Kids, or no kids...?

[flyingfairy]

I waih you every success Leanne it is a wonderful thing that you are doing bringing a baby into the world. It must be a very scary thing as you do not know what to expect. Please keep use informed of how things are going!

[ali g]

i have only just been diagnosed with hms but have 2 lovely girls age 21months and 10 months pregnancy was hard and my second one was 8 weeks early (non hms related) but i wouldnt be with out either of them when im feeling low i just look at them and it puts a instant smile on my face they are my anti depresants! it can be hard but i have coped with 2 pregnancys and for 21months not knowing i even had hms as for the girls getrting it that is a bridge will cross if and when we come to it.
dont live to regret not having children in my opinion its the best thing i have ever done and there is only a 50% chance that it may be passed on i think if i didnt have my girls i would always wonder
best wishes to all that are pregnant or even thinking about it
ali

[flyingfairy]

I know what you are saying,but would you still have had your children if you knew before? It was too late in your case that decision was made for you as you didn't know. Where as in my case i do know and i worry that if i did get pregnant that my children would sufeer like i do on a daily basis. I would always feel some regreat when they are suffering like i am sure my mum does when she see's me suffer. It is one of the hardest decision me and my partner at the time will ever have to make.

[ali g]

i understand what you are saying but i think from my point of veiw i would have still had my girls although i would know the risk i couldnt (personally) live all my life thinking what if they had been fine and not have hms as there is only a 50% chance however my partners opinion is totally different as he woululd chose if he had the option not to of had children but then he already has children from a previous relationship i think it is totally down the indevidual and how they feel.

[flyingfairy]

yeah you are right, but the more information you have the better it is surely.

[firefairy]

I hadnt even thought about it till the pod who said i needed checking out and sent me on this whole long journey saw me popping my shoulder back in and said rather abruptly ull have to thik about whther u want to have to teach ur kids how to do that as well as everything else. I have been thinking - would i rather not be born, no i rather like being alive, i like my depressed painful life, ok not everyday but i would rather have it than not there is so much more to it than the bad stuff.

If i do have kids there is a martial art trained person who can pop bones back (my hubby what a lucky find he does the bones i cant) and two people who understand cronic pain, grand parents who understand cronic pain and who says it would have 2 get that bad if id been given the right exercises 15 yrs ago i would have never got into this state.

So my conclusion is if there have to be HMS babies what better family to be part of. Even if part of the education is how to put ur own shoulder back in it socket, i wish there had been someone to show me how to do it!

[flyingfairy]

Yeah i know what you are saying but you no yourself that it is not just the putting back in of the bones is it? It is the fatigue and the pain that you suffer 24/7.I suppose there is a good side if your children have it you will be able to getting them diagonised sooner than most. I am not saying i wish i was never bone that isn't what i am saying at all i had some great years playing rugby and doing all sorts of stuff but if i was given a choice i would try to live without it

[Guest]

i guess i might be out of palce in this thread. but me and my gf both w3ant to have kids. but im scared that my HMS will be passed on to him/her and she will have to deal witht eh pain and problems i have. who knows what the future holds but i dont know if i could handle seeing my child in so much pain, and knowing its gonna get worse.. plus i dont know if im ever gonna be in the shape to provide or have the energy to be a dad... pretty harsh thing to grasp. i know it breaks my moms heart everytime she sees me struggle and try to be "normal" and do normal activities. i try not to show im dieing inside infront of people but they can see. my mom almost doesnt really want to see me anymore becuase she cant handle the horrible feeling she gets when she sees me struggle. maybe she has sympathy pains or maybe shes sick of dealing with me. i dont know i just know theres only one person who has truely been there for me since my doagnosis and thats my gf. everyone else has either drifted away, or dont truely understand it and try not to concern themselves or feel bad for me.

[flyingfairy]

it is very difficult,i know my mum suffers on a daily basis when she see's me in pain (mum has given HMS to me) i am sure she feels guilty. She told me last night that if she could she would take the pain away she could. I asked her last night that if she knew what i would be like would she still have had me, she wouldn't answer i am not sure if i could knowing give my child HMS this was different for my mum, she did n't know she had it till we went to see the prof 2 years ago this december. It is a very difficult decision to make the one thing that is in your favour is that you aren't the woman so your partner would not suffer like you would if you were the female through thr pregnancy and the birth if you see what i mean. I hope that makes sense. In away it is better now you can knowling make a decision that is right for you based on all the facts and advise that is available.

[nonyanomemory]

On a positive note!
I know I have posted this before but we have two inherited conditions (HEDS & an inherited form of epilepsy) in our families and at the time of pregnancy etc had no idea that this was so. I have no regrets and despite my condition pain is not my only experience and is definately not that of my daughters who also has ehlers danlos. She does have pain etc and disability but she also has a life - I know different people have varying degrees of disability with their hms/heds but in my small opinion it is not a condition which is unmanageable - learning to manage it can be hard and life can be a rocky old road some days but I wouldn't be without my kids and each day they have on this earth is a lucky day for all of us.

nonya

[ali g]

i totally agree with what nonya said every day with my girls is a blessed day and i also would not be with out them they are and will always be my life i have many friends who cope with much worse than hms and although im not saying hms isnt at all disableing because in my own experience it is i just know that there is many much worse life long conditions that many adults and children have to learn to cope and live with.
ali

[LianneS]

Speaking as someone who has just lost our baby I totally think the extra pain for me was worth it.....I wasnt majorly bad like some of you but as she was lying so low etc my pelvic area really suffered...its still a bit bad now, 3 weeks after losing her...but boy Id have that pain and worse again just to be able to have the joys of bringing children into this world...

As for passing the pain onto them I cant help...I dont suffer enough on a day to day basis for it to make me think I couldnt give this to my child.....its not severe enough for me to justify not having kids...

I feel for you who are really struggling with this decision, the fact is only you can make the decision as only you know how difficult and painful your own lives are...The problem you have is also that the hms might not be passed on...you could have a healthy child...you just dont know do you....is very tricky...

Hugs to you all
Lianne

[sanguine_emma]

Just to chuck in my two pen'th here...

Some of you will know that the OH and I have decided after much deep thought and internal wrangling to try for a baby. There are a lot of factors at play, and for different people and different couples the final decision will be different. here are some of my thoughts:

I'm a de novo mutant, ie no-one in my family has EDS and my genes mucked up of their own accord. This means a) things can go wrong even if both parents are perfectly healthy, and b) my family hadn't got a clue what was going on, and passed off my various complaints as 'growing pains' and attention seeking. If I pass it on, at least I'll know what the problem is!

This is a frustrating, painful and crippling condition on occasion. But even in my worst moments, if you asked me whether it would be better if I hadn't been born the answer is a resounding no. I'm too much in love with life. EDS is part of me and it has shaped my personality, it has taught me things about myself and about others, it has led me to make friends here and has given me a greater understanding of disability in general. My hope is that any children I have will share my optimism. My second-greatest fear is watching my children suffer and knowing I made this decision for them, but my greatest fear is never having given them a chance to exist and take on the world for themselves.

That's all a bit profound for a friday morning. I'm going to have to do some shopping to redress the balance. Off to investigate Shopmobility - pedestrians of Oxford beware!

Emma

[LianneS]

Thats such a great outlook Emma..

One other thing to add.....people can be born healthy, nothing wrong with them, they then are involved in an accident that leaves them crippled and in pain.....people develop cancer, again pain....people get arthritis..again pain....
You just dont know whats in store for any of us and theres no point trying to second guess....

For those of you in constant pain - yes I can see where youre coming from but as Emma says she would never change the fact that she has this chance of life...

Lianne

[Sola^]

I believe my boyfriend is thinking somewhat like RyanC. About the energy of beeing a good father and takeing his "share" of the responsibility. I think he's worried that we would put too much responsibility on my shoulders and that he won't have the energy to carry "his weight".

In addition he likes the freedom that comes with no kids.

Plus he hasn't really been around kids that much. He doesn't have that many relatives that he actually has contact with, and he only has an older brother and sister. And he has never even held a baby.

Myself has tons cusins and a 7-8 years younger brother who I started babysitting quite early.

Personally I adore and love kids. I've thought some about adopting instead of risking that our children will grow up struggeling with EDS, but one isn't guaranteed a healthy and non-disabled child through adoption either. One might even end up with a child with a more serious condition than EDS. I would love to be pregnant some time, even though the delivery puts me off some