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Nina Murphy
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| Posted: June 08 2006 at 10:32pm | IP Logged
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Dear Sisters in Christ,
Please share with me if you know of any other families with CF. It is lonely for me, my husband and children to not have others to understand the daily ups and downs. I receive reactions of incredulity from people I meet at the Great Strides walk, doctor's office, or on-line when they discover we are open to life AND homeschool a large family while caring for not one, but two children with CF.
I know of only one other family who continued to have children, but she is a very busy (long distance) mom who I have limited contact with.
Thank you so much for any networking help!!!
__________________
God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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ladybugs
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| Posted: June 08 2006 at 10:40pm | IP Logged
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Nina,
Before I realized this was you I thought, I know one!
Ok, so that doesn't help. 
Sorry I can't help...maybe you can laugh at my guffaw  ...
__________________
Love and God Bless,
Maria P
My etsy store - all proceeds go to help my fencing daughters!
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Cay Gibson
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Joined: July 16 2005
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| Posted: June 08 2006 at 11:10pm | IP Logged
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Nina,
Do you read Danielle Bean's blog? She has a son who has CF.
__________________
Cay Gibson
"There are 49 states, then there is Louisiana." ~ Chef Emeril
wife to Mark '86
mom to 5
Cajun Cottage Under the Oaks
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Nina Murphy
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Joined: May 18 2006
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| Posted: June 09 2006 at 3:13pm | IP Logged
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Yes, thank you, Cay. Danielle is awesome...I praise God that she has an "audience" out there and is respected; it is not an accident that Ambrose has CF. Their family is a powerful witness, especially considering how much they suffer and yet Danielle is such an effective, positive, and Faith-ful voice. But she is sooooo busy and sooooo far away!
My husband's one cousin has 5 children with CF, one non-CF, and the mother had an affair, left, and it is ugly and bitter. The other cousin has one with CF, two non-CF and well....ditto for that divorce. Those poor, poor children. SO: families need support.
So: keep your eyes and ears open please! And if anyone *needs* to make a donation somewhere or just *can't think* of any prayer intentions  ... please remember those with CF. 
[Very funny, Maria. But thanks for trying. See how frustrating it is?]
__________________
God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Christine
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Joined: March 23 2006
Location: Washington
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| Posted: June 09 2006 at 9:27pm | IP Logged
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Dear Nina,
I sent you a PM about your post in More the Merrier, but it may have never gone through, as it showed I was logged out after sending. Growing up, my neighbor (Doug) had CF. My brother used to help Doug's mom with his care, occasionally. Doctors said that Doug wouldn't live to age 10. When he reached 10 years old, they said he wouldn't live past 21. At 21, he married a young lady that he met in college (his mom worked at the UW, while he was a student there, so that she could attend to his medical needs). Today, he is 35.
My brother is a better person today because of Doug and his parents. I believe that my sisters and I may be better people, too. Those with Cystic Fibrosis are a blessing to this world and all whom they encounter. I pray that God blesses your family abundantly for your openness to life!
__________________
Christine
Mommy to 4 girls, 5 boys, & 2 in God's care
Memories of a Catholic Wife and Mother
Pretty Lilla Rose
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Nina Murphy
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| Posted: June 10 2006 at 12:14pm | IP Logged
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Thank you eternally for writing this to me, Christine. I'm storing it up in my heart. (I did not get your PM---but it obviously wasn't meant to be for some reason.  )
It's funny you say that....but I was just telling my mom that I feel honored to be a member of the Cystic Fibrosis community because of the depth I encounter behind their eyes and in the sincerity of their words....there is a "purity" to people who suffer with this disease. I have yet to encounter bitterness, only a kind of profound weariness. But a fighting spirit. Don't get me wrong: There are few open to fecundity when these genes manifest. But there are some. And I truly think people are so poorly catechized and formed today....that they don't understand the meaning of suffering. And the devil certainly tempts with fear and anxiety, which is not from God.
God bless you and your family this weekend. And please keep in touch!
Nina and fam
__________________
God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Patty
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| Posted: Aug 02 2006 at 9:29pm | IP Logged
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Nina,
I know this is an old post, but I had to write. We have good friends who have ten children (and one baby in heaven who died at age two weeks of CF complications). Two of their living children have CF and are doing pretty well. They have homeschooled quite a few years. Their oldest dd is in her early 30's and the youngest is 10. Please let me know if you would like to contact my friend. Melanie is a dear person and I'm sure she would not mind you e-mailing her.
God bless,
Patty
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Nina Murphy
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| Posted: Aug 03 2006 at 11:47am | IP Logged
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Dear Patty,
NO! It doesn't matter when I originally posted; it is a concern that will be ours forever....a cause close to our hearts. So, thank you so much for sharing the information about such a wonderful family. I *need* to know about the existence of such families.  
I would love to have Melanie's contact information.
Have a wonderful day, Patty!
__________________
God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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Patty
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| Posted: Aug 04 2006 at 4:01pm | IP Logged
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Nina,
My friend Melanie said it would be fine for you to contact her. I sent you a private message.
God bless,
Patty
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ladybugs
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| Posted: Oct 10 2006 at 4:30pm | IP Logged
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Nina,
I found this website today via ClickSchooling and it had information about high calorie recipes for kids with CF.
Hope it helps.
__________________
Love and God Bless,
Maria P
My etsy store - all proceeds go to help my fencing daughters!
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deleted user
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| Posted: Oct 10 2006 at 5:13pm | IP Logged
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You're awesome, Maria.
Everyone needs these in this family except for Brendan and me. Great. Just kidding.
They look easy and scrumptious. It just is impossible to GET Joey and Clare to WANT to eat...no matter how delicious it is. They WILL take a bite or two but then "they're done". Plain sugar candy like gummy bears, jelly beans, anything at Sweet Factory, they will eat readily....but those aren't exactly nutritious (or fattening, per se) and tend to make them sick! So every little suggestion helps.
Thanks for thinking of us!
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Nina Murphy
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| Posted: Oct 10 2006 at 5:14pm | IP Logged
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THAT WAS ME 
__________________
God bless,
~~Nina
mother of 9 on earth,
and 2 yet-to-be-met
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4Real Forums : Special Blessings
Topic: Know of families w/ Cystic Fibrosis?
