Re: Hard of Hearing / Accepting Your Childâ€™s Hearing Lossâ€”Ok, a b...

October 17, 2004

I didn't have a baby with aids, Ian was 7 when we discovered his loss. Ian

was thrilled, delighted, and overwhelmingly relieved when he got his first

aid. And he is the one who asked for the second aid. He was incredibly thrilled

the day his second one arrived. He wasn't a baby, but still, I grieved,

cried, got mad and asked God why my baby!? But in the end, it didn't matter to

me

because he was mine and he is marvelous. Of course, I'm just a touch biased.

He was older and still some people stared, some people asked questions ...

now some people approach and talk to Ian because of his aids.

Here is a story from a few years down the line (told to me by my husband).

This past summer Ian was doing community service by handing out free coffee at

the local rest stop on the highway. His Boy Scout troop takes on 2-3 weekend

a year to do this. As he stood there, a deaf lady came over to talk with

him. She chose to talk with him not the other scouts. She was wearing hearing

aids, speaking and signing. Then her husband and son came out of the bathroom

and joined the conversation. They both were also aided. Within a few minutes,

Ian had himself a little crowd of people talking. They were all deaf or HOH,

wearing aides and not. A lot of chatting, signing, laughing ... and all stran

gers who met over coffee at a rest stop.

My husband was there as the adult supervisor and he watched our son in the

little crowd of people and said that he was so incredibly proud. We often have

worries and doubts about Ian's future. But at that point he saw his son was

a secure and capable young man. He was very proud ... it's been a long road

to this point.

We went through the anger, the doubts, I cried for no apparent reason. I

still get teary when reading or typing some of these list notes. But it all

does

become just a part of our everyday life. The doctor appointmetns become

fewer and fewer until they're just annual or every 6 months. The kids become

more

responsible for caring for their equipment. When he is running low, Ian now

adds the words " Ian batteries " to the shopping list I keep on the fridge. It

really does become just another detail in an otherwise normal life..

People stare at everything from car accidents to teenagers with green hair.

So, who cares who stares?

Best -- Jill

In a message dated 10/17/2004 10:59:18 AM Eastern Daylight Time,

s_lynne_flores@... writes:

I hope you can figure out what caused her deafness, but if you can't, don't

worry about it. Yes, people will ask 20 (or 1000) questions, but let them.

Let people stare. They stare at the unfamiliar. Like, I was holding

Christian at the grocery store about a month ago and just about had an elderly

couple walk their cart into the baby food section at walmart. OMG! They were

just staring. I don't care. They're the ones who look dumb!

Thats just my opinion anyways!

October 19, 2004

In a message dated 10/18/2004 8:08:14 PM Eastern Daylight Time,

s_lynne_flores@... writes:

I only felt painI had to be strong for Christian. If I wasn't strong, I

don't know if anyone would be! Sorry to go on and on like this!

,

Not to worry. So many people on this list have a similar story, I'm sure we

can all relate in one way or another.

Ian was not in the nicu, he was not that much of a premie and didn't need

that kind of care. But by 6 weeks he did need surgery to remove a cyst from his

neck. It had grown large enough to impede his swallowing and would soon

affect his breathing. Actually he needed it earlier, but the placement of the

cyst endangered his vocal cords and they wanted to wait until he was literally

physically bigger. And like I said in an earlier post, he was not growing much

at that point. They'd been monitoring him/it ... they were aiming for 6

weeks because they thought he could handle the anethesia better at that point.

I was terrified. He was so little that the IV lady couldn't figure out how

to run his IV lines ... even the tiny pediatric needles were too big for her

to manage and there was " no one else there at that hour. " I threw her out of

the room after she'd tried several times and the child was tatoo'd with

bandaids. She wanted to run his lines into the vessels on his head! Like I

said, I

chased her out of the room. I must have seemed insane, she certainly looked

scared as she gathered her stuff and fled. Then a call came that the

anesthesiologist (a specialist)was stuck in Jersey and possibly was not going

to make

it in time ... I felt like a cornered lioness. I was ready to take that

little baby and run out of the hospital.

Then our pediatrician arrived. He didn't have to, he was not on-call, he was

not required to be there for the surgery, and it was about 6:30 am. But he

came. He ran the lines into my son's arm, grumbling that all they needed to do

was call for the pediatrician-on-call or a nurse from the nicu, that they

didn't need to frighten a parent like that. He calmed me down and explained

that it was common to run lines into an infant's head because the vessels are

more available but that you NEVER do it in front of a parent. Then he made a

call and the head of anethesia for the hospital came in to handle our son's

surgery. He took control and made everything work. Thank goodness.

They would only allow one parent into the recovery room so I was in there

with him, alone, waiting for him to wake up. He was sooooo little, so fragile,

with wires coming off him in every direction hooked to machines. They kept

him on a crib-death monitor for an extra day (or was it two?). Those days are a

blur now. It was horrifying to me. I slept on a chair next to his crib for

the entire stay and I didn't cry the whole time either. That came later after

we were safely home.

Years later, when they correctly identified his hearing loss, the doctors

suspected several potentially life threatening syndromes. After a frightening

collection of medical tests, happily, none were confirmed. What was left was a

hearing loss with few other issues. So very minor by comparison. We decided

that the hearing loss was a cake-walk compared with what could have been and

what he'd already been through. Our first reaction was relief. That didn't

mean there was no grief or anger, those came later on as we started to deal

with those needs and learn about everything.

The funny thing is that now that he is 14, all of this seems almost like a

story about someone else's life. I can picture him so tiny with wires coming

off every part of his body. But at the same time ... it is another world.

Best -- Jill

October 19, 2004

Jill, thats horrible that they did that to you/him!!!!!!!!!! I watched a lot of

Christians procedures b/c I wanted to. But for them to do that to you for no

reason. Just the stupidity of the nurse. Christian did have several lines in

his head b/c his veins were so tiny that they " collapsed " a lot. He had a picc

line in his armpit and when that collapsed, then they ran it up his left leg

into his heart. But they often had lines in other places for blood and such.

It was scary to see the lines in his head. I never watched them place it. We

watched the bronchoscopy twice (to look into his lungs), I watched the eye exam

(not for the queasy (sp) and I watched them do other things, but never watched

them place an iv).

I'm glad thats all in the past for you and it's just a faded memory. I hope

that comes soon for us.

__________________________________________________

October 19, 2004