Living in Ignorance

[JRPandTJP]

De-nial, it's not just a river. da dump dump. Okay maybe I should leave the jokes to Brandon.

I couldn't read or even step foot on these boards for the whole first year. It was just too much to even catch a sad story. We all have our tolerance and process to go through. I think underneath a lot of it is guilt...were they the one who passed the gene? This has come up in subtle ways in our family. Guilt was the biggest hurdle for me to overcome and it still sneaks in from time to time.

She may even grieve for you and your husband silently and alone. My mom once admitted that she has had a few good cries for us and Ben but didn't want to share them with us. People are really afraid to off-set some balance by opening up and sharing their feelings most of the time. She told me she didn't want to share because I may be having a really good stretch and she didn't want to ruin it by bringing it up.

Amen to the this forum! Thank you all for being willing to share. It has helped me more than you'll ever know.

 

[PinkRaysOfSunshine]

I get that crap from everyone.... i live in kentucky... were APPARENTLY education (about cf at least) isnt high on anyones list of priorities....

my mom..... introduces arionna as "this is my grandbaby... arionna she has that *whispers* cf.. u know...."
and then the complete stranger shes talkin to goes... "whats cf...?"
mom: "cystic fibrosis."
heres where i butt in : "its a genetic disease...., so do u have any grandkids?"
later after a 30 minute q and a about cf... i get the "well maybe she'll just grow out of it" line.............. WHAT THE HECK? r u retarded?

anyways.... ive decided that from now on im gonna introduce my mom as: "hi this is my mom scarlet... shes 65 .. i know she looks about 92 but thats because shes baked herself in the tanning bed.. she also is a compulsive gambler and a chain smoker.. nice ot meet u.."

i love my mom... but i wanna choke her when she does that..... arionna is ARIONNA not cf... theres a million other ways u could introduce her... her disease does not define her....

 

[PinkRaysOfSunshine]

I get that crap from everyone.... i live in kentucky... were APPARENTLY education (about cf at least) isnt high on anyones list of priorities....

my mom..... introduces arionna as "this is my grandbaby... arionna she has that *whispers* cf.. u know...."
and then the complete stranger shes talkin to goes... "whats cf...?"
mom: "cystic fibrosis."
heres where i butt in : "its a genetic disease...., so do u have any grandkids?"
later after a 30 minute q and a about cf... i get the "well maybe she'll just grow out of it" line.............. WHAT THE HECK? r u retarded?

anyways.... ive decided that from now on im gonna introduce my mom as: "hi this is my mom scarlet... shes 65 .. i know she looks about 92 but thats because shes baked herself in the tanning bed.. she also is a compulsive gambler and a chain smoker.. nice ot meet u.."

i love my mom... but i wanna choke her when she does that..... arionna is ARIONNA not cf... theres a million other ways u could introduce her... her disease does not define her....

 

[PinkRaysOfSunshine]

I get that crap from everyone.... i live in kentucky... were APPARENTLY education (about cf at least) isnt high on anyones list of priorities....

my mom..... introduces arionna as "this is my grandbaby... arionna she has that *whispers* cf.. u know...."
and then the complete stranger shes talkin to goes... "whats cf...?"
mom: "cystic fibrosis."
heres where i butt in : "its a genetic disease...., so do u have any grandkids?"
later after a 30 minute q and a about cf... i get the "well maybe she'll just grow out of it" line.............. WHAT THE HECK? r u retarded?

anyways.... ive decided that from now on im gonna introduce my mom as: "hi this is my mom scarlet... shes 65 .. i know she looks about 92 but thats because shes baked herself in the tanning bed.. she also is a compulsive gambler and a chain smoker.. nice ot meet u.."

i love my mom... but i wanna choke her when she does that..... arionna is ARIONNA not cf... theres a million other ways u could introduce her... her disease does not define her....

 

[loriz65]

I remember when my niece Gillian was born and diagnosed within 24 hours, my mother (her grandmother) was so afraid to see her in the NICU unit in fear that she was going to die that she sat in her car in the hospital parking lot! So here I am, sister of mommy of niece, trying to keep her in one piece after having the baby taken immediately to surgery and then going to the parking lot to try to calm grandma down and explain to her that everything will be ok. Plus making the out of town/state phone calls, saying the baby is here but there's a problem and research on Cystic Fibrosis (of course never having heard of it) more less being able to even spell the damn thing! Now, fast forward 5 years, and Gillian is coming over to Aunt Lori's house (that would be me) tomorrow night to see my Christmas tree! Ain't life grand!

Loriz65 Aunt to Gillian 5 y/o w/cf

 

[loriz65]

I remember when my niece Gillian was born and diagnosed within 24 hours, my mother (her grandmother) was so afraid to see her in the NICU unit in fear that she was going to die that she sat in her car in the hospital parking lot! So here I am, sister of mommy of niece, trying to keep her in one piece after having the baby taken immediately to surgery and then going to the parking lot to try to calm grandma down and explain to her that everything will be ok. Plus making the out of town/state phone calls, saying the baby is here but there's a problem and research on Cystic Fibrosis (of course never having heard of it) more less being able to even spell the damn thing! Now, fast forward 5 years, and Gillian is coming over to Aunt Lori's house (that would be me) tomorrow night to see my Christmas tree! Ain't life grand!

Loriz65 Aunt to Gillian 5 y/o w/cf

 

[loriz65]

I remember when my niece Gillian was born and diagnosed within 24 hours, my mother (her grandmother) was so afraid to see her in the NICU unit in fear that she was going to die that she sat in her car in the hospital parking lot! So here I am, sister of mommy of niece, trying to keep her in one piece after having the baby taken immediately to surgery and then going to the parking lot to try to calm grandma down and explain to her that everything will be ok. Plus making the out of town/state phone calls, saying the baby is here but there's a problem and research on Cystic Fibrosis (of course never having heard of it) more less being able to even spell the damn thing! Now, fast forward 5 years, and Gillian is coming over to Aunt Lori's house (that would be me) tomorrow night to see my Christmas tree! Ain't life grand!

Loriz65 Aunt to Gillian 5 y/o w/cf

 

[kayleesgrandma]

The day I was in doctor's office and he said he was making an appt for the "sweat test", and I asked what for? That night at work I got on internet and found out what CF was. . . didn't come here for at least 5-6 months, was too much. It's hard for us grandparents. . .I hope you give these people space, but not too much. They need to shake it off and give support. It is a lot to go through all alone--you need your family.

 

[kayleesgrandma]

The day I was in doctor's office and he said he was making an appt for the "sweat test", and I asked what for? That night at work I got on internet and found out what CF was. . . didn't come here for at least 5-6 months, was too much. It's hard for us grandparents. . .I hope you give these people space, but not too much. They need to shake it off and give support. It is a lot to go through all alone--you need your family.

 

[kayleesgrandma]

The day I was in doctor's office and he said he was making an appt for the "sweat test", and I asked what for? That night at work I got on internet and found out what CF was. . . didn't come here for at least 5-6 months, was too much. It's hard for us grandparents. . .I hope you give these people space, but not too much. They need to shake it off and give support. It is a lot to go through all alone--you need your family.

 

[sweetwhite30]

yes i agree, everyone needs space upon learning a loved one has c.f. it took me 4 yrs to get here and be able to come on this forum and talk .For me i did not want no one around me or my son for 3 yrs of his life and it takes some longer then others to cope and deal with the entire c.f thing..

 

[sweetwhite30]

yes i agree, everyone needs space upon learning a loved one has c.f. it took me 4 yrs to get here and be able to come on this forum and talk .For me i did not want no one around me or my son for 3 yrs of his life and it takes some longer then others to cope and deal with the entire c.f thing..

 

[sweetwhite30]

yes i agree, everyone needs space upon learning a loved one has c.f. it took me 4 yrs to get here and be able to come on this forum and talk .For me i did not want no one around me or my son for 3 yrs of his life and it takes some longer then others to cope and deal with the entire c.f thing..

 

[Augustmom0003]

My mother in law told my husband she wants to be in denial. WANTS to be! WHO DOESN'T...but you have to put on your big girl panties and be a GROWN UP! Urrrrgh...don't even get me started...LOL!

 

[Augustmom0003]

My mother in law told my husband she wants to be in denial. WANTS to be! WHO DOESN'T...but you have to put on your big girl panties and be a GROWN UP! Urrrrgh...don't even get me started...LOL!

 

[Augustmom0003]

My mother in law told my husband she wants to be in denial. WANTS to be! WHO DOESN'T...but you have to put on your big girl panties and be a GROWN UP! Urrrrgh...don't even get me started...LOL!

 

[loriz65]

Please don't get me wrong, my mother finally snapped out of it a week or two later but was still very emotional. She was sincerely upset when Gillian was diagnosed but we all didn't fully understand what cf was anyway. All we saw was the first granddaughter of the family being rushed to surgery and given a label! Gillian was five years in the making and we all were very excited to have a baby girl. We were devastated beyond belief. It was so heart-wrenching! Here was a beautiful blue-eyed, strawberry blonde newborn being wisked away to be cut open. Gillian also remained in the hospital for 1 month post surgery too. Needle marks everywhere, iv's in her head, band-aid on her belly. I recall how excited we were when she pooped for the first time! I have never underestimated the power of poop ever since. I also recall her eating 5 cc's, and then 10 cc's, etc of formula. It was all a long time ago now so I guess I'm having a flash back. Gillian is now 5 years old, thriving and very healthy! Grandma still gets upset when she has a coughing fit or runny nose but I know for sure she would even if Gillian didn't have cf. Thanks for letting me ramble on!

Loriz65 Aunt to Gillian 5 y/o w/cf

P.S. I'm not saying our family has it any easier or harder than the next... I guess I'm just saying that the initial onset of denial and fear pissed me off!

 

[loriz65]

Please don't get me wrong, my mother finally snapped out of it a week or two later but was still very emotional. She was sincerely upset when Gillian was diagnosed but we all didn't fully understand what cf was anyway. All we saw was the first granddaughter of the family being rushed to surgery and given a label! Gillian was five years in the making and we all were very excited to have a baby girl. We were devastated beyond belief. It was so heart-wrenching! Here was a beautiful blue-eyed, strawberry blonde newborn being wisked away to be cut open. Gillian also remained in the hospital for 1 month post surgery too. Needle marks everywhere, iv's in her head, band-aid on her belly. I recall how excited we were when she pooped for the first time! I have never underestimated the power of poop ever since. I also recall her eating 5 cc's, and then 10 cc's, etc of formula. It was all a long time ago now so I guess I'm having a flash back. Gillian is now 5 years old, thriving and very healthy! Grandma still gets upset when she has a coughing fit or runny nose but I know for sure she would even if Gillian didn't have cf. Thanks for letting me ramble on!

Loriz65 Aunt to Gillian 5 y/o w/cf

P.S. I'm not saying our family has it any easier or harder than the next... I guess I'm just saying that the initial onset of denial and fear pissed me off!

 

[loriz65]

Please don't get me wrong, my mother finally snapped out of it a week or two later but was still very emotional. She was sincerely upset when Gillian was diagnosed but we all didn't fully understand what cf was anyway. All we saw was the first granddaughter of the family being rushed to surgery and given a label! Gillian was five years in the making and we all were very excited to have a baby girl. We were devastated beyond belief. It was so heart-wrenching! Here was a beautiful blue-eyed, strawberry blonde newborn being wisked away to be cut open. Gillian also remained in the hospital for 1 month post surgery too. Needle marks everywhere, iv's in her head, band-aid on her belly. I recall how excited we were when she pooped for the first time! I have never underestimated the power of poop ever since. I also recall her eating 5 cc's, and then 10 cc's, etc of formula. It was all a long time ago now so I guess I'm having a flash back. Gillian is now 5 years old, thriving and very healthy! Grandma still gets upset when she has a coughing fit or runny nose but I know for sure she would even if Gillian didn't have cf. Thanks for letting me ramble on!

Loriz65 Aunt to Gillian 5 y/o w/cf

P.S. I'm not saying our family has it any easier or harder than the next... I guess I'm just saying that the initial onset of denial and fear pissed me off!

 

[Mommafirst]

Amanda, I'm ROTFLMAO over the putting on your big girl panties statement.

I do not doubt that its hard on my parents and my ILs over my daughters diagnosis -- as much as its hard on any of the extended family around here. But like all the other caregivers around here, we are dealing with CF on a daily basis -- not when its convenient to step out of denial for a few minutes. We don't get the luxery of forgetting about CF, evey day we have to think about treatments, and germs, and doctor's appointments, and moving schedules in case of hospitalizations, etc. etc. I don't think its too much to ask the grandparents to do a little reading or seek some answers so that we don't have to add educating the immediate world to our daily tasks. My mother hasn't stopped trying to help, I just wish my MIL would take a little interest!