Whether To Have Children Or Not?

[UnicornIsis]

I got married in September and my husband is in the Navy. At the beginning of next year he'll re-up meaning he'll sign a new contract with the Navy for 4 more years (or more). He'll also get new orders at that time meaning he'll be changing the command he's assigned to and possibly his job and most likely we'll be moving to a new base. He'll also go on shore-duty meaning for that 3 year job time he won't be going on deployments, so he'll be home all the time. We had originally said that his shore-duty would be the time to try to have children.

But over the last several months, since Nov. really, we've been thinking about and talking about it a lot. And we've basically decided not to have children. The reasons being:

1 -- I got NCS and POTS from both sides of my family, mom's and dad's, that's why Dr. Abdallah thinks I got it so bad because it was on both sides of my family we now know. So that means that most likely I'd pass it on to my children.

2 -- Since I developed it, that means they might or probably would too. And I know what I've gone through and don't want to put them through it too. I don't want them to suffer the way I have, especially since we know they could develop it.

3 -- I'm as good right now as I've been since I got sick. Mostly. Even at the best time I haven't been great or anything. As well as I'm doing right now I can't take care of the apartment by myself, or even with my husband's help very well. And I know that I can't take care of a child, much less a baby right now, especially if I can't take care of myself. And it wouldn't be fair to the child to have a sick mom, just because I want a child.

I'd like to ask those members that are married and those that have kids how did you decide to or not to have children. If you did or are going to, how did you deal with the possibility of passing it on to them and of them developing it?

Is there a doctor you talked to about it? Especially a doctor who knows about Dysautonomia? What did they say was the possibility of the children developing it?

Are you able to take care of your children? I mean are you able to do it on your own or do you have to have help most of the time, such as your mother or mother-in-law or sister or friend or neighbor? If you have more than one, I assume its harder but how do you deal with having more than one, I mean being pulled in 2 different directions all the time? How do you keep up with more than one?

Right now we're trying to figure out how to solve the problem of me not being left alone. There was always someone home with me until we got married. We were hoping I was doing well enough now to be okay without someone home with me when my husband is at work. Unfortunatley that's become untrue lately. I do need someone with me in case something happens. I also have a movement disorder that we're trying to get diagnosed (I think its another part of the Dysautonomia). Between that and some of the more severe symptoms of the NCS and POTS we've decided that I shouldn't be left alone because I can't call for help when I have a problem and there's no warning of when I'm going to have a problem or spell. I can't really justify my and my husband's want for children when I can't even be left alone.

This has been a very hard decision to come to and as you can tell from this post I'm still struggling with it, especially since I've always wanted kids, even when I was little. I even worked in a day care in high school and took the 2 year program to get a certificate for it during school hours. I even took triple the class time the 2nd year because I enjoyed being there so much and because the teacher asked me if I'd supervise the other students in the program on the 2nd day of class when she was teaching other of her classes, no other student did that or had done that before. I helped raise all of my cousins along with my 2 other female cousins the same age as I am -- that was a LOT of BOYS all at one time to keep track of!! So I've always wanted kids and this is a really hard decision for me.

As some people I have talked to have suggested there's the option of adoption. I'm perfectly willing to do that and had always thought that I'd probably like to have both "natural" children and "chosen" children. The problems there are me not being able to take care of them still, and it not being fair to have a sick mom just because I wanted kids. Also I haven't looked into it, but I don't think many adoption agencies will want to give a child to someone who is chronically ill and has to have constant supervision as I do. If we decide to go this way, I'll defiantly find out if they will or not.

So far since we'd decided to wait until shore-duty to try for children we've been taking precautions for it not to happen. My family is EXTREMELY FERTILE, I'm the first girl NOT to have gotten pregnant wtihin a week of being married or by accident before then. And most of the time birth control methods, even using more than one at a time, don't work for us. 8 of my cousins and I were born using brith contorl methods of one form or another. Out of the 4 left, they started trying for one and got three within about 3 and 1/2 years. The last one the parents had fertility problems which they've never figured out. The only reason there aren't more of us is that one aunt got sick after her 3rd and couldn't have any more, one couldn't stand any more boys after her 3rd, the one had fertility problems, one couldn't stand my uncle after their 3rd - her 5th, and my mom said 2 was enough.

I guess I'm hoping that somehow I can convince myself that having kids is the right thing to do in spite of all the reasons not to. And my husband is VERY supportive of me in this. He agrees with all of my reasons not to, but he also knows how much I want to have children and he wants them too one day, even though he tells me when I ask him, that if we decide not to have them it will be okay with him. When we discuss the upcoming change of duty station and change of job, going over the options we have he always mentions how that particular option will affect having children, such as this one won't be good becasue he'll be away a lot, or that one will be good because he'll have regular hours and we might be close to family. So its a decison we're having trouble making. And I guess I'd like input and experiences from the members that have gone through this decison one way or the other already.

And we've said that whatever we decide if circumstances change in the future, such as if I get a lot better and stay that way for long enough 6 months to a year or so, then we'll change our decision and maybe try for children then.

Thanks for your time and for reading and anything you might have to offer or say.

UnicornIsis

[sally]

Hello,

This is always a very hard decision to make for anyone who has any type of chronic illness and you will hear alot of difference of opinions. This decision I feel must personally be made based on your health at the time and situation of support that you have incase you are not well enough and may need help to make things easier.

For myself, pregnancy was the only time that I felt normal. I also see that you have EDS, I also passed this onto our daughters as well as the blood pressure issue but I wouldn't change a thing. Having children was a blessing for us. And I feel there are no guarantees in life that you are going to be healthy even if you were born from totally healthy parents. That includes adoption. Although at times, I have struggled seeing my daughters suffer through their health issues but they have become amazing women because of it or in spite of it, which ever way you want to look at it.

I have had health issues mostly all of my life and raising children at times was difficult but had a very supportive husband who was also in the military( now long retired). I did not have the blessing of relying on anyone else such as other family members but somehow we all made it through okay. I just took it one day at a time and task at a time, did my best to take things in stride as best as I could and tried not to get freaked out about the what ifs and the why nots. Its all about perspective for me.

If the time for children is not right for you at the present time then when you feel alittle better it may be. You may want to speak to a geneticist about your chances of passing the EDS & dysautonomia to your children and to get more information how it may effect them before making your decision.

I wish you the best in your decision and hope you feel better soon.

[Guest tearose]

I think the decision is so different and so personal for each of us.

I hug you for the struggle...the struggle is already a sign of how you are loving and want what is best for children who are not here...you would be an excellent mother!

I too felt best during pregnancy but I had no full blown POTS then either. Just small signs prior to pregnancy.

Anyway, you know your marriage and the strains on it and how much will fall on you...you know best.

I do believe that you would be able to find ways to manage childrearing and POTS.

In my "hard times" I still was able to get clean clothes on my kids and food on the table. Yes, there were times the food was from cans and the clothes were just out of the dryer...but we managed. My sons have grown into fine wonderful young men and I think are more compassionate because they learned how to rise above the struggles and move on (and how to work as a team too).

If you can look into foster care, it may also be an alternative for you! There are many children that need a loving home for a short time and this may work good for you too. If you are able to manage foster care for several months...you may then have the confidence to adopt or go through pregnancy and childbirth.

best wishes, tearose

[Ernie]

Hi,

I have decided not to have children because I am too sick to take care of myself most of the time. I can't carry more than 5-10 lbs without fainting and I would not be permitted to be alone with my child. That is my own personal choice.

[bttrflyamby1981]

I had my children before I knew what was causing me to feel sick. I didn't even have any bad episodes, untill I was pregnant with my last child. It stayed with me since then. I felt sick before this, but it was more of a "unknown feeling, something didn't feel right" but didn't affect my everyday life the way it does now.

If I do happen to pass this down to my children, I would feel awful, but if someone asked me if I wouldn't want to be born because of this illness I would have to say no. I love life despite my limitations. I love my children and I wouldn't change anything. Not even my illness. I was given it for a reason and some day they might find a cure so I try to look at it with a possitive outlook.

Granted, I'm not as ill as some of you, I'm looking at this with my limitations not anyone elses. I could use help with my children, but don't get it. Then again I've never really asked. I am able to take care of myself and my children and even someone elses child a few times a week....I'm lucky. I have a hard time every single day, but I've lived with this from the time I was 13. It was mild then and got worse so slowly that I didn't even notice untill I had the last pregnancy....not sure what made it worse 3 years ago but it did.

I would like to do things without feeling wiped out all the time, but at least I'm able to do these things at all.

If I become worse, I don't know what I would do? My husband though makes good enough money that I'm able to stay home....we could use any income I could bring in, but I know I would have a hard time holding a real job. My babysitting money helps and make me feel like I'm helping. I started the Mary Kay buisness a few weeks ago and it works around me. If I'm too tierd, then I take the day off. I make my own schedule and can change it at any time for any reason. If I'm sick for a whole week, then I don't have to worry about losing my job, because I'm my own boss!

Anyway, if I wasn't able to take care of myself, and I didn't have any help...I wouldn't want to have children. It wouldn't be fair to them. But I'm not in the same place as you and I can't decide for you. I hope you can find a way to have the children you wanted to have. It would break my heart if I didn't have any children....best wishes,

Amber