Provoking Thread

anonymous · Sep 19, 2006

in response to some other posts from children who have parents with cf i would like to enter my own response based on my own experience with my mom.

it's difficult to say what effects it has had on my life but i also don't think it has had any truly negative impact on me. it presents challenges and like other things you can learn from it and to a certain extent move on; however, this is not something that moves on and so it has to be something you accept and enjoy all other aspects of life which present themselves wonderfully and often.

in many ways i think our family is closer and we learn the value of each other and appreciate everything we do. not all the times are particularly fun but why bother making any situation negative? when my mom is in the hospital it sucks but we enjoy visiting and spend as much time with her as possible. i also agree that kids are affected differently depending on where parents health lies at birth and how it progresses.

it becomes something an entire family is involved in and makes us stronger as we jump over higher hurdles each time. we do the best we can and we enjoy every minute of it. bring on the rest and we'll enjoy each other's company even more...

-w

Jem · Sep 19, 2006

Here is my
experience with being a mom with cf to three
children.

When I was 19 I had my
left upper lobe removed due to chronic bleeding. I married at 22
and then gave birth to my children when I was 27, 28 and 31.
Fev 1 was in the early 70's. All three of my children were
planned. 

 
 My
children do not have CF but do of course carry one gene.

 
Since my children, I have had the rest of my left lung removed due
to chronic bleeding. So now with one lung my FEV 1 is
45. I am a very active person between taking care of my
family and volunteer work.

 I love being a
mom. Over the years my children have kept me busy with
getting me involved in various school and extra curricular
activities such as the Girl Scouts, class mother, PTA President,
etc. I married my high school sweetheart (started dating him
when I was 15) and he is a wonderful husband and a real hands on
dad.

 
 How
has my health faired over the years? Well, I just turned 48
this last week and I feel great. My health has remained stable
since my last operation. For the past 2 years (I am cultured
every three months) I have cultured two strains of
pseudomonas. The only other bug I have ever cultured is Micro
Avium complex. I have had that treated 3 times with long term
antibiotics during the past 11 years, but have been negative for
the past 2 years.

 
My meds: Advair 50/100 twice a
day


Pulmozyme once a day


HS twice a day


 Albuteral
inhaler- 2 puffs before HS

 

I use the VEST twice a day for 30 minutes and walk 5 times a week
on my treadmill for 30-45 minutes each time.

 
How has my CF affected the kids? My kids have always known
that I have a lung disease. They have seen me taking my meds,
doing my treatments, exercising, coughing up phlegm, even coughing
up blood. I do not make a big deal about it and I think they
in turn have picked up on that and react in the same way.
They always kid me how they can always find me in a crowd.
All they have to do is listen for the cough!

 
When they did go to middle school I explained about my cystic
fibrosis and that it is a progressive lung disease. I also
explained that one day if my lungs (now lung) gives out I would
need a lung transplant. 
 
In 7th grade their science class studies genetics
and cystic fibrosis was mentioned. When each of my children
took the course they came home from school telling me how they
shared with their classmates that their mom has this disease.
Of course the teacher and students were surprised to hear
this but I was impressed how they were not afraid to speak up and
felt comfortable to share this with the class.

 
 Probably the most
difficult time for them was when I had the rest of my lung
removed. They were 13, 12 & 9 at the time. They had
seen me for two years prior in and out of the hospital (8 times
total) having embolizations and IV treatments. They have also
experienced us calling 911 and me being hauled off in an
ambulance. Again I am not one to react in such a way that
would get them more upset or frightened. When you have cf
this stuff happens so I present this as normal for me. It
wouldn't be normal for them because they do not have cf but for me
it is. And since I am fine with it they are too. They did ask
me if I was going to die when I had the operation. I said
that there was a small risk, which was true-- 5%-- but that
the doctors were very hopeful that I would do well and thankfully I
did.

 
With all that being said my answer here would be incomplete if I
did not also mention one very important aspect of our lives.
Our faith is the center of our lives. It brings me peace and
joy and has enabled me to live in the moment and not waste a second
worrying about what might happen tomorrow. I have total faith
that God will provide for the needs of my family when that time
comes. Not that I am looking to go anywhere anytime
soon. But we all die, that we can not escape and I do believe
that what is most important is what we do with the time we have
been given, not how long we live.

 
Having cf has really enabled me and my husband to truly focus on
what is the most important -- our family. Certainly nothing
is rosy all the time as we are all works in progress but I am
living one day at a time and having an awesome time. Cf has
also made us face our mortality at a much younger age than most.
Death is a subject that we have talked about many times with
the kids over the years. Death is part of living as we will
all experience it. We know that death brings pain and sorrow
but it is something we do not fear, our faith gives us strength to
accept it.

 
 It
was asked, "What do you think are important things for other cf
patients to consider before having a child." This is very
personal for each couple as everyone also has other factors besides
cf to consider on when and if they are to have children.
Certainly a strong marriage with a rock solid foundation is a
must. My advice is to search your hearts and pray. The answer
will come.<img src="i/expressions/heart.gif" border="0">

anonymous · Sep 19, 2006

sorry guys but i had to add my pennys worth on this subject, there is alot of talk going on about the fact of the kids that are affected with parents that have cf, i know how it can feel to see a person that you have come to love and trust all your life knowing that one day they will not be there anymore it is heart wrenching and awful to watch them dying in front of you knowing you cannot do sweet fa about it. i have a boy who is four with cf and i think my biggest fear is not being able to see him grow into man hood and i outlive him instead i do not want this but had we known that we were both carriers of this awful disease we would have thought differently we had twins and luckily only one had cf but obviously his brother is a carrier. I also have to add this part my mum was diagnosed with alzheimers at the age of fifty two which is quite young she has had this disease for seven years now and she does not know anybody that comes to see her she does not know all her grandkids, i know cf is a horrible disease but seeing my mum who is just like an empty shell sometimes it can make you think that there are worse diseases out there and she obviously did not know she would have this disease at such a young age so my question is to you guys out there is, is it not better to have the person you love dearly be able to still love you back and be able to tell them still that you love them back and have them not know you at all, we need to live for today not for tommorrow that never comes, i feel your heartache i really do, but there are many tests now that can be done before you have kids to eradicate this awful disease, you could get ran over by a bus tommorrow we cannot let this disease win we must keep on fighting nobody wants a loved one to go through pain but there sre times when the options are not written in the script sorry to say. posted by carol.

anonymous · Sep 19, 2006

sorry guys but i had to add my pennys worth on this subject, there is alot of talk going on about the fact of the kids that are affected with parents that have cf, i know how it can feel to see a person that you have come to love and trust all your life knowing that one day they will not be there anymore it is heart wrenching and awful to watch them dying in front of you knowing you cannot do sweet fa about it. i have a boy who is four with cf and i think my biggest fear is not being able to see him grow into man hood and i outlive him instead i do not want this but had we known that we were both carriers of this awful disease we would have thought differently we had twins and luckily only one had cf but obviously his brother is a carrier. I also have to add this part my mum was diagnosed with alzheimers at the age of fifty two which is quite young she has had this disease for seven years now and she does not know anybody that comes to see her she does not know all her grandkids, i know cf is a horrible disease but seeing my mum who is just like an empty shell sometimes it can make you think that there are worse diseases out there and she obviously did not know she would have this disease at such a young age so my question is to you guys out there is, is it not better to have the person you love dearly be able to still love you back and be able to tell them still that you love them back and have them not know you at all, we need to live for today not for tommorrow that never comes, i feel your heartache i really do, but there are many tests now that can be done before you have kids to eradicate this awful disease, you could get ran over by a bus tommorrow we cannot let this disease win we must keep on fighting nobody wants a loved one to go through pain but there sre times when the options are not written in the script sorry to say. posted by carol.

anonymous · Sep 19, 2006

sorry guys but i had to add my pennys worth on this subject, there is alot of talk going on about the fact of the kids that are affected with parents that have cf, i know how it can feel to see a person that you have come to love and trust all your life knowing that one day they will not be there anymore it is heart wrenching and awful to watch them dying in front of you knowing you cannot do sweet fa about it. i have a boy who is four with cf and i think my biggest fear is not being able to see him grow into man hood and i outlive him instead i do not want this but had we known that we were both carriers of this awful disease we would have thought differently we had twins and luckily only one had cf but obviously his brother is a carrier. I also have to add this part my mum was diagnosed with alzheimers at the age of fifty two which is quite young she has had this disease for seven years now and she does not know anybody that comes to see her she does not know all her grandkids, i know cf is a horrible disease but seeing my mum who is just like an empty shell sometimes it can make you think that there are worse diseases out there and she obviously did not know she would have this disease at such a young age so my question is to you guys out there is, is it not better to have the person you love dearly be able to still love you back and be able to tell them still that you love them back and have them not know you at all, we need to live for today not for tommorrow that never comes, i feel your heartache i really do, but there are many tests now that can be done before you have kids to eradicate this awful disease, you could get ran over by a bus tommorrow we cannot let this disease win we must keep on fighting nobody wants a loved one to go through pain but there sre times when the options are not written in the script sorry to say. posted by carol.

anonymous · Sep 19, 2006

to jem all that can be said to this post is well done you and good on you for taking this kind of attitude three cheers for you but also sorry to hear what you have been through i wish your family all the best and may it continue.carol

anonymous · Sep 19, 2006

to jem all that can be said to this post is well done you and good on you for taking this kind of attitude three cheers for you but also sorry to hear what you have been through i wish your family all the best and may it continue.carol

anonymous · Sep 19, 2006

to jem all that can be said to this post is well done you and good on you for taking this kind of attitude three cheers for you but also sorry to hear what you have been through i wish your family all the best and may it continue.carol

Jem · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: anonymous to jem all that
can be said to this post is well done you and good on you for
taking this kind of attitude three cheers for you but also sorry to
hear what you have been through i wish your family all the best and
may it continue.carol</end quote></div> 
 
Thank you Carol for your kind words. I too wish you well with
your family and I hope your cf child finds peace and fulfillment in
his life.<img src="i/expressions/heart.gif" border="0">

Jem · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: anonymous to jem all that
can be said to this post is well done you and good on you for
taking this kind of attitude three cheers for you but also sorry to
hear what you have been through i wish your family all the best and
may it continue.carol</end quote></div> 
 
Thank you Carol for your kind words. I too wish you well with
your family and I hope your cf child finds peace and fulfillment in
his life.<img src="i/expressions/heart.gif" border="0">

Jem · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: anonymous to jem all that
can be said to this post is well done you and good on you for
taking this kind of attitude three cheers for you but also sorry to
hear what you have been through i wish your family all the best and
may it continue.carol</end quote></div> 
 
Thank you Carol for your kind words. I too wish you well with
your family and I hope your cf child finds peace and fulfillment in
his life.<img src="i/expressions/heart.gif" border="0">

LisaV · Sep 19, 2006

In response to the question "What do you think are important things for other cf patients to consider before having a child." I think that beside where you are in your progression and what your health is when you conceive, that Jem is right on the mark.
You need a really really strong marriage (with real honesty and openness between partners including permission for both to verbalize ALL of their feelings) and you and your partner both need some sort of "spiritual" source of strength that lets you both see death as a part of life and not something to be particularly afraid of.

I also think you need to be willing to be honest and open with your kids and allow them the freedom and support to express ALL of their feelings. I think the "passing as well" thing is garbage and should not be encouraged. (which doesn't mean that the person with CF should be seen as "sick" either). I think you need to committ to trying to meet everyone's needs in the family - but most importantly to meet your kids needs (that is every parents job). No one should be labeled "selfish" because they express a feeling or have a need. It is the family's job to try to meet everyone's needs. I think couples and family counseling with someone who is experienced with John Rolland's work would be very helpful.

I think before you have kids you should think long and hard about what your expectations are about "the kids being here for me" - whether it is here for you while you are in good health or not. Rip and I were old fashioned enough to think that parents should be there for their kids and not the other way around. I think that a parents job is to empower their kids so that they can leave their original nest and go set up their new one - whether or not the ill parent can "keep up". It was critically important to Rip that his kids get on with their lives even when he couldn't keep up.

On the up side of parenting even when you are very very sick, I would like you to know that Rip was there for his kids even when he was basically bedbound (even after he couldn't get out with the help of his powerchair and rampvan and O2). He was only a phone call away - and the phone did ring more than once when his kids needed to discuss something. It was really only when he had lots of times that he really couldn't breathe and talk at the same time (last year or so) that the kids began to freak and had trouble seeing him rather than seeing the disease. One cannot be too surprised by this. I had seen my dad through his death from lung disease and my mom and sister thru their deaths and I loved Rip with all my heart and soul, yet I too, had to sometimes give myself pep talks to "see the man and not the 'succubus' "(succubus is what I called his lung illness) on the way home from work to take over from his daytime PCAs.
-LisaV

LisaV · Sep 19, 2006

In response to the question "What do you think are important things for other cf patients to consider before having a child." I think that beside where you are in your progression and what your health is when you conceive, that Jem is right on the mark.
You need a really really strong marriage (with real honesty and openness between partners including permission for both to verbalize ALL of their feelings) and you and your partner both need some sort of "spiritual" source of strength that lets you both see death as a part of life and not something to be particularly afraid of.

I also think you need to be willing to be honest and open with your kids and allow them the freedom and support to express ALL of their feelings. I think the "passing as well" thing is garbage and should not be encouraged. (which doesn't mean that the person with CF should be seen as "sick" either). I think you need to committ to trying to meet everyone's needs in the family - but most importantly to meet your kids needs (that is every parents job). No one should be labeled "selfish" because they express a feeling or have a need. It is the family's job to try to meet everyone's needs. I think couples and family counseling with someone who is experienced with John Rolland's work would be very helpful.

I think before you have kids you should think long and hard about what your expectations are about "the kids being here for me" - whether it is here for you while you are in good health or not. Rip and I were old fashioned enough to think that parents should be there for their kids and not the other way around. I think that a parents job is to empower their kids so that they can leave their original nest and go set up their new one - whether or not the ill parent can "keep up". It was critically important to Rip that his kids get on with their lives even when he couldn't keep up.

On the up side of parenting even when you are very very sick, I would like you to know that Rip was there for his kids even when he was basically bedbound (even after he couldn't get out with the help of his powerchair and rampvan and O2). He was only a phone call away - and the phone did ring more than once when his kids needed to discuss something. It was really only when he had lots of times that he really couldn't breathe and talk at the same time (last year or so) that the kids began to freak and had trouble seeing him rather than seeing the disease. One cannot be too surprised by this. I had seen my dad through his death from lung disease and my mom and sister thru their deaths and I loved Rip with all my heart and soul, yet I too, had to sometimes give myself pep talks to "see the man and not the 'succubus' "(succubus is what I called his lung illness) on the way home from work to take over from his daytime PCAs.
-LisaV

LisaV · Sep 19, 2006

In response to the question "What do you think are important things for other cf patients to consider before having a child." I think that beside where you are in your progression and what your health is when you conceive, that Jem is right on the mark.
You need a really really strong marriage (with real honesty and openness between partners including permission for both to verbalize ALL of their feelings) and you and your partner both need some sort of "spiritual" source of strength that lets you both see death as a part of life and not something to be particularly afraid of.

I also think you need to be willing to be honest and open with your kids and allow them the freedom and support to express ALL of their feelings. I think the "passing as well" thing is garbage and should not be encouraged. (which doesn't mean that the person with CF should be seen as "sick" either). I think you need to committ to trying to meet everyone's needs in the family - but most importantly to meet your kids needs (that is every parents job). No one should be labeled "selfish" because they express a feeling or have a need. It is the family's job to try to meet everyone's needs. I think couples and family counseling with someone who is experienced with John Rolland's work would be very helpful.

I think before you have kids you should think long and hard about what your expectations are about "the kids being here for me" - whether it is here for you while you are in good health or not. Rip and I were old fashioned enough to think that parents should be there for their kids and not the other way around. I think that a parents job is to empower their kids so that they can leave their original nest and go set up their new one - whether or not the ill parent can "keep up". It was critically important to Rip that his kids get on with their lives even when he couldn't keep up.

On the up side of parenting even when you are very very sick, I would like you to know that Rip was there for his kids even when he was basically bedbound (even after he couldn't get out with the help of his powerchair and rampvan and O2). He was only a phone call away - and the phone did ring more than once when his kids needed to discuss something. It was really only when he had lots of times that he really couldn't breathe and talk at the same time (last year or so) that the kids began to freak and had trouble seeing him rather than seeing the disease. One cannot be too surprised by this. I had seen my dad through his death from lung disease and my mom and sister thru their deaths and I loved Rip with all my heart and soul, yet I too, had to sometimes give myself pep talks to "see the man and not the 'succubus' "(succubus is what I called his lung illness) on the way home from work to take over from his daytime PCAs.
-LisaV

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