Kids, or no kids...?

[Sola^]

My boyfriend has EDS, I don't. We've discussed kids some now and then. I know I want kids. Not right now, but in the future when I'm ready and have a decent job. My boyfriend, however, isn't sure whether he would like kids or not.

He like kids, but he's not sure if he will have enough energy to be what he considers a decent father. I think he fears that in order to be the father he would like to be he will have to be a stay-at-home-dad. And I don't think he would be happy with that. Personally I don't think it would be good for him not to have a job to go to. In addition I think he's kind of sceptic about the responsibility and the big change of priorities we will have to make. I also think he thinks about me. He doesn't want me to end up haveing to do everything with the kids.

We both agree that if I happen to get pregnant without planning it then I won't take an abortion. We both feel that it wouldn't be right for us.

At the moment he's trying to get a part time job. He doesn't think he will be able to work full time. He has studied some (history, religion), but doesn't have a university college degree or something similar. I think he has given up the thought of that since he would have to finish a bachelor degree (normally takes 3 years) part time and that would take 6 years. And it probably will result in him takeing a part time job anyway. That just really puts him off. I don't think he consider it worth the while.

He's probably not as affected by his EDS like a lot of you. On a normal day he doesn't experience joint pains (normally anyhow), but if he gets tired his chest starts to hurt. That has made him very cautious and is carefull not to get that tired.

I fear that down the road I will have to decide between kids and my boyfriend. It's a choice I don't want to make. I don't want to picture myself in the future without any kids or grandkids, but on the other side I love my boyfriend. We've been together for 2.5 years now, and I've been with him when his health was the worst, and when he got the hypermobility diagnose (and later EDS). We've had our share of rough times, but we've had a lot of good times too.

Has any of you had to make such a decision? What about your closest? Any thoughts/advice for me(us)?

[Guest]

I've been battling with the same question for the past 13 years when my pediatric orthopedic doctor told me to never have children. I was 14 at the time!

I had decided to not have children, got married and he agreed. That was my plan for years.

But I then found the right person to spend my life with. My second hubby listened to what I said and told me it was up to me. I want children now. My father just has lax ankles, my grand father had weak wrists. I am only the second person in my huge family (six aunts and uncles) to have more than niggling problems. My aunt was misdiagnosed with lupus (actually hms) but her children are healthy.

It took a long time for me to decide what to do. I even showed my husband the list of pregnancy complications Dr. Grahme wrote that might arise.

[Sola^]

It's not easy at all. I know I want kids. My boyfriend might want kids, but doesn't know yet. He will become 26 years old soon, I will be 23 this year so I still have some years left that I can make babies

Our problem is that we really can't say what kind of physical shape he will end up with. He was really in bad shape 2003-2004, but has now a much better physical shape due to a work out program he got at a rehabilitation center after he was diagnosed with HMS. We hope that it will continue that way and that we will be able to live a normal life some day.

I know I would be able to care for a child alone, but I don't want to unless I have to. At the moment he says that he's not able to both work and be a proper father. And quite frankly I don't think it would be good for him to be a stay at home dad. He has spent too much time with nothing to go to the last two years.

In a way it would be easier if I just got pregnant without planning it...That's how my oldest brother happened :p But I could never plan on getting pregnant by skipping contraceptive without his consent. In that case he would have decided that he too want kids.

Maybe it would have been easier if I became an aunt to my brothers or my friends kids, but sadly none of the ones I know are planning on kids anytime soon.

[Mari]

Hello Sola and Laura Jane,
This is a difficult one. When I had my first child I hadn't yet been diagnosed, but I had plenty of pain already. I suspected that carrying and caring for a baby would be difficult for me. By the time my daughter was a year old, my EDS was much worse. So when it came to baby2 I knew what I was letting myself in for. I'd been diagnosed, and I knew exactly how difficult the pregnancy might be, how difficult it would be looking after the baby, especially whilst already having one to take care of, and how it might cause my condition to deteriorate. We went ahead and tried for a baby knowing all these things. The way it's turned out, the pregnancy was horrible (not dangerous) and caring for her was difficult. Having a young family is very hard for someone with alot of pain and physical difficulties. And it's hard for my husband because he has so much to do. He has a stressful full time job and needs to be an active father too. My pain and limitations are bound to impact on the whole family.

BUT, we went into this with our eyes wide open and do not regret a single second. We have 2 beautiful wonderful children and the pleasure they bring outweighs the pain and difficulties a million times over! Having children is about more than the sum of its parts, so to speak. As long as you have thought it through and are fully aware of the possible implications, then that's good. And of course you could have a very positive experience. Many people with HMS/EDS have mild pregnancy problems and manage it all very well. Get fit and healthy beforehand and do the pelvic floor exercises religiously!

This has been my experience only, but you hadn't had many replies so I thought I'd jump in. Others may offer you more positive outcomes but as I said I do see this as a positive outcome - you couldn't have a more positive outcome than my 2 girls!

Mari

[sanguine_emma]

This is one we've been wrestling with too. I think we've more or less decided to go for it (when the time is right), but, like Mari says, I've got my eyes open. Having been told there would be no problems by my GP, I was then told not to do it by my rheumatologist (my feelings about him can be found elsewhere on these boards!). I consulted the real experts - you guys! I think the message I am getting from people who have kindly replied to my anxious messages is 'think about it carefully then trust your instincts'. So after lots of worrying and thinking and talking, that's how we decided.

Love Emma

[Natt]

It is a tough one to decide. I was diagnosed in my late teens and I am now 23. I am currently 27 weeks pregnant. Yes, my HMS has been bad. Yes my Fibro has been bad. Yes, my IBS is horrendous and yes, my asthma has returned.

But you know what? For me, it was worth it.

I have thought long and hard about the caring for the baby - we have chosen pushchairs and car seats with my HMS in mind. We have bought extra moses baskets and chairs so I dont need to do the stairs too much or carry things. It is workable.

Ultimately it is down to each individual about whether children are for them or not. But HMS rules so much of my life, I refused to let it make this decision for me.

Natt xx

[nickb]

Well said Natt-thats exactly how I feel too-I had tears in my eyes when i read that

[Sola^]

It's nice to know that we're not the only ones to battle this major question.

I'm not sure what to do, but I'm not in a hurry either. I guess I will give it a year, two, or maybe three or more. Maybe I will know more about the situation then. If he gets worse then it will probably be a "no kids"...but I believe that if he continue his working out then he won't get much worse...not until he's quite older a least.

I hope for a better situation with more energy, big enough place to store all our things and kids....but not for several years yet...

[flyingfairy]

This is a difficult question one that goes through my head every day. I am scared incase i can't look after my children or even get through the birth! It also concerns me to think that my child could suffer like i do on a day to day basis. It runs through my mind every day it scars me. I always pictured myself having children when i was older.

Fortunately at this moment in time it is not a part of my life i have not found my Mr Right to settle down with. I certainly would not consider having a baby without going to see the Prof to talk things through but then again i do suffer very badly with EDS.

Trust me though it plays on your mind every day!

[Alison C]

Hello Flying Fairy

Perhaps have a word with the Prof now as you are thinking about it all right now?

OT and physio has helped me in being a parent with HMS - yes, lifestyle changes are made and I am not a Supermummy, making cakes for the fete, and running around doing football with my son etc however we have lots of fun. My children have always known me as I am and understand that we can't do some things which others can. Everyone is different.

There are many parents with severe disabilities out there who accept help (eg home care, OT, physio, family, friends, volunteers ...... ) and are really over the moon with their family. Do look at the websites for parents with disabilities - I will write them later - off to the do school run!

Cheerio
Alison

[flyingfairy]

I know what you are saying Alsion i would not event think of having children without going to see the Prof. I know what you are saying about expecting help. I wouldn't want to make the child feel like he was my full tme career and not only that i would never want my child to hate me becuase of what i had given he or she

[nonyanomemory]

I was undiagnosed when I had my children and therefore didn't have the information available to me that I have now. We have two genetic conditions in our family neither of which we knew about all those years ago. Some days are harder than others but on the whole - I cannot imagine life without my children. An informed decision is a good one and knowledge is power, so that at least if ones children do inherit their hypermobility you would be best placed to get early diagnosis and treatment to enable them to live life as fully and happily as possible. Despite their separate conditions my children are neither unhappy or resentful of me or my husband. Sometimes life is challenging but in the end I do feel that makes them strong individuals. Having children is such a personal decision that in the end regardless of the best of genetic counselling and explanations from professionals the final decision can only be between the prospective parents. One is never sure what life will bring to any child or to its parent. Whatever your decision I am sure in my heart it will be through great soul searching and informed choices - good luck in whatever you decide.

nonya

[flyingfairy]

I do agree whatever decision you make it has to be right for you! You know how you are on a day to day basis! I do think though it is best to have all the facts before you make that decision. It will be one of the hardest decision you will have to make and one that you will have to live with for the rest of your life.

[cocol]

Even before I was diagnosed with HMS I had decided that either I would not have children of my own or maybe one. In either case I would adopt one or two.

[LianneS]

I have relatively mild hms compared to a lot of you, having said that its still painful!!!

Im currently 20 weeks pregnant, I went into this pregnancy knowing my hms could get worse, so far its not been too bad, Ive had a lot of hms pains but nothing I cant cope with, and when I see my little baby in Nov it will all be worth it...

I do also have a great family and a great hubby so I know I'll never be alone to struggle!!!

Go with your heart, not your head
Lianne