Guidelines for Family and Friends

[Guest guest]

we have some people that call and chit chat with her

at the hospital but for the most part no one ever

comes.

It gets that way doesn't it!! It gets old to them after a while, then they

seem to forget you. Makes you feel very sad and lonely. I know it does me. With

all this new stuff going on with Britt I feel so alone and afraid!

Janet, mom to Brittany CVID age 15

[Guest guest]

-

This is fabulous. I never knew how alone I was until I

started spending days on end in the hospital with

Gwynn by myself. I know my friends get tired of me

canceling plans because Gwynn is sick again and when

they call and I say we are getting ready to head to

the doc because she is not feeling well their tone of

voice seems to change. why? what's wrong now? in that

voice that almost sounds like....How can one child get

sick this often.

we have some people that call and chit chat with her

at the hospital but for the most part no one ever

comes. The only time we really had visitors was the

first admission and once when after I got angry with

my mother in law she brought my niece who was supposed

to have been getting together with my daughter to the

hospital.

When I call to see if anyone can come to the hospital

to watch Gwynn and the baby who stays with me at the

hospital as I am breast feeding, people say they will

see if they can but no one ever comes. By the third

day I really smell. I am really not sure what will

happen when I stop breast feeding and need to not

bring Aiden with me on her inpatient stays...can not

think of anyone that will keep him and if my husband

does not work we will not be able to pay the bills. We

are already behind so each missed day just adds on to

the financial stress.

my mother in law the other night said she would come

(we were just in the hospital) and then called back to

say she was going out to dinner with friends and did

not want to feel rushed so she couldn't come.

Funny how my mother in law spent the whole first week

after each of my sister in laws nieces babying her but

in 6 admissions has only come to the hospital twice

for Gwynn.

ok enough with the venting but I really feel better

letting it off my chest.

--- kristinsmith <kristinsmith@...> wrote:

> I'm sure there are many here that can relate to

> feeling lonely and isolated from family and friends

> during some part of your journey. We have friends

> who rarely call anymore and family members who

> prefer to not discuss our children's health issues.

> People who were very supportive early on have

> dropped out of the picture as months have turned

> into years of dealing with our chronic health

> issues. I suspect that people just don't know what

> to do or say at times. And admittedly, we sometimes

> don't always have the time to reach out.

>

> I've been thinking that I'd like to put together a

> list of helpful ideas that we can share with

> families and friends, either in person or just

> posted on our family website. It would probably be

> something very beneficial for families just

> beginning this journey.

>

> If anyone has anything to add, please just email me

> and I'll send back a completed list once it's

> compiled.

>

>

> Here are some ideas from a site for kids with

> cancer:

> http://www.acor.org/ped-onc/cfissues/dodont.html

>

> Some ideas of things to do for families:

>

> Clean their house for when they come home from the

> hospital.

> Get them a gift certificate for video rentals.

>

> Buy CDs or cassette tapes for the child undergoing

> chemotherapy. Perhaps even get them a Walkman or

> Discman if they do not have one. Or, an MP3 player.

>

> Puzzle books, reading books, and activity books,

> especially for the siblings. Many parents could use

> help with the other children.

>

> A night or day of babysitting.

>

> Take the parent a bag filled with things she thought

> they might need, such as note cards, nail care

> products, laundry detergent, magazines, hand lotion,

> an array of items. Just think to yourself, " If I

> couldn't be home for over a week, what would I

> need? " Then throw it in the bag.

>

> If it's possible to get there, come and sit with the

> parent in the hospital on those long days when he or

> she is scared and bored and exhausted all at the

> same time. Bring a favorite food or a new magazine,

> and bring lots of news and stories to make them feel

> less left out of normal life. Hang out with the

> child so Mom or Dad can get a shower and something

> to eat.

>

> If their treatment center is fairly far from home,

> phone calls (and gifts of those pre-paid phone cards

> so they can call out) can make them feel like

> they're still in touch with family and friends.

>

> Enlist people to send cards and silly, fun things to

> the child and any brothers or sisters. A little fun

> and excitement go a long way toward alleviating pain

> and fear.

>

> Find out what the child likes (some kids collect

> stickers, beanie baby toys, cool hats, pins, etc.)

> and help get a collection started if he or she

> doesn't have one already. It will provide something

> fun to focus on and then people will know what to

> send or bring when they don't know what else to do.

>

> Commit yourself to be the friend of one of the

> siblings, someone the child can call on when he or

> she needs to talk or is feeling left out. If the

> child has brothers or sisters, find someone whose

> special job it is to give each of them attention,

> time, treats. They're scared and they're left out

> and they need people to take them places and listen

> to them and make them feel important. Be that

> person!

>

> Find out if there are any special needs the family

> has, and try to coordinate a solution to their

> problem. Is there a child who is often home alone

> after school because one parent is at work and the

> other is at the hospital? Do they need help with

> transportation or a supply of meals on certain days

> when normal life is impossible because of clinic

> visits, diagnostic tests, etc.? Once you've

> identified an area of concern, work WITH the family

> to help them solve the problem. In particular, don't

> ever decide on your own to sponsor a large project

> like a fund-raiser or major house repair, etc.,

> without talking with the family first. As

> well-meaning as many of these efforts can be, they

> may not always be serving the family's most urgent

> needs. Any supportive undertaking needs to be done

> in a way that respects the family's wishes and

> honors their privacy.

>

> Be the " fun " friend who shows up at the hospital

> room or at home with bubbles, silly string, joke

> books, Marx Brothers videos, rub-on tattoos,

> whatever. Life is scary enough right now without

> having all the grown-ups walk in with long faces!

> It'll help Mom and Dad, too. (Author's note: One of

> our dearest friends showed up at the hospital with a

> roll of paper, painters' tape --the kind that

> doesn't leave sticky marks-- and a box or markers.

> She covered the walls with paper and each person who

> visited my son drew pictures for him, wrote jokes,

> left funny notes and signed their names. Of course,

> he wanted to draw, too! Distraction is the name of

> the game! )

>

> Messages from families:

>

> Don't take " no, we don't need any help " from a

> family as their final response...ask again. Don't

> say, " Well, call if you need something " - we

> probably won't call. We are not used to needing help

> from others and do not know (1) that we need it and

> (2) how to say yes. If you really mean it when you

> say you want to help, you must come up with your own

> ideas... such as " I'd like to mow your grass " or " I

> will babysit....(the younger sibling if any) this

> week-end " or " I will be snow-blowing your drive-way

> for the season. " or " Let me stay with you son

> overnight at the hospital so you can get some rest. "

> And if you make such an offer and we refuse, we may

> be refusing because we really don't need help like

> that at the moment, but please call back in a week

> or two and try again!

>

> I think what most folks forget is that this is SUCH

> a LONG term family problem. Meals and help the first

> few weeks are nice....but we're dealing with stuff

> that will last 1 to several years. It's easy to fade

> out of the picture. Emotional support is CRUCIAL for

> the family. Just make a point to call, once a week

> or every two weeks. Parents of CK's lose some of

> their former friends and get distanced from their

> relatives. You are very right about letting people

> help, for their sake and yours. It is a humbling

> experience, but it works out for the best for

> everyone.

>

> What to say to the parents?

> Please don't say: " I don't know how you handle it, I

> just couldn't do it! " What are we supposed to do,

> shrivel up and die because our child has cancer? We

> aren't " handling " it because we are superior people,

> we simply have no choice. We have to protect our

> children. In fact maybe we are not " handling " it at

> all, it may be that we are a total emotional mess,

> but we have to save our kids so in the haze of

> hospital rooms and surgeries and toxic drugs put in

> our children's veins we focus on the important facts

> that we have to know - like focussing on the

> taillights of the car in front of you as you drive

> through the fog. And we may have a smile on our face

> as we talk to you, but that doesn't mean we don't

> cry in the nights, it only means that we are trying

> to make you comfortable so that you will keep

> talking to us.

>

> I felt much more comfortable if people just dealt

> with it head on and acknowledged that something

> horrible had happened. I think it's the tongue-tied,

> awkward silence we hate, isn't it?

>

> Thanks!

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> This forum is open to parents and caregivers of

> children diagnosed with a Primary Immune Deficiency.

> Opinions or medical advice stated here are the sole

> responsibility of the poster and should not be taken

> as professional advice.

>

> To unsubscribe -unsubscribegroups (DOT)

> To search group archives go to:

> /messages

>

[Guest guest]

What is haapening with Britt's legs and the swelling and everything?

Thanks for asking . She has some swelling in her hands and legs and

knees but not too bad. She has a slight rash also right now. Her eyes are red

though. She had a awful migraine last night. We have an appt. with a rhuemy on

Monday. I think this is going to take some time to figure out.

I hate that part, it drives me crazy!

Janet, mom to Brittany CVID age 15

[Guest guest]

Very well said.

in Fl

-------------- Original message --------------

From: " kristinsmith " <kristinsmith@...>

I'm sure there are many here that can relate to feeling lonely and isolated from

family and friends during some part of your journey. We have friends who rarely

call anymore and family members who prefer to not discuss our children's health

issues. People who were very supportive early on have dropped out of the picture

as months have turned into years of dealing with our chronic health issues. I

suspect that people just don't know what to do or say at times. And admittedly,

we sometimes don't always have the time to reach out.

I've been thinking that I'd like to put together a list of helpful ideas that we

can share with families and friends, either in person or just posted on our

family website. It would probably be something very beneficial for families just

beginning this journey.

If anyone has anything to add, please just email me and I'll send back a

completed list once it's compiled.

Here are some ideas from a site for kids with cancer:

http://www.acor.org/ped-onc/cfissues/dodont.html

Some ideas of things to do for families:

Clean their house for when they come home from the hospital.

Get them a gift certificate for video rentals.

Buy CDs or cassette tapes for the child undergoing chemotherapy. Perhaps even

get them a Walkman or Discman if they do not have one. Or, an MP3 player.

Puzzle books, reading books, and activity books, especially for the siblings.

Many parents could use help with the other children.

A night or day of babysitting.

Take the parent a bag filled with things she thought they might need, such as

note cards, nail care products, laundry detergent, magazines, hand lotion, an

array of items. Just think to yourself, " If I couldn't be home for over a week,

what would I need? " Then throw it in the bag.

If it's possible to get there, come and sit with the parent in the hospital on

those long days when he or she is scared and bored and exhausted all at the same

time. Bring a favorite food or a new magazine, and bring lots of news and

stories to make them feel less left out of normal life. Hang out with the child

so Mom or Dad can get a shower and something to eat.

If their treatment center is fairly far from home, phone calls (and gifts of

those pre-paid phone cards so they can call out) can make them feel like they're

still in touch with family and friends.

Enlist people to send cards and silly, fun things to the child and any brothers

or sisters. A little fun and excitement go a long way toward alleviating pain

and fear.

Find out what the child likes (some kids collect stickers, beanie baby toys,

cool hats, pins, etc.) and help get a collection started if he or she doesn't

have one already. It will provide something fun to focus on and then people will

know what to send or bring when they don't know what else to do.

Commit yourself to be the friend of one of the siblings, someone the child can

call on when he or she needs to talk or is feeling left out. If the child has

brothers or sisters, find someone whose special job it is to give each of them

attention, time, treats. They're scared and they're left out and they need

people to take them places and listen to them and make them feel important. Be

that person!

Find out if there are any special needs the family has, and try to coordinate a

solution to their problem. Is there a child who is often home alone after school

because one parent is at work and the other is at the hospital? Do they need

help with transportation or a supply of meals on certain days when normal life

is impossible because of clinic visits, diagnostic tests, etc.? Once you've

identified an area of concern, work WITH the family to help them solve the

problem. In particular, don't ever decide on your own to sponsor a large project

like a fund-raiser or major house repair, etc., without talking with the family

first. As well-meaning as many of these efforts can be, they may not always be

serving the family's most urgent needs. Any supportive undertaking needs to be

done in a way that respects the family's wishes and honors their privacy.

Be the " fun " friend who shows up at the hospital room or at home with bubbles,

silly string, joke books, Marx Brothers videos, rub-on tattoos, whatever. Life

is scary enough right now without having all the grown-ups walk in with long

faces! It'll help Mom and Dad, too. (Author's note: One of our dearest friends

showed up at the hospital with a roll of paper, painters' tape --the kind that

doesn't leave sticky marks-- and a box or markers. She covered the walls with

paper and each person who visited my son drew pictures for him, wrote jokes,

left funny notes and signed their names. Of course, he wanted to draw, too!

Distraction is the name of the game! )

Messages from families:

Don't take " no, we don't need any help " from a family as their final

response...ask again. Don't say, " Well, call if you need something " - we

probably won't call. We are not used to needing help from others and do not know

(1) that we need it and (2) how to say yes. If you really mean it when you say

you want to help, you must come up with your own ideas... such as " I'd like to

mow your grass " or " I will babysit....(the younger sibling if any) this

week-end " or " I will be snow-blowing your drive-way for the season. " or " Let me

stay with you son overnight at the hospital so you can get some rest. " And if

you make such an offer and we refuse, we may be refusing because we really don't

need help like that at the moment, but please call back in a week or two and try

again!

I think what most folks forget is that this is SUCH a LONG term family problem.

Meals and help the first few weeks are nice....but we're dealing with stuff that

will last 1 to several years. It's easy to fade out of the picture. Emotional

support is CRUCIAL for the family. Just make a point to call, once a week or

every two weeks. Parents of CK's lose some of their former friends and get

distanced from their relatives. You are very right about letting people help,

for their sake and yours. It is a humbling experience, but it works out for the

best for everyone.

What to say to the parents?

Please don't say: " I don't know how you handle it, I just couldn't do it! " What

are we supposed to do, shrivel up and die because our child has cancer? We

aren't " handling " it because we are superior people, we simply have no choice.

We have to protect our children. In fact maybe we are not " handling " it at all,

it may be that we are a total emotional mess, but we have to save our kids so in

the haze of hospital rooms and surgeries and toxic drugs put in our children's

veins we focus on the important facts that we have to know - like focussing on

the taillights of the car in front of you as you drive through the fog. And we

may have a smile on our face as we talk to you, but that doesn't mean we don't

cry in the nights, it only means that we are trying to make you comfortable so

that you will keep talking to us.

I felt much more comfortable if people just dealt with it head on and

acknowledged that something horrible had happened. I think it's the tongue-tied,

awkward silence we hate, isn't it?

Thanks!

[Guest guest]

I will cross my fingers that you can get an answer sooner rather than

later. I know a family with 3 boys under 10 with CVID and they all have

significant rhuematoid arthritis symptoms. Could that be what it

is--with the rash and everything??

Thanks . WOW all three!! She should be on this list! I have know idea

about the rash part though. Do you get rashes with JRA?? Does anyone know?

Janet, mom to Brittany CVID age 15

[Guest guest]

What is haapening with Britt's legs and the swelling and everything?

Re: Guidelines for Family and Friends

we have some people that call and chit chat with her

at the hospital but for the most part no one ever

comes.

It gets that way doesn't it!! It gets old to them after a while,

then they

seem to forget you. Makes you feel very sad and lonely. I know

it does me. With

all this new stuff going on with Britt I feel so alone and

afraid!

Janet, mom to Brittany CVID age 15

[Guest guest]

With our kids, it so frustrating- one step forward, 2 steps back and

ALWAYS waiting for a doc to call back!!!!!!LOL!

I will cross my fingers that you can get an answer sooner rather than

later. I know a family with 3 boys under 10 with CVID and they all have

significant rhuematoid arthritis symptoms. Could that be what it

is--with the rash and everything??

Re: Guidelines for Family and Friends

What is haapening with Britt's legs and the swelling and

everything?

Thanks for asking . She has some swelling in her hands and

legs and

knees but not too bad. She has a slight rash also right now. Her

eyes are red

though. She had a awful migraine last night. We have an appt.

with a rhuemy on

Monday. I think this is going to take some time to figure out.

I hate that part, it drives me crazy!

Janet, mom to Brittany CVID age 15

[Guest guest]

,

I saw your post and my heart goes out to you that you do not have a better

support system...you sound like an awesome mom. You and yours are in my

prayers....meanwhile, keep venting and everyone here will be listening.

mom to CVIDer

sarah larson <mom2gwynn@...> wrote:

-

This is fabulous. I never knew how alone I was until I

started spending days on end in the hospital with

Gwynn by myself. I know my friends get tired of me

canceling plans because Gwynn is sick again and when

they call and I say we are getting ready to head to

the doc because she is not feeling well their tone of

voice seems to change. why? what's wrong now? in that

voice that almost sounds like....How can one child get

sick this often.

we have some people that call and chit chat with her

at the hospital but for the most part no one ever

comes. The only time we really had visitors was the

first admission and once when after I got angry with

my mother in law she brought my niece who was supposed

to have been getting together with my daughter to the

hospital.

When I call to see if anyone can come to the hospital

to watch Gwynn and the baby who stays with me at the

hospital as I am breast feeding, people say they will

see if they can but no one ever comes. By the third

day I really smell. I am really not sure what will

happen when I stop breast feeding and need to not

bring Aiden with me on her inpatient stays...can not

think of anyone that will keep him and if my husband

does not work we will not be able to pay the bills. We

are already behind so each missed day just adds on to

the financial stress.

my mother in law the other night said she would come

(we were just in the hospital) and then called back to

say she was going out to dinner with friends and did

not want to feel rushed so she couldn't come.

Funny how my mother in law spent the whole first week

after each of my sister in laws nieces babying her but

in 6 admissions has only come to the hospital twice

for Gwynn.

ok enough with the venting but I really feel better

letting it off my chest.

--- kristinsmith <kristinsmith@...> wrote:

> I'm sure there are many here that can relate to

> feeling lonely and isolated from family and friends

> during some part of your journey. We have friends

> who rarely call anymore and family members who

> prefer to not discuss our children's health issues.

> People who were very supportive early on have

> dropped out of the picture as months have turned

> into years of dealing with our chronic health

> issues. I suspect that people just don't know what

> to do or say at times. And admittedly, we sometimes

> don't always have the time to reach out.

>

> I've been thinking that I'd like to put together a

> list of helpful ideas that we can share with

> families and friends, either in person or just

> posted on our family website. It would probably be

> something very beneficial for families just

> beginning this journey.

>

> If anyone has anything to add, please just email me

> and I'll send back a completed list once it's

> compiled.

>

>

> Here are some ideas from a site for kids with

> cancer:

> http://www.acor.org/ped-onc/cfissues/dodont.html

>

> Some ideas of things to do for families:

>

> Clean their house for when they come home from the

> hospital.

> Get them a gift certificate for video rentals.

>

> Buy CDs or cassette tapes for the child undergoing

> chemotherapy. Perhaps even get them a Walkman or

> Discman if they do not have one. Or, an MP3 player.

>

> Puzzle books, reading books, and activity books,

> especially for the siblings. Many parents could use

> help with the other children.

>

> A night or day of babysitting.

>

> Take the parent a bag filled with things she thought

> they might need, such as note cards, nail care

> products, laundry detergent, magazines, hand lotion,

> an array of items. Just think to yourself, " If I

> couldn't be home for over a week, what would I

> need? " Then throw it in the bag.

>

> If it's possible to get there, come and sit with the

> parent in the hospital on those long days when he or

> she is scared and bored and exhausted all at the

> same time. Bring a favorite food or a new magazine,

> and bring lots of news and stories to make them feel

> less left out of normal life. Hang out with the

> child so Mom or Dad can get a shower and something

> to eat.

>

> If their treatment center is fairly far from home,

> phone calls (and gifts of those pre-paid phone cards

> so they can call out) can make them feel like

> they're still in touch with family and friends.

>

> Enlist people to send cards and silly, fun things to

> the child and any brothers or sisters. A little fun

> and excitement go a long way toward alleviating pain

> and fear.

>

> Find out what the child likes (some kids collect

> stickers, beanie baby toys, cool hats, pins, etc.)

> and help get a collection started if he or she

> doesn't have one already. It will provide something

> fun to focus on and then people will know what to

> send or bring when they don't know what else to do.

>

> Commit yourself to be the friend of one of the

> siblings, someone the child can call on when he or

> she needs to talk or is feeling left out. If the

> child has brothers or sisters, find someone whose

> special job it is to give each of them attention,

> time, treats. They're scared and they're left out

> and they need people to take them places and listen

> to them and make them feel important. Be that

> person!

>

> Find out if there are any special needs the family

> has, and try to coordinate a solution to their

> problem. Is there a child who is often home alone

> after school because one parent is at work and the

> other is at the hospital? Do they need help with

> transportation or a supply of meals on certain days

> when normal life is impossible because of clinic

> visits, diagnostic tests, etc.? Once you've

> identified an area of concern, work WITH the family

> to help them solve the problem. In particular, don't

> ever decide on your own to sponsor a large project

> like a fund-raiser or major house repair, etc.,

> without talking with the family first. As

> well-meaning as many of these efforts can be, they

> may not always be serving the family's most urgent

> needs. Any supportive undertaking needs to be done

> in a way that respects the family's wishes and

> honors their privacy.

>

> Be the " fun " friend who shows up at the hospital

> room or at home with bubbles, silly string, joke

> books, Marx Brothers videos, rub-on tattoos,

> whatever. Life is scary enough right now without

> having all the grown-ups walk in with long faces!

> It'll help Mom and Dad, too. (Author's note: One of

> our dearest friends showed up at the hospital with a

> roll of paper, painters' tape --the kind that

> doesn't leave sticky marks-- and a box or markers.

> She covered the walls with paper and each person who

> visited my son drew pictures for him, wrote jokes,

> left funny notes and signed their names. Of course,

> he wanted to draw, too! Distraction is the name of

> the game! )

>

> Messages from families:

>

> Don't take " no, we don't need any help " from a

> family as their final response...ask again. Don't

> say, " Well, call if you need something " - we

> probably won't call. We are not used to needing help

> from others and do not know (1) that we need it and

> (2) how to say yes. If you really mean it when you

> say you want to help, you must come up with your own

> ideas... such as " I'd like to mow your grass " or " I

> will babysit....(the younger sibling if any) this

> week-end " or " I will be snow-blowing your drive-way

> for the season. " or " Let me stay with you son

> overnight at the hospital so you can get some rest. "

> And if you make such an offer and we refuse, we may

> be refusing because we really don't need help like

> that at the moment, but please call back in a week

> or two and try again!

>

> I think what most folks forget is that this is SUCH

> a LONG term family problem. Meals and help the first

> few weeks are nice....but we're dealing with stuff

> that will last 1 to several years. It's easy to fade

> out of the picture. Emotional support is CRUCIAL for

> the family. Just make a point to call, once a week

> or every two weeks. Parents of CK's lose some of

> their former friends and get distanced from their

> relatives. You are very right about letting people

> help, for their sake and yours. It is a humbling

> experience, but it works out for the best for

> everyone.

>

> What to say to the parents?

> Please don't say: " I don't know how you handle it, I

> just couldn't do it! " What are we supposed to do,

> shrivel up and die because our child has cancer? We

> aren't " handling " it because we are superior people,

> we simply have no choice. We have to protect our

> children. In fact maybe we are not " handling " it at

> all, it may be that we are a total emotional mess,

> but we have to save our kids so in the haze of

> hospital rooms and surgeries and toxic drugs put in

> our children's veins we focus on the important facts

> that we have to know - like focussing on the

> taillights of the car in front of you as you drive

> through the fog. And we may have a smile on our face

> as we talk to you, but that doesn't mean we don't

> cry in the nights, it only means that we are trying

> to make you comfortable so that you will keep

> talking to us.

>

> I felt much more comfortable if people just dealt

> with it head on and acknowledged that something

> horrible had happened. I think it's the tongue-tied,

> awkward silence we hate, isn't it?

>

> Thanks!

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> This forum is open to parents and caregivers of

> children diagnosed with a Primary Immune Deficiency.

> Opinions or medical advice stated here are the sole

> responsibility of the poster and should not be taken

> as professional advice.

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[Guest guest]

Thanks !!....I am so glad I have an outlet to

relieve the tension so I can focus on what matters and

that is my two beautiful children. Thanks for the

prayers...heres to hoping all is well with your piddo.

~~

--- nancy barnes <nancyb315@...> wrote:

> ,

>

> I saw your post and my heart goes out to you that

> you do not have a better support system...you sound

> like an awesome mom. You and yours are in my

> prayers....meanwhile, keep venting and everyone here

> will be listening.

>

>

> mom to CVIDer

>

> sarah larson <mom2gwynn@...> wrote:

> -

>

> This is fabulous. I never knew how alone I was

> until I

> started spending days on end in the hospital with

> Gwynn by myself. I know my friends get tired of me

> canceling plans because Gwynn is sick again and

> when

> they call and I say we are getting ready to head to

> the doc because she is not feeling well their tone

> of

> voice seems to change. why? what's wrong now? in

> that

> voice that almost sounds like....How can one child

> get

> sick this often.

>

> we have some people that call and chit chat with

> her

> at the hospital but for the most part no one ever

> comes. The only time we really had visitors was the

> first admission and once when after I got angry

> with

> my mother in law she brought my niece who was

> supposed

> to have been getting together with my daughter to

> the

> hospital.

> When I call to see if anyone can come to the

> hospital

> to watch Gwynn and the baby who stays with me at

> the

> hospital as I am breast feeding, people say they

> will

> see if they can but no one ever comes. By the third

> day I really smell. I am really not sure what will

> happen when I stop breast feeding and need to not

> bring Aiden with me on her inpatient stays...can

> not

> think of anyone that will keep him and if my

> husband

> does not work we will not be able to pay the bills.

> We

> are already behind so each missed day just adds on

> to

> the financial stress.

> my mother in law the other night said she would

> come

> (we were just in the hospital) and then called back

> to

> say she was going out to dinner with friends and

> did

> not want to feel rushed so she couldn't come.

>

> Funny how my mother in law spent the whole first

> week

> after each of my sister in laws nieces babying her

> but

> in 6 admissions has only come to the hospital twice

> for Gwynn.

> ok enough with the venting but I really feel better

> letting it off my chest.

>

> --- kristinsmith <kristinsmith@...>

> wrote:

>

> > I'm sure there are many here that can relate to

> > feeling lonely and isolated from family and

> friends

> > during some part of your journey. We have

> friends

> > who rarely call anymore and family members who

> > prefer to not discuss our children's health

> issues.

> > People who were very supportive early on have

> > dropped out of the picture as months have turned

> > into years of dealing with our chronic health

> > issues. I suspect that people just don't know

> what

> > to do or say at times. And admittedly, we

> sometimes

> > don't always have the time to reach out.

> >

> > I've been thinking that I'd like to put together

> a

> > list of helpful ideas that we can share with

> > families and friends, either in person or just

> > posted on our family website. It would probably

> be

> > something very beneficial for families just

> > beginning this journey.

> >

> > If anyone has anything to add, please just email

> me

> > and I'll send back a completed list once it's

> > compiled.

> >

> >

> > Here are some ideas from a site for kids with

> > cancer:

> > http://www.acor.org/ped-onc/cfissues/dodont.html

> >

> > Some ideas of things to do for families:

> >

> > Clean their house for when they come home from

> the

> > hospital.

> > Get them a gift certificate for video rentals.

> >

> > Buy CDs or cassette tapes for the child

> undergoing

> > chemotherapy. Perhaps even get them a Walkman or

> > Discman if they do not have one. Or, an MP3

> player.

> >

> > Puzzle books, reading books, and activity books,

> > especially for the siblings. Many parents could

> use

> > help with the other children.

> >

> > A night or day of babysitting.

> >

> > Take the parent a bag filled with things she

> thought

> > they might need, such as note cards, nail care

> > products, laundry detergent, magazines, hand

> lotion,

> > an array of items. Just think to yourself, " If I

> > couldn't be home for over a week, what would I

> > need? " Then throw it in the bag.

> >

> > If it's possible to get there, come and sit with

> the

> > parent in the hospital on those long days when he

> or

> > she is scared and bored and exhausted all at the

> > same time. Bring a favorite food or a new

> magazine,

> > and bring lots of news and stories to make them

> feel

> > less left out of normal life. Hang out with the

> > child so Mom or Dad can get a shower and

> something

> > to eat.

> >

> > If their treatment center is fairly far from

> home,

> > phone calls (and gifts of those pre-paid phone

> cards

> > so they can call out) can make them feel like

> > they're still in touch with family and friends.

> >

> > Enlist people to send cards and silly, fun things

> to

> > the child and any brothers or sisters. A little

> fun

> > and excitement go a long way toward alleviating

> pain

> > and fear.

> >

> > Find out what the child likes (some kids collect

> > stickers, beanie baby toys, cool hats, pins,

> etc.)

> > and help get a collection started if he or she

> > doesn't have one already. It will provide

> something

> > fun to focus on and then people will know what to

> > send or bring when they don't know what else to

> do.

> >

> > Commit yourself to be the friend of one of the

> > siblings, someone the child can call on when he

> or

> > she needs to talk or is feeling left out. If the

> > child has brothers or sisters, find someone whose

> > special job it is to give each of them attention,

> > time, treats. They're scared and they're left out

> > and they need people to take them places and

> listen

> > to them and make them feel important. Be that

> > person!

> >

> > Find out if there are any special needs the

> family

> > has, and try to coordinate a solution to their

> > problem. Is there a child who is often home alone

> > after school because one parent is at work and

> the

> > other is at the hospital? Do they need help with

>

=== message truncated ===

__________________________________________________

[Guest guest]

This is a GREAT idea.

Here are a few:

If a relative or friend is interested in being supportive, then please

take the time to ACTUALLY LEARN what your child has. I have heard well

meaning people say the dumbest things about my kids.

For instance: My sisters kids, they have a disease with a million

letters in it and they cant go around people or eat ice cream.

REALITY--my 4 kids have multiple health problems,and its not bc

Brennan has a floppy larynx that he cant eat ice cream HE IS ALLERGIC.

another one: My loving sister, who would lay down her life for my kids

in a hearbeat, is wont to tell people my kids get monthly BLOOD

TRANSFUSIONS(IVIG IN fusions).

Our kids are kids. Doesnt that sound simple? But people forget that.

Its not all hospital and meds. They play too. A friend of mine has a

son who is 3 and has ALL. People seem to think that bc he has

luekemia, the only thing he wants to do all day is sit in a stroller

and look at the wall. I invited her camping with our church group last

week, and she was ecstatic. Us with our luggage filled with med equip

and meds, her with a backpack for his TPN and broviac---but guess

what? Those kids had a blast riding their bikes and roasting

bananas(yes, I said bananas), catching fireflies in jars, and eating

bagfulls of marshmallows. Part of that seems so normal--like, look at

the kids, they are having so much fun playing!! while another side of

us is like--WOW!! LOOK!! the kids are outside playing!! and your heart

just swells b/c maybe sometimes they cant do that---but sometimes THEY

CAN. Dont stop inviting people to fun stuff b/c you THINK they might

say they cant come---sometimes its just a little adjustment that will

make it work. Maybe they cant go to a campground filled with people

when they are sick, but maybe you could set up a tent in your backyard

and invite your friend and her kid over for a " most of the nighter "

instead of all nighter. An example--my 10 yr old nephew has

uncontrolled epilepsy. He has a VNS implant. He is also a 10 yr old

boy. Some of my SILS family will always say, " but he cant do that, he

might have a seizure!! " when really, if you take the time to learn his

meds schedule, like I have, when we went camping last week, he went

with us and took his meds, batted in batting cages(wearing a helmet),

rode the bumper boats, went swimming, etc. BUT, heat can bring on his

seizures, so we stopped to cool off often in the A/C, gave him

frequent breaks, and never let him go swimming by himself. So yes, he

CAN do that stuff, he just needs some adjustments. Just b/c a child

has a medical problem, doesnt mean they stop being kids, and they need

fun and memories the same as other kids.

Another thing---parents are not drs and nurses(well, some of us

are)--but we shouldnt be tied to our kids constantly(not that I dont

love them to pieces, we just need a break). Not just 2 minutes in the

bathroom, but maybe like a dinner that doesnt come in a sack, or a

movie. I find people are terrified to watch my kids for ONE HOUR b/c

of fear of SOMETHING happening.

If you cant do anything else, call your friend and tell them something

funny. Email them a dumb/funny email. Just b/c our kids are sick,

doesnt mean we forgot how to laugh and have fun.

BTW--while camping and having my friend with her little boy there, we

had to share a giggle when my mom came out of the fifth wheel to hop

into our convo to add that my kids, " got more platelets in their IV's

and they came up a whole 200 DEGREES. "

Which of course, is mymom speak for " last blood check, their IgG count

was up by 200 " LOL

Valarie