CF and pregnancy/raising a child

[Shoshanna]

Hi Everyone,<br>
<br>
I've seen a lot of posts about this and wanted to share my own 2
cents.<br>
<br>
I have an 11 month-old son. I got pregnant (very easily), but had a
rough pregnancy and was hospitalized 4 times due to breathing
difficulties and loss of weight. I never gained more than 4 pounds
during my pregnancy...baby was fine, but took everything from me.
Happily my husband and I gave birth to a healthy son, but the
pregnancy took a toll on my body and I am now on the transplant
list. FYI: my FEV1 was 45% when I got pregnant and my doc was on
the fence about the decision I made. Now it ranges btw 29%-35%<br>
<br>
In retrospect, I was naive about the whole thing. I figured the
last trimester would be tough with all the breathing, but never
thought of the weight issues, nausea, vomiting and the fact that
pregnancy makes your muscles loosen so I now have stress
incontinence from coughing and throw up a whole lot easier than I
use to...neither of which are fun. I never really knew about that
stuff or gave it much thought. I guess my point is that pregnancy
is a very complex issue...some will do fine, but some really
struggle and the decision shouldn't be taken lightly.<br>
<br>
The other issue that needs a lot of consideration is raising a
child when you're sick. I am lucky enough to have live-in help
because I do not have the strength/energy to care full time for my
son. I knew I would have this resource ahead of time and so that
made things easier. But truthfully, there are a lot of complex
emotions that go with having a child and being ill. Most days I am
not my son's primary caregiver (the nanny is) and sometimes that
eats away at me. I see all the other mothers so healthy and strong
and I feel guilty that I can't give more to my son.<br>
<br>
Also, I think about my future a lot and the fact that I may not
live to see my son become a teenager let alone a man. I never knew
this kind of pain or suffering existed, but once you have a child
the thought of leaving them is devastating. Whatever suffering my
CF brings me physically, this is 20 million times worse. I try to
savor each day, but thoughts of the future eat away at me.<br>
<br>
I don't regret my decision to have a child as I've never known this
kind of love/happiness before. But it comes with a price and I
suffer emotionally for the fact that one day I will leave my
son way before I should.<br>
<br>
So, to all the CF women (and men) wanting to experience parenthood
I just say to think about it long and hard and don't make any off
the cuff decisions.  Have the right resources in place, be
mature, have a little life experience under your belt and be
prepared to feel a lot of overwhelming emotions. I guess that's
what motherhood is all about, but having CF just compounds it a bit
more.<br>
<br>
Good luck to everyone.<br>

 

[Allie]

<div class="FTQUOTE"><begin quote>So, to all the CF women (and men) wanting to experience parenthood I just say to think about it long and hard and don't make any off the cuff decisions. Have the right resources in place, be mature, have a little life experience under your belt and be prepared to feel a lot of overwhelming emotions.</end quote></div>

Thank you so much for psoting this. I couldn't have said it better myself. Parenthood is a tough job.

 

[my65roses4me]

<span style=" font-size: x-small;">Very good post! Thanks for
sharing your experience, and I'm sorry you have had a hard time
being mommy to your child. It saddens me to hear how hard it
is.<br>
My husband and I are considering having a child. All of these
things that you mentioned have crossed both of our minds. I too
will be able to have live in help if needed. Hopefully when we
decide to have a child it will all go ok for us. I really love to
hear other's experiences because it help raise more topics to
discuss and consider. We are trying to consider all of the ups and
downs of being parents on top of me being sick. I know we cant
think of everything to consider but we are trying. We want to be
sure we are prepared if we decide to thru with our plans to extend
our family. Anyways I just wanted to say thanks for sharing about
you and your family. How well does your husband handle it?

 

[anonymous]

THank you so much for your story! I too am 45% and i am wanting to have a baby with my husband really bad! I have been researching day in and day out about drugs that i can and cant use and all that. But to hear it from a person is more informal! I totally understand where you are comng from, i can see how you would feel and that is one thing that really gets to me is that if my husband and i do choose to have a child that one day he will be a single dad and i wont be able to see it grow up! but anyways, thanx again!!!
Cariann 21 w/cf cfrd mrsa

 

[NoExcuses]

.

 

[Lungboy911]

That was very courages and extremely responsible of you to post Shoshanna.
As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.

Thank you again,

 

[LouLou]

bump

 

[LouLou]

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[LouLou]

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[LouLou]

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[LouLou]

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[LouLou]

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[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote></div>

Well said Scott

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote></div>

Well said Scott

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote></div>

Well said Scott

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote></div>

Well said Scott

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote>

Well said Scott

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Hockeypuck</b></i>

That was very courages and extremely responsible of you to post Shoshanna.

As a male I did not have to go through what you and my wife did. However, if it wasn't for a successful double lung tx my daughter would NOT have a father. I know how influential and important my dad was to me. So, anytime someone can remind us of the consequences of our actions. In my soul is a hero.



Thank you again,</end quote>

Well said Scott

 

[lightNlife]

Thank you for this oft-ignored/disregarded point of view. You have given a voice to all the things my husband and I (used to) wrestle with regarding parenting. For all the reasons you mention, and others specific to our personal situation and background, we have decided that we will always be a family of two.

<b>Anonymous said:</b>

<div class="FTQUOTE"><begin quote>that really gets to me is that if my husband and i do choose to have a child that one day <b>he</b> will be a single dad and <b>i</b> wont be able to see it grow up</end quote></div> (emphasis mine)

I encourage couples to rethink that sort of statement and realize that it's not about you and your spouse and your happiness or future. It's about the child. It's the child who has to bear the weight of the emotions. And chances are, if you're so focused on lamenting a future you won't have, that you're wasting energy that you could be investing into making the present something beautiful.

Shoshanna, you're walking a tough road. I sincerely hope you're not walking it alone. Be well, my friend. Make each day a precious thing with your child.

-Lauren

 

[lightNlife]

Thank you for this oft-ignored/disregarded point of view. You have given a voice to all the things my husband and I (used to) wrestle with regarding parenting. For all the reasons you mention, and others specific to our personal situation and background, we have decided that we will always be a family of two.

<b>Anonymous said:</b>

<div class="FTQUOTE"><begin quote>that really gets to me is that if my husband and i do choose to have a child that one day <b>he</b> will be a single dad and <b>i</b> wont be able to see it grow up</end quote></div> (emphasis mine)

I encourage couples to rethink that sort of statement and realize that it's not about you and your spouse and your happiness or future. It's about the child. It's the child who has to bear the weight of the emotions. And chances are, if you're so focused on lamenting a future you won't have, that you're wasting energy that you could be investing into making the present something beautiful.

Shoshanna, you're walking a tough road. I sincerely hope you're not walking it alone. Be well, my friend. Make each day a precious thing with your child.

-Lauren