is Kathy, and although I don't have hep, my 11 year old
daughter does. I thought maybe my (our) story might help
other family members who have loved ones also infected with
trip into the nightmare began just before Aub turned 10.
We got a letter from Hershey Medical Center telling us that
she was exposed to the virus during open heart surgery when
she was a week old. I picked up the mail on the way to work
and me being me, open it to see what the hospital wanted.
I read it going down the road, and when it finally hit me,
about halfway to work, all I did was cry my eyes out. When
I got there all I told my co-workers was that I had to use
the phone. When the doctor told me that the odd were that
she was infected it took about another hour to pull myself
together so I could work.
that time I had no idea what hepc was or that it even existed.
You have to understand Aub is a twin. Her brother died at
two days old on Mother's Day of 1990. I didn't want to loose
another child and at that point it was second only to the
fear of figuring out how to tell her what was happening.
I got as much facts from the doctor as I could, and when
I got home I sat Aub down and told her what was going on.
first reaction she had was anger, she wanted to "get " the
person who did this to her, then she calmed down a bit and
the two of us just sat there holding each other and cried
for a long while. Once the crying was over, we talked about
the fact that the person who donated the blood that was
used for her surgery was only trying to help her, not hurt
her. She's a smart enough kid to understand all of this,
and as I have learned, alot more.
the kind of kid every parent wants, kind, considerate,very
loving, and very open with me, we can talk about anything,
at least so far... We kind of held each other's hands through
all of this, and in a way, we still are. It hasn't been
easy, though I'm sure it could have been much worse. The
worse part we deal with is the fear of her friends' parents
finding out. She is afraid to let anyone know about it because
of the stigma of an infectious disease. The people we have
told have for the most part been very supportive, but there's
always that chance. Her school has gone out of their way
to help her in any way they can. Aub also has ADHD and because
of the hep, she can't take the meds to control it. The school
has given her a full time aide to help her with her studies
and to help her concentrate. It's been a huge help.
hardest part of all this for me is that I know how this
affects her, and I feel completely helpless to do anything
about it. I see daily the toll it takes on her, and there
are some days I'd just like to cry, but I won't give up.
I have to be strong for her. Our strength as a team is what
has got her this far, through a biopsy, countless doctors
visits at different hospitals and in just the day to day
things that come up for her. She's very open with me and
there are days we talk for hours about what is bothering
her, and try to find a solution to make it go easier. We
have talked about the future, and she won't give up, even
though she's in stage two. She has set a deadline of another
3 years, and by then she wants to go on whatever therapy
thay have out and beat this dragon. Oh yeah, did I mention
she has more courage than any kid I know? She doesn't complain
about her health, or much else for that matter.
claim to be super mom, or some super person. I just claim
to have a wonderful daughter who has taught me what it truly
means to live and to be loved. She is my hero.
this story will help other family members of people infected
with hep. I guess what I ( we) have learned is that hanging
in there and dealing with whatever pops up is the only way
to do it. One thing and one day at a time.
If anyone would like to contact either of us, our e mails
for me, and firstname.lastname@example.org
for Aub. We'll be glad to help in any way possible.
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