I can't bond with my disabled baby

[Richard1974]

My son is now 4 months old. When he was born he had seizures and is now basically "asleep" 24/7 because of some extreme form of Epilepsy, which hasn't been fully diagnosed.

I always said that if we found out during the pregnancy the baby had any form of disability, we wouldn't go ahead because we have two children already and I could imagine our time and effort being focused on the disabled child.

All I see when I look at him is the pain of the future to come. The numous hospital visits, which have started from day one, the time to look after him, the limit to his life.

It's selfish as well, I can't bear to be seen in public with him, to be asked about him. The looks of pity have started already.

And I cry over the love my two kids give him knowing they won't have the brother they can play with.

He isn't moving and barely opens his eyes, and even when he does I don't see a connection. No laughter, no smiles or giggles. Nothing.

I resent him. I wish we could go back to just the 4 of us. Sometimes I feel like just giving up.

I just don't want to live this life as a parent of a disabled child. I just see pain and heartache and wasted time.

Help.

I understand completely what you are going through - the early days are really, really hard

Speaking from experience it honestly does get better but it might be time to seek some support from a charity or group if you haven't already? Contact a Family and other organisations provide support but I found online forums to be a real lifesaver in the early days. There might be a specific FB group for parents coping with epilepsy - did your DS have HIE at birth? I can recommend some good groups if so. Your health visitors might know of a local group where you can meet other parents too?

Take care

Marking my place. Will add some more later...but I completely understand your pain Richard. .

That must have been very hard to write Richard! You have found a good place here for support where parents dont judge each other!

I cant offer any advice but can give you these

Have a look at Matthews Friends - its a web forum officially for parents of children on the ketogenic diet (a specialist diet for severe epilepsy, which has to be done under medical supervision). Your child does not have to be on the diet to be a member. It is a good source of advice for parents of children with epilepsy - from other parents, who have likely been through it. Advice on drugs, seizures, you name it!

The Epilepsy Society has a number of forums, one of which is for parents of children with epilepsy. There is also Epilepsy Action - if you join, they do a newsletter, and if I recall correctly they have a helpline.

It is hard at first. All you see is the label and not the child - which is shell shocking. You grieve for the normal child you thought you were going to have. It does get better. I'd ignore the pitying looks. Don't think about the future - just take life one day at a time.

Thanks for your replys.

I'm not sure if I can get through this bonding issue.

I just see a disabled baby. And the problems that go with it.

My gf has already decided not to return to work, which means a finance as well as emotional punishment all ready.

I completely get where you are coming from. I found that I started to bond with dd2 more, the more I cared for her and did for her, but it is still very early.

I can remember desperately wanting to know what she would and would not be capable of, impossible to say so early too.

Some really good advice, here. I would add that we were under a Specialist Health Visitor from our local Children's Development Unit who referred us to Portage, who were wonderful.