in response to post...to all CFers....please read
I wrote this on a different CF site months ago. I was upset with a post that someone wrote about the parents of CFers not knowing what it is like to have CF. After reading some of the resposes on the post "to all CFers" I want to share it with you all.
"Courtney has Cystic Fibrosis, her second sweat test came back high". These words changed my life! We were 800 miles away from home, no family around, and I was just told that my 10 year old daughter had a fatal disease. How do you digest this, how do you go on? After going outside of the hospital and having to make the dreaded phone calls to all of my family I can remember standing at the hospital room window and watching the cars and people go by. HOW DARE THE REST OF THE WORLD KEEP MOVING AND GOING WHEN MINE HAS COME TO A STANDSTILL! How do you go on knowing that you gave your precious child such a horrible disease!
After the doctors let you sit there for awhile with your mouth dropped open, and a blank stare on your face, a social worker then comes in to show you pics of others with CF, and make sure that you are handling the news okay. I still have the paperwork where the social worker wrote "mother shows appropriate grief". APPROPRIATE GRIEF!!! This is a person who has never been told that their child is ill.
Okay, so.....now that the shock has wore off, we now have to learn about all of the meds that Courtney will have to take. I am an EMT, but was overwhelmed with this! Albuterol, Flowvent, Vitamax, Aciphex, Enzymes, etc. When Courtney tried to take her first set of enzymes they were too big for her to swallow. I can remember being SO frustrated that I just wanted to run away! We are also told that since her CF clinic is in San Antonio, we will be regularly traveling 800 miles to have tune-ups.
NOW.....it is time to go home. We board the plane toting new bags full of medications, nebulizers, pamplets, etc. It is at this moment that I realize that I have 2 other children at home that do not realize that ALL of our lives are about to change. I now have to sit down and explain to my other children what has happened to Courtney. How do I do this when I barely understand it myself!?! So, I go online. This was one of the most devasting moment of my life!! Everything that I read said that my baby would be lucky to live to be 21. (Luckily I found wonderful groups like this that told me differently).
I did not realize that after we got home from the hospital, and I had a couple of moments to myself how angry I would be!! I was SO angry at everyone.... myself, Courtney's father, God, just about anyone that crossed my path. Two days after we got home someone told me "God makes everything happen for a reason". I was so mad that I yelled at her. I said "TELL ME, TELL ME THE REASON THAT GOD WOULD DO THIS TO MY FAMILY AND NOT YOURS!!!" This anger probably lasted a month or so. It took me awhile to make peace with myself, God, and the reason that it had happened to my precious Courtney.
Okay.....so now I have gotten over the shock and newness of it all. Now reality sits in. EVERYTHING has to change. Courtney's schooling, how the family eats, what if one of the other child gets sick? I am a working mother with a husband who runs his own business. Am I going to have to stop working? Will Courtney be okay around other kids that might have a cold? The first week after Courtney's diagnoses was so difficult. I didn't know what to do! Everything had changed so much in a matter of a week!
It has now been almost 2 years since those words were spoken to me. Of course, with time you learn to settle into your new life style. Courtney is now 12, and in the 7th grade. There are some kids at school that bully her because she is "different" than the rest of the kids, but she handles it well. It breaks my heart, but she does well with it.
Cystic Fibrosis does not just effect the person who has it. Our whole family changed 2 years ago! Everything from how we eat to getting a cold changed for ALL of us.
I can remember my mother saying " you will never understand until you have children of your own". This is SO true. I would do anything, and I mean ANYTHING to take this disease away from Courtney. The love you feel for your children is like no other feeling you will ever have. To say that we do not understand because we do not have the disease is incorrect. A mothers love feels everything for their child. I live with CF everyday.... ever doctors appointment, every cold, ever medical procedure, every hurt feeling because people think my daughter is different, every meal, every medications time, every nebulizer........and I could go on and on!
Please do not think that I am saying that I have it worse than someone with CF. This is not what I am trying to get at. I just hope that this post will let people know that parents of CF are just as imporant, and just as informed as the people with CF.
Seana
mom to Lauren, 14, no CF- Courtney, 12, with CF- Cameron,10, no CF
I wrote this on a different CF site months ago. I was upset with a post that someone wrote about the parents of CFers not knowing what it is like to have CF. After reading some of the resposes on the post "to all CFers" I want to share it with you all.
"Courtney has Cystic Fibrosis, her second sweat test came back high". These words changed my life! We were 800 miles away from home, no family around, and I was just told that my 10 year old daughter had a fatal disease. How do you digest this, how do you go on? After going outside of the hospital and having to make the dreaded phone calls to all of my family I can remember standing at the hospital room window and watching the cars and people go by. HOW DARE THE REST OF THE WORLD KEEP MOVING AND GOING WHEN MINE HAS COME TO A STANDSTILL! How do you go on knowing that you gave your precious child such a horrible disease!
After the doctors let you sit there for awhile with your mouth dropped open, and a blank stare on your face, a social worker then comes in to show you pics of others with CF, and make sure that you are handling the news okay. I still have the paperwork where the social worker wrote "mother shows appropriate grief". APPROPRIATE GRIEF!!! This is a person who has never been told that their child is ill.
Okay, so.....now that the shock has wore off, we now have to learn about all of the meds that Courtney will have to take. I am an EMT, but was overwhelmed with this! Albuterol, Flowvent, Vitamax, Aciphex, Enzymes, etc. When Courtney tried to take her first set of enzymes they were too big for her to swallow. I can remember being SO frustrated that I just wanted to run away! We are also told that since her CF clinic is in San Antonio, we will be regularly traveling 800 miles to have tune-ups.
NOW.....it is time to go home. We board the plane toting new bags full of medications, nebulizers, pamplets, etc. It is at this moment that I realize that I have 2 other children at home that do not realize that ALL of our lives are about to change. I now have to sit down and explain to my other children what has happened to Courtney. How do I do this when I barely understand it myself!?! So, I go online. This was one of the most devasting moment of my life!! Everything that I read said that my baby would be lucky to live to be 21. (Luckily I found wonderful groups like this that told me differently).
I did not realize that after we got home from the hospital, and I had a couple of moments to myself how angry I would be!! I was SO angry at everyone.... myself, Courtney's father, God, just about anyone that crossed my path. Two days after we got home someone told me "God makes everything happen for a reason". I was so mad that I yelled at her. I said "TELL ME, TELL ME THE REASON THAT GOD WOULD DO THIS TO MY FAMILY AND NOT YOURS!!!" This anger probably lasted a month or so. It took me awhile to make peace with myself, God, and the reason that it had happened to my precious Courtney.
Okay.....so now I have gotten over the shock and newness of it all. Now reality sits in. EVERYTHING has to change. Courtney's schooling, how the family eats, what if one of the other child gets sick? I am a working mother with a husband who runs his own business. Am I going to have to stop working? Will Courtney be okay around other kids that might have a cold? The first week after Courtney's diagnoses was so difficult. I didn't know what to do! Everything had changed so much in a matter of a week!
It has now been almost 2 years since those words were spoken to me. Of course, with time you learn to settle into your new life style. Courtney is now 12, and in the 7th grade. There are some kids at school that bully her because she is "different" than the rest of the kids, but she handles it well. It breaks my heart, but she does well with it.
Cystic Fibrosis does not just effect the person who has it. Our whole family changed 2 years ago! Everything from how we eat to getting a cold changed for ALL of us.
I can remember my mother saying " you will never understand until you have children of your own". This is SO true. I would do anything, and I mean ANYTHING to take this disease away from Courtney. The love you feel for your children is like no other feeling you will ever have. To say that we do not understand because we do not have the disease is incorrect. A mothers love feels everything for their child. I live with CF everyday.... ever doctors appointment, every cold, ever medical procedure, every hurt feeling because people think my daughter is different, every meal, every medications time, every nebulizer........and I could go on and on!
Please do not think that I am saying that I have it worse than someone with CF. This is not what I am trying to get at. I just hope that this post will let people know that parents of CF are just as imporant, and just as informed as the people with CF.
Seana
mom to Lauren, 14, no CF- Courtney, 12, with CF- Cameron,10, no CF