Dysautonomia & Parenting

[ethansmom]

I am just curious as to how many of us have children, or do not due to our health or other reasons. How many plan on having children in the future? Hope to get some good replies, as Ethan has reached the "age" where having more kids is becoming a hot topic and I'm at a deadlock thanks to POTS Hopefully I covered all the bases in this poll- if not, select "Other" and feel free to comment in the "Replies" section!!

[Merrill]

There are a couple other categories people might fall into... as an aging mom-wannabe undergoing fertility treatments, I'm kinda sensitive to this topic (but also curious).

There's the many adoption options, of course--do you have (adopted) children, and did you decide to adopt despite the difficulties you face with POTS or other dysautonomias... Would you adopt, given your symptoms, rather than cope with the additional difficulties pregnancy inevitably brings...

Then there's the "try to" phrase I subconsciously added to the questions...

Sorry--Waaayyy overtired over here, due to too many hormones, insomnia and other sleep disturbances, ridiculous stress at work, husband out of town, and unresolved and terribly stressful aging parent issues...

peace,

merrill

[ethansmom]

Merrill,

LOL, I had thought of all those options, however the poll only allows so many responses so I tried to condense the answers- I think you would most closely fall under the "no, but plan to conceive in the future" category. The main purpose of the survey is to see how dysautonomia affects the choices we make about parenting both biologically and adoptively as a whole- not so much how we became parents but whether or not we've decided to do so in general for health reasons.

BTW, I think of you often and wish you much peace and happiness in your quest for motherhood. It may be a long road, but hang in there for the ride

[Merrill]

Jessica, you're just the sweetest, and I've always thought so. Thank you for your reply; it means a lot to me!.

[MomtoGiuliana]

It was hard for me to select the appropriate response to this! I had POTS prior to conceiving, it just wasn't that bad so wasn't diagnosed. It got bad during and after pregnancy. So, anyway, I put myself in category 1. At the same time, due to POTS I don't intend to have any more biological children. We will possibly adopt or do foster care in the future. But, honestly I am just so so happy to have Giuliana in my life. I don't feel any need for more children, and my husband feels the same.

[ethansmom]

Merrill- I've always thought the same of you You always respond so kindly and sincerely to my posts and I thank you for that!!

Katherine- I thought of you when I was making the poll, due to your circumstances!! I kept trying to re-word it to fit everyone but it's so hard since we're all different!! Basically I am just trying to figure out who intends to become a parent for the first time (or again) despite their health battles, be it by adoption or any other means- but option 1 is just there for those who began their parenting journey before they got sick and don't necessarily plan on having more children.

[migraine]

No matter how we receive our children, they are both blessings and hardships for POTs patients. I have 3 children and one on the way. Every so often I feel guilty for bringing children into a world where, "Mommy's not feeling good today" is a common phrase.

I think when we conceive, adopt, or any other method it is always difficult to complain about your children...because you wanted this and this is the choice you made. It is also difficult to do knowing you have an illness that can make child rearing very tiresome. It is definately a responsiblilty of the Mother or Father (Even for people without POTS) to ask, "Can I actually do this?"

In my situation, I have a great support system. My Mother moved close to me after my second child was born and has been a Godsend. Though my husband is not always the best at showing empathy for my POTS, he is great with our kids. We are on different shifts, so we share an equal amount of childcare. On days when I'm sick my husband, Mother, and Mother-In Law all kick in to help. I honestly do not know what I would do without them and would have to seriously think about children if I did not have help. My family has allowed me to enjoy having a large family. And I know that my children are loved and well cared for. I guess it really does take a village to raise a child.

I believe children can also benefit POTS patients emotionally. Before kids, I spent a lot of time laying on the couch or watching movies. Even if I was only a little sick, I would not have the energy to go about my day. Children kind of force you to get up and get going. I feel I have learned to deal with minor illness days and just keep going.

Reading other people's postings I really feel for those who have not been able to conceive or who have been too sick to really enjoy their kids. You are in my prayers!

[Aprilmarie52]

I have not yet been blessed with a child. My sister in law is pregnant and I am a little jelous. But my husband says he isnt ready yet and I respect that. I would rather wait until he is ready. I dont want to force him into something that he doesnt think that he can handle yet. Plus I am in school and work full time so I would like to finish school first so it wont be so hard on me. I am only 20 and my husband is 23 so there is no rush. I can just play with other peoples children until I have my own.

[MomtoGiuliana]

I agree with migraine regarding the benefit of children to POTS patients, as hard as it is too. My daughter keeps me going, physically and emotionally. I am less focused on my symptoms than I might otherwise be. It's quite hard sometimes, and sometimes I do get jealous of "well" mothers and how "easy" they have it.

Definitely, you have to consider your likely future health when deciding on whether or not to have children--either your own biological children or through adoption. There is no crystal ball for any individual with POTS. We do know it isn't life-threatening nor progressive (not usually progressive anyway). I don't think it is damaging for a child to grow up with a parent who is sometimes ill. The child can learn so much from how you manage your illness--especially emotionally. And, yes, it does take a village to raise a child. Sadly in our culture we have moved away from that truism, and put a lot of expectation on a few people--namely the parents and later the school teachers as well. In many other cultures it is normal for a child to be close to multiple elders, as well as older children, and to receive care from all of them. It's so wonderful for everyone when the grandparents can be nearby and involved.

Aprilmarie--I understand how you feel. I wanted a child for a long time--I finally had one when I was 34! This was after finishing my Master's, travelling and working in Africa, and travelling Asia, Europe and South America. I am glad I had that time for myself and waiting gave me an opportunity to do those things I wouldn't have been able to do as a young parent.

I wish you--and everyone on this forum with parental aspirations--the very best in your quest.

[migraine]

I just wanted to comment on the last comment...I am 32, while I already have 3 kids and am pregnant with my 4th I finally feel like...OK, I'm ready to have a baby I don't think I could have said that at the age of 20. I have so much more patience now than I did when I had my first one, so there's definately a benefit to giving yourself some time emotionally and physically.

I was told it would be very difficult for my husband and I to have a child and was prepared to go through a series of fertility stuff. It was supposed to take a total of about 5 years. I think I gave birth a year after this diagnosis. I guess you just never know, and it either comes or it doesn't weather you're ready or not.

[MomtoGiuliana]

Migraine

I agree. I didn't have the readiness to be a parent at the age of 20, certainly. Not even at 25! We are all different and everyone matures at different rates. There are certainly advantages to being an older parent, for both the child and the parent! I also agree that sometimes things don't work out how we planned or expected, but still are for the best!

Katherine

[ethansmom]

Sometimes it is hard being a young parent, especially a young mom with POTS. In fact, I've never done anything more difficult in my life. BUT having Ethan does force me to get out of bed every morning and do something positive- after all, I've got an important job to do It allows me to think about something other than myself and my illness. He brings so much joy to our lives and has been a blessing in every sense of the word. I would love to have a large family, but having POTS concerns me to the point that I am afraid to go through more pregnancies (though the first was a breeze, it is unknown what the future would hold) and to bring more children into an environment where mom may be "down" a lot.

I was talking to my dad about this yesterday, which is ironic because when I was 20, umarried, and pregnant he was not talking to me at all- now he's asking when we're going to have the next one . His mother had severe asthma which was debilitating at times, and she spent periods of weeks or months unable to do much of anything. But my dad and his two brothers just looked at it as their "way of life" and none of them felt as if they lacked anything from her as a mother, in fact she was about as good as it gets Consequently, my dad and his brothers all grew up to be sensitive, caring, and compassionate individuals.

I have just been torn these last few months trying to decide what to do. David would like to have just one more child, but only if we live closer to relatives, which is a possibility as we are considering moving down to Florida near my parents this fall. If that happens, maybe it would be feasible for us...but in the meantime, I had just wanted to get some thoughts from other parents who are dealing with similar decisions, or who have raised children themselves or just have comments about the situation in general.

[migraine]

It almost seems like we need a "Moms With POTs" forum because for so many of us, we were diagnosed with POTs after a birth or the symptoms got worse. The main focus of our lives has become our kids and POTs, so there's probably oodles of conversation on this topic.

My symptoms seemed to become worse with each pregnancy, but it's usually not debilitating and my beta blockers really seem to help. Kudos to you for being a young Mother with POTs. I don't think I could have handled major POTs issues along with being a new Mom. They are both such huge adjustments to your life style along with going to school, working, and having the time of your life (which you should be doing at that age )

My first child was a hip baby. We could not put her down for one second or she would cry. My second child was a dream. She slept for 5 hours at a time all day and all night. Their personalities still reflect those patterns. So for me, a second child didn't seem like that big of a deal and a natural transition. My husband nearly lost his head with the third baby...and now a fourth...but it all seems to be settling in to a sort of comfortable chaos.

Before considering your second, I would definately make sure you are close to family or have some support. There's really no way of knowing what your stress level will be with the second baby and how your POTs will respond to your delivery...it could get better or worse, we just don't know.

You sound like someone who has endured a lot and still made it through the good or bad. I'm sure whatever you decide you can handle it.

[MomtoGiuliana]

I so agree with the above posts. Being young, ill and a mother all at once would be terrifically hard. These are two major life adjustments. And, Jessica, you manage it beautifully. It's a testament to your strength and maturity level. I also agree that having family nearby who can help out regularly is an important thing for us POTS-Moms to consider particularly when planning an addition to the family. You just don't know how you will respond to another pregnancy and post partum period and/or the added stress of another family member--who, as migraine points out from her experience--might not be as easy as the first or the others, or as easy as we expect.

[ethansmom]

Thanks for the compliments, you guys are too sweet. I love this board, it helps me feel better about everything sometimes There are days when I feel like I am not a good mom because I'm still so young, and other days people say "I don't know how you do it" and I feel validated. That is so true about having a "POTS Moms" forum- it would be very helpful I think the problems we face as parents with POTS are very unique...I can say this from experience since I had POTS both sbefore and after Ethan.

As said above, my main concerns about having another baby would be of course that the second one would be a more high-demand than Ethan- he can be very demanding and strong willed, but he's generally self sufficient and has been an excellent sleeper- which has made all the difference for me. Next time we could get a little night owl and it could impact my health a lot more...not to mention I'd have an active toddler on top of it. Family support wuld be essential...and I am very worried about how another pregnancy would affect me- there's a chance things could get better OR worse.

I have an appointment with a new doctor in August, so I am going to dicuss this more at that time, and see what happens with our move, then go from there. Take care everyone

[Merrill]

HEY! Finally someone voted that they had a child after being diagnosed! I thought I'd never see that day! Who are you, and what was your experience???

Did you have trouble getting pregnant? (How old are you?) Did your symptoms get better for a while during pregnancy b/c of your increased blood volume? (I've been told that might be the case for me...)

Just got the news of a second failed in vitro attempt, but under ridiculous stress lately on top of all else.

best to all,

m

[ethansmom]

Merrill-

I noticed that too...wonder who it was! I thought I was the one and only Come out wherever you are

I found out I was pregnant with Ethan 4 months after my diagnosis- but want to have more so I checked that option instead. I think it's interesting that so many people had kids before and after getting sick, based on the poll...

So sorry to hear about the in vitro I am praying for you still! Don't give up- I've heard too many good stories from friends and family going through the same thing you are right now, and it always ends up working out for the best. Yesterday we had our family reunion and were talking about this very subject- my cousin has been undergoing fertility treatments for 6 years, has had one ectopic pregnancy and two miscarriages and she announced last night that they are expecting (she's farther along now than ever before- yay!!). In our family we have a lot of adopted children as well- after failed fertility treatments or the lack of desire to go through them, whatever the reason may be- we've found adoption to be very rewarding in every sense. I'm not pretending to understand how tough this must be for you, but I do want you to stay positive and keep us updated! What's the next step?

Best of luck sweetie

Jess

[Merrill]

Hi, Jess. Your note brought tears to my eyes last night (I was pretty weepy all day as you can imagine) ... Could you possibly be any kinder? Don't think so.

Next steps? One in front of the other, I guess, one day at a time. Need to let my soul catch up with my body, as a good friend likes to say. This process is phenomenally demanding, both physically and emotionally. And with other family issues that weigh heavily... some days, frankly, I have nothing left. I can't seem to shake this dark cloud I've been under these last few years! (My husband and parrot are under it with me, thank goodness, and they remind me that brighter days are out there waiting, somewhere.) In the meantime, I try to stay on top of these POTS symptoms (I just walked a few blocks to get a favorite salad for lunch and thought I'd have a heart attack before I got back to my desk! I didn't, of course. ) and fantasize about the last three embryos sitting in a hospital freezer with my name on em and I try, how I try, not to feel so darn old. Sigh.

Keep a good thought; I feel better just knowing you will.

Peace,

Merrill

[ethansmom]

Merrill-

Didn't mean to make you cry, lol But sometimes that's not such a bad way of getting emotions out that need to surface. Like you said, sometimes your soul needs to catch up with your body, and that's okay. I'm sure that this has been very demanding both physically and mentally- but you are handling it with stellar strength. Do you wait a few months before trying again, or right away? Not to be nosy, but I am curious, as I don't know much of anything about in vitro although it fascinates me. I just got your e-mail too by the way- thank you so much!! Since it's late so I will respond tomorrow for sure

Take care!!

[dizzygirl]

hmm--wow ironic that this post was on when I logged on!

I clicked other-- while I want to concieve a child... I was told that its to unsafe for me to carry a child.. and more recently I found out that the chances of me ever even getting pregnant are close to impossible.. (w/o some help in the line of fertility treatments) the way health and other factor stand right now.. and that has left me feeling devestated

I would hope that in the future I could pursue fertility treatment.. if I stablize enough.. and get out of such a high risk zone... and my body behaves itself.. if not fertility treatments then I would look into adopting a child or children..

But for me personally I think that I would seriously have to stabilize ALOT and stay that way for a while before i would venture into adoption or something... as i can barely take care of my self at the moment.. let alone a child.

How do you guys do it every day? those of you who have children? God bless you momma's out there doing this! If any one deserves a super mom hero badge it would be you ladies!!

[Dizzy Dame]

I clicked "other" as well. Right now, I'm too young and too sick to start having babies. If I improve and stay that way then I'd like to have a child.

Honestly, I've been giving adoption much thought recently and I think it's my best option. Even before I got sick I wanted to adopt after having my birth childen, now I'm thinking I might just adopt and not risk my health with a pregnancy. However, most states require a minimum health in order to be approved to adopt. I will have to improve quite a bit in order to get an adoption lisence.

It's kind of a catch-22: I might be too sick to concieve and go through labor, but I might also be to sick to get an adoption lisence!

[nadine]

I had my only daughter ,who is now going to be 21, two years before I was became ill with CFIDS. It was the greatest joy of my life,as we had conceived with the help of fertility drugs. The most difficult times regarding parenting with CFIDS, was sending my then 2 year old to a babysitter everyday, because I was not able to care for her alone due to the illness. It broke my heart, but I had no choice. I then was well again until she entered first grade and again was down for 6 months. She was older and could so some things for herself, but I still had someone come every morning to get her to school and care for her while my husband worked and I ended up hospitalized for 5 weeks. It was difficult for the entire family, but I was thankful to have the support system I had. We later debated for years regarding trying for another child, for fear of another relapse. We decided to try without fertility drugs and whatever happened would happen. I had many with CFIDS tell me they felt better during pregnancy, my fear was the drain after.

Well there was never another child, but the one we have is an amazing young woman, who also has been diagnosed with CFIDS. She was a blessing and it is difficult to see her struggling with the same health problems. She has improved,but made many adjustments in her life and she is now caring for me, 15 years after my last illness. I guess we go through that cycle as parents and children- caring for each at various stages in our lives. The positive is we are extremely close and we understand exactly what the other one is going through. Just wish she had her dad's immune system and health rather than mine.

[bttrflyamby1981]

I am a mom of two children! I'm 25 and I started having these POTS symptoms while pregnant with my last one. I have not yet been dx....although doc says he's pretty sure.

I would have another child if I was able! I had to get my tubes tied because of other issues, so I have no choice unless we adopt. I have more good days then bad, so that helps in the desision. I feel that I could be a more or better mother then I am, but I put my heart into it. That has to count for something. They might not get to 'go' and do a lot of things, but I do try and do something for them on a daily basis.

If I didn't have children, I wouldn't fight so hard....so I'm glad I have so much to live for. Watching thier little faces light up as you read them a story is so worth the tiredness that can come after long weeks of sleepless nights being a parent.

To those who want children...may your wishes come true. Don't give up hope! I was told that I would have a slim to none chance of having one child, less then one month after being told that, I was pregnant. Then 2 years later I got pregnant again. I probably shouldn't have had my tubes tied, but it was very hard being pregnant. I had complications that I didn't want to repeat, so against my better judgment, I had my tubes tied. It was also recomended by my doctor....but he was the same one who said I had a slim to none chance at having children.

Oh well, not much I can do about it now. I'm thankful for the children I do have!

Best of luck, Amber

[worththewords]

This is a good topic..

I'm getting married in a couple months so this is something my fiance and I go around and around on - basically changing our minds on what is the 'right' thing. My gyn suggested to me that I should go the surrogacy route. He felt I could tolerate the fertility drugs necessary to make it happen but was very concerned about what the actual pregnancy would do to my POTS. He imagined it would make things much worse for me and suggested surrogacy so I wouldn't have to go through the actual pregnancy. Quite the expensive option but it's been an option on the table. Sometimes though I think of how terrible I would feel if I passed this on and my future child(ren) end up with POTS. I wouldn't wish this on my worst enemy so I can't imagine how I would feel if my own child ended up with it and I had known there was a risk of it. (This is the part we go around and around on). My fiance doesn't think it matters - I struggle with the thought..

The twist on the whole topic for me is that when my mom was my age (24) she suffered from the same symptoms I have. Of course she was diagnosed with panic attacks. During her pregnancy with me she got much worse and was constantly fainting. (I was dropped on my head before I was out of the womb!) However, once I arrived all her symptoms completely disappeared. So there has always been a part of me that has wondered if I should just try to go through a pregnancy on my own and see if maybe the same thing would happen. It's worth noting though that my mom had numerous miscarriages before she was able to have me and I am her only child. That's always a concern when I think of this plan. However, things may not go like they did for my mom. It may be rough and I would hate to spend the first year of my child's life bedridden or unable to care for him/her.

I had always hoped to just have one child. I enjoyed being an only child and I had plenty of friends that felt like siblings. My fiance has a brother so he would like 2 children. I always thought about having one of our own and adopting one to be our own as well. We'll see though. Our new puppy keeps me busy enough at this point!

[Lauren78]

I answered "No, I choose not to concieve." However, I must make a note that this is do to personal choice and that I have never wanted children, and nothing to do with my POTS. Although now with the POTS it further reinforces that decision.