Re: Re: this group means so much to me

September 9, 2001

In a message dated 9/9/01 9:43:52 AM Pacific Daylight Time,

ICANFIELD@... writes:

<< I was the only one who had noticed him having

DS . I said take him , do something , he was purplish ,everyone that

were in the room gave me a look . My doc walked in , had asked me ,

how did I know there was something about him . I told him his eyes . >>

Gosh Irma, thanks for sharing such a personal story. I knew as soon as they

laid Seth on my tummy too. Told my husband he had ds...I said...look at his

little finger and his eyes, he has downs. Doc was shocked. We were all

fine with the ds, but when they put him in ICU the night he was born and I

called my priest to come baptize him at midnight, I lost it. Ran outside of

the hospital at 2 AM and growled like an animal at the top of my lungs for

about an hour. I don't know if it was over the downs or the thought of

losing Seth, but after I wore myself out growling that night, I have not once

since then felt I have lost anything with having Seth as a son. Now, grief

is my 25 year old who still rebels at convention (or anything), drinks too

much and won't stay in one place long enough for me to visit very

often....there's a reason to feel grief and frustration! LOL Time to go out

and growl at the moon again I guess. LOL

Gail :-)

September 9, 2001

In a message dated 9/9/01 7:42:33 PM Pacific Daylight Time,

ICANFIELD@... writes:

<< I

hear ya , about your 25 yr. old . Prayers that the Lord is always

watching over him , especially when he drinks . He'll come around .

Just remember he has to learn the hard way by us parents trying not

to get involved in their life . I have a 23 1/2 , he is doing very

well , now . I'm so proud of him . >>

Well Irma, he is a she and it's time she grew up. LOL We help where we

can...like paying their phone bills, until I got a $600 one last week. LOL

She is now phoneless! LOL So glad for you that your son settled down.

Seems the bigger the kids get, the bigger the problems get. I'd take a

hundred little ones over 1 big one any day. But, then again I guess I'm a

control freak and I can control the little ones. LOL

Gail :-)

September 10, 2001

Since we're all sharing when we got the news, I'll throw my story in. was

my first child, and I was only 25 so I didn't " qualify " for the tests according

to the Navy (not in a risk group, etc.). When was born, they laid him on

my tummy to cut the cord. He looked right up at me, and had green eyes. I

remember falling instantly in love with him. They cleaned him up and took him

away for his ped evaluation. I remember thinking he was gone an awfully long

time; for 30 minutes. Then the pediatrician came back without him. He said to

us (and I'll never forget these words): Mr. and Mrs , your son shows all

the signs of Down Syndrome. Bam. No, I'm sorry, nothing. Everyone kept asking

me " Are you sure there wasn't a heart murmer? " At 2 weeks we went for the blood

test to comfirm it, and genetic counseling, and (though we didn't know it until

we got there) a visit to the heart clinic. They did an echocardiogram. I

worked a bit with something that looks like a sonogram in the Navy (if you

really stretch it) and my mom is a nurse, so I had some exposure to the medical

field. I knew those colors shouldn't be mixing like they were. I asked the

technician and she said, " I'm just the technician, I'll have to get the

attending. " Then the attending said, " Let me get the head of cardiology. "

That's when I got scared. had a hole in his heart so big that he didn't

have a murmer. They sent us home, thinking to make an appointment for later. I

didn't know it until a couple of weeks later, when DH didn't have to go out with

the ship he was on, that they told him could die in 2 days, 2 weeks or 2

months. That was harder for me than the DS. I lined a laundry basket with

towels and used it for a bassinet right beside my bed. I got no sleep because

every time I came the least bit awake, I had to lean over and put my hand on him

to make sure he was breathing.

had his first heart surgery at 3 months. They did a pulminary artery

banding as a patch job until he weighed enough for suregery. They did open

heart surgery at 15 months, and had to back out (after making an incision in the

heart) because there was no septum between the valves. He had the VSD fixed at

4, but they damaged the vavle (they had found just enough septum to anchor a

patch to - my second miracle after him living to be 4). Now we're waiting for

another surgery to replace the vavle, but he isn't in distress, so they're

trying to put it off as long as possible.

I was relieved to discover that he was autistic, too. I knew there was

something else going on than just the DS. It was like, OK, autism can't kill

you like a heart problem. The strange thing is, when was born, I remember

saying to my mom, I can handle DS, at least he's not autistic, I don't think I

could handle that.

Loriann

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS, and wheat allergy

And , 2 years and strong-willed

Both homeschooled

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September 10, 2001

In a message dated 9/10/01 8:52:44 AM Eastern Daylight Time,

hsmyangels@... writes:

> . The strange thing is, when was born, I remember saying to my mom, I

> can handle DS, at least he's not autistic, I don't think I could handle

> that.

>

Oh BOY Loriann. I TOO said that!!! Now that you've moved back here, do

you get new heart docs for ??? How does that work? Where will he

have his surgery?

Now for my story. I learned I was pregnant with Maddie when Alison was 7

months. I'll never forget Duff coming home and saying to me... " What's the

matter; you look like someone died " . I said.... " Someone DID die....the

rabbit!!!! It took about 10 seconds for me to be thrilled after he stopped

laughing......His response was... " Hell, we have 4, what's one more " . Laying

on the operating table 9 months later (I have all c-sections), they lifted

Madison out. Within seconds Duff was whisked out of the room and THEN

allowed back in (a MAJOR OR no no). My radar was going hay-wire. He had a

terrified look on his face and kept swearing everything was fine. The nurse

asked me TWICE how old I was. 34. Now I'm in recovery and Duff can't say

it. He just can't get it out. He says... " I don't know---they want to do

some kind of test " .......I'm in a total panic. My gyney is walking by and

Duff yells... " Yo Stuart!!! " . The two of them whisper in the hall, while I

feel like I'm dying. Then they come in and Stuart says, " Donna, they want

to do a chromosone test; do you know what that means " . Of course I know

what it means; I've got 5 kids!!!!! I insisted on seeing Maddie

immediately, trying to convince my poor hubby in the meantime that they MUST

be wrong. When I think of the stuff I said!!!!! I told him " you know,

we've never delivered here (I had my tubes tied right after the birth, so I

couldn't deliver in our Catholic hospital where my other kids were born);

they're probably just not experienced (LOL) " Then they handed her in my

arms, and my heart swelled so I thought it would burst. I turned to Duff

and said, " I don't need a test; I see it " . I've never told my other kids

this, but I absolutely felt something different that day. It was something

EXTRA, along with her chromosone. I must be a terrible mom because I

couldn't tell you what my other kids' faces looked like at birth (thank God

for pictures), but Maddie's is forever emblazoned in my brain. If I close

my eyes, I can draw a perfect visual of that very moment when she looked up

at me! I remember with my other kids, holding them and thinking, I have a

HUGE job of getting to know this new creature. I never bought into that

instant bonding with Mom in lace and ribbons. Not with Maddie. It's hard

to explain without sounding like a neglectful mother to my other kids, but I

felt like I had a mission all of a sudden. Not that I didn't have a great

purpose in life as mother and wife already, but suddenly it was different.

I had one of those " Aha " moments!!

BTW, that pediatrician who broke the news to Duff never came to tell me,

coward that she is. And the on call staff had the most horrendous doctor on

the planet. I made him so nervous that when he came to check on Maddie he

talked for one half hour about all the trophies his nine year old son has

won---not ONE word about my daughter. When he left, the nurse had tears

streaming down her face and she said... " Mrs. Duffey, I am so so sorry " .

Another thing that stands clearly in my mind is that I'd just had my fifth

cesarean section (only 16 months after my last one), major abdominal surgery,

and I felt no physical pain.

Donna

September 10, 2001

In a message dated 9/9/01 5:07:59 PM Eastern Daylight Time,

smilinggail@... writes:

> Seth, but after I wore myself out growling that night, I have not once

> since then felt I have lost anything with having Seth as a son. Now, grief

> is my 25 year old who still rebels at convention (or anything), drinks too

> much and won't stay in one place long enough for me to visit very

> often....there's a reason to feel grief and frustration! LOL Time to go

> out

> and growl at the moon again I guess. LOL

>

LOLOL Gail. Moon growling is a good stress reliever!!! ;-)

Donna

September 10, 2001

WOW!!!! Donna, what a powerful story and so much like my own. I also

having 5 children but being my 3rd I will never forget the face

that would change my

typical hum drum life that once was and never will be again. I had all

natural deliverys and also in a catholic hospital, I had a high risk

team of doctors because my 2nd child was 11 pounds vaginal ouch!!! they

thought at nine months he would be 8 pounds or so. anyway with in

seconds after was born and they were through cleaning him up they

handed him back to me and said< we are very sure your son has ds

and will do testing on him. I truley in all my 30 years at that time,

never had the feelings and emotions I experienced in that moment of time

when those word left the doctors mouth. and it seems with each milestone

and goal reached in the 51/2 years since, I re-live many of the exact

same emotions.. mom to Alek 8, 7, 51/2 ds/asd, Logan

4 and Liam 18 months and climbing.

September 11, 2001

> The strange thing is, when was born, I remember saying to my mom, I can

handle DS, at least he's not autistic, I don't think I could handle that.

>

> Loriann

>

> Wow, Loriann!

I remember saying EXACTLY the same thing. Autism was such a big scary unknown

(still is...). It's amazing what you really can handle when you have to

> Carole, currently lurking because I'm overwhelmed with

Nicolas, 6 ds/asd

and 6 months

>

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September 11, 2001

i remember crying and crying when i found out the day after nhtan was born, i

couldnt talk to anyone about it, it broke my heart, but i cant imagine life

without my little nathan guy,lol. shawna.