Re: Hello - long reply

[Guest guest]

>

> Anyone have any tips for a new CF family?

>

> Rev. Shanna M. Francis

> mother of Triana M. Francis

Hi Shanna,

Take a deep breath - now take another one. Remember to breathe occasionally

as you fight your way through the crappy stuff you're dealing with right

now...

It does get a bit easier - really it does. You can reach a point where you

can remember what order to do the medications in, how to make the timings

work etc. Or at least, you'll reach a point where you can manage to deal

with what you have to deal with, when you have to deal with it, and

disregard the other less important stuff.

The very important stuff is: remember to make time for yourself and the

other members of your family. Your daughter isn't going to remember that

you gave her physio/antibiotics when she was asleep. She is going to

remember that Mummy was able to play with her. You will not be able to play

if you don't get time to recharge your batteries, somewhere that Triana

isn't! If there are people out there offering to help - take the help. Get

someone to do some washing/ironing/cleaning/cooking and treat yourself to a

trip to the library or the coffee shop or a walk in the park or whatever you

like to do.

I know when I was were you are now, I was planning my daughter's funeral

multiple times every day. I don't do that anymore. There isn't a day goes

by when I don't hurt each and every time something reminds me that she has

CF, but I've learned to look past that and see all the wonderful things that

she is in spite of (or perhaps even because of) CF.

Just a quick introduction of me and mine - I'm , married to ,

mother of Cathryn and Sian (pronounced Sharn). My Cate is 10, pubescent,

beautiful, talented and doesn't have CF. Sian is 6, beautiful, talented and

does have CF. We live in Canberra (Australia's national capital). Doug is

a computer nerd and I am either a kept woman or domestic goddess, depending

on what books you read! We worship at our local Uniting Church, where we

are heavily involved in the children's ministry. (See - you can have CF in

your life, and still have a life!)

Anyway, hope some of this helped. Feel free to email me privately at any

time if you want to chat. There's a wonderful piece of prose called

" Welcome to Holland " which describes live with a " special " child really

well...

Much love,

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia