feeling really alone in this

R

Ratatosk

Administrator
Staff member
I'm so sorry. I went through similar worries with DS when he was a baby -- worried about the what ifs, weight.. Don't know how many times I gritted my teeth and smiled while trying to feed him a bottle while saying over and over "mealtimes are HAPPY times" like a crazed stepford wife. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Still worry to a certain extent -- some days my head just spins. With each new milestone -- first cold, switching to whole milk, travel, new medications, treatments --- we felt a little more confident.

Today DS is a busy 6 year old who for the most part is pretty happy go lucky, always on the go. My current worry is his starting kindergarten. He's thrilled and I'm stressed, but putting on that happy face stepford wife again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I'm so sorry. I went through similar worries with DS when he was a baby -- worried about the what ifs, weight.. Don't know how many times I gritted my teeth and smiled while trying to feed him a bottle while saying over and over "mealtimes are HAPPY times" like a crazed stepford wife. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Still worry to a certain extent -- some days my head just spins. With each new milestone -- first cold, switching to whole milk, travel, new medications, treatments --- we felt a little more confident.

Today DS is a busy 6 year old who for the most part is pretty happy go lucky, always on the go. My current worry is his starting kindergarten. He's thrilled and I'm stressed, but putting on that happy face stepford wife again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I'm so sorry. I went through similar worries with DS when he was a baby -- worried about the what ifs, weight.. Don't know how many times I gritted my teeth and smiled while trying to feed him a bottle while saying over and over "mealtimes are HAPPY times" like a crazed stepford wife. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Still worry to a certain extent -- some days my head just spins. With each new milestone -- first cold, switching to whole milk, travel, new medications, treatments --- we felt a little more confident.

Today DS is a busy 6 year old who for the most part is pretty happy go lucky, always on the go. My current worry is his starting kindergarten. He's thrilled and I'm stressed, but putting on that happy face stepford wife again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I'm so sorry. I went through similar worries with DS when he was a baby -- worried about the what ifs, weight.. Don't know how many times I gritted my teeth and smiled while trying to feed him a bottle while saying over and over "mealtimes are HAPPY times" like a crazed stepford wife. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Still worry to a certain extent -- some days my head just spins. With each new milestone -- first cold, switching to whole milk, travel, new medications, treatments --- we felt a little more confident.

Today DS is a busy 6 year old who for the most part is pretty happy go lucky, always on the go. My current worry is his starting kindergarten. He's thrilled and I'm stressed, but putting on that happy face stepford wife again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
I'm so sorry. I went through similar worries with DS when he was a baby -- worried about the what ifs, weight.. Don't know how many times I gritted my teeth and smiled while trying to feed him a bottle while saying over and over "mealtimes are HAPPY times" like a crazed stepford wife. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Still worry to a certain extent -- some days my head just spins. With each new milestone -- first cold, switching to whole milk, travel, new medications, treatments --- we felt a little more confident.
<br />
<br />Today DS is a busy 6 year old who for the most part is pretty happy go lucky, always on the go. My current worry is his starting kindergarten. He's thrilled and I'm stressed, but putting on that happy face stepford wife again. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jillgnelson

New member
Thank you all for your support and encouragement. I was kind of scared to come on here, but I knew that it would probably help me feel less isolated. I think one of the things that's frustrating about CF is that CFers can't have contact with one another. It would be so great to get together with other parents, but I guess that's why this forum is so important.
I hope that someday I can provide the same support and encouragement to another CF parent that you are providing for me.
 
J

jillgnelson

New member
Thank you all for your support and encouragement. I was kind of scared to come on here, but I knew that it would probably help me feel less isolated. I think one of the things that's frustrating about CF is that CFers can't have contact with one another. It would be so great to get together with other parents, but I guess that's why this forum is so important.
I hope that someday I can provide the same support and encouragement to another CF parent that you are providing for me.
 
J

jillgnelson

New member
Thank you all for your support and encouragement. I was kind of scared to come on here, but I knew that it would probably help me feel less isolated. I think one of the things that's frustrating about CF is that CFers can't have contact with one another. It would be so great to get together with other parents, but I guess that's why this forum is so important.
I hope that someday I can provide the same support and encouragement to another CF parent that you are providing for me.
 
J

jillgnelson

New member
Thank you all for your support and encouragement. I was kind of scared to come on here, but I knew that it would probably help me feel less isolated. I think one of the things that's frustrating about CF is that CFers can't have contact with one another. It would be so great to get together with other parents, but I guess that's why this forum is so important.
I hope that someday I can provide the same support and encouragement to another CF parent that you are providing for me.
 
J

jillgnelson

New member
Thank you all for your support and encouragement. I was kind of scared to come on here, but I knew that it would probably help me feel less isolated. I think one of the things that's frustrating about CF is that CFers can't have contact with one another. It would be so great to get together with other parents, but I guess that's why this forum is so important.
<br />I hope that someday I can provide the same support and encouragement to another CF parent that you are providing for me.
 
M

Mommafirst

Guest
Cf is definitely an isolating disease. But we parents need each other -- an the CF patients need each other as well. That is why I come here, because its amazing to not feel so alone in all of this.

Please hang in there. The first six months or year post diagnosis are really the hardest. It does get easier to manage. As your son gets bigger and stronger you will see a bit better how you can cope with this all. No question CF sucks, so I'm not saying its a walk in the park -- but the good days will certainly outnumber the bad ones. (((HUGS)))
 
M

Mommafirst

Guest
Cf is definitely an isolating disease. But we parents need each other -- an the CF patients need each other as well. That is why I come here, because its amazing to not feel so alone in all of this.

Please hang in there. The first six months or year post diagnosis are really the hardest. It does get easier to manage. As your son gets bigger and stronger you will see a bit better how you can cope with this all. No question CF sucks, so I'm not saying its a walk in the park -- but the good days will certainly outnumber the bad ones. (((HUGS)))
 
M

Mommafirst

Guest
Cf is definitely an isolating disease. But we parents need each other -- an the CF patients need each other as well. That is why I come here, because its amazing to not feel so alone in all of this.

Please hang in there. The first six months or year post diagnosis are really the hardest. It does get easier to manage. As your son gets bigger and stronger you will see a bit better how you can cope with this all. No question CF sucks, so I'm not saying its a walk in the park -- but the good days will certainly outnumber the bad ones. (((HUGS)))
 
M

Mommafirst

Guest
Cf is definitely an isolating disease. But we parents need each other -- an the CF patients need each other as well. That is why I come here, because its amazing to not feel so alone in all of this.

Please hang in there. The first six months or year post diagnosis are really the hardest. It does get easier to manage. As your son gets bigger and stronger you will see a bit better how you can cope with this all. No question CF sucks, so I'm not saying its a walk in the park -- but the good days will certainly outnumber the bad ones. (((HUGS)))
 
M

Mommafirst

Guest
Cf is definitely an isolating disease. But we parents need each other -- an the CF patients need each other as well. That is why I come here, because its amazing to not feel so alone in all of this.
<br />
<br />Please hang in there. The first six months or year post diagnosis are really the hardest. It does get easier to manage. As your son gets bigger and stronger you will see a bit better how you can cope with this all. No question CF sucks, so I'm not saying its a walk in the park -- but the good days will certainly outnumber the bad ones. (((HUGS)))
 
N

NancyLKF

New member
My 6 month old has CF and that has made me feel very alone at times. I can't imagine what you are going through with the additional health concerns. I do understand about the husband/therapist... I'm in the same boat but am lucky to have my mother only a few minutes away. As far as insurance goes, if you are moving to a different state, check with the state government programs. Here in Vermont we have a Children with Special Health Needs program and it covers CF. All of Maggie's CF related care is covered. All we pay is a $385 yearly deductible.
 
N

NancyLKF

New member
My 6 month old has CF and that has made me feel very alone at times. I can't imagine what you are going through with the additional health concerns. I do understand about the husband/therapist... I'm in the same boat but am lucky to have my mother only a few minutes away. As far as insurance goes, if you are moving to a different state, check with the state government programs. Here in Vermont we have a Children with Special Health Needs program and it covers CF. All of Maggie's CF related care is covered. All we pay is a $385 yearly deductible.
 
N

NancyLKF

New member
My 6 month old has CF and that has made me feel very alone at times. I can't imagine what you are going through with the additional health concerns. I do understand about the husband/therapist... I'm in the same boat but am lucky to have my mother only a few minutes away. As far as insurance goes, if you are moving to a different state, check with the state government programs. Here in Vermont we have a Children with Special Health Needs program and it covers CF. All of Maggie's CF related care is covered. All we pay is a $385 yearly deductible.
 
N

NancyLKF

New member
My 6 month old has CF and that has made me feel very alone at times. I can't imagine what you are going through with the additional health concerns. I do understand about the husband/therapist... I'm in the same boat but am lucky to have my mother only a few minutes away. As far as insurance goes, if you are moving to a different state, check with the state government programs. Here in Vermont we have a Children with Special Health Needs program and it covers CF. All of Maggie's CF related care is covered. All we pay is a $385 yearly deductible.
 
N

NancyLKF

New member
My 6 month old has CF and that has made me feel very alone at times. I can't imagine what you are going through with the additional health concerns. I do understand about the husband/therapist... I'm in the same boat but am lucky to have my mother only a few minutes away. As far as insurance goes, if you are moving to a different state, check with the state government programs. Here in Vermont we have a Children with Special Health Needs program and it covers CF. All of Maggie's CF related care is covered. All we pay is a $385 yearly deductible.
 
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