to ask for your help to decide whether I should have a child or not? (EDS related)(176 Posts)
wanted me when i could loook after him but when the shoe is on the other foot
All I can do is tell you what I would do - what you do has to be your decision. When you have a child of your own, their happiness/wellbeing is THE most important thing in your life. I am broody as anything for another, but if I was told there was a 50% chance of the next child having something that would cause them pain every day of their lives, then no way would I have them. I worked with severely disabled children for a while and saw so much frustration/pain/misery. I would not chance that just for my own happiness.
I WOULD adopt though. You could give an older child a chance of a home, one who would not otherwise have that opportunity. Once children are beyond a certain age, no-one wants them. I have seen older children (primary age still) adopted, and they were so so so relieved to have a family. Security at last, parents who would love them whatever. It turned their lives around. Ok it wasn't easy, but what they needed was what you could do for a child - love, emotional support, care, a home and a family. They were old enough that your physical issues would not have been a problem. Two children turned from disaffected, sad, troubled individuals - into happy, open, contented children. Love does amazing things.
If you are sure you want a baby, stay with a friend with one for a while or have them bring the baby to you. Actually have a go at looking after one for a day (with friend there in case you need them obv) and see if you can. They get pretty heavy before they can do anything for themselves. I have a disabled relative and she could only lift my DS until he was four months old - then he was too heavy to even be on her lap...
15 years dx 1 year ago. kids much worse to be honest. youngest really bad
but if you took me back to before kids even knowing what i know i wouldnt not have them. they are in pain but their lives have meaning, probably selfish but i cant imagine life without them
It just hurts and I pay for it for a few days. But with your own child there will be no time to rest and recuperate between bouts of childcare; it's constant...
Plus you would need to factor in the possibility that your health would deteriorate even further from the level you're currently experiencing, how do you really imagine you would be able to cope without full time help?
the constant nights are hard for me but you will have a dh to do it so you can rest. I think you will be fine to look after a baby/child with your dh help but i think the issue is possible eds in baby and how you will cope with pregnancy.
Even more than how you will cope with your EDS (and yes,I know your hubby will be on board)...how will your child cope with having it?
I really think you have to weigh up how much your broodiness is blinding you to that.You can make an informed decision about taking on the pain/suffering of a nine month pregnancy,the child wouldn't have any choice on being born into a life that sounds really so very painful (I have to admit,hadn't heard of EDS before but googled after reading the brave posters (yourself included) describing the reality of it).
Yes my dc are worse than me too, sorry not what you want to hear I know.
Ten years, he left months after I was dx, days after dc dx. Not in their life for years, turned his family against us with his lies, so not a lot of support for dc, just me and my Mum in their lives, and she isn't a lot of help.
I didn't know my symptoms were unusual, Dr's didn't understand them and I ran myself into the ground by my late twenties.
I didn't know I had EDS/HMS when I had my children in my early twenties.
My advice to my dc is not to have more than two, have them young, don't bfeed past a week, have a c-section and have IVF to breed the gene out. Hormones and age make you worse.
Will write more tomorrow, shattered now, you know how it is!
Yes OP, I have taken on ss and (for the moment), come out victorious! I have little support from my own family but a old family friend came out of the woodwork to do battle with me & for me... With doctors, ss, banks, work you name it shes fought for me to help me be able to live. I got very comprehensive legal advice on social services and it was necessary as there is so much institutional disabled parent / disabled professional discrimination. It's staggering, councils own rules and processes can directly contravene legislation and the people working in ss won't even know that.
BUT I do, and my aim is to make sure everyone else does too, as you can get help if you fight hard enough.
The help I get takes into account my need to pace - which is so fundamental to avoiding the spiral of deterioration eds brings. If I'd got it in place when I needed it, my life would be very different.
So that's the positive side of daily management as a parent!
Ps my h hit me when I begged him to help me. Just to join the club of eds + abusive husband club (oh the joy, that there are so many of us).
Waves at MrsJREwing!!! Long time to squeak! I have a couple of good tempory helpers in place and currently interviewing for permanent, but I have one amazing permanent person who does a nannying/ mothers help day time role and she has just stabilised everything. Yay! Keep your fingers crossed that I can find people for the rest (evenings & pa role). Put it all on hold after friend helped get stop gap people in place as injured my neck doing hydrotherapy in December. Hideous pain on using neck which is a bit of a bugger. And increase in autonomic rubbish. How's you? R u feeling any better after all the trauma you went through end last year?
i meant to say i get direct payments to help me parent too.
You are a very brave lady with what sounds like a truly lovely husband.
I would definitely give yourself some time to come to terms with this descision, in a way you will be grieving the loss of something you have wanted for a long time.
Just remember, the adoption process can be a long one so get started as soon as you feel ready.
Can you tell me how direct payments to help you parent works?
I actually think a five year old would be a good age to adopt, at school and past carrying pushchairs and tantrums dry at night. Chatty etc. Also as a disabled parent whole point is not to adopt an ill child, you would know by that age if there were health issues mainly.
I can't tell you what to to do but I can tell you a bit about what we went through. I have EDS 3, diagnosed by Prof Graham when I was pregnant with my first child (but not my first pregnancy) but with clear symptoms dating back into childhood.
EDS carries a greater risk of miscarriage (I was told) and I have lost five children that way - four before my eldest was born and one in between my middle and youngest child). I have had three successful pregnancies all of which were very different and my children are now aged 6, 4 and 2.
Firstly, let me say that I am not as severely affected as you.
My first pregnancy was fairly straightforward until about six months and then the pain in my hips, pelvis and shoulders became horrendous. Needed crutches etc.
My second pregnancy was worse - crutches from about 8 weeks, and bed rest from 20 weeks, hospitalised at 30 weeks.
I had seven months of physiotherapy after that birth.
My third pregnancy was much better - I had physiotherapy support from 6 weeks and I was in much better shape and lasted without crutches until 28wks.
All three were born by ECS and I bled profusely with them all - only the first was touch and go. Recovery was slow and draining and I didn't breastfeed as the physio told me this was one way of keeping the relaxin in my system. It didn't help that I am a de facto single mother as my husband is in the Army and only comes home for a weekend once or twice every month. I live near my parents and they were my help and and support.
Only my middle child has shown any signs of EDS and was diagnosed at 20mths. He gets daily physio and struggles with pain and subluxations - he appears to be worse affected than me but he has a great attitude and seems to pick himself up and dust himself off. He didn't walk until he was two and half and needed a lot of handling and that has been a real strain on me at times as I struggled to handle him. He's now four and when he needs lifting and carrying it can be very difficult and will only get more so the more he grows.
I have permanently damaged my hips and pelvis and I found pregnancy very tiring and a slog, especially when I had toddlers to look after.
My youngest child shows no signs of EDS, neither does the eldest (although they all had clicky joints and were all closely monitored). Only time will tell how my middle one adapts.
I wouldn't change any of it but it was emotionally and physically draining - repeated miscarriages are not fun and I hate knowing that I've passed the condition on to my son.
Good luck with your difficult decision - I'm sure that you will find that whatever you decide it's the best for you.
It is absolutely not selfish to decide against pregnancy because of the pain it would cause you. There's nothing wrong with wanting agency over your own body. Unfortunately we are fed a lot of the mother as martyr bullshit from so many sources, it's very pervasive. Pregnancy is a big thing for any woman to put her body through, even a very healthy and robust one. Before seeing that you'd made a decision, I was actually going to post saying that in your position, I don't think I'd risk my health.
You sound lovely and v caring and bravely have been very honest with yourself.
IMVHO whatever you decide ('own' pregnancy/surrogacy/adoption) you would not be 'selfish' in my book.
There is a strong biology imperative to want your own/your DH's biological child. 'Tis was reproduction is all about.
However, wanting to protect yourself/any potential offspring from the pain and problems that EDS can bring can be an equally strong motivator.
And lastly, I think chosing to adopt and give a child that would otherwise likely have a life with changing carers or who-knows-what-circumstances, is truly the most amazing gift any adult can give a child.
One of my cousins is adopted and many random strangers used to comment on how he looked 'just like his father' simply because he and my uncle are both brown-eyed and dark-haired. People see what they expect to see. He always knew he was adopted (as did the rest of the family) and when he was a teenager his parents offered to help him seek out his birth family and he decided he did not want/need to find them. I never think of him other than family.
You are strong in so many ways and very brave - you'd be a fabulous mother when the time and circumstances are right x.
The new baby stage doesn't last very long in any case: having a toddler and an older child is a much bigger part of your life. And an adopted child will be just as much yours for having come into your life a little later. My parents had 3 biological children and adopted their last (as a toddler). We are all their own children, there really is no difference.
The more i think about it the more i would still have my kids. i get direct payments to help me get them presentable for school and to help get them to bed and a cooked meal. my sw is fab
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