hi - new here

L

lilismom

Active member
Hi- my name is Sarah - my daughter Lili was diagnosed last April with CF and it has been a really rough year. She was hospitalized for 2 1/2 weeks when diagnosed and has been on various antibiotics for almost a year. On the positive side she is at a healthy weight for her age and doesn't mind the treatments. I am really trying to be positive but it seems like as soon as I get comfortable with everything something else comes up and it reminds me of how much CF sucks.
We went to a parent education day in Seattle recently and a therapist who spoke said something that really seemed right on for me about adjusting your expectations - A family planned a wonderful trip to Italy they were so excited to see the sights, eat the food and be in such a beautiful place. When the plane landed they were in Denmark, they all agreed that Denmark was a beautiful place but it's no Italy.
I'm having a hard time adjusting my expectations for our future.
Anyway, I just wanted to say Hi and I hope to meet you all online and really need people who understand all that having a child with CF means.
Sarah
 
L

lilismom

Active member
Hi- my name is Sarah - my daughter Lili was diagnosed last April with CF and it has been a really rough year. She was hospitalized for 2 1/2 weeks when diagnosed and has been on various antibiotics for almost a year. On the positive side she is at a healthy weight for her age and doesn't mind the treatments. I am really trying to be positive but it seems like as soon as I get comfortable with everything something else comes up and it reminds me of how much CF sucks.
We went to a parent education day in Seattle recently and a therapist who spoke said something that really seemed right on for me about adjusting your expectations - A family planned a wonderful trip to Italy they were so excited to see the sights, eat the food and be in such a beautiful place. When the plane landed they were in Denmark, they all agreed that Denmark was a beautiful place but it's no Italy.
I'm having a hard time adjusting my expectations for our future.
Anyway, I just wanted to say Hi and I hope to meet you all online and really need people who understand all that having a child with CF means.
Sarah
 
L

lilismom

Active member
Hi- my name is Sarah - my daughter Lili was diagnosed last April with CF and it has been a really rough year. She was hospitalized for 2 1/2 weeks when diagnosed and has been on various antibiotics for almost a year. On the positive side she is at a healthy weight for her age and doesn't mind the treatments. I am really trying to be positive but it seems like as soon as I get comfortable with everything something else comes up and it reminds me of how much CF sucks.
We went to a parent education day in Seattle recently and a therapist who spoke said something that really seemed right on for me about adjusting your expectations - A family planned a wonderful trip to Italy they were so excited to see the sights, eat the food and be in such a beautiful place. When the plane landed they were in Denmark, they all agreed that Denmark was a beautiful place but it's no Italy.
I'm having a hard time adjusting my expectations for our future.
Anyway, I just wanted to say Hi and I hope to meet you all online and really need people who understand all that having a child with CF means.
Sarah
 
J

JazzysMom

New member
Welcome, welcome! It is an adjustment especially when you have a time where things are just haywire. You will get a lot of support here....
 
J

JazzysMom

New member
Welcome, welcome! It is an adjustment especially when you have a time where things are just haywire. You will get a lot of support here....
 
J

JazzysMom

New member
Welcome, welcome! It is an adjustment especially when you have a time where things are just haywire. You will get a lot of support here....
 
G

grassisgreener

New member
Welcome to the board. It does take a while to adjust...even 3 years after my daughter's diagnosis I do sometimes wonder if I will every truly adjust. The first year was really hard on us but we have gotten more and more used to things and have started fighting the battle against CF not only be being proactive in her care but also by fundraising for the CFF.

Best Wishes!


WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.
 
G

grassisgreener

New member
Welcome to the board. It does take a while to adjust...even 3 years after my daughter's diagnosis I do sometimes wonder if I will every truly adjust. The first year was really hard on us but we have gotten more and more used to things and have started fighting the battle against CF not only be being proactive in her care but also by fundraising for the CFF.

Best Wishes!


WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.
 
G

grassisgreener

New member
Welcome to the board. It does take a while to adjust...even 3 years after my daughter's diagnosis I do sometimes wonder if I will every truly adjust. The first year was really hard on us but we have gotten more and more used to things and have started fighting the battle against CF not only be being proactive in her care but also by fundraising for the CFF.

Best Wishes!


WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.
 
M

mommy2cass

New member
Hi Sarah, I just want to say Hi and tell you that I have days with those feelings too. Our daughter was diagnosised when she was 3wks old and the first year was definatly the hardest. I really think this is a great place to come for information and support.
 
M

mommy2cass

New member
Hi Sarah, I just want to say Hi and tell you that I have days with those feelings too. Our daughter was diagnosised when she was 3wks old and the first year was definatly the hardest. I really think this is a great place to come for information and support.
 
M

mommy2cass

New member
Hi Sarah, I just want to say Hi and tell you that I have days with those feelings too. Our daughter was diagnosised when she was 3wks old and the first year was definatly the hardest. I really think this is a great place to come for information and support.
 
M

Mommafirst

Guest
Hi Sarah, Welcome!!

My daughter was diagnosed late last June, and I'm still longing for Italy too!! I'm sorry you had a tough year. Ours was tougher than the doctor's had expected, but all-in-all could have been worse (trying to keep perspective). I'm sure you will appreciate the people on this site, I have found unending information and support.
 
M

Mommafirst

Guest
Hi Sarah, Welcome!!

My daughter was diagnosed late last June, and I'm still longing for Italy too!! I'm sorry you had a tough year. Ours was tougher than the doctor's had expected, but all-in-all could have been worse (trying to keep perspective). I'm sure you will appreciate the people on this site, I have found unending information and support.
 
M

Mommafirst

Guest
Hi Sarah, Welcome!!

My daughter was diagnosed late last June, and I'm still longing for Italy too!! I'm sorry you had a tough year. Ours was tougher than the doctor's had expected, but all-in-all could have been worse (trying to keep perspective). I'm sure you will appreciate the people on this site, I have found unending information and support.
 
M

Mommafirst

Guest
Hi Sarah, Welcome!!

My daughter was diagnosed late last June, and I'm still longing for Italy too!! I'm sorry you had a tough year. Ours was tougher than the doctor's had expected, but all-in-all could have been worse (trying to keep perspective). I'm sure you will appreciate the people on this site, I have found unending information and support.
 
M

Mommafirst

Guest
Hi Sarah, Welcome!!

My daughter was diagnosed late last June, and I'm still longing for Italy too!! I'm sorry you had a tough year. Ours was tougher than the doctor's had expected, but all-in-all could have been worse (trying to keep perspective). I'm sure you will appreciate the people on this site, I have found unending information and support.
 
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