Saturday, May 30, 2009

Out of the Shadows


I wasn't sure what to expect when I got the letter about a gathering of NF families.   Part of me was afraid to meet others with this disease.  I don't really know what I was afraid of, but as the date approach, I began to feel like perhaps I shouldn't go.

My family cleared the calendar and I decided that me and Rachel would attend the meeting.  I was one of the first to arrive, and Rachel and I ducked behind the corner, so that she could finish her breakfast.

We were soon met by a wonderful woman, Cheri Stewart who  invited us into the room, and offered a bunch of "freebies".   I was excited to see so much information!  Rachel and I grabbed up some stuff and went to sit down.

I immediately noticed one gentleman who was affected by NF...I wasn't sure how to introduce myself..."Hi, I'm Kristi, I have NF too, nice to meet you..."?  That sound a bit weird to me, so instead, I smiled and half waved.  That seems weird too now that I look back on it.

A few other families trickled in, while Dr. Judith Martin began speaking.  Rachel met her a couple months ago at her clinic and Dr. Martin 'officially' gave the NF diagnoses.  Dr. Martin was pleasant and very likable.  I was quite impressed and I will forget ALL about her using the word "ass-hole" to describe the way some doctors can be.  ( my daughter who is SIX, looked over at me and said "Mommy she said a naughty word")   I will also try to forget that she compared having NF to living with freckles, or a bump on the nose.   I supposed it is truly difficult for someone without NF to know what it is like.  Unless you walk a mile in my shoes, you won't get it.   I'd like Dr. Martin to live life as  Reggi Bibbs for a day, then see what she has to say.

I had asked a few questions .... which I did not get very clear answers, but, she did try.   I asked about the type of mass Rachel has, Gleevac, and Vitamin D ....She doesn't seem to feel NFers require yearly MRI's....which I totally disagree with.  If WE didn't have a yearly MRI....we wouldn't have found out Rachel had something going on in her brain.....To her, I guess unless something is hurting....there is no need for medical intervention....Hmm, what about PREvention?  What about things like mamagrams?  A woman with breast cancer, doesn't usually know they have it, unless they get checked out.

After the key note...we had a meet and greet.  I went over to a very nice couple and introduced myself.  They have a little girl, who Rachel just loved!  We talked about our stories of NF, and seemed to have the same beliefs as far as bringing children into the world.  

We shared some pizza for lunch and visited the rest of the time.   I met a few very nice people, and got their email addresses.  I know how it is, to be living with a disease, no one knows about, or understands....So any way we can stay in contact, I am all for!

I am glad we went to the symposium....I am glad to know that I am not alone.  It's a very big world, and NF makes it feel even bigger.    Maybe, one by one....we can make it a little smaller and make a difference.

1 comment:

  1. Hi, my name is Debbie and I have a 13 yr.old daughter with NF1. We found out when she went in for her 9 mo. well baby checkup. It was very hard to hear this long word come out of the doctor's mouth, "has anyone ever told you that your daughter might have neurofibromatosis" is about how I remember it going. This was our first visit at this dr.s office since we had just moved across the country from Ca to De! When she was born she had a small bump on the bridge of her nose. They did a ct scan without putting her under anesthesia, so it came out 'fuzzy', they thought she had a brain tumor though. For two weeks we thought our newborn baby had a brain tumor, horrible! Went to a diff. doc, they did a mri, came out clear! But they decided that the bump should be removed. That happened at 5 mos. Moved at 9 mos., had the NF bomb dropped on us. Sent to the eye doctor to check for lisch nodgules, and found out that she needed glasses, was extremely farsighted! What else?? Well, after a while I calmed down and decided that no matter what might happen we were blessed to have her as our daughter for whatever length of time God might give her to us. Now 12+ years later, we are still doing pretty good, not too many neg. effects from the NF. My daughter is the first in our family as far as we know to have NF. My first child has some cafe-au-lait spots, but not the same/right kind. He has a form of autism though along with add/adhd. For a long time we thought that we should not have any more kids, what with the chances of having more kids with disabilities seemed irresponsible. But 5 years ago we had our 3rd, then we had another 2 yrs later. Both extremely fine, no problems! God is good! Not just for healthy children, but for all children. Each one is a blessing and He uses each one in our lives in a different way to bless us and sanctify us. Hannah (the one with NF) had a MRI done a couple of years ago, but not with contrast. It came out clear, but I still wonder to this day if things were done correctly. Hannah has a stuttering problem, and a general information processing problem, that I wonder if it is somehow linked with something NF related in her brain?? Well, I am glad I stumbles across your blog. Hannah wanted to know more about NF, and I started looking things up on the net. After she was first diagnosed I was upset like I said for a while, then it just sort of slipped to the back of our minds. Now that she is a teenager it has come back to the forefront so to speak. There is so much more information now than back then, with the internet it is amazing what you can find out. If you would like to contact me, feel free to email me at