Thank god Zach has been healthy his entire life only in the hospital twice. The first time was when he was diagnoised and the secong was when he was six months old and got a lung infection. Other than that his doctors at the CF clinic say they have never seen a child so healthy. He is absoultly the light in my life and without a doubt he will always be no matter how old he gets. I hope he outlives me. This place is good therapy for the soul. Ifeel like being in a room surrounded by good people. I just wanted to say thanks to everyone. Teri i will take you up on that convo soon.
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A mom feeling alone and isolated
- Thread starter rachelsmom
- Start date
Thank god Zach has been healthy his entire life only in the hospital twice. The first time was when he was diagnoised and the secong was when he was six months old and got a lung infection. Other than that his doctors at the CF clinic say they have never seen a child so healthy. He is absoultly the light in my life and without a doubt he will always be no matter how old he gets. I hope he outlives me. This place is good therapy for the soul. Ifeel like being in a room surrounded by good people. I just wanted to say thanks to everyone. Teri i will take you up on that convo soon.
rachelsmom
New member
No we go to Cincinnati Childrens Hospital. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Teri
Teri
rachelsmom
New member
No we go to Cincinnati Childrens Hospital. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Teri
Teri
Hi,
I acknowledge that often there are spouses don't contribute much to child care.
But I must say after 13 years of being a single parent to a child with CF - it gets harder and harder as time goes on and your child's disease requires more followup/medical care. This is particularly true if you work full-time. Most companies don't provide enough vacation time to cover all the appointments, hospitalizations, etc.
Good luck!
I acknowledge that often there are spouses don't contribute much to child care.
But I must say after 13 years of being a single parent to a child with CF - it gets harder and harder as time goes on and your child's disease requires more followup/medical care. This is particularly true if you work full-time. Most companies don't provide enough vacation time to cover all the appointments, hospitalizations, etc.
Good luck!
Hi,
I acknowledge that often there are spouses don't contribute much to child care.
But I must say after 13 years of being a single parent to a child with CF - it gets harder and harder as time goes on and your child's disease requires more followup/medical care. This is particularly true if you work full-time. Most companies don't provide enough vacation time to cover all the appointments, hospitalizations, etc.
Good luck!
I acknowledge that often there are spouses don't contribute much to child care.
But I must say after 13 years of being a single parent to a child with CF - it gets harder and harder as time goes on and your child's disease requires more followup/medical care. This is particularly true if you work full-time. Most companies don't provide enough vacation time to cover all the appointments, hospitalizations, etc.
Good luck!
NoDayButToday
New member
<blockquote>Quote<br><hr>i was in your place 21months ago the only difference is i'm married i think its just as hard you will be fine and able to do what ever it takes to get thru the bad and move on to the good kepp posting there is allot of help out there. <hr></blockquote>
While it goes without saying that there's no CF parent whose life is not hard because of having a CF child, I have to say that there is another degree of challenge in being a single parent of a CF kid. You are the only emotional caregiver, financial provider, doctor appointment attender; the only person to stay overnight in the hospital, the only person who ever does CPT and sets up aerosols, the only person who nags to take enzymes, picks up meds at the pharmacy, administers home IVs- the list goes on and on.
Also, most spouses rely tremendously on each other and after a bad day can sit down a cry to each other. A single parent has no one to confide in who will understand, not another person who really understands how upset and frustrated they are that it is their child who is sick. They certainly cannot share their fears with a child; quite the opposite actually- they have to show a positive facade for their child.
My mother has gone it alone for 13 years, and there is no doubt in my mind that her life would be easier to handle if she had a spouse around.
While it goes without saying that there's no CF parent whose life is not hard because of having a CF child, I have to say that there is another degree of challenge in being a single parent of a CF kid. You are the only emotional caregiver, financial provider, doctor appointment attender; the only person to stay overnight in the hospital, the only person who ever does CPT and sets up aerosols, the only person who nags to take enzymes, picks up meds at the pharmacy, administers home IVs- the list goes on and on.
Also, most spouses rely tremendously on each other and after a bad day can sit down a cry to each other. A single parent has no one to confide in who will understand, not another person who really understands how upset and frustrated they are that it is their child who is sick. They certainly cannot share their fears with a child; quite the opposite actually- they have to show a positive facade for their child.
My mother has gone it alone for 13 years, and there is no doubt in my mind that her life would be easier to handle if she had a spouse around.
NoDayButToday
New member
<blockquote>Quote<br><hr>i was in your place 21months ago the only difference is i'm married i think its just as hard you will be fine and able to do what ever it takes to get thru the bad and move on to the good kepp posting there is allot of help out there. <hr></blockquote>
While it goes without saying that there's no CF parent whose life is not hard because of having a CF child, I have to say that there is another degree of challenge in being a single parent of a CF kid. You are the only emotional caregiver, financial provider, doctor appointment attender; the only person to stay overnight in the hospital, the only person who ever does CPT and sets up aerosols, the only person who nags to take enzymes, picks up meds at the pharmacy, administers home IVs- the list goes on and on.
Also, most spouses rely tremendously on each other and after a bad day can sit down a cry to each other. A single parent has no one to confide in who will understand, not another person who really understands how upset and frustrated they are that it is their child who is sick. They certainly cannot share their fears with a child; quite the opposite actually- they have to show a positive facade for their child.
My mother has gone it alone for 13 years, and there is no doubt in my mind that her life would be easier to handle if she had a spouse around.
While it goes without saying that there's no CF parent whose life is not hard because of having a CF child, I have to say that there is another degree of challenge in being a single parent of a CF kid. You are the only emotional caregiver, financial provider, doctor appointment attender; the only person to stay overnight in the hospital, the only person who ever does CPT and sets up aerosols, the only person who nags to take enzymes, picks up meds at the pharmacy, administers home IVs- the list goes on and on.
Also, most spouses rely tremendously on each other and after a bad day can sit down a cry to each other. A single parent has no one to confide in who will understand, not another person who really understands how upset and frustrated they are that it is their child who is sick. They certainly cannot share their fears with a child; quite the opposite actually- they have to show a positive facade for their child.
My mother has gone it alone for 13 years, and there is no doubt in my mind that her life would be easier to handle if she had a spouse around.
rachelsmom
New member
Well thanks a lot you just succeeded in making me cry<img src="i/expressions/face-icon-small-wink.gif" border="0"> That is absolutely exactly the way I feel to a tee. Your mom is very lucky to have such an insightful child. There is nothing harder than watching your child suffer even a little and there is no one to share that with. There are friends and family you can talk to but CF is hard disease for people to understand. Only those of us who go through it understand.
Dont get me wrong I have a great life and wouldnt trade it for the world. I feel very blessed to have the child I do and we have a lot of good days but I am soooo glad to have all of you to talk to and chat with. This sight has been a godsend for me.
Thanks for listening and I appreciate your words of understanding.
Teri<img src="i/expressions/sun.gif" border="0">
Dont get me wrong I have a great life and wouldnt trade it for the world. I feel very blessed to have the child I do and we have a lot of good days but I am soooo glad to have all of you to talk to and chat with. This sight has been a godsend for me.
Thanks for listening and I appreciate your words of understanding.
Teri<img src="i/expressions/sun.gif" border="0">
rachelsmom
New member
Well thanks a lot you just succeeded in making me cry<img src="i/expressions/face-icon-small-wink.gif" border="0"> That is absolutely exactly the way I feel to a tee. Your mom is very lucky to have such an insightful child. There is nothing harder than watching your child suffer even a little and there is no one to share that with. There are friends and family you can talk to but CF is hard disease for people to understand. Only those of us who go through it understand.
Dont get me wrong I have a great life and wouldnt trade it for the world. I feel very blessed to have the child I do and we have a lot of good days but I am soooo glad to have all of you to talk to and chat with. This sight has been a godsend for me.
Thanks for listening and I appreciate your words of understanding.
Teri<img src="i/expressions/sun.gif" border="0">
Dont get me wrong I have a great life and wouldnt trade it for the world. I feel very blessed to have the child I do and we have a lot of good days but I am soooo glad to have all of you to talk to and chat with. This sight has been a godsend for me.
Thanks for listening and I appreciate your words of understanding.
Teri<img src="i/expressions/sun.gif" border="0">
I have only one comment. Love, Squeeze and Hug them each and every day. My wife and I has to say goodbye to one on the most beautiful blessings given to us - Our daughter, on July 4th 2003, she and the Good LORD decided there were other things for her to accomplish and she went home. We Love and Miss you Sweetheart. Love them, squeeze them hug them each and every opportunity you get, They're Special. From a Lonely Dad
I have only one comment. Love, Squeeze and Hug them each and every day. My wife and I has to say goodbye to one on the most beautiful blessings given to us - Our daughter, on July 4th 2003, she and the Good LORD decided there were other things for her to accomplish and she went home. We Love and Miss you Sweetheart. Love them, squeeze them hug them each and every opportunity you get, They're Special. From a Lonely Dad
I am so sorry for your loss. Being the mother of a daughter with CF I can only imagine how awful that must be.
My prayers and thoughts are with you and your advice is perfect. That is all any of us can do is love them more than anything, do their treatments and have good faith in the Lord above that he will lead and do what is right.
Take care and God Bless,
Teri
My prayers and thoughts are with you and your advice is perfect. That is all any of us can do is love them more than anything, do their treatments and have good faith in the Lord above that he will lead and do what is right.
Take care and God Bless,
Teri
I am so sorry for your loss. Being the mother of a daughter with CF I can only imagine how awful that must be.
My prayers and thoughts are with you and your advice is perfect. That is all any of us can do is love them more than anything, do their treatments and have good faith in the Lord above that he will lead and do what is right.
Take care and God Bless,
Teri
My prayers and thoughts are with you and your advice is perfect. That is all any of us can do is love them more than anything, do their treatments and have good faith in the Lord above that he will lead and do what is right.
Take care and God Bless,
Teri
I know you will probably think i cannot speak as i am a sister of someone with cf. My little sister is now 16 and has been diagnosed since she was 3. My mum i am sure feel s like you on a regular basis! My mum does not have a full time job as my sister needs full time care-my mum tried to do some cleaning for the neighbours but rarely gets time to do it. My mum says exactly what you said in your last line she feels older than her age! Please don't think that you cannot manage-you are doing the very best that you can do and that is all you can do! Some people might think you should do one thing or another but you have to do what you think is right in your heart.
Keep taking every day as a new start and enjoy every moment with your daughter-live for the now and not in the 'what if?'
Take care and best of luck.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Keep taking every day as a new start and enjoy every moment with your daughter-live for the now and not in the 'what if?'
Take care and best of luck.<img src="i/expressions/face-icon-small-smile.gif" border="0">
I know you will probably think i cannot speak as i am a sister of someone with cf. My little sister is now 16 and has been diagnosed since she was 3. My mum i am sure feel s like you on a regular basis! My mum does not have a full time job as my sister needs full time care-my mum tried to do some cleaning for the neighbours but rarely gets time to do it. My mum says exactly what you said in your last line she feels older than her age! Please don't think that you cannot manage-you are doing the very best that you can do and that is all you can do! Some people might think you should do one thing or another but you have to do what you think is right in your heart.
Keep taking every day as a new start and enjoy every moment with your daughter-live for the now and not in the 'what if?'
Take care and best of luck.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Keep taking every day as a new start and enjoy every moment with your daughter-live for the now and not in the 'what if?'
Take care and best of luck.<img src="i/expressions/face-icon-small-smile.gif" border="0">