my day

[Guest guest]

Kelli,

Holy Moly! I am completely outraged with your specialist! What kind of a

stupid idiot is this man????? Kelli, is there anyway you could seek a second

opinion? Maybe see if you CT could recommend a specialist in your area that

has experience with plagio? I think you are right to go ahead with the

banding, but I think you should still seek an official diagnosis from a

specialist and get a radiologist to read the scan.

I'm so, so sorry to hear what a jerk this guy was!

Marci (Mom to )

Oklahoma

[Guest guest]

Kelli,

What can I say except, déjà vu! My neuro had not clue one about the DOC band, nor the tot collar. Don't forget, you can also get plagio from a third cause, torticollis, the tight neck muscle, which is what caused my son's flatness. He did not seem to know too much either, and did not direct me at all in what to do about torticollis, I didn't even ask him about the flatness, why bother! Turns out it was a good thing, he was like, what is that on his head? So, I had to go into detail and explain all about the DOC band and that the CT office was 5 minutes from his! He didn't even refer me to a pt that worked with torticollis, my reason for seeing him in part. Thankfully, my insurance picked up the bill, a whopping $350 per visit! 10 minutes of me telling him what my son has, how to correct it, etc. What a joke! Although I know tort is not that common, and plagio is only now considered on the rise, you would think these Docs would have to take some continuing ed courses on what's new in their respective professions! Hell, they make it harder on contractors and tradesman alike, to remain licensed then they do for Doctors! Sorry, had to vent with you! A toast: here's to educating our Doctors in the name of our children's health and those that come behind us!

' Mom

[Guest guest]

Here, here - I'll raise a glass!

Marci

[Guest guest]

Kel:

WOW, this guy sounds like a real dope! You poor thing. Why again

did he want another CT scan done? I could refer you to the pediactic

neuro Abby saw here in GR if you'd like, he wasn't all that great

either, but did at least understand plagio. I would suggest going

ahead with getting the DOCband - you should see results w/i 2-4 wks,

if not, then I'd be concerned again with cranio. Most of us in this

room have unfortunatley had similar experiences with our Drs &

specialists regarding plagio. It's a shame.

And for him to insult you behind your back?? Nice, real nice.

Don't let that get to you - Em's on her way to a rounder head. In

the mean time, I would suggest sending a letter to this Dr. you saw

today explaining plagio with enclosed DOCband brochures & articles

(like they have at CT). Like it's your job to educate this highly

paid Dr., but maybe you'll get your point across that he needs to be

better educated & you could help other baby's & parents in the future.

Debbie Abby's mom DOCgrad 6.22.01

p.s...thank you for your kind words in yesterdays post, I'm glad I

helped you & Em

Michigan

> This has been a horror story for me. We kept our

> appointment at the Neuro specialist not to far from

> where I live. If any of you need to see one, make

> sure they know something about Plagiocephaly or babies

> for that matter.

>

> He listened to me. When asked if he knew about the

> DOC band or banding babies, he was like HUU? He

> leaned back into his chair held up the CT's and read

> them thru the light above... (warning, warning). He

> didn't even ask questions about if she's doing this,

> or that... his question is " well, how is she doing

> developmently? " So I was sure how to respond, so I

> started listing the things she's does, like standing,

> yabbling, ect... he's like huuuhhh. I don't think he

> had a clue everyone. He asked me, how she got the

> plagiocephaly, ah duuuu, only two ways to get it. Why

> not ask if it's inuterio or sleeping on her back. He

> didn't even ask me if she did that!!!

>

> So, he says, we'll, what do you think about doing this

> again... I'm like, What??? He says, the CAT scan,

> and I said, well, expensive!!! So he said he wanted a

> radiologist to read the scan and for me to leave with

> him. I'm like, well what about the moulding, should

> we have CT send it off to make her helmet? He said,

> sure, sounds like a good course of action.

>

> Then, I'm waiting by the window on the way out, to get

> a card so I can call him next week, and here him

> saying behind a wall in the office, that girlfriend is

> really hard to deal with. Well, duuu, I friggin knew

> more than him.

>

> So I've thought about it, and talked with CT. WE're

> going to band and if nothing comes out in a

> month, which both CT and I think it should, then we'll

> fly anywhere that has the best possible Pediatric

> neuro.

>

> Sigh, what a waste of my time and money. (That little

> joke of an appt is sure to cost me $150 or

> more...sigh)

>

> Everyone, have a great weekend.

>

> I'm entering Em in one more baby contest before

> banding, because I have that little dress...lol.

>

> Kelli, mommy to Carole

>

> =====

> Kelli D Kelmi_4@y... Pictures:

http://photos./Kelmi_4

>

> __________________________________________________

>

[Guest guest]

Kelli:

I would call that twit and have him send you the films from the scan - ASAP!!! Send them to someone who knows what they are doing!!!! There must be SOMEONE in your area who at least knows how to read a CT scan! This guy was a neurosurgeon?? neurologist??? Unbelievable! Grrr!

Kendra in Canadawww.plagiocephaly.org/support/Plagiocephaly/joinhttp://geocities.com/kendraandhanna/

----- Original Message -----

From: Kelli D

Plagiocephaly

Sent: Friday, September 21, 2001 1:54 PM

Subject: My Day

This has been a horror story for me. We kept ourappointment at the Neuro specialist not to far fromwhere I live. If any of you need to see one, makesure they know something about Plagiocephaly or babiesfor that matter.He listened to me. When asked if he knew about theDOC band or banding babies, he was like HUU? Heleaned back into his chair held up the CT's and readthem thru the light above... (warning, warning). Hedidn't even ask questions about if she's doing this,or that... his question is "well, how is she doingdevelopmently?" So I was sure how to respond, so Istarted listing the things she's does, like standing,yabbling, ect... he's like huuuhhh. I don't think hehad a clue everyone. He asked me, how she got theplagiocephaly, ah duuuu, only two ways to get it. Whynot ask if it's inuterio or sleeping on her back. Hedidn't even ask me if she did that!!! So, he says, we'll, what do you think about doing thisagain... I'm like, What??? He says, the CAT scan,and I said, well, expensive!!! So he said he wanted aradiologist to read the scan and for me to leave withhim. I'm like, well what about the moulding, shouldwe have CT send it off to make her helmet? He said,sure, sounds like a good course of action.Then, I'm waiting by the window on the way out, to geta card so I can call him next week, and here himsaying behind a wall in the office, that girlfriend isreally hard to deal with. Well, duuu, I friggin knewmore than him. So I've thought about it, and talked with CT. WE'regoing to band and if nothing comes out in amonth, which both CT and I think it should, then we'llfly anywhere that has the best possible Pediatricneuro. Sigh, what a waste of my time and money. (That littlejoke of an appt is sure to cost me $150 ormore...sigh)Everyone, have a great weekend.I'm entering Em in one more baby contest beforebanding, because I have that little dress...lol.Kelli, mommy to Carole=====Kelli D Kelmi_4@... Pictures: http://photos./Kelmi_4__________________________________________________

[Guest guest]

Kelli,

What a shame! I have asked it once and I will ask it again.......

Where do these people get their license's to practice? I thought they had to go to medical school? It is too bad that you had to pay for such a dissapointing appointment. It is too bad they do not have a money back gaurantee!

Anne

Mom of Livia

Canada

[Guest guest]

Yikes Kelli, your day can be summed up in one word: craptacular!

Sorry to hear that your dr. was such an idiot to you, and to talk

about you like that...what a horse's backside. I sure do hope that

you see great results with your band so you don't have to go through

the hassle again. Good luck to Em in the baby contest!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> This has been a horror story for me. We kept our

> appointment at the Neuro specialist not to far from

> where I live. If any of you need to see one, make

> sure they know something about Plagiocephaly or babies

> for that matter.

>

> He listened to me. When asked if he knew about the

> DOC band or banding babies, he was like HUU? He

> leaned back into his chair held up the CT's and read

> them thru the light above... (warning, warning). He

> didn't even ask questions about if she's doing this,

> or that... his question is " well, how is she doing

> developmently? " So I was sure how to respond, so I

> started listing the things she's does, like standing,

> yabbling, ect... he's like huuuhhh. I don't think he

> had a clue everyone. He asked me, how she got the

> plagiocephaly, ah duuuu, only two ways to get it. Why

> not ask if it's inuterio or sleeping on her back. He

> didn't even ask me if she did that!!!

>

> So, he says, we'll, what do you think about doing this

> again... I'm like, What??? He says, the CAT scan,

> and I said, well, expensive!!! So he said he wanted a

> radiologist to read the scan and for me to leave with

> him. I'm like, well what about the moulding, should

> we have CT send it off to make her helmet? He said,

> sure, sounds like a good course of action.

>

> Then, I'm waiting by the window on the way out, to get

> a card so I can call him next week, and here him

> saying behind a wall in the office, that girlfriend is

> really hard to deal with. Well, duuu, I friggin knew

> more than him.

>

> So I've thought about it, and talked with CT. WE're

> going to band and if nothing comes out in a

> month, which both CT and I think it should, then we'll

> fly anywhere that has the best possible Pediatric

> neuro.

>

> Sigh, what a waste of my time and money. (That little

> joke of an appt is sure to cost me $150 or

> more...sigh)

>

> Everyone, have a great weekend.

>

> I'm entering Em in one more baby contest before

> banding, because I have that little dress...lol.

>

> Kelli, mommy to Carole

>

> =====

> Kelli D Kelmi_4@y... Pictures:

http://photos./Kelmi_4

>

> __________________________________________________

>

[Guest guest]

Kelli,

If you haven't already paid for that appointment, I wouldn't. You didn't get your part of the bargain. (Just one lawyer's perspective). Can you complain to the AMA or something?

in Vancouver

>From: "Anne Baron"

>Reply-Plagiocephaly >

>Subject: Re: My Day >Date: Fri, 21 Sep 2001 22:38:08 -0500 > >Kelli, > >What a shame! I have asked it once and I will ask it again....... > >Where do these people get their license's to practice? I thought they had to go to medical school? It is too bad that you had to pay for such a dissapointing appointment. It is too bad they do not have a money back gaurantee! > > > >Anne >Mom of Livia >Canada Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Ahhhhh, Tess....as I read, the tears flowed from my

eyes. How wonderful that Vince's spirit was with you

all today and it sounds as if you were all brought

closer to one another and cried the tears of release

and healing. We all need to take a lesson from

this...it is never too late to talk to our loved ones

that are still with us and let the words bring deeper

love and understanding. Thank you for sharing your

day. Many happy, teary hugs, Iris.

--- tess_northwest@... wrote:

>

> Hi All...I am pooped. Woo eee. I just want to let

> you know how my day

> went. I got up early and baked " Butter Crescent "

> Rolls from the recipe

> site a recommends...AllRecipe.com? They turned

> out wonderfully, and

> if anyone would like the recipe, I'll be glad to

> share. Baking with RA,

> etc. is difficult, but I thoroughly enjoyed myself.

> This dough was

> WONDERFUL and easy to work with, though I did have

> to stop every few

> minutes to rest my joints & muscles. When my kids

> were little I baked

> most of our bread. After I'd knead the dough, I'd

> take the rounded

> dough in my hands and say something like, " My little

> Emmy is in BIG

> TROUBLE! " ...then I'd pretend to spank the dough

> ball...the kids would

> laugh so much and say, 'My turn! My turn!.'

> Precious memories.

>

> Last night my son called, very distrought, he lost

> his wallet with

> airplane ticket money and Christmas present money.

> He asked me to ask

> Grandpa, my Dad, if he could borrow enough for a

> round trip Greyhound

> from Reno to Portland. I wish I could have done it,

> but my Dad was ok

> with it, so Em & I went to the Bus Station in

> downtown Portland and got

> 's ticket for Will Call in Reno.

>

> A for my anniversary letter, I reminded my mom & dad

> what the day was,

> and told them I wanted to acknowledge & honor it.

> They both cried, my

> Dad couldn't say anything, but my Mom talked to me

> quite awhile,

> encouraging me to try to publish my writing as well

> as talking about

> Vince. My sister read hers and said nothing at all.

> My youngest

> daughter, Genevieve, who writes as well, began

> weeping as she read it

> then held me for a long time and sobbed. My oldest

> daughter, Christena,

> who has always tried to keep her emotions in check

> probably more than

> healthy, began to cry & cry as she read it. The

> part about 'falling

> into the arms of my 2 year old angel' is about her.

> I knew my kids

> would be loving and supportive, but I never realized

> or imagined how

> deeply they would be touched. It both ached my

> heart and yet blessed me

> tremendously. We talked about it, how they weren't

> 'bad' tears but just

> sad tears, and necessary tears. My children are the

> most wonderful

> blessing.

>

> We had a lovely dinner, and exchanged presents...my

> grandson was

> fighting a nasty cold so one minute was happy,

> zipping around, the next

> he was holding on to Mommy or Daddy and looking

> pretty puny. My

> grandaughter let out a LOUD happy scream at her

> presents, and was very

> proud to have her own gift to give everyone. The

> afternoon was good.

> I'm a tad 'down' tonight but I'm just tired after a

> busy, emotional,

> really full day.

>

> Em & I got a call from a local church who had been

> given our name and

> asked if they could bring some Christmas goodies. I

> himmed & hawed

> because Em & I don't go without, but we could use a

> blessing so I said

> ok. They asked what she might like and I told thm.

> They asked what I

> might like and told them GenTeal Eye Lubricant. Our

> low-income/disabled

> insurance has had to cut back on allowed Rx's, so

> they cover nothing for

> Sjogren's. The GenTeal is about $8. - $9. for one

> box. I try to use

> them judiciously but I do run out. They came over

> with some wrapped

> gifts, a ham, and all the fixins for a Christmas

> dinner. When I opened

> my gift it was 2 large size and 1 regular size of

> GenTeal. What a

> TREMENDOUS blessing.

>

> Thank you all for the love & support & encouragement

> you give me. I

> have grown so much because of you.

>

> Hope you have a peacful, pain-free, good sleep

> night.

>

> I love you...

>

> Tess

>

> PS ~ One thing Genevieve gave me was a pink/white

> staiined glass angel

> standing on a rock (referring to Jesus as 'our

> rock') and inscribed with

> the expression, " Life is fragile ~ Handle with

> prayer. " I feel so

> blessed.

>

>

>

>

[Guest guest]

Hi Tess,

You're resting up today, right? Sounds like you had a wonderful

time, and it was a time of healing for all. You really should do

something about publishing your writing. There is a lady at our

church who writes and publishes books, on line and makes a good

salary at it too. Something for you to look into?

Our weekend has been, um, interesting would be the word. TJ spent

the night Friday while & Duane went to see Lord of the Rings

and out to dinner. He was a perfect angel, and I had given him a

little Scooby Doo flashlight to take to bed with him, so when I

turned out the light, I told him to turn on his flashlight and I

guess he had so much fun with that he never made a peep, and slept

until 8 am yesterday. & Duane met us at a restaurant that has

a $5.95 breakfast buffet, then they came and picked up our old

freezer which we weren't using. They will stock it up with TV

dinners and stuff, and our church is going to fix meals for the kids

starting next week. I spent the rest of the day cleaning house,

doing laundry, and some last-minute errands. Boy did I know it last

night, too. Everything hurt. But I kept kinda quiet about it, as

Ron is in the midst of a lousy head/chest cold and I figured it was

his turn to be puny.

Got a call about 9:30 last night from : " how do you get a rock

out of a kid's ear? " I made a couple of suggestions, trying warm

oil, etc., but they ended up taking him to the ER, where they worked

for over an hour to get it out. She called at 11:30 and said that TJ

will NEVER EVER put anything in his ear, nose or whatever again. He

was a very unhappy little boy last night. I told her to save the

rock--it is about a $350 rock now.

Right now Ron is baking sugar cookies (his mother's recipe) for our

dinner Tuesday. I have to go buy some groceries for the various

dinners Tues, Wed, and Thurs, and another skein of yarn. I started

crocheting a scarf for Duane's sister Pam, and it is a slow, painful

process but I'm determined to finish it. It's not made easier by the

14-year old kitten who keeps batting at the yarn.

Well, you go rest up now and save your energy for the next few days.

Immediately after Wednesday I am going back on salads and yogurt. I

have been on a cookie binge this week, don;t know why as I haven't

craved sweets in months but all of a sudden it's all I want. I quit

taking my Prempro, so maybe my hormones are rebelling. Take care,

dear sweet Tess, and here's a hug for you and yours

(((((((Tess))))))))

Love,

Judi

[Guest guest]

A wonderful day, Tess! Thank you for giving us a glimpse of what

transpired. You must be relieved and, probably, wiped out. I bet it

feels good though.

I'm happy that you had the courage to do what you did and that the

outcome was so positive.

[ ] My Day

>

> Hi All...I am pooped. Woo eee. I just want to let you know how my

day

> went. I got up early and baked " Butter Crescent " Rolls from the

recipe

> site a recommends...AllRecipe.com? They turned out wonderfully,

and

> if anyone would like the recipe, I'll be glad to share. Baking with

RA,

> etc. is difficult, but I thoroughly enjoyed myself. This dough was

> WONDERFUL and easy to work with, though I did have to stop every few

> minutes to rest my joints & muscles. When my kids were little I baked

> most of our bread. After I'd knead the dough, I'd take the rounded

> dough in my hands and say something like, " My little Emmy is in BIG

> TROUBLE! " ...then I'd pretend to spank the dough ball...the kids would

> laugh so much and say, 'My turn! My turn!.' Precious memories.

>

> Last night my son called, very distrought, he lost his wallet with

> airplane ticket money and Christmas present money. He asked me to ask

> Grandpa, my Dad, if he could borrow enough for a round trip Greyhound

> from Reno to Portland. I wish I could have done it, but my Dad was ok

> with it, so Em & I went to the Bus Station in downtown Portland and

got

> 's ticket for Will Call in Reno.

>

> A for my anniversary letter, I reminded my mom & dad what the day was,

> and told them I wanted to acknowledge & honor it. They both cried, my

> Dad couldn't say anything, but my Mom talked to me quite awhile,

> encouraging me to try to publish my writing as well as talking about

> Vince. My sister read hers and said nothing at all. My youngest

> daughter, Genevieve, who writes as well, began weeping as she read it

> then held me for a long time and sobbed. My oldest daughter,

Christena,

> who has always tried to keep her emotions in check probably more than

> healthy, began to cry & cry as she read it. The part about 'falling

> into the arms of my 2 year old angel' is about her. I knew my kids

> would be loving and supportive, but I never realized or imagined how

> deeply they would be touched. It both ached my heart and yet blessed

me

> tremendously. We talked about it, how they weren't 'bad' tears but

just

> sad tears, and necessary tears. My children are the most wonderful

> blessing.

>

> We had a lovely dinner, and exchanged presents...my grandson was

> fighting a nasty cold so one minute was happy, zipping around, the

next

> he was holding on to Mommy or Daddy and looking pretty puny. My

> grandaughter let out a LOUD happy scream at her presents, and was very

> proud to have her own gift to give everyone. The afternoon was good.

> I'm a tad 'down' tonight but I'm just tired after a busy, emotional,

> really full day.

>

> Em & I got a call from a local church who had been given our name and

> asked if they could bring some Christmas goodies. I himmed & hawed

> because Em & I don't go without, but we could use a blessing so I said

> ok. They asked what she might like and I told thm. They asked what I

> might like and told them GenTeal Eye Lubricant. Our

low-income/disabled

> insurance has had to cut back on allowed Rx's, so they cover nothing

for

> Sjogren's. The GenTeal is about $8. - $9. for one box. I try to use

> them judiciously but I do run out. They came over with some wrapped

> gifts, a ham, and all the fixins for a Christmas dinner. When I

opened

> my gift it was 2 large size and 1 regular size of GenTeal. What a

> TREMENDOUS blessing.

>

> Thank you all for the love & support & encouragement you give me. I

> have grown so much because of you.

>

> Hope you have a peacful, pain-free, good sleep night.

>

> I love you...

>

> Tess

>

> PS ~ One thing Genevieve gave me was a pink/white staiined glass angel

> standing on a rock (referring to Jesus as 'our rock') and inscribed

with

> the expression, " Life is fragile ~ Handle with prayer. " I feel so

> blessed.

[Guest guest]

Hi ,

I'm so sorry to hear about your accident, and I hope your neck feels better

soon. Some days just aren't worth getting out of bed for.

Love and hugs,

Carol

[ ] My day

Hi everyone,

I have had quite a day today, right now I can't sleep. I went to do some

errands after work today and got rear ended! Not what I needed! The driver

behind me was talking to her passenger and not paying attention to me (I was

turning into the parking lot of my bank). My car has a cracked back

bumper - her car looks worse than mine. I'm not hurt, except for a sore

neck. I tried icing it and it didn't help. Later I used heat and that

helped more. With my week at work and this today, I just am not able to

sleep. I took some pain pills to help with my neck so hopefully I won't be

too stiff and sore when I go to work. Now the joy of getting my car fixed -

at least her insurance will pay for it all. Hopefully the rest of this week

will go better.

in MN

[Guest guest]

linda 9i am so sorry to hear of your accident. i hope you feel better soon,

kathy in il

[Guest guest]

,

I'm sorry you too are suffering from the inattentiveness of a driver.

Don't make the mistake I did and wait to long to get checked out if the

pain lingers. We are not like healthy people and may need some extra

help recouperating from what we think are just minor problems. We are

so used to hurting that we ignore pain more than someone that is

healthy. If your neck is still hurting, you really should get checked

just in case. I was given muscle relaxers which helped a bit. PT also

is helping and may be an option if the pain doesn't go away soon. Hope

you feel better soon.

a

[ ] My day

> <span><p><span><p>

>

>

> <tt>

> Hi everyone,

>

> I have had quite a day today, right now I can't sleep. I went to

> do some errands after work today and got rear ended! Not what I

> needed! The driver behind me was talking to her passenger and not

> paying attention to me (I was turning into the parking lot of my

> bank). My car has a cracked back bumper - her car looks worse

> than mine. I'm not hurt, except for a sore neck. I tried icing

> it and it didn't help. Later I used heat and that helped more.

> With my week at work and this today, I just am not able to sleep.

> I took some pain pills to help with my neck so hopefully I won't

> be too stiff and sore when I go to work. Now the joy of getting

> my car fixed - at least her insurance will pay for it all.

> Hopefully the rest of this week will go better.

>

>

>

> in MN

>

>

>

>

[Guest guest]

Really sorry to hear about your accident, ! Please go and see a

physician about the pain in your neck - the sooner the better.

[ ] My day

> Hi everyone,

> I have had quite a day today, right now I can't sleep. I went to do

some errands after work today and got rear ended! Not what I needed!

The driver behind me was talking to her passenger and not paying

attention to me (I was turning into the parking lot of my bank). My car

has a cracked back bumper - her car looks worse than mine. I'm not

hurt, except for a sore neck. I tried icing it and it didn't help.

Later I used heat and that helped more. With my week at work and this

today, I just am not able to sleep. I took some pain pills to help with

my neck so hopefully I won't be too stiff and sore when I go to work.

Now the joy of getting my car fixed - at least her insurance will pay

for it all. Hopefully the rest of this week will go better.

>

> in MN

[Guest guest]

Hi ,

Sounds like a bad day to me. Take from and expert, it does get better. I

hope that your neck feels better soon. You might want to see a dr. if it

doesn't. Whiplash can be very troublesome if you let it go too long. I am

glad that you weren't seriously injured. That's the most important thing.

Love and Hugs

Stacey

[Guest guest]

All suffering is relative. I wonder if a man who has lost his ability to walk envies the man who lost his hearing; saying “At least you can still walk.” I have found myself feeling this way about my life with my autistic son. When he was first diagnosed I went to a support group meeting for parents of children with various disabilities and medical conditions that I cannot pronounce or remember. What I do remember is feeling immense guilt as the circle of parents introduced themselves and described -with drawn faces- the brain shunts and feeding tubes; quoting statistics about the prevalence of their child’s rare disorder. My son is perfectly healthy. He is a hearty, strong boy. He has no life threatening condition. Yet, wrapped deep inside my guilt was envy. I thought; “At least your child knows that you exist; they say ‘I love you.’

Suffering is minute-by-minute. It shows you what is possible; in those fleeting moments when your child looks out the window and says “Looks like rain.” You run through a list in your mind, trying to determine if you have just heard a spontaneous remark or if he is repeating something he has heard before.

Suffering is despising people who load you up with platitudes about being chosen to parent an autistic child. I didn’t sign up for this. I was drafted! I’m not patient. I require eight hours of sleep. I have no faith in God. I avoid confrontation. Is this a test? I’m failing miserably. Alienation by my own choice; I don’t know these people anymore. How did I ever know them? So shallow, such trivial lives! Then the waves of envy, guilt, and hatred come. I wish I had the luxury of living a trivial life.

Suffering is laughing when life comes at you with both barrels because laughter is all there is. Autism is a delicate walk through a maze of tripwires daily. The cruel uncertainty of the day faces you every morning.

“ I must remember that they have set up carnival rides in the K-Mart parking lot; I have to take a different route for the next few days. He caught sight of it yesterday. I turn right instead of left to avoid the carnival confrontation. He knows! Turn right- melt down! This will make him have a bad day at school today. I have to send him to school today, I have errands I have to run. After fifteen minutes he still screams, kicking and clawing, spitting and crying. Giving in will prove to be a problem tomorrow and the next day until the carnival is gone. Should I give in? He has to learn that he cannot have what he wants all the time.” We turn around, I spend my phone bill money to buy cotton candy, a Sponge Bob balloon, and tickets for three rides. He refuses to ride any rides, but he likes to watch the spinning teacups. He stands watching them spin, holding his balloon. He glances skyward and lets go of the balloon watching it until it disappears. He grabs my hand, sticky with half eaten cotton candy and says “ , you have to go with Beck.” Which means “I love you and I want to be with you, mom”

If this is suffering, I’ll live it every day for the rest of my life. All suffering is relative and I envy no one today.

rmaher1969@...

EarthLink Revolves Around You.

[Guest guest]

hello vicki, i'm glad ur doing well. isn't AWESOME how just wAtching from a

window u can feel soo much.

i to sit everyday at the table just looking out the window watching the

birds,squirrels,dogs & cats..

my nephew loves to go outside & look at the birds, he loves them.....

about sitting for long periods of time, i too get STIFF & it's hard to get back

up..i wish u luck & hope u feel good.

god bless,melyndagamez 10/20/08 3:50p.m.cdt

[ ] My day

As I sat here this morning, watching the bunnies and squirrels playing outside

my window, my dogs running around just like my children did when they were

little, Listening to sounds of Fall, tractors out and about, the smells of

freshly harvested fields, and leaves turning colors. A sense of peace washed

over my body. Even the sick feeling from this mornings chemo took longer to set

in.  I wish I could have sat like that all day.

But of course sitting for extended periods is one of my triggers for a flare up

and the sick stomach from chemo is inevitable every Monday and Tuesday. I praise

God daily for those little things we all still have in our lives though. Those

are the moments that keep me going from day to day.

I am going to go lie down now and rest so I can maybe feel well enough to cook

and visit with my husband some tonite.

Vicki

Iowa

[Guest guest]

(((Vicki)))

I am very grateful for everything in my life. Being ill all the time,

does cause me depression, but I'm still able to be with my family and

friends, and that is very important. Waking up every morning, and able

to hear litte things are heavenly.

I hope you feel better soon. You get plenty of rest, and know your in

my prayers. I'm so very sorry for all the pain you are going through.

If you ever need a shoulder to lean on, you can email me anytime.

Tender hugs, Tawny

>

> As I sat here this morning, watching the bunnies and squirrels playing

outside my window, my dogs running around just like my children did when

they were little, Listening to sounds of Fall, tractors out and about,

the smells of freshly harvested fields, and leaves turning colors. A

sense of peace washed over my body. Even the sick feeling from this

mornings chemo took longer to set in. I wish I could have sat like that

all day.

>

> But of course sitting for extended periods is one of my triggers for a

flare up and the sick stomach from chemo is inevitable every Monday and

Tuesday. I praise God daily for those little things we all still have in

our lives though. Those are the moments that keep me going from day to

day.

>

> I am going to go lie down now and rest so I can maybe feel well enough

to cook and visit with my husband some tonite.

>

> Vicki

> Iowa

>

>

>

>

[Guest guest]

Vicki,

That was a beautiful picture that you painted with words. When I can

sit and enjoy animals like that, I feel like they are visitors, sent

just for my pleasure.

Hope you have a good supper and visit with your hubby.

Shirley

>

> As I sat here this morning, watching the bunnies and squirrels

playing outside my window, my dogs running around just like my

children did when they were little, Listening to sounds of Fall,

tractors out and about, the smells of freshly harvested fields, and

leaves turning colors. A sense of peace washed over my body. Even

the sick feeling from this mornings chemo took longer to set in. I

wish I could have sat like that all day.

>

> But of course sitting for extended periods is one of my triggers

for a flare up and the sick stomach from chemo is inevitable every

Monday and Tuesday. I praise God daily for those little things we

all still have in our lives though. Those are the moments that keep

me going from day to day.

>

> I am going to go lie down now and rest so I can maybe feel well

enough to cook and visit with my husband some tonite.

>

> Vicki

> Iowa

>

>

>

>

[Guest guest]

Hi Vickie: Such a wonderful scene for you to see this morning. I just

love things like that.

I hope you will be feeling better soon, and wishing you better days

ahead. May God Bless you in all ways. I know it is hard to sit, then

twice as hard to get up. Wish it wasn't so.

>

> As I sat here this morning, watching the bunnies and squirrels playing

outside my window, my dogs running around just like my children did when

they were little, Listening to sounds of Fall, tractors out and about,

the smells of freshly harvested fields, and leaves turning colors. A

sense of peace washed over my body. Even the sick feeling from this

mornings chemo took longer to set in. I wish I could have sat like that

all day.

>

> But of course sitting for extended periods is one of my triggers for a

flare up and the sick stomach from chemo is inevitable every Monday and

Tuesday. I praise God daily for those little things we all still have in

our lives though. Those are the moments that keep me going from day to

day.

>

> I am going to go lie down now and rest so I can maybe feel well enough

to cook and visit with my husband some tonite.

>

> Vicki

> Iowa

>

>

>

>