010

May 6

Abigail one year ago...snoozing on her mama.

There is this perfect spot on my left shoulder. Abigail's head fits in it just right. She turns her head away from my face, puts that right thumbie in her mouth, raps her left arm around my neck, and her legs around my middle. When she is there; everything feels peaceful. It's the spot she goes to after she falls down and needs comforted. It's where she rest when she's sleepy, or when I ask her to snuggle me. It is the place that temporarily erases the pain of life; whether it be a skinned knee or an aching soul.
I need this place today. I don't know if it's like this for everyone, but today is a weird day for me. Yesterday I turned 28. It was a good birthday filled with a husband and daughter who love me as well as our great friends Eric and Brenda. I felt special and very loved. I wasn't lavished with gifts or attention. I was just reminded through cards and words that I am loved. The whole day though I could feel it. I knew it would end and that today would come.
A year ago today we sat in Dr. Weaver's office at Riley outpatient center. We had asked for the appointment to clear Abigail of an lingering issues from a rough start. We had wanted the appointment to be certain that we didn't have more lying ahead. We expected to hear "she's healthy" or possibly "here are some things to keep an eye out for." That was not what we heard.
Abigail had these birthmarks. She had two fairly large ones at birth, and it seemed like she just kept getting more. Jason and I had discussed it, but figured we just hadn't noticed them before, or possibly it was something more common in dark skin since we are both fair. It was never worrisome to us. But when the doctor took out his pen and started counting them I wondered if we had missed something. He counted 28. They were called cafe au lait spots and were indicative of a genetic disorder called fibro something. I couldn't get it to stay in my brain.
He was the resident. He left for a few minutes and the doctor came back in with him. He too counted the spots and looked her over. They asked if they could bring in some medical students. They also looked over Abigail and talked about these spots. After everyone was done examining her the resident stayed with us and shared some more about this big long word everyone kept saying.
He said that most people who have it only have mild cases. Then he went on and on about learning disabilities, and a list of other things. I kept trying to listen, but could not concentrate or retain anything he was saying. The only word that I kept hearing was tumors. It causes tumors. He wrote down the label that had been given to what our daughter most likely had as well as a couple of websites that were good and informative. He warned us that if we looked it up online we would find worst case scenario and see horrible pictures.
We decided to go out to eat on the way home. We needed something fun, happy, and normal to round out the sucker punch we had just been given. I don't remember where we ate. I really don't remember much of the drive home. We kept trying to talk about it, and trying to remember the word he had said.
It's odd how we all react so differently. Most people who's children have this either struggle with guilt because they passed the gene on, or guilt because they wonder what they did to cause this genetic mutation (which in reality they did absolutely nothing). I couldn't think either of those things because Abigail did not grow in my womb. She had no genetic material from Jason or I. Instead I focused on how could I have missed all of those spots? If I had noticed them earlier would we have known earlier. I came home and looked in my "What to expect the First Year" book. I remembered reading about birthmarks in it. I found the page and read that if your child has more than 5 cafe au lait spots you should mention it to your doctor. Nothing about why. No pictures of what a cafe au lait spot looks like. Not even a description that a cafe au lait spot is the color of coffee and milk. Just that you should mention it.
I for the most part have gotten over the fact that we missed her spots being an issue. Nothing would actually have changed from knowing earlier. We would still be exactly where we are at this moment.
Interestingly May is national NF awareness month. It will always be the month where NF is in my head more than usual. It is the month we first heard about NF. Abigail will have her second MRI this month. Hopefully we will be doing annual fundraisers in May.
Even as Abigail gets older I will have a spot for her on my left shoulder. A spot where she can snuggle in and forget about skinned knees, children who tease, and the pain of the world. A spot where I can forget about NF, the worry of what lies ahead, and the fear of losing my little bug. A spot that makes May 6th feel like just another day.

Snuggling up with my little bug,

1 comment:

  1. gosh, i feel like you're writing some of our experiences. the sinking feeling, the inability to absorb a thing, the need for a treat after a hard dr's visit.

    that spot you're looking for, is found in God, i know you know that. sometimes, though, it's nice to have it here on earth. i hope today you find it.

    be looking for the UPS man to bring something for you guys in the next week. i hope it shows up before the tea party.