Tuesday, July 21, 2009

neurofibromatosis

I haven't written a whole lot of specifics on this multiple syllabic disorder. I think it's mostly because I don't want to think too much about the specifics. Some days I research and read more, but most days I just try to accept what we know for now and move forward in hope. The Bible tells us not to worry about tomorrow and that fear is not from God. So I pretend I'm not worried or afraid so that I appear to be handling everything in a "godly" fashion. Honestly overall I have a pretty good balance most days between the reality of what could be and believing the best. This is always the challenge in unknown situations. I don't want to walk around all woe is me, but also don't want to be devastated.
So for right now what we do know is that Abigail has LOTS of cafe au lait spots. Spots that are the color of coffee and milk. The french name makes them sound fancier than they really are. We have taken to calling them chocolate chips because we don't like coffee...and because they are what lets us know that she most likely has NF we don't want them to be called something we don't like. I digress. So I notice new ones all the time, but we need a second symptom for the diagnoses to be "official." It seems sort of sick waiting for you daughter to get freckling in different areas, or lisch nodules, or a tumor so that you aren't hanging in limbo even though no doctor has ever seen someone with more than 6 cal spots not have it. However yesterday I noticed what I think may be the freckling. So when we go to the doctor in November I think we will get the diagnoses which will help us get an insurance designed for children with special needs. This part of it is good. However even though I knew that we would eventually start seeing other things, the hope side of me held out that we wouldn't. So now I'm trying to find the middle again.
In all of this it made me think about beauty. I have tried very hard in my adult life to not talk about parts of me I don't like. I have been even more aware since Abigail was born. I want my daughter to grow up knowing she is beautiful and not hearing women talk about all the things they hate about themselves...because this gives her permission to find things she doesn't like about herself. However since the mention of NF I have worried so much more about her self esteem. She already has spots all over her that will grow in size and be very noticeable. She could also end up with little bumps (which are the tumors) or big bumps all over her. I have actually started to cringe when we are out and people comment on how beautiful she is. She is beautiful, but one day people may stare and say things for another reason. It won't change the fact that she is beautiful, but it breaks my heart to think about it. I'm crying as I write this just thinking about people no longer saying kind things to her. I am aware that beauty is not what truly matters and that is not what I believe matters. I do believe Abigail finding herself beautiful is important though. When nobody ever tells you you are it becomes hard to see it in yourself. For every time she possibly gets made fun of someone else will have to tell her ten times how beautiful she is.
The other thing this has made me do is accept a part of myself I have always hated. I have moles...lots of them. No actress or woman in a magazine has them. I have hated them for as long as I could remember. There comes a point with every child I've ever been around where they notice them and try to pull at them or get them. This day has just come with Abigail. However as she has tried to get them I have realized that in not seeing the beauty in my "spots" I will be teaching my daughter the same thing. And in all honesty I love Abigail's spots. I think they make her more beautiful because she is unique. Her skin is different than most other peoples and has little artistic spots all over it. So for the first time in my life I have embraced my moles as a beautiful part of me. They are fun little extras that God sprinkled all over me...and I wouldn't change it. Hopefully these lessons beckon our family to see outward and inward beauty in each person.

Thankful that we are all fearfully and wonderfully made in the image of God,
videoI thought I would share the miracle of Abigial crawling...if you don't know what I'm talking about you will have to read my earlier post!!

5 comments:

  1. I know what you mean about the limbo- before Julia was diagnosed I thought I would be medicated! It was an awful time, although this after part isn't much better to tell you the truth. Love Laura

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  2. I 'found' your blog! I will dive in & read up soon.
    Maria Kristiansen

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  3. Hello. Just wanted to say that I enjoyed reading your blog because my son has been newly diagnosed with NF. He had the "spots" and now has the lisch nodules & I too pray that he will grow up with a strong self esteem to handle whatever problems come his way. I too have lots of moles that I have always hated, so I really do know how you feel. thanks for sharing.

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  4. My 3yr old son has NF too, so do I . Several family members have it and we all lead healthy productive lives though some of us have had surgery for our NF problems - it is such a variable genetic disease.
    I do worry about the future but I know that God is with me too every step of the way.
    I wish you all the very best.

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