TWO HI kids now...what next?

[Guest guest]

In a message dated 5/10/2006 3:37:47 P.M. Central Standard Time,

saraandchadd@... writes:

My main concern - what about more kids? We really want more but is

that selfish? Part of me thinks so but the other part thinks that a

HL isn't that much different from having to wear glasses. Ok so maybe

a little but do you see the comparision?

Sara,

My husband and I went through that when we were trying to decide whether or

not to have more kids. For us, it was genetic (all three of my kids are

deaf/hh-- five generations). We came to the realization that we would make

the

decision simply on the idea if we wanted another child or not, and that we

wouldn't let the hearing loss be a part of that decision. As it turned out, we

didn't win the state lottery, so we couldn't fund another kid in the family.

I hope you give yourself some time to digest this news before you make any

decisions, nothing has to be decided right now. In time, you'll have a clear

idea of whether or not you'd like to add another bambino to the clan.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

Well after 13 months of testing, Katrina, more testing, and crossing

fingers we found out today that our 13 month old is definitely hearing

impaired. (our oldest -5 - is also). Where do I go from here? I

don't really know how I'm handling it. So far so good but there is

this little piece in the back of my mind that is scared I'm going to

break at any minute.

My main concern - what about more kids? We really want more but is

that selfish? Part of me thinks so but the other part thinks that a

HL isn't that much different from having to wear glasses. Ok so maybe

a little but do you see the comparision?

Talk me through this please!!!

Thanks - Sara

[Guest guest]

Wow, Sara - I have to say I know exactly how you must be feeling right

now. I kind of rolled with it when we got Tom's diagnosis (I think I

was numb, actually). Sam was diagnosed when he was 15 months - I was

just shocked. I honestly couldn't believe that both my kids couldn't

hear! I remember driving Sammy home the day we found out and I cried

all the way home thinking " I did this to you " (I'm over that now). And

for the first few months, people would ask me about my boys wearing

hearing aids and I'd just burst into tears. It's much, much easier

now. I know this sounds strange, but in some ways, it makes it easier

with both of them deaf - no one gets babied because it's just the way it

is in my household. But it did take awhile to get to that point...

If you haven't, you should talk with a genetics counsellor with the hope

you can find out what's behind your kids' hearing loss. That may help

guide you as to whether to have more kids or not (I never faced that as

I knew I only wanted two - oh, and I also was OLD when I had Sam LOL).

As to where you go from here, the first thing I did after Sam's

diagnosis was to get him into early intervention. I'm convinced that

Sam's earlier diagnosis and intervention made a huge difference for

him. I also found someone (a professional) to talk to. I'd also had a

traumatic year - nothing like Katrina, thank goodness but I'd also lost

my dad - so just having someone I could talk to helped immensely.

Be gentle with yourself - we're here if you need us...

Barbara

saraandchadd wrote:

> Well after 13 months of testing, Katrina, more testing, and crossing

> fingers we found out today that our 13 month old is definitely hearing

> impaired. (our oldest -5 - is also). Where do I go from here? I

> don't really know how I'm handling it. So far so good but there is

> this little piece in the back of my mind that is scared I'm going to

> break at any minute.

>

>

> My main concern - what about more kids? We really want more but is

> that selfish? Part of me thinks so but the other part thinks that a

> HL isn't that much different from having to wear glasses. Ok so maybe

> a little but do you see the comparision?

>

> Talk me through this please!!!

>

> Thanks - Sara

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

[Guest guest]

Oh - I also meant to say that learning about Sam's hearing loss was

*much* harder for me than Tom's. Don't know why but it really hit hard

for some reason.

Barbara

Barbara Mellert wrote:

> Wow, Sara - I have to say I know exactly how you must be feeling right

> now. I kind of rolled with it when we got Tom's diagnosis (I think I

> was numb, actually). Sam was diagnosed when he was 15 months - I was

> just shocked. I honestly couldn't believe that both my kids couldn't

> hear! I remember driving Sammy home the day we found out and I cried

> all the way home thinking " I did this to you " (I'm over that now). And

> for the first few months, people would ask me about my boys wearing

> hearing aids and I'd just burst into tears. It's much, much easier

> now. I know this sounds strange, but in some ways, it makes it easier

> with both of them deaf - no one gets babied because it's just the way it

> is in my household. But it did take awhile to get to that point...

>

> If you haven't, you should talk with a genetics counsellor with the hope

> you can find out what's behind your kids' hearing loss. That may help

> guide you as to whether to have more kids or not (I never faced that as

> I knew I only wanted two - oh, and I also was OLD when I had Sam LOL).

>

> As to where you go from here, the first thing I did after Sam's

> diagnosis was to get him into early intervention. I'm convinced that

> Sam's earlier diagnosis and intervention made a huge difference for

> him. I also found someone (a professional) to talk to. I'd also had a

> traumatic year - nothing like Katrina, thank goodness but I'd also lost

> my dad - so just having someone I could talk to helped immensely.

>

> Be gentle with yourself - we're here if you need us...

>

> Barbara

>

> saraandchadd wrote:

>

>> Well after 13 months of testing, Katrina, more testing, and crossing

>> fingers we found out today that our 13 month old is definitely hearing

>> impaired. (our oldest -5 - is also). Where do I go from here? I

>> don't really know how I'm handling it. So far so good but there is

>> this little piece in the back of my mind that is scared I'm going to

>> break at any minute.

>>

>>

>> My main concern - what about more kids? We really want more but is

>> that selfish? Part of me thinks so but the other part thinks that a

>> HL isn't that much different from having to wear glasses. Ok so maybe

>> a little but do you see the comparision?

>>

>> Talk me through this please!!!

>>

>> Thanks - Sara

>>

>>

>>

>>

>>

>>

>>

>> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>>

[Guest guest]

are both you and your husband D/HOH? Just curious, I like

following genetic stuff like such.

-Robin

Re: TWO HI kids now...what next?

In a message dated 5/10/2006 3:37:47 P.M. Central Standard Time,

saraandchadd@... writes:

My main concern - what about more kids? We really want more but is

that selfish? Part of me thinks so but the other part thinks that a

HL isn't that much different from having to wear glasses. Ok so maybe

a little but do you see the comparision?

Sara,

My husband and I went through that when we were trying to decide whether

or

not to have more kids. For us, it was genetic (all three of my kids are

deaf/hh-- five generations). We came to the realization that we would

make the

decision simply on the idea if we wanted another child or not, and that

we

wouldn't let the hearing loss be a part of that decision. As it turned

out, we

didn't win the state lottery, so we couldn't fund another kid in the

family.

I hope you give yourself some time to digest this news before you make

any

decisions, nothing has to be decided right now. In time, you'll have a

clear

idea of whether or not you'd like to add another bambino to the clan.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

I am sorry that your baby has a HL too. It sounds

like you are handling it okay so far - and you have

every right to break down. I have no words of wisdom

in terms of having more kids. We only have one (who is

HOH) and I am scared that another one will be HOH as

well.

I think that hearing loss SHOULD be compared to a

vision problem but I don't think our society sees it

that way...which is a shame.

Anyway, good luck to you and at least your son's loss

is only mild. You probably won't even be able to tell

he has a loss.

Alison

--- saraandchadd saraandchadd@...> wrote:

> Well after 13 months of testing, Katrina, more

> testing, and crossing

> fingers we found out today that our 13 month old is

> definitely hearing

> impaired. (our oldest -5 - is also). Where do I go

> from here? I

> don't really know how I'm handling it. So far so

> good but there is

> this little piece in the back of my mind that is

> scared I'm going to

> break at any minute.

>

>

> My main concern - what about more kids? We really

> want more but is

> that selfish? Part of me thinks so but the other

> part thinks that a

> HL isn't that much different from having to wear

> glasses. Ok so maybe

> a little but do you see the comparision?

>

> Talk me through this please!!!

>

> Thanks - Sara

>

>

>

>

>

__________________________________________________

[Guest guest]

I justed wanted to thank everyone. I'm just a little more bummed than I am

upset. Then again I'm also " happy " because my DD won't be the only one anymore.

So I guess you just take it from here.

And my sis really put things in perspective for me. She told me that a friend

of hers has a child with a very severe genetic disorder and is not expected to

live to age 5. He's 3 and his organs have begun to fail. It really makes you

realize that I would take a hearing loss over anything else ever!

---------------------------------

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[Guest guest]

In a message dated 5/10/2006 6:17:41 P.M. Central Standard Time,

bswatson@... writes:

are both you and your husband D/HOH? Just curious, I like

following genetic stuff like such.

Yes, both of us are deaf. My husband was born profoundly deaf (his mom had

the german measles when pg) and I was born hearing and became hard of hearing

as a child and then profoundly deaf at 19. My mom is deaf as well as all of

her siblings and all four of my siblings are deaf or hh. All of us were

born hearing.

Putz

Illinois Families for Hands & Voices

_www.handsandvoices.org_ (http://www.handsandvoices.org/)

_www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

Email: support@...

[Guest guest]

In a message dated 5/10/2006 10:52:09 P.M. Eastern Daylight Time,

saraandchadd@... writes:

And my sis really put things in perspective for me. She told me that a

friend of hers has a child with a very severe genetic disorder and is not

expected to live to age 5. He's 3 and his organs have begun to fail. It

really

makes you realize that I would take a hearing loss over anything else ever!

I wasn't going to chime in here because I don't have two D/HOH kids. But

when Ian was really little, we went through batteries of tests and surgery at

6-weeks for things that I won't go into. Happily Ian turned out to be okay. The

most serious thing we were left with was the hearing loss. My initial

reaction was " That's all? I can handle this! " (which was of course followed

soon

after by guilt over having done this to him).

Once past that really normal stage of mommy-guilt, I knew that the hearing

loss is just a minor bump in the road. Even Ian's early issues didn't dissuade

us from deciding to have . Having another kid with hearing loss wasn't

what stopped us -- I'd have had a third if I could have, even if the hearing

loss was part of the package. Heck, I'd be so well prepared this time! But

unfortunately it wasn't an option ... plus I was also old, LOL

I agree that the decision should be about making an addition to the family,

not the hearing loss. But you've got to get where you're comfortable with

that. And if you guys aren't, then that's a valid reason for you to not have

more, and no one here will question your decision.

Best -- Jill

[Guest guest]

In a message dated 5/11/2006 9:32:54 A.M. Eastern Daylight Time,

saraandchadd@... writes:

..............man do I feel stupid for my post earlier!!!!

Don't ... that's why this list is so wonderful. You can speak from your

heart and you'll get advice and support. Any concerns and fears are very valid,

no matter what they are. Even if they suddenly seem small and silly afterwards.

They were big at the time, and the truth is, many of us have had similar

thoughts at some point.

-- Jill

[Guest guest]

Sara, you are really a great inspiration. You've survived Katrina and now you

seem really well on your way to surviving and thriving through this. My hat is

off to you. Keep that great perspective and if you need some time to cry, I

hope you do!

[Guest guest]

> And my sis really put things in perspective for me. She told me

>that a friend of hers has a child with a very severe genetic

disorder >and is not expected to live to age 5. He's 3 and his

organs have >begun to fail. It really makes you realize that I

would take a >hearing loss over anything else ever!

Sara - How true! When my son was diagnosed with ADHD and then his

hearing loss, I just kept chanting to myself - " I'll take this, God,

over a life threatening illness. " It doesn't mean I didn't cry (just

ask Barbara M)but I keep reminding myself this is small in

comparison to what others face.

Also, Barbara M. understates her case. I've had the pleasure of

getting to know her family over the past few years. If hearing loss

is a hurdle, her family wins a gold medal in track and field. Her

boys are amazing kids.

It's natural to want only the best for your children. Please keep in

mind that they've already won the lottery - they have parents who

care. It's the biggest part of success in any child's life.

[Guest guest]

Ok - can i just say wow. This really makes the whole " should we have more kids "

thing a non issue.

One question - did they tell you that your hearing wouldn't progress? They

are telling me that they don't think Hannah's will (they do think 's will -

at least to the point where Hannah is) but then I keep hearing stories about it

happening down the line.

.............man do I feel stupid for my post earlier!!!!

Parentsofdeafhoh@... wrote:

Yes, both of us are deaf. My husband was born profoundly deaf (his mom had

the german measles when pg) and I was born hearing and became hard of hearing

as a child and then profoundly deaf at 19. My mom is deaf as well as all of

her siblings and all four of my siblings are deaf or hh. All of us were

born hearing.

---------------------------------

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[Guest guest]

Amen! We were leaving the audiology department of the hospital two years

ago, and noticed that a few doorways down was the pediatric oncology

section. We ended our pity party that very day (well, as much as I was able

to as a mom!)

Robin

>

> I justed wanted to thank everyone. I'm just a little more bummed than I

> am upset. Then again I'm also " happy " because my DD won't be the only one

> anymore.

>

> So I guess you just take it from here.

>

> And my sis really put things in perspective for me. She told me that a

> friend of hers has a child with a very severe genetic disorder and is not

> expected to live to age 5. He's 3 and his organs have begun to fail. It

> really makes you realize that I would take a hearing loss over anything else

> ever!

>

>

>

>

> ---------------------------------

> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

> countries) for 2¢/min or less.

>

>

[Guest guest]

Nell - thanks for the nicey. I truly do think that when it's your kids,

you do what you have to do.

I am grateful every day that we have two smart kids who are " just deaf "

(well, Tom has ADHD also but you know what I mean). But I would also

say that when I got the news that first one child, then my second child

were both deaf, I was devastated and wasn't necessarily thinking how

lucky I am - I felt really bad, plain and simple and wasn't thinking

that we were lucky because our kids are healthy, etc.

An excellent book is " When Your Child is Deaf " by Luterman. He

talks in depth about things we as parents go through when we get the

diagnosis, etc. - he really does *get it*! I notice Amazon has to

special order it but I'm guessing someplace like A. G. Bell might have

it in their bookstore?

Take care!

Barbara

nell92662 wrote:

>

>

>

>> And my sis really put things in perspective for me. She told me

>> that a friend of hers has a child with a very severe genetic

>>

> disorder >and is not expected to live to age 5. He's 3 and his

> organs have >begun to fail. It really makes you realize that I

> would take a >hearing loss over anything else ever!

>

>

> Sara - How true! When my son was diagnosed with ADHD and then his

> hearing loss, I just kept chanting to myself - " I'll take this, God,

> over a life threatening illness. " It doesn't mean I didn't cry (just

> ask Barbara M)but I keep reminding myself this is small in

> comparison to what others face.

>

> Also, Barbara M. understates her case. I've had the pleasure of

> getting to know her family over the past few years. If hearing loss

> is a hurdle, her family wins a gold medal in track and field. Her

> boys are amazing kids.

>

> It's natural to want only the best for your children. Please keep in

> mind that they've already won the lottery - they have parents who

> care. It's the biggest part of success in any child's life.

>

>

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

[Guest guest]

I wish I were as eloquent as many on this list - I'm a geek unfortunately!

What I think I'm trying to say is that your loss is your loss - and it's

very much okay to recognize that it is a loss and also okay to feel bad

about it. I remember talking to a dad whose two boys are friends of my

two boys. His two boys - Ian and - are painfully shy, to the

point that the dad was wondering if he'd ever be able to just drop them

off at school rather than walking them in. Then all of a sudden he

looked at me like " doh! " and said - " oh gee, here you have deaf kids and

I'm complaining to you " . I told the dad that your problems are your

problems - and it shouldn't make you feel bad when you think about me

with different issues. So that's what I'm saying to you, Sara - don't

feel bad for feeling bad about your son because others are worse off. I

know when I was in the same situation, I felt guilty for feeling bad -

that's just crazy! So go with your feelings and know we're all here for

you.

Does that make sense?

Barbara

queen of geek-speak

JillcWood@... wrote:

>

> In a message dated 5/11/2006 9:32:54 A.M. Eastern Daylight Time,

> saraandchadd@... writes:

>

> .............man do I feel stupid for my post earlier!!!!

>

>

>

>

> Don't ... that's why this list is so wonderful. You can speak from your

> heart and you'll get advice and support. Any concerns and fears are very

valid,

> no matter what they are. Even if they suddenly seem small and silly

afterwards.

> They were big at the time, and the truth is, many of us have had similar

> thoughts at some point.

>

> -- Jill

>

>

>

[Guest guest]

An eloquent geek!!! You make total sense.

Sara - your feelings are VERY valid. Pain is pain, love is love.

There isn't a meter to measure who hurts or cares more. Not

recognizing your feelings isn't healthy. Much better to cry some and

understand why then to shove everything in with an " I'm fine " to

someday meltdown.

I think everyone is right about the decision to have another. As

long as YOU are in a place that you can do it, than go for it. There

aren't any guarantees. It's all a gamble, as my DH likes to say.

> >

> > In a message dated 5/11/2006 9:32:54 A.M. Eastern Daylight

Time,

> > saraandchadd@... writes:

> >

> > .............man do I feel stupid for my post earlier!!!!

> >

> >

> >

> >

> > Don't ... that's why this list is so wonderful. You can speak

from your

> > heart and you'll get advice and support. Any concerns and fears

are very valid,

> > no matter what they are. Even if they suddenly seem small and

silly afterwards.

> > They were big at the time, and the truth is, many of us have

had similar

> > thoughts at some point.

> >

> > -- Jill

> >

> >

[Guest guest]

Hello Sara,

My name is , mother of Alyanna 7, HOH. I was going to reply to your post

earlier but I'm trying to catch up on my emails.

I just wanted to let you know you shouldn't feel stupid at all. That's what

mothers are here for.....be concern about everything that has to do with their

children. What can I say...we love them too much!!!! I don't think you should

stop having kids because of hearing loss issue. That's kind of like saying if I

knew my daughter was going to be hard of hearing I wouldn't have her. Ofcourse

you would, because that is not a problem at all. If God brought them here with a

hearing loss I'm sure they he put something extra somewhere else. For my Alyanna

its her personality. She can make friends anywhere we are. There something about

her that you just have to love.

Think about it...your kids are very blessed. I'm sure when your family is

ready for another baby, hearing loss would not be your concern. You will love

them as much as they'll love you regardless.

Also...when we found out about Alyanna's hearing loss they told us she

wouldn't get it back. They said because some of the nerves are dead. I just

don't remember telling me if it could get worse. I also have two other children

younger than her and there both hearing.

Once again, don't feel stupid. You have all the rights in the world to ask

and/or be concern. Good Luck in any decision you make. I have 3 kids....and

hearing or not is hard ))), so have lots of fun!!! I think I lost a couple of

pounds running around.

Blessings,

in FL

Sara Chaddock saraandchadd@...> wrote:

Ok - can i just say wow. This really makes the whole " should we have more

kids " thing a non issue.

One question - did they tell you that your hearing wouldn't progress? They

are telling me that they don't think Hannah's will (they do think 's will -

at least to the point where Hannah is) but then I keep hearing stories about it

happening down the line.

.............man do I feel stupid for my post earlier!!!!

Parentsofdeafhoh@... wrote:

Yes, both of us are deaf. My husband was born profoundly deaf (his mom had

the german measles when pg) and I was born hearing and became hard of hearing

as a child and then profoundly deaf at 19. My mom is deaf as well as all of

her siblings and all four of my siblings are deaf or hh. All of us were

born hearing.

---------------------------------

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[Guest guest]

Deciding to have children is such an intensely personal choice that I

could never tell someone what to do. What I can say is that there are

no guarantees in life. I imagine that when I am in my 80s, my heart

will still hurt deeply if anything happens to one of my kids. If the

cause of your children's hearing loss is CX 26 or 30 related, you can

have any future fetuses and/or embryos tested for the issue.

Best,

[Guest guest]

I was never in your position because when we discovered 's loss I was

already 3 months pregnant with her brother. We only wanted two kids, so stopped

there. But I know that if we had wanted more children, I wouldn't have given a

second thought to having another one.

I kinda look at it from a little bit different perspective. When you look at

the big picture no one is guarenteed a " perfect " child when you get pregnant.

It's what parents all dream about, but the reality is that you have little to no

control over it. The creator of Signing Time videos has one child who is deaf

and another child with spina bifida and cerebral palsy. I'm sure there are

others out there who have more than one child who are faced with differing

disabilities.

You could always have some genetic testing done to see if it is hereditary.

The decision is a very personal one, and only you know how you would handle it

if you had another child who may have a hearing loss.

Debbie D

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

---------------------------------

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[Guest guest]

Thank you Jill - as the day wears on I'm more comfortable with the decision.

Something that I didn't mention earlier is that also had to have major

abdominal surgery when he was 5 months old (two weeks before Katrina at that!).

After a several apnea episodes, an ER trip, medication for " reflux " and a heart

monitor we FINALLY found out that he was born with malrotation. His intestines

were not in the right place when he was born and although it is often fatal we

were very lucky and caught it before his intestines had started to die!!

So that on top of the hearing loss is what is making me worry - why can't I

just have healthy kids! Ok - so besides Hannah's eczema she IS healthy - but

you get what I mean!! Then I wonder " what they heck would I even do with a

healthy kid " ???? Seriously I don't even know what infantcy without frequent doc

appointments and testing IS!LOL! ---- so maybe that explains it a little more.

What do I do if the next one has the hearing loss and a more severe birth

defect??? Unfortunately, these are all questions that can't be answered since

's defect was congenital and not genetic. But still.....makes me think.

JillcWood@... wrote:

I agree that the decision should be about making an addition to the family,

not the hearing loss. But you've got to get where you're comfortable with

that. And if you guys aren't, then that's a valid reason for you to not have

more, and no one here will question your decision.

Best -- Jill

[Guest guest]

Go with your heart . . . you were chosen as the parent for these kids

because you can handle it. If you had another child with a disorder or

problem of some sort, you would do fine just like you are now!

Remember, too, we all have some problem since we were born human. Think

about it . . . bad teeth, deviated septum, asthma, something later down the

road like cancer or diabetes, . . . I have two webbed toes on each foot, my

husband has bad teeth/astigmatism/sleep apnea, our son has bad teeth and

hayfever, and our daughter has a sacral dimple and LVAS . . . Other than

that, we're normal, healthy individuals. LOL.

Blessings and peace to you,

Robin in NC

>

> Thank you Jill - as the day wears on I'm more comfortable with the

> decision. Something that I didn't mention earlier is that also had to

> have major abdominal surgery when he was 5 months old (two weeks before

> Katrina at that!). After a several apnea episodes, an ER trip, medication

> for " reflux " and a heart monitor we FINALLY found out that he was born with

> malrotation. His intestines were not in the right place when he was born

> and although it is often fatal we were very lucky and caught it before his

> intestines had started to die!!

>

> So that on top of the hearing loss is what is making me worry - why

> can't I just have healthy kids! Ok - so besides Hannah's eczema she IS

> healthy - but you get what I mean!! Then I wonder " what they heck would I

> even do with a healthy kid " ???? Seriously I don't even know what infantcy

> without frequent doc appointments and testing IS!LOL! ---- so maybe that

> explains it a little more. What do I do if the next one has the hearing

> loss and a more severe birth defect??? Unfortunately, these are all

> questions that can't be answered since 's defect was congenital and not

> genetic. But still.....makes me think.

>

> JillcWood@... wrote:

>

> I agree that the decision should be about making an addition to the

> family,

> not the hearing loss. But you've got to get where you're comfortable with

> that. And if you guys aren't, then that's a valid reason for you to not

> have

> more, and no one here will question your decision.

>

> Best -- Jill

>

>

>

>

>

>

>

[Guest guest]

A few of these posts have mentioned the relief we all have felt at some

point that our kids " just " have a hearing loss, not something worse. I

just want to share something that happened to me in the early months

after Hadley's diagnosis. 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. " I have never, ever regretted my

words more than that moment. Obviously, none of us are happy that other

children have more serious problems than our own, but sometimes our

choice of words to soothe ourselves just cause anguish to another parent

going through a different painful experience.

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

other genetic causes of hearing loss. I am a BIG proponent of genetic

testing to rule out Connexins, etc., as that gives you a great deal of

useful information. I do want to point out that screening embryos for

these mutations that run in your family requires you to go through IVF

and freeze embryos for screening. While frozen embryos can lead to

successful pregnancies, the success rate is lower than using fresh ones.

Also, unless your insurance can be billed for the IVF as medically

necessary, you will be responsible for the cost. As someone who has

done IVF, as rewarding as the outcome may be, it's a long, long, hard

journey. In many ways, the process has been harder than dealing with

Hadley's hearing loss.

Sara, for us, we could not fathom the idea of another child until Hadley

was around 3. I just didn't want anything to take my attention from her

development (hearing and otherwise). When we finally decided that we

wanted to expand our family, we opted not to screen for Cx26 (the cause

of Hadley's loss). I felt that we had done a great job researching our

options and making good decisions for Hadley that we could handle

another child with a hearing loss (although I will admit to being

anxious about parenting a kid with a CI vs hearing aids). Also, just

because we had a child with perfect hearing would not rule out other

medical issues that could pop up in our genes-- they don't yet screen

for all around perfection! It's been about 2 years now that I've felt

we could handle a hearing loss in a second child, and I've now come

around to feel like we could handle whatever medical issues come our

way. All this practice with research and advocacy for Hadley can

certainly be transferred to other specialties! In that time, Hadley has

also been voicing her opinion that we need some babies in the family

and, quite honestly, it's a demand of her's that I hope happens for her

sake. I think being a child with siblings will only help her in the

long run.

Good luck to you with your decision, and take whatever time you need to

make it. There's no wrong answer, either way.

Kerry

[Guest guest]

I think it's our constant babbling about our children's problems that make

parents with sicker children upset, not our saying that things could always

be worse, necessarily.

>

> A few of these posts have mentioned the relief we all have felt at some

> point that our kids " just " have a hearing loss, not something worse. I

> just want to share something that happened to me in the early months

> after Hadley's diagnosis. 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. " I have never, ever regretted my

> words more than that moment. Obviously, none of us are happy that other

> children have more serious problems than our own, but sometimes our

> choice of words to soothe ourselves just cause anguish to another parent

> going through a different painful experience.

>

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

> other genetic causes of hearing loss. I am a BIG proponent of genetic

> testing to rule out Connexins, etc., as that gives you a great deal of

> useful information. I do want to point out that screening embryos for

> these mutations that run in your family requires you to go through IVF

> and freeze embryos for screening. While frozen embryos can lead to

> successful pregnancies, the success rate is lower than using fresh ones.

> Also, unless your insurance can be billed for the IVF as medically

> necessary, you will be responsible for the cost. As someone who has

> done IVF, as rewarding as the outcome may be, it's a long, long, hard

> journey. In many ways, the process has been harder than dealing with

> Hadley's hearing loss.

>

> Sara, for us, we could not fathom the idea of another child until Hadley

> was around 3. I just didn't want anything to take my attention from her

> development (hearing and otherwise). When we finally decided that we

> wanted to expand our family, we opted not to screen for Cx26 (the cause

> of Hadley's loss). I felt that we had done a great job researching our

> options and making good decisions for Hadley that we could handle

> another child with a hearing loss (although I will admit to being

> anxious about parenting a kid with a CI vs hearing aids). Also, just

> because we had a child with perfect hearing would not rule out other

> medical issues that could pop up in our genes-- they don't yet screen

> for all around perfection! It's been about 2 years now that I've felt

> we could handle a hearing loss in a second child, and I've now come

> around to feel like we could handle whatever medical issues come our

> way. All this practice with research and advocacy for Hadley can

> certainly be transferred to other specialties! In that time, Hadley has

> also been voicing her opinion that we need some babies in the family

> and, quite honestly, it's a demand of her's that I hope happens for her

> sake. I think being a child with siblings will only help her in the

> long run.

>

> Good luck to you with your decision, and take whatever time you need to

> make it. There's no wrong answer, either way.

>

> Kerry

>

>

>

>

> All messages posted to this list are private and confidential. Each post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

>

>

>

>

[Guest guest]

I don't know Barb, that's about as eloquent as I can get, so it makes perfect

sense to me.

Debbie D

Barbara Mellert Barbara.T.Mellert@...> wrote:

I wish I were as eloquent as many on this list - I'm a geek unfortunately!

What I think I'm trying to say is that your loss is your loss - and it's

very much okay to recognize that it is a loss and also okay to feel bad

about it. I remember talking to a dad whose two boys are friends of my

two boys. His two boys - Ian and - are painfully shy, to the

point that the dad was wondering if he'd ever be able to just drop them

off at school rather than walking them in. Then all of a sudden he

looked at me like " doh! " and said - " oh gee, here you have deaf kids and

I'm complaining to you " . I told the dad that your problems are your

problems - and it shouldn't make you feel bad when you think about me

with different issues. So that's what I'm saying to you, Sara - don't

feel bad for feeling bad about your son because others are worse off. I

know when I was in the same situation, I felt guilty for feeling bad -

that's just crazy! So go with your feelings and know we're all here for

you.

Does that make sense?

Barbara

queen of geek-speak

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

---------------------------------

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