This was written long ago...but I've left it up in case anyone is interested...updates when I think of them :-)

      My thoughts are an amazing conglomeration of the last almost 3 years of knowing that Hannah has MAS. It's hard for me to sort things out, sometimes, not really knowing what to put here - what would help other moms. Please don't hesitate to email me if you have questions - I don't always have answers, and I'm certainly no doctor, but I'm always willing to talk.

     First off, it's a hideous nightmare when you first find out your child has a rare disease, much less an incurable rare disease. Rare translates to "most doctors haven't heard of it", and not all are willing to learn. Thank God that ours have been willing. I remember that when we found out, I wasn't really upset, so to speak. Upset, yes, but not wildly, because it was like being part of a book - the novel you read where it's so unreal that you can't believe it. I was just on autopilot for days. It was only 20 days from the day I found out that Hannah had something wrong, to the day she went in for major reconstructive surgery. In a hospital. Diseased. Something I never dreamed of since Hannah was rarely sick, and never really sick enough to even go to the doctor, much less a hospital. Mostly I just thought of her - trying to be strong for her. I'm a pretty emotional, fall-apart type, and I just couldn't do that, not when I knew she was going to need me to be positive. ME. Positive? I'm about the most negative person you will ever meet, God help me :-) I know it's wrong, especially for a Christian, but I'm always looking on the gloomy side. So I really had to buck up and get a grip on myself.

     I guess I don't think so much of myself any more after that first, initial shocker - I try just to think of Hannah. And that's hard for me too. Part of me wants to cry until there's no tomorrow because she is having to deal with this. Part of me wants to shout from the rooftops how proud I am of her for the strong person that she is - I write articles to Reader's Digest and other publications in my head, wondering if they'd publish them if I got the guts to send them in. There might be lots of kids with cafe-au-lait running around, parents not knowing that anything could be indicated by them. On one hand I don't want to be negative about MAS to Hannah - I want to reassure her that it's a sort of timebomb disease - she might be affected in bad ways, but then again, she might never have another problem. On the other hand, I don't want to run around in fairy fields, always thinking that it's going to be ok, and not prepare her for what she might face. It's a total dilemma for me. Now that she is older, she realizes a lot more what MAS is, and what it can do. She's been through a hard time or two of the "Why me?" thing. I teach her that we always must look for the higher purpose - that nothing in our lives is done without God knowing it all. I guess that sounds crazy if you don't believe in God - but I can say without reservation that I believe in Jesus, and the higher purpose with all my heart. So does Hannah. There would be NO comfort in this situation if it weren't for God. I don't know how people make it without Him.

     All in all, it's been a roller coaster! I believe Hannah is much more mature than most 15 year olds because she has had to be much more aware of human frailty than most kids. It's hard for her at times because she feels like, in her words, "a freak". Knowing she's different, sitting on the sidelines during youth volleyball games, being sick/dizzy and not getting to go places they've planned. You just never know from one day to the next - roller coaster. She's doing well, at present, lots of issues to deal with and so forth, but she's dealing with it. We're dealing with it. I will say it's probably drawn us a lot closer than most moms and daughters. We can finish each others thoughts with barely a few words to let the other know what we're thinking! She always says I'm her best friend, and that's one of my best blessings in life.

UPDATE: It's actually been almost 5 years now since we found out about MAS. Hannah has graduated a year early, which I consider a great thing since she missed a year of school, and has worked a job as a clerk in our City Hall for the last year. She had to get her GED because we homeschooled under no particular curriculum, and she did wonderfully. She's kind of up in the air now about what she wants - she is going to take photography courses for now, and pursue a career in photography. If that doesn't suit her, she'll go to college next fall, when she would have normally graduated high school and gone. Hannah has had another surgery last year, Sept. 30, 2004. She had thoracic outlet syndrome, and there was some weirdness to suggest that perhaps MAS had something to do with it, but nothing definite.

UPDATE: It's almost 8 years now. Hannah is a beautiful 20 year old. She did go to college for a semester of paralegal studies and then she went into the oil and gas industry as a Petroleum Landman. She continues to have pain and migraines, as well as other issues, but she deals with it all with strength because she is a strong person. She hasn't had another surgery, thank God. Of course, she is an adult now, so she deals with this all on her own, and I help if she needs me. It's been hard to let go - I guess I was bordering on being a smother mother because it all worries me so much. I thank God for Hannah. She's a light and a wonder in my life and I love her more than I can say.

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