RE: I need help with an encouraging article

[Guest guest]

Dear Maja,

This is so sad. I really admire your trying to change the situation.

I'd like to do anything I can to help.

If there is any way I can do something, please let me know.

>1. What is your personal attitute towards your child's

>condition.

At first, of course, my reaction was total despair. But now, as I

write this on my " baby's " 7th birthday, it is very different. Now I

feel that (child with CF) has many very healthy genes, in

addition to this messed up one that has given him CF. I feel he has

the right to a healthy, long life and I have the responsibility of

giving him the best chance possible for this.

>2. How much time/effort does it take? Maybe per day..

Basic treatments take about an hour a day. This includes breathing

treatments, medicines, CPT.

>3. Do you talk to other people about CF? What is their

>reaction and

>what is your reaction to their reaction?

I am someone who feels very comfortable talking about CF and

spreading awareness. I tyr to educate all of the people who come in

contact with so that they don't treat him as " weird " and so

that they are not scared of CF, but rather interested. I try to get

them involved in activities such as the walk, because I find that

they really do want to help.

>4. Do you talk to other CF parents and is that useful?

I would be lost without my support group lists. Useful? More like a necessity.

>5. Have you told your child about the CF and maybe

>what was their

>reaction?

Because was diagnosed at birth, he has always known about CF.

He is very educated about it and why he does treatments, etc. Since

we have talked about it since he was little, I don't know when he

actually learned he had it. Sometimes he says stuff like " when I

don't have CF anymore... " and sometimes he says he hates it, but he

really doesn't know any different, and he takes it well.

>6. What are the 3 imporant things CF has taught you

>(to focus on in

>life).

Focus on making today a good day, because we don't know about

tomorrow (very cliche, I know).

Remember how lucky I am. Even though CF is terrible, there are many

worse conditions and people facing more difficult challenges.

Focus on the important stuff and try not to waste time and energy on

the trivial.

>7. Do you rely on the doctors or you do own research,

>reading, etc.

>to help your child?

Because I feel we have the best doctors and medical staff in the

world, I rely on them for 's daily care, but I like to read

other ideas and I ask my doctors about them.

>8. Do you feel angry at ... life/God/destiny/whatever

>for having a

>child with CF? Maybe sometimes/often/not at all.....

Yes. Often. More sad than angry.

>9. Do you think about the future and what is that

>keeps you going?

I used to imagine a day when the phone would ring and another parent

of a child with CF, or a nurse or someone would say, " Have you heard?

It's true. Turn on your radio. They have really found it. They can

really cure CF! "

This kept me going. Now, I don't have this fantasy as much anymore. I

wish I did.

>10. If you have a non-cf child what is the difference

>in your attitude towards then, do you treat them

>differently; less attention, etc. Do they understand

>you....

My non-CF child is older, so he understands that he is different. He

is supportive. He sometimes helps with 's treatments.

Occasionally he resents that gets special treatment, but I

think it's normal sibling rivalry.

I hope this helps a little bit.

Lenora

Parent of a child (7 today!!!) with cf

--

http://www.cfawareness.org

....in memory...in hope...dispelling the darkness...Learn more about

cystic fibrosis and the special people who cope with it every day