TWO HI kids now...what next?

May 11, 2006

Sorry I might end up posting a response to everyone! I don't have the memory to

just make one big post!

Kerry Dowling & Dan dawkdd@...> wrote:

QUOTE: I had adopted the line " it's just her hearing, nothing else, it

could be worse " , partly to fend off the " I'm so sorry/your poor family " comments

that people tended to make (which enraged me-- we need support, not pity!), and

partly to keep myself

positive about everything. Well, one day I made that comment to a work

colleague, someone I very casually knew. Unbeknownst to me, during my

maternity leave his 11 year old daughter had been diagnosed with

leukemia and her prognosis was poor. His response was, " You're right.

She could be dying like my daughter. "

Kerry - this is exactly why I feel guilty for expressing it at all but I

haven't yet learned how to process these emotions any other way. I usually tend

to only say that in person when it is brought up to me first. Otherwise I stick

to the whole " they're Ok " bit.

QUOTE: Also, a few people have mentioned genetic screening for Connexins and

other genetic causes of hearing loss.

They want to screen for a few specifics since Hannah's eye sight is not 20/20.

However that doesn't tell us much since we both have poor eyesight. But they

are pushing the issue of genetic testing this time around - when it was just

Hannah it was an " option " now its " I'll set up the appt for you! "

I

I wouldn't chose to not have a child because of a hearing loss. I think I've

been wording it wrong. I love my two kiddos and honestly the HL hasn't changed

much in who they are or what they have accomplished - I mean - Hannah is 5 and

she already has this boy who keeps trying to kiss her at school! I think I'm

more concerned about the implications of a genetic link. What kind of link? How

severe? At this point we don't know if the HL is their only issue. Suppose we

find a genetic link that eventually causes more issues? Yes, I could handle

more HOH children -but more severe issues? I just honestly don't know if I

would be strong enough - some people are but I doubt that would be me.

I think I'm just scared about the possibility of NOT having more if that makes

sense. This genetic testing scares the bejeezies out of me and its one reason

why I didnt get it when it was just hannah. We always talked about 5 to 7

children (realisticly - 5). The thought that this could be it because of what

the genetic testing might show is scary.

Then again - this might be all for naught because we know the genetic testing

may show me nothing!

But this is all in due time but at this point I can't talk to DH or my family

about my concerns for the " future " . They would think I was nuts.

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May 12, 2006

It is hard to put these feeling into words, and to know how very blessed I

have been to have the girls. I was already pregnant with Holly when was

diagnosed Profoundly hearing impaired. I was very afraid that Holly would be

born hoh also. Maybe it was the unknown, as we where just embarking on the

journey, and had no idea what it would mean to our daughter, or our lives. I

grew to hate very quickly comments like " it could be worse, or at least she

isn't _________. And through the year the one I have hated the most was " God

only gives us what we can handle " . I remember saying to someone one day, well

ok, can we have a talk with God now and let him know I've had enough.

I don't regret a moment of the experiences, the journey and the road we

have gotten to travel because of the girls. I have meet wonderful people, and

learned about something I probably would not have ever known about. I have

learned how strong I am, how to advocate to get everything they have needed

through the years. And have had such joy in watching them accomplish many

things others said they wouldn't, or couldn't.

But all of this aside I am not afraid to say I was scared, sad, and felt a

great loss when both of the girls where diagnosed. There have been moments

through the years when it did seem overwhelming. To make such big choices, to

stay on top of everything they needed, and still need. I had to allow myself to

feel grief, loss and the sadness. To not compare my feelings to other peoples

losses and pains, because they where mine, and they where, and are real.