Samantha Schut - de Zoete
Samantha Schut - de Zoete : The Why & How...
22/08/10 07:47
Dear blog readers,
My name is Sam. I am a member of the board of directors of Sharktank and as Melanie is super busy doing her CF magic, she asked us to 'write something' for the blog. I thought, no problem... but it wasn't as easy as I thought it would be. It's weird to write your story to 'readers'. But here goes....
So my name is Sam (or actually it is Samantha, but people that know me only use that when they are angry at me, so I prefer Sam). I'm a 40 year old mom of a little boy that has CF and his older sister that doesn't have CF and I'm married to a lovely crazy man. Almost two years ago, our son was diagnosed with CF. He was a little over 2 years old at the time. He was diagnosed because of malabsorption, we really had no clue at all that it would be CF. He never had any lung problems, he wasn't even underweight! He just had oily stools. Well, it turned out to be CF...... of course I was devastated. Soon after that, I had such an urge to learn all there was to learn about CF. Maybe because I felt so out of control, so powerless. Maybe I felt like the knowledge would give me back some feeling of control. I don't know. Maybe I'm just someone that likes to learn..... though I wish it would have been another subject. Anyway, I wanted to know everything there was to know and pretty soon after the diagnosis I started studying this disease on the internet. I read about all kinds of supplements that might be helpful in this disease and wanted to know as much as possible.
Though I am a member of other message boards, after about a year or so, I was looking for more in depth information. Trying to untangle the web of research into something palatable for me and I found Sharktank.
I am not a doctor or anything like that. Though I am a certified speech pathologist and therapist, I have mostly worked in sales (yeah...I know....weird). When my kids were born, I became a full time mom. (English is not my first language so please excuse me if my grammar or spelling are a little off sometimes)
When I found Sharktank on yahoo groups I felt such relief! (haha....that sounds like a cheap advertisement..... but it's true, so I'll write it anyway). Exactly the group of people I was looking for. People that want to learn as much as possible and together try to find something to help change to course of this disease. Whatever we can do to put the breaks on CF, stop it or maybe even undo some of the damage. I told myself I wasn't here to make friends, that I didn't need emotional support, that I just wanted to learn about CF and possible ways to help my son. I was wrong about that, but I'll tell you more about that later.
What happens on the Sharktank yahoo group? Someone will post for example an interesting article they bumped into, while doing some research of their own. This will get a ball rolling. Someone else who is interested, will look into the subject further and maybe post another research article, related to the first one. Another member will comment... etc. etc. Same as on any message board, just a little more research related, but not always.
Since I've only been dealing with this for less than 2 years, I don't have a lot of experience with CF, so I thought I'd just read and learn. I didn't think I would be able to add much.
Since they had already come so far in their research at the time I joined the group, I took me quite some time to get up to par (to be honest, I'm still not fully there). I always get completely lost in my search adventures. I look up one thing, notice another, start searching for more on that, find something else. By the time I'm half asleep on top of my keyboard, I can't even remember what my original search was about. It's very easy to get lost in all the information that is out there. But some of the members of Sharktank have been at it for over 10 years now and they have a way better sense of direction than I do. So I joined them in their search. Trying to find connections in the research articles that are out there and it makes it all a lot clearer. For the ones on edge about BITC. I study BITC too. Trying to dig up as much on the subject as I can, forwarding everything to Melanie. I'm never sure if she's seen it or not, so now we agreed I'd just forward everything to her. I am doing the best I can.
When do I do this? Almost every night I start at around 9 or 9.30pm. Sometimes I'm on to something and can't wait until the evening to get my laptop at night and start searching again... I end up going to bed too late every night. I also study (I call it studying) with my morning coffee (I need about 4 of those before I can wake up) and during my morning break... etc. etc. I don't have a good system in my computer to get all the research organized, so many times when I see something interesting I print it. There are printed research abstracts all over the house.... Almost every horizontal space in the house is covered with either the kids' arts & crafts mess or research articles. After a while I get them together and start filing (the research articles), of course I'll read them all again, see more interesting stuff somewhere along the way and start another search on my computer.... leaving piles of paper un-filed again.... I always feel like both the days and the nights are too short...... (at night I don't want to go to sleep and in the morning I don't want to get up.....)
Why do I do all this? To help my little boy. To help him now and to help him in the future and hopefully somewhere in the process help others out there that have to deal with CF as well. I have to do this. I'm his mother and I have brains and some energy left somewhere every day to do this. I can't watch television, while I could be looking for ways to help him.... I just can't. I do this while trying to keep a balance in our family of fun and happiness. It's not easy, but I don't need easy. I need to do something.
Okay, I don't have much of a life beyond my family and studying CF. Of course I have my friends and other family etc. But it's hard to communicate with them about the things that are really on my mind. But I have my CF family..... the Sharktank group. I never joined with that intention, but it just turned out to be that way. Them just being there, always ready to help, commenting on my concerns, giving me advice on what to do, answering so many questions for me. All CF related, but when I think about what that means to me, it is so much more than just CF information. I value the people out there so much, because it is not just getting my questions answered. It is knowing that we are all in the same boat, we are all dealing with the same fears, we are all dealing with something that many others just don't know anything about. Of course I don't know if everyone on the group feels that way. But it is my experience, and though born out of desperation it has become a good experience. One I never thought I'd have. So thank you, all members out there, for being there and hitting that 'reply' button once in a while. Not only do I learn so much from all of you, it really makes me feel better too.
Enough about me.... let's get back to work!
Sam
My name is Sam. I am a member of the board of directors of Sharktank and as Melanie is super busy doing her CF magic, she asked us to 'write something' for the blog. I thought, no problem... but it wasn't as easy as I thought it would be. It's weird to write your story to 'readers'. But here goes....
So my name is Sam (or actually it is Samantha, but people that know me only use that when they are angry at me, so I prefer Sam). I'm a 40 year old mom of a little boy that has CF and his older sister that doesn't have CF and I'm married to a lovely crazy man. Almost two years ago, our son was diagnosed with CF. He was a little over 2 years old at the time. He was diagnosed because of malabsorption, we really had no clue at all that it would be CF. He never had any lung problems, he wasn't even underweight! He just had oily stools. Well, it turned out to be CF...... of course I was devastated. Soon after that, I had such an urge to learn all there was to learn about CF. Maybe because I felt so out of control, so powerless. Maybe I felt like the knowledge would give me back some feeling of control. I don't know. Maybe I'm just someone that likes to learn..... though I wish it would have been another subject. Anyway, I wanted to know everything there was to know and pretty soon after the diagnosis I started studying this disease on the internet. I read about all kinds of supplements that might be helpful in this disease and wanted to know as much as possible.
Though I am a member of other message boards, after about a year or so, I was looking for more in depth information. Trying to untangle the web of research into something palatable for me and I found Sharktank.
I am not a doctor or anything like that. Though I am a certified speech pathologist and therapist, I have mostly worked in sales (yeah...I know....weird). When my kids were born, I became a full time mom. (English is not my first language so please excuse me if my grammar or spelling are a little off sometimes)
When I found Sharktank on yahoo groups I felt such relief! (haha....that sounds like a cheap advertisement..... but it's true, so I'll write it anyway). Exactly the group of people I was looking for. People that want to learn as much as possible and together try to find something to help change to course of this disease. Whatever we can do to put the breaks on CF, stop it or maybe even undo some of the damage. I told myself I wasn't here to make friends, that I didn't need emotional support, that I just wanted to learn about CF and possible ways to help my son. I was wrong about that, but I'll tell you more about that later.
What happens on the Sharktank yahoo group? Someone will post for example an interesting article they bumped into, while doing some research of their own. This will get a ball rolling. Someone else who is interested, will look into the subject further and maybe post another research article, related to the first one. Another member will comment... etc. etc. Same as on any message board, just a little more research related, but not always.
Since I've only been dealing with this for less than 2 years, I don't have a lot of experience with CF, so I thought I'd just read and learn. I didn't think I would be able to add much.
Since they had already come so far in their research at the time I joined the group, I took me quite some time to get up to par (to be honest, I'm still not fully there). I always get completely lost in my search adventures. I look up one thing, notice another, start searching for more on that, find something else. By the time I'm half asleep on top of my keyboard, I can't even remember what my original search was about. It's very easy to get lost in all the information that is out there. But some of the members of Sharktank have been at it for over 10 years now and they have a way better sense of direction than I do. So I joined them in their search. Trying to find connections in the research articles that are out there and it makes it all a lot clearer. For the ones on edge about BITC. I study BITC too. Trying to dig up as much on the subject as I can, forwarding everything to Melanie. I'm never sure if she's seen it or not, so now we agreed I'd just forward everything to her. I am doing the best I can.
When do I do this? Almost every night I start at around 9 or 9.30pm. Sometimes I'm on to something and can't wait until the evening to get my laptop at night and start searching again... I end up going to bed too late every night. I also study (I call it studying) with my morning coffee (I need about 4 of those before I can wake up) and during my morning break... etc. etc. I don't have a good system in my computer to get all the research organized, so many times when I see something interesting I print it. There are printed research abstracts all over the house.... Almost every horizontal space in the house is covered with either the kids' arts & crafts mess or research articles. After a while I get them together and start filing (the research articles), of course I'll read them all again, see more interesting stuff somewhere along the way and start another search on my computer.... leaving piles of paper un-filed again.... I always feel like both the days and the nights are too short...... (at night I don't want to go to sleep and in the morning I don't want to get up.....)
Why do I do all this? To help my little boy. To help him now and to help him in the future and hopefully somewhere in the process help others out there that have to deal with CF as well. I have to do this. I'm his mother and I have brains and some energy left somewhere every day to do this. I can't watch television, while I could be looking for ways to help him.... I just can't. I do this while trying to keep a balance in our family of fun and happiness. It's not easy, but I don't need easy. I need to do something.
Okay, I don't have much of a life beyond my family and studying CF. Of course I have my friends and other family etc. But it's hard to communicate with them about the things that are really on my mind. But I have my CF family..... the Sharktank group. I never joined with that intention, but it just turned out to be that way. Them just being there, always ready to help, commenting on my concerns, giving me advice on what to do, answering so many questions for me. All CF related, but when I think about what that means to me, it is so much more than just CF information. I value the people out there so much, because it is not just getting my questions answered. It is knowing that we are all in the same boat, we are all dealing with the same fears, we are all dealing with something that many others just don't know anything about. Of course I don't know if everyone on the group feels that way. But it is my experience, and though born out of desperation it has become a good experience. One I never thought I'd have. So thank you, all members out there, for being there and hitting that 'reply' button once in a while. Not only do I learn so much from all of you, it really makes me feel better too.
Enough about me.... let's get back to work!
Sam