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Cystic Fibrosis Hang Out
- Thread starter anonymous
- Start date
<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">i am a 21yr old mother of a 3 yr old bueatiful little girl who has cf. her father who doesnt have anything to do with us also has cf. I just try to take it one day at a time For the most part she is pretty healthy we do the vest she hates it and i try everything to try to make her understand but theres no way she can at this age. I sometimes get worried about our future it being hard for me to work and support us .I am to affraid to put her in a day care , so my mother wathes her while I work but she works to so she cant watch her but 3 days out of the week. And I was going to homeschool her b/c I am to afraid that she will get sick at school.......I dont know what to do............
I'm sure there will be more qualified people answering you, but my CF husband is 43, and when he turned 5, people couldn't believe she enrolled him in kindergarten. She fiercly protected his health and diet, but she raised him like he was going to live forever (she had been told since his birth he wouldn't live, and had lost an older child already to CF, plus had three w/o CF). I'm so thankful for the kind of Mom she was. She gives all the glory to the Lord, but you can't discount her care giving him the life he has today, and consequently, that we have had the life together that we have had.I'm glad you have a Mom that helps you, because you need a support network. Do you have a church? You've probably already asked your pediatrician: I'm sure they'll give you good advice. Also, I was reading the messages in the folder about the FEV's (I think that's where it was) and there were some Moms with CF kids discussing issues. One of the Mom's really sounded like she had a lot of good advice. Try leaving a message there if no one else answers you!Good luck and take care.
I am a 30 yr old female with CF. I started kindergarten at age 5 just like everyone else my age. I am glad my mom didn't keep me from going to school....this is just my opinion...but I believe school is great. It's great social interaction for kids...and your little girl will get exercise from playing. When I was younger my lungs were there worst, but I loved going to school. I don't believe that kids should be home schooled because of an illness such as CF....she needs to be treated like any other child her age....just have to keep a closer eye on her when it comes to getting sick...anyway...Good Luck with whatever you decide! But from my own experience...let her be a "normal" child.Dea
I can't emphasize enough about raising a cf child as normal as possibly allows. I enrolled my son in school when he was 5 and never even thought of home schooling. Of course you have to be extra cautious at times but to not allow your child to interact with others, I think, does more harm than good. I tried so hard to raise my son without being the paronoid parent, but looking back I was very overprotective with him and did him no favours later on in life. To overprotect your child will have repercussions later on in life, guaranteed........take it from someone who has "been there and done that".
When I was five I hadn't been diagnosed with CF yet (I was diagnosed at 11), but I did have epilepsy (which went away when I was 9, thank God), but my mom still watched me like I hawk when I went to school. But I never noticed her watchfullness, and I'm really grateful to them now. When CF did come on the scene, I was still treated like my other non-CFer siblings, and did everything I wanted to do...my parents didn't let it hinder me. I think that as long as you treat your child as normally as possible the CF will be less of a burden and more of a fact of life that you just deal with, like anything else. That's how we dealt with it, and I'm so glad now. I'm a senior in college, and I can't thank my parents enough for letting me have a normal life and my independence.
I have almost completed my personal CF web site.... ]<a target=new class=ftalternatingbarlinklarge href="http://geocities.com/steph65roses">Stephanie's Story - 65 Roses</a>After I finish the basics, I am going to be adding a database of CFers looking for pen friends/e-friends, etc. If you have any ideas, suggestions, or are interested in signing up, please <a target=new class=ftalternatingbarlinklarge href="mailto:steph65roses@yahoo.com">email me!</a>I will let everybody know when it is up & running.Thank you!Stephanie
steph65roses
New member
Would anybody be interested in participating in a CF retreat in the CT/MA/NY area? Email me with your questions, ideas, interest.Thanks!
steph65roses
New member
I am putting together a retreat for CFers for next summer, 2004 in the CT/NY/MA area. I need ideas, participants and most of all VOLUNTEERS!! Please email me if interested: steph65roses@yahoo.com - I have begun receiving donations and sponsers, but I am still only in the beginning phases. I think this is a great opportunity for CFers to hang out and get to know one another in the Eastern US area.thanks!Stephaniehttp://geocities.com/steph65roses
steph65roses
New member
I am putting together a retreat for CFers for next summer, 2004 in the CT/NY/MA area. I need ideas, participants and most of all VOLUNTEERS!! Please email me if interested: steph65roses@yahoo.com - I have begun receiving donations and sponsers, but I am still only in the beginning phases. I think this is a great opportunity for CFers to hang out and get to know one another in the Eastern US area.thanks!Stephaniehttp://geocities.com/steph65roses