dealing with blaming oneself

[Guest guest]

Ann Marie wrote ---

OK, so I am wondering WHY this hearing loss is happening to and

our family. I read that mom having the flu early in pregnancy can

cause hearing loss, as can unexplained bleeding in the first

trimester...both of which I had.

How have you coped with guilt and blame? Or does it become a

non-issue because it is futile to try and pinpoint a cause for

something which cannot be changed??

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Hi Ann Marie (and all!) welcome to the list!

I'm the mom of two boys - Tommy is 8 with a severe hearing loss; Sam is 6 with a

profound hearing loss. Both are aided, communicate orally, are mainstreamed in

public school and wear hearing aids.

Tommy was diagnosed with his hearing loss when he was about 3-1/4 years old, he

got his hearing aids at 3-1/2. At that point, our audiologist insisted upon

testing Sammy, who was then 15 months old, because " we test siblings " . I

remember the morning of the ABR feeling so tired and annoyed that we had to do

this for Sam because I felt sure nothing was wrong, then getting the news that

he, too, had hearing loss. (actually, all I remember our audiologist saying was

" I'm afraid I have bad news " - at that point it didn't register that he had a

profound loss). And I can remember driving him home, looking at my beautiful

blonde haired, blue eyed child thinking " I did this to you. " (my brother has a

unilateral moderate loss, I also have an uncle and a nephew who have hearing

loss, although we don't know if it's related) So obviously it was MY genes that

did this! I felt so guilty at that time.

Now that I'm a looooooong way down that road (I don't look at Tom or Sam and

feel bad that they wear hearing aids now - it's just part of them), I guess I am

lucky to know where the hearing loss came from. I know many folks who don't

have an idea of why their children have the loss that they do. I think you

really do have to grieve the loss of your child's hearing to get past it and

move on. I know I did. Your feelings are natural and will hopefully go away

with time. My boys' hearing losses were diagnosed within a few months of each

other, then my father died, - it was my cat dying after all that that sent me to

therapy! It helped a great deal to just talk to someone who wouldn't say " Oh,

you can't blame yourself " - because I did - they really helped me work through

it.

Short story long (ha!), but now almost 5 years after the initial diagnosis, I

feel okay with it all. Tom and Sam are doing very well - sure, it would be

easier for some things if they could hear but they can't so we deal with what we

have. I know there will be various bumps in the road as we move along, but for

now, things feel okay.

Take care of yourself! You've had a rough time.

Barbara