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Parenting

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Feeling guilty for inflicting my disability on my child

8 replies

bouquetofpencils · 12/03/2014 18:32

I have Usher Syndrome which is both a hearing loss and visual impairment. My DD is seven months old. She does not have Ushers thank goodness, it is a recessive (and rare) gene.
I really struggle with my vision and two weeks ago was also informed I have glaucoma.
I am battling guilt because I feel I will be a burden to my daughter when she is older and also that I won't be able to be a proper mother. I struggle to see her face clearly and after being in all day with her on my own I get exhausted. I was just reading her a book and found it hard. The future scares me as my condition will only get worse.
Before I had her I was a very confident woman who would not let my disability get in my way.
Now of course life is not about me, it is about her and I feel so useless.
I love her so much, she is such an adorable and happy baby and I feel sorry for her that she doesn't have a proper mum.
In addition, since she was born, my beloved dad has been diagnosed with advanced cancer and I don't feel i can let my parents know I am struggling because they have enough to cope with.
My DH is wonderful but i can't keep crying to him, it will drag him down. He works long hours too.
Anyone out there got any tips on how I can keep positive? Been fighting the tears today.

OP posts:
lauren222 · 12/03/2014 18:37

Don't feel guilty. The most important thing for children is that they grow up in a warm, loving environment.

wouldbemedic · 20/03/2014 14:12

Don't panic! I'm so sorry that you're having such a hard time. Listen to me - YOU'LL ALWAYS BE A 'PROPER' MOTHER! I can't say that strongly enough. Your daughter will always have you to turn to, caring for her in whatever way is normal for your family, loving her and championing her cause. That's normal.

When I became disabled, I struggled with the thought that I wouldn't be the sort of mother I'd planned to be. That was hard to come to terms with, but to be honest, it was much harder for me than for my daughter.

If you never let your disability get in your way before having children, you can do exactly the same thing now. You sound a bit disorientated and like you need a bit of direction and encouragement to get back on your feet. Having a baby is stressful enough at the best of times and you have a great deal else going on too. I find that when I'm struggling with a lot of stressors, anything to do with my daughter's welfare can reduce me to floods of tears, because it's the thing I care most about. When I've calmed down, I can usually see that it was a response to multiple stressors, rather than any danger faced by my daughter.

There are various forms of help out there and a few charities that can provide direction. I think there is a group phone call for mothers with hearing difficulties, run by www.blindmumsconnect.org.uk/. Check out the facebook page at www.facebook.com/BlindMumsConnect - that's more developed. Also google 'Disabled Parent's Network' which is a major charity run by a very successful vision impaired mum. She will really encourage you and is there on the helpline when things are hard. You would also really benefit from calling 'Disability, Pregnancy and Parenting International' on their helpline - www.dppi.org.uk/. They have resources to help with the practicalities of caring for a baby when you have disabilities. They run a great journal that has lots of very encouraging stories about parents who are successfully looking after their children. I'm a disabled mum in the process of setting up a little charity of my own. If you'd like to know more about that, you can get me on [email protected].

I understand how hard it is, but don't panic. There really are so many different ways to be a good parent. You're at a point where many parents with no vision problems would be finding things a bit overwhelming. Don't shut your hubbie out, either. But do look up the help I've signposted, and tell him about it. My husband was utterly relieved to discover I'd made contact with DPN and DPPI, if only because I felt more upbeat and had a game plan. It is probably also nice for him to realise he's not the first husband in this position, either.

You sound like an amazing mum, actually. Good luck :)

quirkychick · 20/03/2014 14:20

I am not disabled myself (I have a disabled daughter, though). I could not read and run.

You sound very much like a proper mother. You sound lovely. Perhaps focus on the things you can do and get others to do the things you can't. The groups above sound great.

I felt completely thrown with my first baby (not disabled) it is quite normal. Much hugs to you and your lo, I hope you find your confident self soon.

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Authentique · 23/03/2014 20:04

I am not a parent (was very grateful to read Mumsnet does not ban non-parents) and this si largely due to my disabilities. I am so sorry you are struggling with v ision loss. I know a little about Usher Syndrome and I know its vision impairment is usually progressive, leading ot blindness eventually. I am blind myself and I know life can be fulfilling and productive even if you're totally blind. Is there any way you can connect to other people who have Usher's or are visually and hearing impaired too? I could say that blindness doesn't need to keep you from being a great mother,a nd I agree with the others that you are a proper mother. Then again, I can't imagine what it is like having your dual disability (I have multiple disabilites myself but not hearing loss) and, as a person who is most likely going to stay childless, I cannot fully empathize with you. I struggle with some similar issues, so I'm not sure I can be of any help, bt I wanted to let you know I understand in a way.

bouquetofpencils · 26/03/2014 23:02

Thank you for all these replies. I am touched by the feeling and time that has gone into them.
I am feeling more confident. Those organisations sound great and I am probably guilty of not seeking out enough support sometimes. Definitely in a hibernating phase at the moment!
My dd continues to be happy and delightful and meeting all her milestones so I must be doing something right.

OP posts:
drivenfromdistraction · 01/05/2014 02:37

bouquet, don't feel sad. Do you have Usher I or Usher II?

I have Usher II (i.e. moderate to severe hearing loss, not profound loss) and I have 3 kids, aged between 6 and 2.

Usher doesn't have to make you a burden on your child. It does put limitations on what you can do, but absolutely no limitations on how good a parent you are.

Are you going through a period of vision loss at the moment? I find that my vision stays stable for a long time - years - and then I have a quite rapid deterioration. Those periods of deterioration are very difficult because I'm having to adjust and learn how to deal with the change.

Have you considered a Guide Dog? I am on the waiting list for one at the moment. The organisation is fantastic, and you can ring them and they will come out and see you and talk about what a dog can do for you (and can't) and help you decide it's right for you. I first contacted them 10 years ago, but it didn't feel right then - now it does, though it will be a massive change and I have some uncertainty - will probably be another year on the waiting list though, so time to get used to the idea.

Are you in touch with the charity 'Sense'? I recommend getting on their mailing list to find out things that are going on.

And feel free to PM me if you want to talk. I change username a lot on here (will probably do so soon after this post as it has high potential to out me!) but will get the PMs regardless.

bouquetofpencils · 26/06/2014 09:59

Hi Driven, I have PMed you! Thank you!
It is ushers II. Looking forward to a chat.

OP posts:
FrancesNiadova · 03/09/2014 10:40

Hi bouquet, sendingThanks.

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