How did you decide to have children?

[worzelswife]

I have EDS and M.E and although I have been desperate all my life to have children I have realised recently that I'm most probably not well enough to have them. I'm trying to think it all through to see if there is a way round my health issues so I know where I stand and just wanted to know how other people made a decision and how you cope.

Most people tell me to go for it anyway (in a couple of years!) but I don't think they appreciate how unwell I can actually be. My family, who are aware, have all advised me not to do it.

For example, I need to sleep 9/10 hours a night. If I get woken at any time - even at 7.30am rather than 8.30 then I feel horrendous all day and have a lot of nausea. I sleep every afternoon for 2-3 hours and can only go without that for a day or two. I struggle to get out the house more than once or twice a week as I'm simply too exhausted. I struggle to cook/clean/wash myself and have a carer to help, but can only afford help for 3 hours a week. I don't think nowadays with the cuts I can afford to say that ss will just magically provide more care.

The thing I'm finding the most hard is the fact that I have a wonderful dp who would love to have children and who would make a great dad. I'm concerned that I'm going to lose him over this. I can cope with not having children - after all my life has been one long stretch of having to accept I can't have or do things I want, I have nieces and nephews who bring me joy and ultimately in some ways it would be a relief if I don't have any because I know I won't have to push myself through feeling horrible because a child needs me, but I hate the idea of losing my amazing dp. Up until now in our relationship I've always had the attitude that we'll find a way to do it but I really am starting to accept now it's probably not possible for me. I'm going to have to sit down and explain that and accept that although I know he loves me he might want to move on and find someone who can have children.

But then there's a part of me that still thinks 'we can find a way.' These thoughts go round and round in my head.

Thank you if you've read this far. I don't know who to talk to or what to decide! It just feels really scary that I have a life ahead of me with no career/job, no children and then potentially losing the man I love as well. How am I going to fill that life? I have lots of hobbies but hobbies aren't children!

I'm sorry I don't have any answers for you but I wanted to bump your thread and hope someone else sees it. xxJM

Thank you! I guess it's a quieter section here.

Ok, let's bump again :)

Bumpitty bump!

And another bump :)

I just wanted to explain that I know exactly how you are feeling. I have a progressive muscle wasting disease and was advised not to have children, both by doctors and certain other people in my life. This was due to to the effect pregnancy would have on my body and my ability to look after a child. (I have muscle weakness, fatigue, mobility issues, respiratory problems etc). I felt I was a burden to my partner and begged him to meet someone else with whom he could live a 'normal' life (fortunately he didn't listen to me!). However after much soul searching, and talking to my partner and very encouraging GP, I did eventually decide to try for a baby. I'm now 34 weeks pregnant and have actually coped far better than everyone expected (better than some of my non-disabled friends). Being preganant has given me a renewed respect for my body and has given me the confidence to realise I can overcome some of the things I was so terrified about. I'm under no illusion it will be easy looking after a child, but I now feel that whatever happens, somehow we will find a way to cope. I've done my research and have been preparing to make things as easy as possible (i.e. have adapted my home, bought equipment that will help me etc etc.). It has been a real emotional rollercoaster and I know that everyone is different, but for me it was the right decision. Being a parent is about more than how well your body works - your partner sounds great, so between you you would find solutions. Please feel free to ask me any questions. I don't want to make you feel pressured into having a baby, but just wanted to let you know that maybe it will be possible for you. xxx

Wow, thank you flower. Your story is really heartwarming and so many congratulations on the pregnancy. It really is lovely to hear of other people with physical difficulties who have taken the leap.

The hard thing is that some people with disabilities maybe just have mobility problems or just something else, and it complicates things when you have the blasted fatigue too, doesn't it.

I wish you lots and lots of luck and would love to hear how you get on. A therapist once said to me precisely that being a parent is more about what you can do physically for your child. It's about the love you give, the cuddles, the time, the talks. They are what matter. I'm not going to give up on my dream just yet, even if I know that the odds are stacked hugely against me.

And thank you to Jacks for the bumps

Don't give up hope worzel. I'd resigned myself to the fact I'd never have children so never even dreamed I'd be where I am today. The fatigue is a killer, but I figure most new parents feel like that anyway, so perhaps we are better equiped to deal with it than most. I get a lot of pain due to my illness, but have coped well with pregnancy. I do believe that this is partly due to the fact that pain and discomfort is just normal for me, so I've just carried on as I would usually!

The other really useful piece of advice that people gave to me, is that children adapt very well to their parents disability. We have more hang up's about it than they do, and I've experienced that with my neice who's 3. I'm really self conscious about my walking stick, but she plays with it and finds sticks in the woods to be 'like aunty'. This has helped me to stop taking it so seriously.

Good luck with whatever you decide to do. I will let you know when the baby arrives! Only 4 weeks to go :)

Thank you, and 4 weeks, wow, so exciting!!

I agree about the children adapting thing. My niece and nephews fight over who gets to ride on my lap in the wheelchair and think my mobility scooter is just the coolest thing ever.

I think it's good for society that disabled people have children - the children grow up far more compassionate and tolerant for one. But someone recently said 'it would be really selfish for you to have children' and that HURT like anything and I've been worrying if it would be true. The trouble is everyone has a fairly strong opinion on this and I don't know who to listen to!!

I have been talking with dp about this issue. He is adamant we'd find a way to cope. I'm still not sure. Anyway, it's not him who would be the primary carer. I have a uti today and the anti-biotics are making me very sick. I keep thinking how awful it would be if I had a child to take care of on top of this. But on the good days I'm still desperate for a child.

Good luck flower, I will be thinking of you.

I have two children, now 8 and 11. I also have a connective tissue disorder, which is genetic. My eldest daughter is affected, my little one is not.

I knew I wanted children but did fear that it would not be possible. My condition affects the heart and pregnancy is particularly risky. I was very lucky in that I was referred to a fantastic and supportive cardiologist at the beginning of my first pregnancy and she encouraged me all the way. I was carefully monitored and went on to have an uncomplicated delivery.

In my second pregnancy my condition did worsen, but I still went on to have a vaginal delivery, although I needed a ventouse because prolonged pushing is contraindicated for me. My poor connective tissue gave me short labours (2 hrs and 4 hrs), which helped with the fatigue which I also suffer from. It was an easy decision to stop at 2 children. The crash team had been called in during dd2's labour because I had a bad reaction to the prostin and my womb got stuck in a contraction. I was also at the point where it was dangerous from a cardiac point of view, and dh wanted to stop.

I managed to hold off having heart surgery until recently. I'm now 3 weeks post heart surgery and unexpectedly also had a pacemaker fitted 2 weeks ago, so I was 12 days in hospital. It has been a stressful time for all of us. I cannot do anything at the moment, cooking, cleaning, washing. My children are finding things quite difficult at the moment, and so is dh, although part of this is because they were old enough to understand the risks of the surgery, and cried out for normality.

Despite all of this, I do not regret having children. I know my limitations, I could not manage juggling children and career. My surgeon was a woman and a mother and I cannot imagine how she does both, even with good health.

I would say to you, go for it. There was a lady in my NCT class with ME, and she coped well. She had doctors who understood her condition, I hope you do too.

Thank you so much mad for sharing that. I hope your recovery goes well; that all sounds really scary. Can I ask what it was like for you when your babies were waking through the night and then when they were toddlers running around - because those are the bits I'm scared about. If I get woken during the night I then have to sleep most of the day to recover. I can't ever imagine coping with being woken several times a night for months on end and still being alive at the end of it. But I don't know where the help would come from in terms of someone else doing that bit.

Dp said recently he would be happy being a sahd. That would be a perfect solution - for him to be the primary carer but I'm too ill to go out to work so I'd need to have a think about what our income would be. I'm looking into proofreading - things like that, that can be done by me lying in bed, but I don't know if there are just a million proofreaders out there already and the market is saturated.

Oh and flowerflo I meant to write, I'm thinking of you! Hope all is going well.

Thanks worzel, I'm doing ok but no sign of baby arriving yet. Not up to doing much at the mo, so just sitting at home relaxing whilst I still can! Am nervous but managing to stay fairly calm!

Madsometimes - I hope you are getting better from your surgery. It's very reassuring to me also to know that you have coped with children despite your condition. I sometimes feel terrified that I won't cope, but I know deep down that it will be ok :)

Glad you're relaxing!

I read this yesterday. It really helped. I hope you get a chance to have a look.

Just read that blog worzel. I agree, its really helpful. Thanks for linking it :)

Things are going quite well for me now. I'm able to do a lot more around the house. Next week I can do ironing , and drive . Dh is still at home with me, and we are living on savings. He could go back to work soon though.

It is quite a while since I have had babies, and there is no doubt that they are hard work, but I coped. They key thing is not to expect too much of yourself. Focus on feeding yourself and the baby, ignore the housework etc. I ff both my children, and was not proud of it. In fact I was very of bf mums, and didn't feel that I fitted in with NCT mums. I did get a little depressed about feeding.

As for sleep deprivation, you get used to it. I believe that is true, even if your health is not great. If you can afford it, a mothers help can be great. Just someone to look after your baby for a few hours in the afternoon once or twice a week while you nap. Health visitors say to sleep when your baby sleeps. That is nearly impossible. I also put my children into short nursery sessions as soon as possible. Nursery wears out toddlers, which is great.

That is how I got through babies and toddlers. I know that ME is different, and every baby is different too. Dd1 slept from 7 to 7 at 12 weeks, dd2 took 2 years to do the same.

I think that disability should not stop you following your dreams, but the path will be hard, and you cannot be a perfectionist.

I have four children, and have Type 2 EDS and Lupus (was initially mis-diagnosed with ME/CFS 14 years ago, got my Lupus and APS diagnosis last summer)

The EDS wasn't an issue in my teens and early twenties, when I had my first two children, although the subluxations and joint pain have increased massively as I've got older) For my third and fourth children (born late 30's to early 40's )the EDS caused major problems with mobility. I was in a wheelchair for most of the pregnancy. I also had the Lupus and APS to contend with at that point.

It's been hard work, but I've been lucky to have a v.supportive partner and several periods of remission, where I've been able to come off all meds, and have regained full mobility. I also have the ability, no matter how tired or in pain I am, to find a couple of spare spoons when needed.

Good pain control, a good sleep regime and a slack attitude to housework will see you through. Don't beat yourself up if you're slumped on the sofa with your baby watching CBeebies for the third morning in a row, rather then off to the park/Baby yoga/playgroup with all the other mums...as long as your children are warm, clean, well-fed and loved, that is all that matters. Mads advice about nursery is spot on as well. Build up a support network of friends and family who can take the baby for a couple of hours so that you can catch up on sleep.

It can be done :)

Thank you for sharing your stories. I will take a lot from them in terms of positives. I don't have family living near me right now (long story) but my parents might be willing to move closer to help out if I ever took the step of having dcs.

I feel like this is on my mind every day and one day I decide 'definitely not, I just can't' and then the day after I think it might be possible again. It's such a rollercoaster! I think January is so hard for lots of people, but particularly if you have health issues, because you're stuck indoors more than ever and the lack of light can make you more tired.

For the moment I'm not making any decisions but will keep hold of the idea 'It can be done!'.

Oh gosh seriously don't think you are not well enough but how you would do child rearing tasks. Seriously I strongly believe disabled parents have so much to give to a child I talk from experience.

I have severe mobility limitations due to having had juvenile arthritis since 15mths old. Every joint of mine is either deformed , painful or made of plastic. My husband also has youth arthritis and like me we have poor reach, movement, I can't do stairs at all have a stair lift. I can't touch my knees let alone toes not because I am large I am 5 foot and 6 stone but because my spin is a bit wonky! We have an adorable healthy tall one year old baby boy.

Please please check my blog for ideas on how to care for a baby and please never ever think you can't be a great parent just because you are creaky it is the best thing I have ever done. Better than getting my degree, on par with meeting and marrying my husband.

There are aspects that are hard of carrying out tasks with a baby but a zillion alternative ways to do a task as well as a well parent. Your child will learn wonderful human characteristics that many children don't learn now such as patience, laughter and team work gets you all through hard times, you won't be able to take it out loads possibly but instead will give him or her great quality time, reading a book together, cuddling and playing fun games with toys that can be done on your bed as well as you can do it on the floor.

You can be amazing no matter how pants our bodies are!

Check out my blog I am a Mumsnet blogger under DisABLEd Parents. My husband is an artist so look for my icon of a mummy teddy in a wheelchair with baby ted courtesy of my creaky lovely husband.

X

Sunny that's such a lovely post, thank you. You don't know what it means to me to read things like that (actually, I guess you can imagine). Sorry I only just saw it.

Flower, how are you? Hoping you have popped by now and are coping well.

i'm not going to lie, it's the hardest thing i have ever put my body through, but having my daughter has been the best thing to ever happen to me in my life & i cannot imagine not having had her now, i'm so proud to be her mummy. every day is a struggle & i'm always in a lot of pain & exhausted by the simplest task. but we manage, we cope & muddle through & just take it day by day.

only you know what is the right decision for you, but i just want to reassure you it can be done, there are plenty of us disabled mummies about : )

although physically i'm the worst i've ever been, my heart is so full & content now i have my lo, it's like the missing piece of the puzzle going into place, i feel the happiest i've ever felt : )

it was scary & it's hard but it is sooooo worth it imo! xx

That's lovely to read.
I had lunch with a friend with a new baby today. It was great but I just came back and sobbed. Most of the time, it feel so out of reach and her baby was so precious.

I just thought I would share in case it's a help. I have chronic neck pain, dreadful migraines and ongoing low energy problems. Despite my best efforts, I cannot really lead a normal life at the moment (although always hopeful it will change). I also take a combination of drugs each night that would make it unsafe for me to care for a baby during the nights. (Our daughter is six months old). So we weighed up the decision to have a baby carefully and moved closer to family support. Then I developed a severe pelvic problem during the pregnancy which have led to nine months virtually in a wheelchair anyway (something that could have happened to absolutely anyone!). So far, it's difficult but it's doable. We were lucky in having an easy baby (she's bottle fed and they're definitely easier) who slept through from 7 weeks. The mornings are dreadful but it's all just for a season and things change unbelievably quickly. Last month's problem disappears and we're finding that together, we can always face down this month's challenge. Having said that, I think it helps that we were expecting absolute hell for the first couple of years, so anything better is a nice surprise. Also, my husband has a good work ethic(!) and did the middle of the nights.
Good luck!!!