Families Not Seeing Eye to Eye All Thoughts Welcome

March 25, 2004

Hi Everyone...

I am looking for some family advice from all of you.

Over the last several months I have been studying Mito through every

means possible. I read research papers, do internet searcher, write

letter and make phone calls on a regular basis. I am driven to

educate myself, and others. Though I put a lot of time and energy

into my pursuit I don't allow it to interfere with other things.

That said...last night my husband made comments that struck me and

gave me pause.

I began a page for Abigail to keep family and friends up to date on

Abigail as well as our family. I include the good, the bad, and our

hopes for the future. It has become my voice of joys and fears. Marc

expressed with me a concern over the fact that I not only note the

daily changes in Abigail, but that I announce them on the page. He

shows great concern over offering Abigail the opportunity of

normality. I agree with him completely in the arena of offering her

a normal life. However I also feel this great need to educated and

inform those who loves us concerning the true face of the disease in

question. My approach to confronting and acknowledging the daily ups

and downs in his view threaten his objective of normality.

In addition I have been mildly chastised about discussing the

disease in front of Abigail. Marc again doesn't want Abigail to feel

that there are things that she can't so. In truth our conversations

usually lean toward something I have read in relation to someone

else. For instance I was talking to him about the article in Women's

Day. I was most impressed with the way that family moves around

obstacles. I expressed how there was much to learn from people who

have found ways to excel. Marc quieted me, and told me that he

didn't want to talk about what Abby can't or might not beablr to do.

I was saddened because that was not the point of my expressions to

him.

I am quite sure that we are not the only people who have experienced

a time such a this. I would like to hear of other people's

experiences...how did you move beyond a difference without

sacrificing you individual needs?

Thank you for reading.

Myst

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