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AnnaD 
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Joined: 01 January 1900
Location: New Zealand
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 Topic: I need your help ladies!
Posted: 15 May 2006 at 8:15am |
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Friends of ours had a baby about two months ago, after many problems their darling wee girl has been diagnosed with Cystic Fibrosis. As you can imagine they are devastated... I need to know what to do. I want to send them a card but do not know what to say. Any ideas?
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Anna and Quinn 10 July 2004
www.quinnariki.blogspot.com
and one more on the way....
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Kazzle
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Location: Porirua
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Posted: 15 May 2006 at 8:47am |
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my suggestion would be to send them a card, telling them that you are thinking of them during this difficult and upsetting time, and that if they need anything then you are there for them.
there is nothing you can do except let them know that you are thinking of them and that you are there should they need a shoulder to cry on.
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aimeejoy
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Location: Dannevirke
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Posted: 15 May 2006 at 8:48am |
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I think Kaz has hit the nail on the head... Nothing to add to that
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Aimee
Hannah 22/10/05
Greer 11/02/08
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k&jsmum
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Posted: 15 May 2006 at 1:07pm |
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I agree. Thats about all I really said to my friend when her daughter was diagnosed with cerebal palsy (sp?). And now we talk really openly about it which is great for her. I think she would find it hard if we all pretended there was nothing wrong.
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Marlene
Keegan ~ 14 October 2003
Jaidyn ~ 14 October 2003
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Maya
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Posted: 15 May 2006 at 2:08pm |
I agree with Marlene, talking is sometimes best. A friend lost her little boy to SIDS in Feb and I was so nervous about what to say to her, but it turned out she just wanted to talk about him, and about losing him and stuff, she needed to talk to grieve I guess.
Re: the Cystic Fibrosis thing, my brother was diagnosed with it also when he was only a couple of months old. Mum and Dad found huge support thru the Cystic Fibrosis foundation, and also the Crippled CHildrens Society. They used to help look after me when Mum had to spend time in hospital with JOhn, and they have pretty regular playgroups and stuff too. One of the hardest things for Mum I think was knowing that they couldn't have any more kids because of the risk that they too would have it).
It turned out that John doesn't have CF (found that out when he was 2, and my sister arrived 9 mths later  ), because he was prem his pancreas and lungs were compromised and gave a false positive, which was a huge relief to Mum and Dad, but they have still kept in touch with a couple of the families they met thru the CF group even now 20 years later.
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 Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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lizzle
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Posted: 15 May 2006 at 4:35pm |
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My girlfriend's sister had cystic fibrosis, and with her, it was a lot of hard work. Her mother gave her physio everyday. She was in the hospital a lot, and unfortunately passed away when she was sixteen. Nowadays there hasvebeen a lot of breakthroughs in terms of CF treatments and as Emma said , the cystic fibrosis foundation are fantastic and can give a lot of information. My parents and my girlfriends parents were very close and they tried to never treat Jolene differently from us, and also provided a safe place for her to visit, and for her sister to stay when necessary.
sorry for the novel. Hope some of it was helpful!
edited to correct my crappy spelling
Edited by lizzle
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Caterpillar
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Location: Australia
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Posted: 17 May 2006 at 4:24pm |
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Not much help i know but, just wanted to say sorry about your friend. Cant imagine anything worse than seeing your baby sick. Makes me realise how much we got 2 b greatful for - i'll remember that next time i'm yelling at my kids. All the best, I'm sure she'll be happy to know that you're there for her.
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Liam Blake 10-12-03 &
Kye Jarrod 12-09-01
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emeldee
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Posted: 17 May 2006 at 5:02pm |
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CF is a ghastly illness and your friends are in for a tough time for quite a while. What they will need to know is that even though their world has turned upside down, they still have friends that are there for them. Be honest and say that you don't know what to say on the card - other than the fact that you are there for chats, coffee, escapist chick flicks or whatever else you guys did together before - but that you wanted to send them a card or note so that when they were ready for company, you are ready for them.
(If you are interested look up Tracey Richardson, she's a NZ mum that has two kiddies with CF and now works as an inspirational speaker http://www.speakers.co.nz/traceyrichardson.html - she gives a really good insight into what being the parent of kids with CF is like).
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emeldee
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Posted: 17 May 2006 at 5:16pm |
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Oh - and I met an American a while back who came out to NZ for a visit with his family - he has CF and was born in 1952 - so, sorry Greg for publishing your age - but he is an alive and kicking 54 year old CF-er. While it used to be an automatic, not make it out of childhood disease, a lot hasbeen done to improve the lot of people with CF.
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AnnaD
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Posted: 18 May 2006 at 12:07pm |
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Thanks everyone for your help!! I am so terrible with delicate situations that it is nice to have some help!! I have decided against sending a card and think we'll go visit them this weekend, I would hate for them to feel like we are avoiding them and they have told us to come around anytime!!
It is such a sad thing for them to go thru, and it is so sad that it is going to be hard for quite some time. I know that they have a lot of back up which is great and on the plus side the police health insurance is exceptional!! Will keep my fingers crossed for them and hope they are ok!
Thanks again!!
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Anna and Quinn 10 July 2004
www.quinnariki.blogspot.com
and one more on the way....
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I need your help ladies!
