Re: My family doesn't care

February 20, 2003

Dear Patty,

I don't post much, but I am reading and your note really struck me. My

daughter has been ill about 9 years now, and my son was before her. We

started out with CFS or dysautonomia and have recently learned it is

actually mito in our daughter. But in any event they both have had a rough

life and been very ill for years at a time. I went through periods feeling

my family did not understand because they never asked about the kids, or how

we were doing. It took about 6 years for me to realize that this was not the

case at all. They thought of us often, but they did not understand the

illness, and they did not what to say. So they said nothing. They asked

nothing. It wasn't lack of caring, but lack of understanding. They did not

understand the illness or how it affected our lives. One family member was a

doctor and it hurt terribly that she never asked. Then one day she told me

that our situation just broke her heart. She wanted so desperately to help

us, but didn't know how. She admired us for how we parented our kids and did

not let the illness consume us, and she prayed for us always. It touched me

so much to realize this. We had her support and her caring without ever

knowing. We started talking more about it in front of other family members

and learned that they too felt this way. So we stopped expecting others to

ask and instead just brought issues up in conversation. Issues about Life,

about what the doctors were saying, about new medical findings. And you know

what we learned? Everyone cared, and everyone listened. I can't say they

have a clue as to our life, but in thier own way they do care.

I hope this helps, and that you can find a way to educate your family. They

may just not know what you need...

God Bless,

Z

(12)

Date: Wed, 19 Feb 2003 02:59:26 -0000

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Subject: How do I get my family to care???

My family wont ask how our son is doing, he has Mito and I think they

think if we dont ask it might go away any comment's will help.

Thank you Patty

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