How to cope with people's reactions to our situation?

[Angel2Fire]

Me and my partner live together. I'm 21, he's 28 and we're engaged (not that it makes any difference to us, just seems it does to society.)

However, we both suffer from an illness called M.E which causes extreme fatigue, muscle pains and weakness, sleeping problems e.t.c. We get care from social services and choose and employ our own carers (we have them for about 70 hours a week.) They help us with cooking, cleaning, shopping, helping me in the bath e.t.c.) They also help me with the social side of things as I suffer from borderline personality disorder and need constant reassurance e.t.c. and my partner isn't always able to do this due to being tired so much. We both spend a large proportion of the day resting but are both at the level where we are able to walk around the flat and go outside occasionally using a wheelchair. We're also able to dress/feed ourselves.

Anyway, We have been ttc for a year now and have just found out I'm pregnant. We've thought everything through very thoroughly and are confident we will both be able to cope. We have both had a lot of experience with children and are under no false illusions about how much hard work it is going to be. We both feel ready despite our health problems. We will still get help from out carers and my family live 6 miles away and are VERY supportive. Also, M.E is not life-long. We're not sure when we will get fully better but we will at some point.

I'm worried about people's reactions and thinking we're doing the wrong thing. I just told my support worker as it will affect the care we get and her reaction was "oh my god Keeley how are you going to cope." I assured her we'd thought it through thoroughly and she said "Well you obviously didn't plan it but are you happy?" I didn't dare tell her it was planned.

Some people think I'm being selfish as we are not 100% healthy but they do not know the full story. My mum works for social services with families who have problems and after answering all her questions and explaining things she said she was very happy for us.

So my question is, how do I deal with all the negativity I'm getting? We're not going to be the first disabled people in the world to have a child but people seem to be acting like it! (And this support worker actually works with disabled people... so her reaction has worried me.)

Thanks

 

[moomin_troll]

well i dont no much about ur illness but from what u have said i think its going to be so hard having a baby seen as u both suffer from this illness.
Babies need constant attention and no matter how much anyone thinks about what its going to be like u will never no till u have ur own baby because all babies are different.

I have no clue how u can deal with peoples reaction after all likeu said one of ur care workers didnt have a great reaction to ur ttc news and she works one to one with disabled people.

Personally im not sure wherther its a good idea for u n ur oh to be ttc but who am i to tell u that u shouldnt. There are disabled parents out there who do get help to bring their babies up best they can but a baby needs their mum and dad and id be scared my baby would bond better with someone else because i wasnt the one who was always there.

I wish u all the luck in the world if u chose to do this and im sure u n ur oh will be great parents.

sorry i didnt see that u are actually pregnant lol i only saw ttc! congrats

 

[Angel2Fire]

well i dont no much about ur illness but from what u have said i think its going to be so hard having a baby seen as u both suffer from this illness.
Babies need constant attention and no matter how much anyone thinks about what its going to be like u will never no till u have ur own baby because all babies are different.

I have no clue how u can deal with peoples reaction after all likeu said one of ur care workers didnt have a great reaction to ur ttc news and she works one to one with disabled people.

Personally im not sure wherther its a good idea for u n ur oh to be ttc but who am i to tell u that u shouldnt. There are disabled parents out there who do get help to bring their babies up best they can but a baby needs their mum and dad and id be scared my baby would bond better with someone else because i wasnt the one who was always there.

I wish u all the luck in the world if u chose to do this and im sure u n ur oh will be great parents.

sorry i didnt see that u are actually pregnant lol i only saw ttc! congrats

I'm not ttc anymore I'm expecting (its near my name but I edited it in the post incase people didn't see it.)

I have cared for new born babies before, and I know everyone is being "nice" trying to warn me how hard its going to be but I am aware of that.

I just spoke to my carer and she pointed out that able-bodied people can't see how it is for disabled people and just see it as how difficult parenting is and think it would be difficult for someone who isn't.

So I'm going to leave this forum and join a disabled parents forum.

Thanks

 

[moomin_troll]

i dont think anybody is prepared for looking after a baby no matter if they are disbled or not as i said no one knows what its like to look after a baby 24/7 because all babies are different. And at the end of my post i did mention that i didnt see u were already expecting and i just saw ttc.

being pregnant is so draining im constantly tired n yet its so hard to get to sleep.
i have lived with diability my whole life through my brother who suffers from alot of illnesess so i dont think that just because of a disability people shouldnt have children but it all depends on what the diabilitly is and wherther it will effect the baby after all baby needs mum and dad 24/7 and u wont always be able to sleep when u need to.

i think people will be shocked because they dont understand.

i did also say congrats on being pregnant on my previous post

 

[Sovereign]

My ex's sister had very bad ME and she had twins and coped fine!!!! x

 

[Dragonfly]

I think if you and your other half think you can bring up a kid then why not? I dont know yet fully how hard it is as I am pregnant with my first but I hear I will never sleep again aparently how disabled are you? if you can hold a baby then I think you will be fine. I dont want to be negitive but I need to ask can you make up the bottles and such? I noticed you needed a carer to do this.

I aint against you just want to know really why so many have problems with it if you think you can do it yourself. Only you know what your capable of.

 

[babezone]

congrats on the pregnancy

as im sure ur aware it will be very hard but at the end of the day if u feel you can do it why not
nobody shud have to put their life on hold because of no illness...
the thing is aswell is you will get used to ur new routine baby.....if u guys became ill after you had baby then no1 would judge which i think is mad

but no i wish u all the luck in the world and you can see you guys will make good parents as you want it so much.
jus ignore those around u who critasise its both your life and no1 has the right to tel you how to live it...

have a great 9 months and welcome to the forum x x x x

 

[mummymadness]

I wouldnt worry about other peoples reactions ! , It is a choice . The choice you and your OH made together .
No one knows how demanding having children is untill it happens , I couldnt comment on situation as only you and your OH know how mobile and active you are .
If you are prepared and happy that is all that matters , Iam sure your baby will be very loved and very looked after, No one could expect or ask any more . xxx .

 

[nataliecn]

only you know for sure what you can handle.
if you and your partner know this is something you can do, by all means go for it.
what people think shouldn't matter.
i know people that are perfectly healthy, without a disability, and quite frankly, shouldn't be allowed to have kids if i were the judge.
obviously you and your partner have both thought about it, just as anyone else would.. someone with a crazy career that requires a lot of time, social butterflies, etc.
everyone has to think hard about having a baby about certain things that will make them struggle, or things that they would need to give up...

so, if you know you can do it, who cares what anyone thinks. just work even harder to prove those that don't think you can do it, that you can!

congrats on your pregnancy!!!!

 

[Becki77]

Congratulations!
Im sure both you and your other half are under no illussions that it is going to be difficult but if your both determined it will work then ignore other peoples comments.
You both have the right to leadind a normal family life despite your disability, im sure it will be good for you both and give you something to focus on.
Congrats again xx

 

[PeanutBean]

Congratulations to you both! I echo what others have said - no-one is prepared for the extra work of a baby whatever their other life conditions.

My brother has had ME since he was 18, he's about 35 now. He is married with 4 boys and has been the only earner this whole time. For a while there before the kids he became pretty much agorophobic he was so fearful of how ill he would be if he left the house. But meeting his now-wife turned things around for him a lot and then he had to manage because he was the breadwinner.

You probably know all of this but my brother found that changing his diet made a huge difference to his initial recovery from the early years when he thought he would simply die. He found he had a whole world of food intolerances and still does now. Cutting one thing out he'd eat more of another until he developed an intolerance to that too. but he has persevered and can manage well now. He still has many symptoms but has come an awful long way since when he had to return home for 6 years.

I hope you both make progress with your ME. I know it sucks and doctors can be so shit about it it's unreal. I'm sure you'll be fine with your LO and as you say you've family around to support you too. Enjoy your new family to be!

 

[helen1234]

congratulations
you didnt go into it with your eyes shut so doesnt really matter what people think or say.
as long as you can give the child everything the same as other children and the child isnt suffering or used as a carer. then i think more power to you, we live in 2008 and everyone is equal and deserves he same.
have a happy 9 months and enjoy your son and daughter when it arrives.
i'm sure you'll make brilliant parents and love the child very much
x

 

[faille]

Congrats!

All I'll say is that you've got a lot more support than a lot of other mums do.. single mums without any family and friends to help etc but nobody tells them that they shouldn't be doing it.

I also agree with the other girls who have said about fully-abled people having kids and they still don't give the kids the attention, affection and love that they need. Yeah, it can be draining physically but it sounds like you've thought about this and have a solid support network if you need it.


Good luck and have a happy & healthy nine months

 

[carries]

Hun, as i am sure you are very aware M.E has a stigma all of its own...nobody would dare tell you that you shouldnt do it if you were blind or in a wheelchair so why do they think they have the right just because its a disability you cant see?!?!

You clearly understand (as much as we all can before we actually have one!) that its going to be hard but if you are confident that with the support of your family and Social services that you can cope and cope well then I wish you both the best of luck. You are lucky to have good family support and im sure that with the right people around you you will make wonderful parents.

As for other peoples negativity, Bol*$!ks to them. It has nothing to do with anyone else and im afraid you are just going to have to develop thick skin. My only tip when dealing with negative people is outshine their negativity with your optimism. If you have a plan and are positive there is very little they can say to you.

Best of luck!

 

[Neecee]

Good luck to you both and just ENJOY being parents! Noone has the right to tell you you can't be good parents! There are so many parents out there who are so-called healthy who just can't do the job and don't deserve to be bringing up kids. As long as you have the support network you both need, you'll be fine!

 

[Angel2Fire]

Thankyou for all the supportive replies. I have spoken to the disabled parents network and they have given me a lot of information and support also.

I'm feeling a lot more positive now

 

[moomin_troll]

hope pregnancy treats u well

 

[Anna1982]

my sister had m.e, during university and her first pregnancy, she found it hard but coped, good luck you obviously have determination, and with my sister a baby helped with her recovery.

 

[lousielou]

Just wanted to say congratulations and best wishes for a happy pregnancy

 

[thelilbump]

Congratulations!