Re: Supermom

[Guest guest]

Janet-

I hear ya loud and clear! Oh, I hate that too! When people used to say

that I was given Aubrie because I am so wonderful, blah, blah, blah, I'd

say that if I knew I was gonna be given this as my reward I would've

been a schmuck! I, too, am getting tired of being supermom and not

getting to just relax and be mom with Aubrie. She is missing out on so

much. I find one of 's baby pictures the other day. He was

wearing jammies that Aubrie wears now, sitting on the couch, holding a

book, smiling at me with the biggest brightest eyes. He was younger

than Aubrie is now. It set me close to tears for the rest of the day.

I'm wondering if I'll ever be able to look back at his photo albums

without feeling so sad and cheated, for myself and for Aubrie.

Well, I guess I didn't cheer you up, but atleast you know you're not

alone!

Michele

mom to Aubrie (10 mos) CHargE and (almost 7 yrs)

IL

westml@...

[Guest guest]

Debbie-

Thanks so much for the words of encouragement. Boy, did I need that

right now!

Michele

mom to Aubrie (10 mos) CHargE and (almost 7 yrs)

IL

westml@...

[Guest guest]

Anne-

Thanks for your views about . It gives me something to look

forward to with Aubrie. I do cherish her cuddles and baby-ness, it's

only when I find those photos of or go out and see other kids

that I feel so sad.

Re: the walker-- did have a standing frame before that? Many on

the list have talked about standing frames. My PT at Children's

Hospital was adamant about Aubrie getting one at or before one year of

age. She believes very strongly in them. We've recently switched

therapists (closer to home) and this one seems relaxed about it. She's

never brought it up --only when I ask about it. She thinks " it probably

wouldn't hurt " like she could take it or leave it. Do you have any

comments? Anyone else out in Chargeland have comments or advice?

Michele

mom to Aubrie (10 mos) CHargE and (almost 7 yrs)

IL

westml@...

[Guest guest]

Michele Westmaas wrote:

>

>

>

> Janet-

> I hear ya loud and clear! Oh, I hate that too! When people used to say

> that I was given Aubrie because I am so wonderful, blah, blah, blah, I'd

> say that if I knew I was gonna be given this as my reward I would've

> been a schmuck! I, too, am getting tired of being supermom and not

> getting to just relax and be mom with Aubrie. She is missing out on so

> much. I find one of 's baby pictures the other day. He was

> wearing jammies that Aubrie wears now, sitting on the couch, holding a

> book, smiling at me with the biggest brightest eyes. He was younger

> than Aubrie is now. It set me close to tears for the rest of the day.

> I'm wondering if I'll ever be able to look back at his photo albums

> without feeling so sad and cheated, for myself and for Aubrie.

>

> Well, I guess I didn't cheer you up, but atleast you know you're not

> alone!

>

> Michele

> mom to Aubrie (10 mos) CHargE and (almost 7 yrs)

> IL

> westml@...

>

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

Michele,

Don't feel so bad yet. I think it just takes a little longer to enjoy

these kids as babies because I went through it with . I never

got to hold him and rock him. He was splattered out on a warmer in the

hospital like a frog for months. Now, he is 17 mths and boy is he

adorable. He has such a personality. Yesterday he accomplished

standing himself up about 20 times and each time he did it he would clap

and say yah for himself. We really enjoyed him so much yesterday and

everyday. He is " talking " and his new word is shoes because he just got

new shoes (he signs and tries to say it). My point is that no, I didn't

enjoy either as a baby, his birth was was really a nightmare.

There was no real bonding because he didn't get bottle fed. But he

knows his family, his dog, his house, and loves to be with us. I thank

god for his presence around me everyday, because I realize that he might

not have been here and that he really is a miracle. He is not the

perfect kid I dreamed about having, but he is so bright and happy, and

now that he IS FEELING BETTER, he is developing by leaps and bounds. I

am enjoying him just as I would my daughter (minus being able to feed

him normally). It is just that they can't accomplish things as quickly

as a " regular " kid because of all the medical stuff. Give Aubrie a

chance. You'll see, in a few months, things will change as she starts

to do more (and believe me she will).

Debbie mom to almost 17 mths, almost 4

[Guest guest]

Michele:

One nice thing about CHARGE babies is that they stay " babies " longer. Other

18-month-old kids are running all over and is content just to snuggle

with Mom. This is something I cherish, since I also went a long time with

little or no touching, especially holding. was in the NICU for 10

weeks, then UW Children's Hospital for 3 weeks, and even for several months

after she did come home it was " hands off. " I cried the first time she clung

to me and didn't want to be put down. What a feeling. She was probably at

least 6 months old!

Now at 18 months, is signing Mom, Dad, book, more, up, hi and bye, and

she is snuggly and affectionate. I think we all appreciate things like that

more since we have to wait longer to enjoy them. Today we brushed each

other's hair, and it was so sweet! She asked for " book " at bedtime last

night, too.

So, hang in there. Aubrie will probably hit a streak of big jumps in

development pretty soon, and you'll be amazed.

Other subject: got her new walker... " gait trainer? " ... last week.

She loves it. It's just like a regular infant walker, but it goes taller and

it doesn't have a tray. My great-aunt celebrated her 100th birthday last

weekend and had a BLAST at the big party, scooting around on Grandma's

kitchen floor and watching people. Little social butterfly.

Anne Vanderbloemen, Mom of 18 months CHArgE

Madison, Wisconsin

[Guest guest]

Michele,

I understand what you guys are saying completely...when people say " it's

all meant for a purpose " yada yada yada, I just shiver. " Everything

happens to teach us something " , ya right, like a baby or young child

getting molested, raped, dismembered and killed <I just read the book by

the father of a young boy who this happened to>. I'm atheist, so my

answer to all that crap is: " If your " god " does this to innocent babies

for *whatever* purpose, I " m glad I have nothing to do with him, because

he's a sick puppy! "

> I hear ya loud and clear! Oh, I hate that too! When people used to say

> that I was given Aubrie because I am so wonderful, blah, blah, blah, I'd

> say that if I knew I was gonna be given this as my reward I would've

> been a schmuck! I, too, am getting tired of being supermom and not

> getting to just relax and be mom with Aubrie.

--

Graeme & Weir

gweir@...

http://www.geocities.com/SunsetStrip/Palms/5716

[Guest guest]

Michele.

I had never heard of a " standing frame " until I saw it here. Destiny enjoyed

standing on her feet from the time she was very small (6 mos or so). We would

hold her hands and she would stiffen her lower body and " stand. " She did this

for many months until she walked at 2 y.o. The PT was against this because she

felt Destiny would depend on this stiffness and not learn how to bend her legs

for walking (this is also the same PT that said no backscooting, but we let

her do it anyway). I asked her about getting Destiny a walker and she said, in

her experience, kids learned to walk at the same rate (if not later) w/ a

walker. I see here that some kids need the push the walkers give them and

teaches them the basics of moving their feet while balance is still a BIG

problem. Obviously, we never used one, but I think we are one of the lucky

ones since Destiny walked early for Chargers.

Good luck w/ your decision!

(Destiny 5 1/2 CHARgE, Zachary 3 1/2)

Staten Island, NY