Re: not in control and little out of control today

[Guest guest]

Jodi,

I think that hardest part for me in dealing with my daughter having RSS

is that not once have ever felt " in control " . It seems to be 'Lets wait and

see' maybe this will work.' No definites no guarantees. You HAVE done right

by Max, however it must be very frustrating and sad to think Max will not

reach his goal after all you have been through. But its not over yet and the

fact is we are not in control and quite frankly it pisses me off, today, that

we are not in control.

Sorry, you probably needed to hear from someone who is glad to be in

Holland but today I am not. I was up most of the night worrying (what appears

to be for nothing today) for my daughter and I am very tired and I want to be

in Italy. I weep for my daughter because it will be a long time before life

is " simple " for her. Jodi I apologize to you and all for my out of control

ramblings. Lets try to take it one day at a time. Peace

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Hi Jodi,

As you may have read was unexplainably losing hair yesterday like

a dog shedding. When we brushed or even ran our hand through her hair we

would end up with a bunch of hair. All I kept thinking was HERE WE GO!!

doctors, blood work, test, probe, Hospital stays Etc. Etc.. WHAT B.S.

Actually their our many of nights as I can hear 's pump going and I

just get sad for her and us too!!

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

oh yeah Jodi,

I find just writing something helps even if the words are not right yet.

Even if you end up not sending it helps to formulate thoughts and feelings.

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Mark - i think we all feel a little sad for our kids from day to day. Like

when you see other kids walk by and stare and stare....Our kids are small but

they are not deaf nor are they blind. I know tte sees this when kids

stare at her and she looks at me and shakes her head, this makes me feel

sad. When she doesnt want to get hooked up at night, I feel sad, when she

wants to know when she will get out of the BABY car seat, I feel sad. When

she physically can not do something that other kids are doing, I feel sad.

But with all this saddness she also brings me the most joy I could ask for.

She is our little angel and is loved by many friends and family members.

Life could be worse (some days I dont think so). But through all these trials

and tribulations (sp) there has to be a grand plan for these terrific kids.

Feeling sad sometimes is ok....don't beat yourself up feeling sad - things

usually turn out ok..

just my 2 cents

[Guest guest]

Hi again Jodi,

THANK YOU!! We do stay positive for and try not let our own

frustration be hers. Its a tight rope act sometimes but I think we pull it

off. My wife is incredible women and a great mom.We keep

involved and ask her to take 'ownership' of her pump and g button the way a

5 year old is able but adult worries are not to be kid worries.

In terms of 's hair. It was fine today,no problems.Just a quirk we

hope.

I decicided the reason I'm emotional today is PMS (Parental

Mentaloverload Syndrome)

Obviously there is something big that went down today!! My thoughts and

prayers are with you.

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

,

Thanks your 2cents is worth a million. I do feel blessed to have ,

I think today was more of an overtired kind of day and was emotionall and

physically exhausted.I think you hit the nail on the head. I know there is

worse out there but today I just wanted my little girl to have a " simple " life.

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

AMEN Danna!!

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Thank you Kathleen!!

How is Abby feeling today?

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Mark, you may think that you did not help me today, but you most certainly

have. You put into words EXACTLY what I am feeling. Thank you so much. I

weep for my son and for myself and my family. Holland is a nice place, but

you know how this world is - everyone wants to be like everyone else and

that is Italy.

Unfortunately, my mood is not much better than yours right now. I better

quit while I am ahead. Just know that I am with you in this - and I'm sure

there are many more who just haven't spoken up just yet. That in itself

helps me get through it all.

If you don't mind my asking, what is up with ? Why were you awake so

much last night worrying? I have a lot to think about right now and am

considering posting something about it to the list. I just cannot put it

into words just yet.

Jodi

Re: not in control and little out of control today

> From: mdppdm@...

>

> Jodi,

>

> I think that hardest part for me in dealing with my daughter having

RSS

> is that not once have ever felt " in control " . It seems to be 'Lets wait

and

> see' maybe this will work.' No definites no guarantees. You HAVE done

right

> by Max, however it must be very frustrating and sad to think Max will not

> reach his goal after all you have been through. But its not over yet and

the

> fact is we are not in control and quite frankly it pisses me off, today,

that

> we are not in control.

> Sorry, you probably needed to hear from someone who is glad to be in

> Holland but today I am not. I was up most of the night worrying (what

appears

> to be for nothing today) for my daughter and I am very tired and I want to

be

> in Italy. I weep for my daughter because it will be a long time before

life

> is " simple " for her. Jodi I apologize to you and all for my out of control

> ramblings. Lets try to take it one day at a time. Peace

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

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>

[Guest guest]

Mark, I apologize for not remembering about 's hair! How could I

forget? I guess there are so many things to remember and compartmentalize

that it gets jumbled up. I certainly hope you know what is going on soon.

As for the pump sounds, I remember all too well what that sounds like. I

should be comforting knowing that your child is being taken care of, but it

is not. It is a constant reminder of the special needs your child has.

Even now, after being off the pump for almost a year, Max gets upset if he

sees the IV pole even near his room. We also have an old kangaroo pump that

I had to hide because the sight of it caused him to have nightmares.

And it is okay for you to be sad for yourselves. I think that is healthy -

as long as it doesn't carry over into too many parts of your lives. I know

that sadness all too well. I am sorry to say it doesn't get much better,

either. As Max gets older, the reasons for the sadness always have the same

base and that is RSS. But as my mother has always said to me, Max knows no

different. To him, this is his life. It is not as if he had something

different and then " came down with " RSS. In fact, when we first started

leaving him off the pump, he was a bit insecure with that. He had never

slept without that humming noise. I also think that we, the parents, feel

sorry for ourselves and our children, but our children do not feel that. As

long as we are supportive and honest and accepting, I think they are and

will be for themselves. But it's hard to keep all of that in your head when

you feel so emotional about something. And then with losing her

hair, it is just ANOTHER thing to deal with.

I understand, Mark. Sometimes I just have to take things one hour at a

time, not even a day at a time. I know I am rambling, but there is just so

much on my mind right now that it is helping me, too. I want to share my

day with all of you, but I don't have the words just yet. I will and then I

will post them.

Jodi

Re: not in control and little out of control today

> From: mdppdm@...

>

> Hi Jodi,

>

> As you may have read was unexplainably losing hair yesterday

like

> a dog shedding. When we brushed or even ran our hand through her hair we

> would end up with a bunch of hair. All I kept thinking was HERE WE GO!!

> doctors, blood work, test, probe, Hospital stays Etc. Etc.. WHAT B.S.

> Actually their our many of nights as I can hear 's pump going and I

> just get sad for her and us too!!

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

> Get what you deserve with NextCard Visa! ZERO! Rates as low as 0.0%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the credit

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

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>

>

[Guest guest]

Mark & Jodi,

Just want you to know that I'm thinking of you. You are both such wonderful

parents. Take it a day at a time, sometimes a breath at a time. We're all

here if you need to unload or whatever you need.

Kathleen [Mom to Abby--16 mos, 12 lbs. 10 oz, 26 1/4 in.- Close but not RSS

]

Re: not in control and little out of control today

>From: mdppdm@...

>

>Jodi,

>

> I think that hardest part for me in dealing with my daughter having RSS

>is that not once have ever felt " in control " . It seems to be 'Lets wait and

>see' maybe this will work.' No definites no guarantees. You HAVE done right

>by Max, however it must be very frustrating and sad to think Max will not

>reach his goal after all you have been through. But its not over yet and

the

>fact is we are not in control and quite frankly it pisses me off, today,

that

>we are not in control.

> Sorry, you probably needed to hear from someone who is glad to be in

>Holland but today I am not. I was up most of the night worrying (what

appears

>to be for nothing today) for my daughter and I am very tired and I want to

be

>in Italy. I weep for my daughter because it will be a long time before life

>is " simple " for her. Jodi I apologize to you and all for my out of control

>ramblings. Lets try to take it one day at a time. Peace

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

>Get what you deserve with NextCard Visa! ZERO! Rates as low as

>0.0% Intro APR, online balance transfers, Rewards Points, no

>hidden fees, and much more! Get NextCard today and get the credit

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>

>

[Guest guest]

Thank you, Kathleen. I needed to hear that.

Jodi

[Guest guest]

Mark,

I know just what you mean about that pump sound....it can make me so sad

too. Another one of those things that makes me sad is seeing all the

Kindercal cans in the recycle bin each week. Isn't it strange how these

little things trigger so much emotion in us?!

Irene

[Guest guest]

Mark,

With all you're going through, you take the time to ask about Abby? You're

too much!

Abby's been great the past few days--playing a lot, jabbering a lot, no

fevers, no vomiting. We're testing her T-cells tomorrow and will biopsy her

rectal skin tags asap for Human Papaloma Virus. Her tests for ulcerative

colitis and Crohn's disease came back negative and we're still waiting on

her IGG subclass tests (imuno-deficiency). She still has a yeast infection

on her bottom but the other symptoms have subsided for now. Thanks for

asking.

Hope you can take some time for yourself. You always take care of everyone

else!

Kathleen [Mom to Abby--16 mos, 12 lbs. 10 oz, 26 1/4 in.- Close but not RSS

]

Re: not in control and little out of control today

>From: mdppdm@...

>

>Thank you Kathleen!!

>How is Abby feeling today?

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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[Guest guest]

Hi, Mark

I guess there are times when we all would like to have our old lives

back, but what would we be missing? I would have never found such a warm

and caring group of folks if it weren't all in the same boat. I can only

speak for myself but this group has given me such a feeling of camaraderie

that I feel like I've got back up in about any situation that arises with

or me for that matter.

Danna

Re: not in control and little out of control today

> From: mdppdm@...

>

> ,

> Thanks your 2cents is worth a million. I do feel blessed to have

,

> I think today was more of an overtired kind of day and was emotionall and

> physically exhausted.I think you hit the nail on the head. I know there is

> worse out there but today I just wanted my little girl to have a " simple "

life.

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

> credit you deserve! Apply now! Get your NextCard Visa at:

> http://click./1/913/5/_/229381/_/951356037/

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

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>

>

[Guest guest]

Cherl,

All things considered you were hardly long winded. If I were you I'd

still be typing.It sounds like you and your family have quite a tough journey

ahead of you. I'm truly sorry that your child is going through all this.It is

tough to watch the ones we love so much suffer in anyway.You will be in our

prayers.I wish there was more we could do! As someone said to me some days

its one breathe at a time.

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Mark,

I relate 100% of what you're going through. I'm having an emotional week

myself.

is not only looking RSS, but has severe scoliosis that we're following

closely and will eventually end up in a body cast for 6 months after surgery,

he's

having surgery on his 1 undescended teste in 2 weeks, more test being done by

urology on his 1 kidney, and to top everything off, we've recently learned that

he's severe to profoundly deaf. Someone mentioned in one of the emails that our

children aren't blind nor deaf, well mine is deaf. I'm at my breaking point and

don't know how much more I can handle. He just got outfitted with a fancy

hearing

system last week, but more than likely will need a Cochlear Implant to give him

the opportunity to hear. I thought RSS was bad enough, and it truly is, but

this

hearing stuff is really sending me over the edge.

Sorry to be so long winded, but I really needed to vent myself. Cheryl

mdppdm@... wrote:

> From: mdppdm@...

>

> ,

> Thanks your 2cents is worth a million. I do feel blessed to have ,

> I think today was more of an overtired kind of day and was emotionall and

> physically exhausted.I think you hit the nail on the head. I know there is

> worse out there but today I just wanted my little girl to have a " simple " life.

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

> credit you deserve! Apply now! Get your NextCard Visa at:

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

[Guest guest]

Cheryl,

One day at a time, one breath at a time if that's what you can take.

Remember a couple of months ago when you were panicked? This too, will be

okay. The surgery on his testicle will be fine. Its good that the

scoliosis can be treated and that will be okay too. The hearing I know is

hard on you but you've gotten him every advantage from the best program to

looking into the implants, to meeting other moms, etc. I know, when it

rains it pours but I also KNOW what a strong and wonderful mother you are

and you'll get through all of this, one thing at a time. Just separate it

out so it doesn't overwhelm you. Try not to think to far ahead for now, at

least until things feel more manageable.

And the uriological testing is just testing. Something I HAVE to tell

myself to do, is not wrap myself around anything until the test is back.

For example, with this HPV thing with Abby. I can't panic until the test is

back. If I did, I'd have gone nuts already with the hundreds of other scary

tests. Just tuck it away and deal with what you know you have to deal with

and leave the rest.

Please take some time for yourself too. Break down when you need to, get

enough rest and take care of yourself while you're busy taking care of

everyone else. I wish I could bring over some Ben & Jerry's and cry with

you. Let me know if I can help.

Kathleen

Re: not in control and little out of control today

>

>

>Mark,

>

>I relate 100% of what you're going through. I'm having an emotional week

myself.

> is not only looking RSS, but has severe scoliosis that we're

following

>closely and will eventually end up in a body cast for 6 months after

surgery, he's

>having surgery on his 1 undescended teste in 2 weeks, more test being done

by

>urology on his 1 kidney, and to top everything off, we've recently learned

that

>he's severe to profoundly deaf. Someone mentioned in one of the emails

that our

>children aren't blind nor deaf, well mine is deaf. I'm at my breaking

point and

>don't know how much more I can handle. He just got outfitted with a fancy

hearing

>system last week, but more than likely will need a Cochlear Implant to give

him

>the opportunity to hear. I thought RSS was bad enough, and it truly is,

but this

>hearing stuff is really sending me over the edge.

>

>Sorry to be so long winded, but I really needed to vent myself. Cheryl

>

>mdppdm@... wrote:

>

>> From: mdppdm@...

>>

>> ,

>> Thanks your 2cents is worth a million. I do feel blessed to have

,

>> I think today was more of an overtired kind of day and was emotionall and

>> physically exhausted.I think you hit the nail on the head. I know there

is

>> worse out there but today I just wanted my little girl to have a " simple "

life.

>>

>> Peace and Prayers

>> Mark dad to 4 ( 5 in April), G-tube

>>

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

>> Get what you deserve with NextCard Visa! Rates as low as 2.9%

>> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

>> no hidden fees, and much more! Get NextCard today and get the

>> credit you deserve! Apply now! Get your NextCard Visa at:

>> http://click./1/913/5/_/229381/_/951356037/

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

>

>

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[Guest guest]

Cheryl,

hug

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

I said one breath at a time. I am living proof of that. And, Cheryl, we

will all take it one breath at a time if it will help you deal with things.

It is indeed overwhelming. It is indeed infuriating. It is absolutely

unfair for any family to have to deal with what you have been dealt - and

for little , as well. But please know that we are all pulling for

you - and breathing along with you. Let's put on our Dutch shoes and travel

in Holland together. We will get you through it!

Jodi

Re: not in control and little out of control today

> From: mdppdm@...

>

> Cherl,

> All things considered you were hardly long winded. If I were you I'd

> still be typing.It sounds like you and your family have quite a tough

journey

> ahead of you. I'm truly sorry that your child is going through all this.It

is

> tough to watch the ones we love so much suffer in anyway.You will be in

our

> prayers.I wish there was more we could do! As someone said to me some

days

> its one breathe at a time.

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

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>

[Guest guest]

Thanks Mark for your kind words. I do really try to take it sometimes one

breath

at a time, but as everyone well knows, sometime you forget and just get caught

up

in things. I would really love to meet each and every one of you one day to

give

you all great big hugs! I know that's what I need now more than anything.

Thanks for listening. Cheryl

mdppdm@... wrote:

> From: mdppdm@...

>

> Cherl,

> All things considered you were hardly long winded. If I were you I'd

> still be typing.It sounds like you and your family have quite a tough journey

> ahead of you. I'm truly sorry that your child is going through all this.It is

> tough to watch the ones we love so much suffer in anyway.You will be in our

> prayers.I wish there was more we could do! As someone said to me some days

> its one breathe at a time.

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

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> as low as 0.0% Intro APR and no hidden fees.

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[Guest guest]

To all that are having a rough time at the moment.I thought that I would

share this with you.

Since Christians birth nearly 4 years ago we have really had a roller

coaster ride.I'm sure it's been simular to all of you-one minute it's all

going so well and the next your hit with something else.Between the ages of

2 and 3 it was really bad.One week we would see Christian was growing really

well on the GH[elation] and the following week we were told the drs wanted

to test him for epilepsy[dispair].Anyway I could go on for ever but I'm sure

you get the point.In the last year things have calmed down and we have 'only

' worried about development delays[oh and a couple of little things]but

although my love for christian has never been in question it was beginning

to be a case of' well what next'and if I'm really honest I didn't really

except him for who he was.Well we have had areally good month with

Christian,He has suddenly 'switched on' and is so much more grown up and

I'm sure this has helped but now I'll get to the point...

Last night I watched a programme about fertility and genetic engienering[?

sp]and I thought that if a Dr had said that they could take the RSS away

before he was born would I have agreed.Well it was even a shock to me that

my answer was that the Rss and the things that Christian has been through

have made him what he is and I think he is pretty wounderful just as he

is.So I Guess after 4 years I've finally excepted.

WHat I'm really trying to say[very long winded I admit]is that things do get

better,and there will be a time when you suddenly realise that you have

absolutly nothing to worry about!!!

I have aged about 10 years since Christian was born and worried and shed

more tears then with the other 3 children put together but he's worth it'

Anyway I've gone on for far to long.My best wishes for everyone

Joanne mum to Christian ,rss ,nearly 4,31.5 lbsand almost 98 cms

Re: not in control and little out of control today

> From: mdppdm@...

>

> Cheryl,

>

>

> hug

>

> Peace and Prayers

> Mark dad to 4 ( 5 in April), G-tube

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

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> http://click./1/913/5/_/229381/_/951517229/

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

>

>

>

[Guest guest]

My sentiments, exactly.

Jodi

[Guest guest]

AMEN!!!

[Guest guest]

Joanne,

How nicely put! - good " food for thought "

, Mom to Jes (23mos RSS?) - (4 1/2)