our kids

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For what it's worth, I find the moms tend to be at a different place

than the dads, in general, but not always, in terms of gathering

information, getting services, etc., as they are the primary

caretakers, deal with the school openly, deal with docs openly, etc,

.... and I find generally they are more open about giving and receiving

information at various levels so it becomes a normal exchange for them

more quickly than the fathers ....

Not always though, I just find that more often than not on these

lists....

In terms of what's going on with Abigail - well, she already knows it,

I think she appreciates the info in that sense... and if you have

other kids, they'd like to know what is going on to....

Family members just want what is best for the kids, and the parents

certainly never agree on that anyway, even without a complicating

illness. Generally I find it's better for me to share gobs of info

with other folks like me, who enjoy that exchange.... my hubbie is just

not at that same place. And that's ok... we do talk plenty about our

situation, I just have other additional outlets.

I do talk openly though, in front of the kids, about a great many

things whenever I want to, as that is my general communication style,

and if my husband doesn't like it, he is free to leave the room I tell

him, as long as he takes the kids with him :-). He never does

though.... and I try to tone it down a little so his " toes stop curling

up " ....

We all marry folks who are different than us... and under great stress

it can become, oh let's say " very stressful " .... a couple things

helped us with this... we agreed when was younger to not discuss

her illness after 7 PM... we do not want to go to sleep with that being

the last thing on our mind every single night (although secretly it

is... ).... that gave me a time I could talk " to " about things, and it

gave my husband a time he knew the discussion would end. So it worked

for us.... we don't do it today, but during the younger years, we

definitely had to agree on some limits.

The other thing that helped was to go out as a couple, at least once a

week, and not discuss the kids at all. As much as possible. It just

helped us remember why we got married... you know, before kids :-). It

was not easy at first, but was very helpful, and even got to be fun :-)

once we could relax some about our daughter's illness.

On Mar 25, 2004, at 10:24 PM, Mito wrote:

>> 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.