RE: need encouragement/

[Guest guest]

,

Thanks for the message. I am feeling better today. I have been having really

bad migraines and just regular headaches on a daily basis. I went to the

neurologists last week and have been keeping a journal of my headaches. Well

-- today was the first day in a week that I didn't have one. It felt so

good! I took my teenager shopping for a prom dress and we had a great time.

She found a dress -- now I'm just nervous for when the day actually gets

here that she will have a fun time that night but also make good responsible

choices.

I hope you are able to sleep better in the upcoming days. Sometimes our

imagination is our own worst enemy -- at least for me, when I let my

imagination get the best of me is when I have the most worries.

Take care,

Amy

Re: need encouragement?

Amy,

My daughter is 4 1/2 and I still get days when I feel sad, cry & want to

and

do scream at God. Even this past week Ive hardly slept at all except

for

last night and that was pure exhaustion. I just couldn't turn my mind

off

at bed time and all the awful things you try not to think about just

creep

in. Other people do not know how lucky they are and yes there lives are

easier, how many of them do hours of treatments, med's, hsp. visit's.

We've

every right to feel hurt that our beautiful babies do/will suffer when

others dont. My husband and I did PGD but didn't work. When your child

is

still only two its still a recent thing to have happened. Its also hard

to

explain to friends what it feels like. 4 of us from this list went on a

mothers retreat last month and a lady there was saying how that friends

say

things like " well you could get hit by a bus tomorrow " . This lady said

to

them, " Imagine when your baby is born and the dr. tells you that from

the

time the baby is born till about 30 he/she WILL get hit by a bus and

die,

not maybe but WILL, how would you feel? " When the people say

awful,protective,worried etc. she says well thats Cf, its a bus on its

way.

I really loved that and have stored it for when someone says that.

Hope your feeling better soon.

(Australia)

need encouragement?

> Hey all! I have been reading all the posts, but not responding much

b/c of

> lack of time basically. Anyway, I'm not sure what I really need, but I

told

> my husband tonight that I just feel this need tonight to talk to

another

> parent of a child with cf. I think it is an understanding thing. So

many

of

> my friends have kids the same ages as mine and babies on the way and

so on

> and so forth and I'm just feeling lonely maybe that their life seems

so

not

> easier maybe just different than mine is now and how I definitely

didn't

> plan this. Actually my little one with cf is really really healthy, so

I'm

> so thankful, but I have been battling the sadness of the reality of

the

> disease. I guess when he's so healthy I can for a moment " forget " he

has

it,

> but then my mind starts getting the best of me as I think of what is

to

> come. Also, my husband and I want another baby so badly. We had always

> wanted a large family. It is just emotionally hard to make that

decision.

We

> have pretty much decided against the PGD in-vitro testing and were

feeling

> pretty confident about trying naturally and knowing that God will give

us

> the baby that is perfectly created just as intended cf or no cf. I ran

into

> a lady in town today though that has two children both with cf and she

was

> telling me about a few of the things that she does like labeling all

the

> cups in the house so they don't drink after each other, not bathing

them

> together, etc and it just sounded so overwhelming. I never would want

to

> endanger Tristan's health by having another baby if it had cf. I guess

right

> now I'm just feeling selfish for even thinking about it.

>

> Anyway, thanks for listening whoever reads this. Like I said, I can't

> totally pinpoint what I'm feeling, just needing to talk to others who

truly

> understand.

>

> Thanks,

>

> Amy (mom to Skye 4w/ocf, Tristan almost 2w/cf and foster mom to Cary

15yr)

>

>

[Guest guest]

,

Thanks (: I know what you mean about being sick during pregnancy -- with my

first I was sick for almost 4 months and with the 2nd sick for almost 5

months, so besides cf, I'm a little scared for the third hoping I don't go

for 6 months of being sick! That is a good idea to send the poem to friends

or for me especially my family -- they just don't seem to get it. We are

preparing for the CF walk here in our area and it is like twisting arms to

get my family to participate. I have one aunt that is really anxious to

participate and is excited that she has already raised money. My mom on the

other hand acts like it is not that big of a deal and she really seems

pessimistic about asking people to donate. It really hurts my feelings that

she doesn't take this serious. It is hard to be so passionate about

something that affects your child and not realize that everyone else doesn't

get as passionate about it as we do.

Thanks again and take care,

Amy

Re: need encouragement?

In reply to Amy too. Thank you grandma Dana for Mother 's quote,

I always tell my self God doesn't give us more than we can handle but I

never knew the rest and am thankful you passed it on to us. Amy I too

feel the same way as you the only advantage I had was that I was

pregneant with my third son when we found out the oldest had CF at 3

1/2. I too always wanted a family in fact I would have wanted to try

for a girl, but because of the CF and the fact that the first 3 months

of my pregnancies I was so sick I couldn't even take care of myself let

alone the kids I decided we would stop. I know how it feels to have

friends the same age with kids. My friend Sara and I are the same age

and have 3 kids all are about months apart and it saddens me that people

don't understand what I will endure or the kids. Especially now when

is really basically doing well, people don't see. When I found

this group two weeks ago and got the ! welcome to Holland I sent it to

fmily members who have email, and I think I will amke copies for those

who don't. I am here anytime for support as are everyone in this site.

Best wishes and prayers to you.

Re: need encouragement?

Hi Amy,

I know this is not what you planned when you planned to have children.

having CF was a total shock to us. All the things he couldn't do

or participate in. It felt like we were writing the end of his life

and

it was only the beginning. It saddened me very much when the doctors

said he could probably never have children of his own. But is

now

5 and he's a whirlwind waiting to land. There's 3 adults in this

house,

mommy, grandpa and me and he wears us all out. He's got more energy

than

several kids put together. Life is not always easy, and seldom as you

plan it. I must say though that having more than one children is a

chore

in itself, CF or not.

There's is a saying that is attributed to Mother , " I know God

will not give me more than I can handle, I just wish he didn't trust

me

so much. " I find it helps me when I'm going through the rough spots.

Please keep praying and trusting God to help you find the way. What

ever

you decide to do about more kids, I know you will find peace of mind

in

God's plan.

Grandma Dana