Re: feeling helpless

[Guest guest]

Please know that I know exactly how your sister feels and I understand how

you can feel helpless. When was first diagnosed a mother of a boy I had

grown up with called me. He had cf but I never actually knew the name of it.

I will never forget that she tried to talk to me and I kind of shut her out.

We stayed on the phone for hours that night. My husband and I had come home

from the hospital to spend Christmas Eve with our other two children and I

was sooooo tired. At the time I did not realize how tired I was. It was like

living in a tornado. Everything was spinning out of control. There is so much

to take in at one time when you find out your child has cf it is overwhelming

but you don't realize it. At least, that is what I feel like happened to me.

But, it has taken me years to realize that. No one could tell me that at

the time. I remember that lady telling me how confused I must be. I thought

she was crazy. Now I realize she was totally right.

Have patience with your sister. She really is not losing it, probably. You

can try to suggest things like you mentioned, but if she is anything like I

was she probably won't listen. It took me at least a year to figure out that I

needed other people to help me. She may be different, but she sounds like she

is going through almost the same things I went through.

There was a lady who our pediatrician had given my name and phone number to

when her 3 month old little girl was diagnosed. Since we lived in a small town

it was rare to have 2 cfers in such a short period of time. was

about 2 years old at the time. I remember talking to her just like my friends

mom

tried to talk to me. She listened politely to everything I had to say, but I

could see she was feeling like I had when my friends mom tried to talk to me.

She would call every so often to get my opinion and I finally realized that

the main thing I could do for her was listen. Yes there is a lot to know

about cf, but it is so much that sometimes it is hard to absorb it all.

Let your sister come to terms with her childs illness at her own pace. She

will come around. Be there for her, offer advice. Remember that she probably

is confused and trying to deal with this the best way she can. She will

listen one day but it probably will take a long time. I don't know how else to

explain it. To me it was really like the whole world kept going but my life

stopped for about a year. And when I finally started being able to talk and

listen to advice I didn't realize what had happened for a long time.

Ok, I'm gonna shut up now. I tend to ramble, as you will notice. Thanks for

listening. Listen to your sister. Try talking to her without telling her

what you think. She will eventually get to the point where she will be able to

handle the situation. I will keep you and your family in my thoughts and

prayers.

Thanks again for listening. I hope I have helped you understand a little of

what she probably is feeling. If she would like, I would be more than happy

to talk to her. Let me know if I can help. I'll be glad to send my phone

number if she wants. When she is ready, let her know there are people here on

this site that will be more than happy to listen and talk to her. She is not

alone in what she is going through. We have all been there. It just doesn't

seem like it when you are going through it.

Sue Pettit

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and

other

wonderful folks of course) at UAB Children's Hospital

[Guest guest]

The diagnosis is new and it can take a long time to adjust emotionally and

logistically to work out a 'new normal' for the family and to get the

support network (car pooling, etc) setup.It is natural for treatments to

feel overwhelming at the beginning.

In-person and internet support groups can be helpful but they also throw CF

in your face on a constant basis and that can take its emotional toll as

well. Your sister may not feel ready to join. At some point, you can let her

know that she can sign up and NOT receive mail ... just post questions if

she has any and ask for private replies.

My inclination would be to let Thanksgiving Day be as normal as possible and

not get into a discussion of suggestions. There will be treatments to fit in

so it would be most helpful if you let your sister tend to those and not

expect her to contribute to the day's chores in other ways (e.g. washing

dishes) unless she offers and seems to want to do so. You can be helpful by

helping to look after and entertain the other children.

It can be helpful, too, if you or other family members let your sister know

that you/they are willing to learn how to PROPERLY do the treatments or

administer meds so that your sister could have a break at future family

gatherings. For example, when it is treatment time, say, " Can you guide me

through doing it so I'll eventually know how? " Pay particular attention to

hygenics, hand washing, etc., which many of us are freakish about (for good

reason). If she doesn't want you to do it, don't be offended or pushy, just

let her know that the offer is still good any time in the future.

Even from 90+ miles away, weekly phone calls to ask how ALL of the children

are doing may be appreciated, as long as they are not during treatment

times. Attention to ALL of the siblings with cards, occasional visits and

treats or taking them out some place can offer a helpful break.

These are just my thoughts. I hope you all have a wonderful Thanksgiving.

M

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

....

I don't really know what to do to help my sister. I think the stress is

really eating at her and my mother, who lives much closer than I do, says

she thinks my sister is " losing it " . She's not interested in support groups

at this point. I thought maybe one in person, rather than over the internet,

might be a better option for her because she already feels the time

constraints and egroups take a huge amount of time with the hundreds of

messages. However, she apparently doesn't want to do it. I'm hoping when I

see her at Thanksgiving I can subtly suggest things. Then again, maybe that

should be a day where no one talks about it and we just try to enjoy each

other. Let her do her thing (including 's treatments) and have a nice

family gathering.

....

[Guest guest]

Would she ever get on these lists..they are great .........Suggest maybe

she could offer her advise , experiences & suggestions. OR just be a lurker

& get on line when the mood hits her. It would be sooooo helpful for her

LOVE & HUGS< GrandmomBEV

feeling helpless

Hi, all

I am so far behind with messages that it's ridiculous. Unfortunately,

because of my own " stuff " it's sometimes hard to sit at the computer for any

length of time. So, please don't think me selfish when I write this email

and have barely responded to any of yours.

I don't really know what to do to help my sister. I think the stress is

really eating at her and my mother, who lives much closer than I do, says

she thinks my sister is " losing it " . She's not interested in support groups

at this point. I thought maybe one in person, rather than over the internet,

might be a better option for her because she already feels the time

constraints and egroups take a huge amount of time with the hundreds of

messages. However, she apparently doesn't want to do it. I'm hoping when I

see her at Thanksgiving I can subtly suggest things. Then again, maybe that

should be a day where no one talks about it and we just try to enjoy each

other. Let her do her thing (including 's treatments) and have a nice

family gathering.

My niece is doing as well as can be expected. She gets her TOBI and vest

every morning and night. Apparently, the TOBI takes about 40 minutes and the

vest about 30. Then, there's the pulmozyme and the enzymes and the

sterilizing and whatever else they do in their already busy days. I know you

all do all of this, too. Maybe, we're missing something as to how to get it

all done and still have a normal life. My nieces have lots of

extra-curricular activities that take lots of time. I'd hate for them to

give up activities that they love just so the one w/cf can get her

treatments done.

I think my niece will do ok. She's certainly getting good care and her

parents never miss a treatment. It's my sister that could use the TLC but

from 90+ miles away it's a bit hard. Any suggestions would be greatly

appreciated.

Love and good wishes,

Jill

[Guest guest]

I really feel for your sister. I know exactly what she is going

through. I was so depressed. It really hit me about a few months

after diagnosis. I knew I would never feed Zach without applesauce

and enzymes first. I knew I would never put him to bed without

chest therapy. I knew it was all so weird and if we did everything

just right he might live to be 30. It was just to much to bear.

Luckily, we knew people who knew people that had kids with cf. They

all said it was ok to call and we just talked to them for hours. It

really helped. Also, she may not be ready for this, but she (or you

might too) might want to get involved in Great Strides. It is a CFF

annual fundraiser. She could go to the walk and meet other parents

of cf kids without it being a support group environment. We have

met some great parents that way and it would help her so much to

have someone who would understand her insane schedule, her fears,

and tell her that they have been standing in her shoes.

I hope this helps.

Sara

> Hi, all

>

> I am so far behind with messages that it's ridiculous.

Unfortunately, because of my own " stuff " it's sometimes hard to sit

at the computer for any length of time. So, please don't think me

selfish when I write this email and have barely responded to any of

yours.

>

> I don't really know what to do to help my sister. I think the

stress is really eating at her and my mother, who lives much closer

than I do, says she thinks my sister is " losing it " . She's not

interested in support groups at this point. I thought maybe one in

person, rather than over the internet, might be a better option for

her because she already feels the time constraints and egroups take

a huge amount of time with the hundreds of messages. However, she

apparently doesn't want to do it. I'm hoping when I see her at

Thanksgiving I can subtly suggest things. Then again, maybe that

should be a day where no one talks about it and we just try to enjoy

each other. Let her do her thing (including 's treatments) and

have a nice family gathering.

>

> My niece is doing as well as can be expected. She gets her TOBI

and vest every morning and night. Apparently, the TOBI takes about

40 minutes and the vest about 30. Then, there's the pulmozyme and

the enzymes and the sterilizing and whatever else they do in their

already busy days. I know you all do all of this, too. Maybe, we're

missing something as to how to get it all done and still have a

normal life. My nieces have lots of extra-curricular activities that

take lots of time. I'd hate for them to give up activities that they

love just so the one w/cf can get her treatments done.

>

> I think my niece will do ok. She's certainly getting good care and

her parents never miss a treatment. It's my sister that could use

the TLC but from 90+ miles away it's a bit hard. Any suggestions

would be greatly appreciated.

>

> Love and good wishes,

> Jill

>

>

>

[Guest guest]

My grand daughter (Abby) has cf. She is 23 months old. My daughter

doesn't read this site or other cf related sites. I don't think that

she finds the same comfort in it that I do. I think that she tries

not to think about cf every day. Everyone copes differently.

If you don't mention cf on Thanksgiving, will she think that you

don't care or that you are tired of hearing about it? It's hard to

know what to do.

Gale

> Hi, all

>

> I am so far behind with messages that it's ridiculous.

Unfortunately, because of my own " stuff " it's sometimes hard to sit

at the computer for any length of time. So, please don't think me

selfish when I write this email and have barely responded to any of

yours.

>

> I don't really know what to do to help my sister. I think the

stress is really eating at her and my mother, who lives much closer

than I do, says she thinks my sister is " losing it " . She's not

interested in support groups at this point. I thought maybe one in

person, rather than over the internet, might be a better option for

her because she already feels the time constraints and egroups take a

huge amount of time with the hundreds of messages. However, she

apparently doesn't want to do it. I'm hoping when I see her at

Thanksgiving I can subtly suggest things. Then again, maybe that

should be a day where no one talks about it and we just try to enjoy

each other. Let her do her thing (including 's treatments) and

have a nice family gathering.

>

> My niece is doing as well as can be expected. She gets her TOBI and

vest every morning and night. Apparently, the TOBI takes about 40

minutes and the vest about 30. Then, there's the pulmozyme and the

enzymes and the sterilizing and whatever else they do in their

already busy days. I know you all do all of this, too. Maybe, we're

missing something as to how to get it all done and still have a

normal life. My nieces have lots of extra-curricular activities that

take lots of time. I'd hate for them to give up activities that they

love just so the one w/cf can get her treatments done.

>

> I think my niece will do ok. She's certainly getting good care and

her parents never miss a treatment. It's my sister that could use the

TLC but from 90+ miles away it's a bit hard. Any suggestions would be

greatly appreciated.

>

> Love and good wishes,

> Jill

>

>

>

[Guest guest]

Hi Jill,

Your sister has to grieve, we all had to. I used to cry at all

hours, I still do, not as much, but I get blue every once in a

while. We get used to the rut, too. She will learn to juggle all

the tasks that are coming her way. But, right now, there is nothing

you can do, but listen to her and say nothing just listen. A good

ear is worth more than anything to her right now.

Love to you,

> Hi, all

>

> I am so far behind with messages that it's ridiculous.

Unfortunately, because of my own " stuff " it's sometimes hard to sit

at the computer for any length of time. So, please don't think me

selfish when I write this email and have barely responded to any of

yours.

>

> I don't really know what to do to help my sister. I think the

stress is really eating at her and my mother, who lives much closer

than I do, says she thinks my sister is " losing it " . She's not

interested in support groups at this point. I thought maybe one in

person, rather than over the internet, might be a better option for

her because she already feels the time constraints and egroups take a

huge amount of time with the hundreds of messages. However, she

apparently doesn't want to do it. I'm hoping when I see her at

Thanksgiving I can subtly suggest things. Then again, maybe that

should be a day where no one talks about it and we just try to enjoy

each other. Let her do her thing (including 's treatments) and

have a nice family gathering.

>

> My niece is doing as well as can be expected. She gets her TOBI and

vest every morning and night. Apparently, the TOBI takes about 40

minutes and the vest about 30. Then, there's the pulmozyme and the

enzymes and the sterilizing and whatever else they do in their

already busy days. I know you all do all of this, too. Maybe, we're

missing something as to how to get it all done and still have a

normal life. My nieces have lots of extra-curricular activities that

take lots of time. I'd hate for them to give up activities that they

love just so the one w/cf can get her treatments done.

>

> I think my niece will do ok. She's certainly getting good care and

her parents never miss a treatment. It's my sister that could use the

TLC but from 90+ miles away it's a bit hard. Any suggestions would be

greatly appreciated.

>

> Love and good wishes,

> Jill

>

>

>

[Guest guest]

Jill,

I have never been a person who sought the help of a support group.

Until one day I became a lurker. I realized that there were people

out there who knew how I was feeling. Then, when I stumbled onto

this group, I did not feel so alone. I never intended to use this

board for " support " . I viewed it more as a place for information.

What I could learn from other peoples experiences. After about three

days, I began to feel like the people here really do care(sniff).

Your sister needs time to adjust, to soak in what has happened.If

she feels like she is not a " support group " kind of person, then

share with her the things you learn from the list! I think you are a

wonderful aunt to be as involved as you are! Perhaps one day your

sister will realize that she is not alone.

Much luck to you,

e, a woman who truly appreciates everyone here!

[Guest guest]

Of course your sis needs the tlc. If your family has the funds consider doing

something for her for Christmas that would help her get through this time of

struggle and learning. You could perhaps offer her the funds to have some one

come to help clean house once a week.

I would also encourage you just enjoy the holidays with your family. She has to

reach the point of wanting help, herself. She also needs you just to be there

on that day to love, laugh, and silently comiserate with her if need be. You

know, all those things that sisters are good for.

Dawn mom of 4, 7 and under, the youngest wcf