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my son louie was born 4 months early and is profoundly deaf and has severe developmental delays and possible brain damage. He is now 18mnths old and is in and out of hospital all the time. he was a twin but his brother oliver sadly was only with us for 2 days

After being born he was in hospital for 7 months and my wife visited every day

louie has been home since oct and life is tough, for him, us and his brother 2 1/2 yrs old.

in feb this year my wife was diagnosed with stage 4 lung cancer (non smoker 26yrs old :O(!!. )

I have been of work for 4 months looking after the family while the wife has her treatment, we dont know what her outcome will be yet but we know the out look might not be good.

when louie is in hospital or at his shared carers life for us is "normal" and currently he is in hospital recovering from a chest infection and the thought of him coming home gives us a sinking feeling in the stomach. THis makes us feel so guity as we love him very very much.
when we first got respite it was for us as he was hard work. Now i can cope better but when i see how he doesnt develop it makes me depressed and a cloud seems to come over our family life.
I have to decide what is best for all of us, my wife, louie, his brother 2yrs old who has been really left while this goes on.

We are considering either long term adoption or putting him in long term care or residential care.

Pls can u let me know what is available? we are lucky enough to be able to pay for his care and really think he might develop more if he had 1 to 1 care rahter than the limited time i can give him :O(

i have to go back to work in 2 weeks and was going to put louie in nursery but have just been told by the docs that he may get another cold there that would pput him back in hospital.

pls dont hate me for these comments, our children were ivf and we felt so lucky to have them but it is so hard physically and emotionally and we feel we are letting our other son down and looking fr quality of life for his mum
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I dont really know what to reply to you, your post makes me very sad but just wanted to say not to rush into things, you have had a traumatic time over the past year or more so I would just allow yourself time to adjust to how things are now.

I have had many times over the years after my daughter became severely disabled aged 2 that I thought I couldnt cope and didnt want this new child that was so different to how she had been, but both of us have come along way in the past 9 years! Yes its hard and some days I feel like I could just walk out but I dont because my children are my life and I am their mother, no matter how hard things are.

I have an older child who has missed out over the years because of her sister but I think she understands why...I also have a younger child who is autistic and life is a struggle most days when I'm alone with them all while my hubby is at work but I could never consider what you are thinking of.

It is a very personal choice and I think that if you were going to do something, do something that isnt permanent as I think you will change your mind, he is your child and I cant imagine that you would ever forget that. Maybe once you know what is happening with your wifes cancer and fingers crossed she recovers, it might seem easier to focus on fitting louie into your family, it can be done and you have to remember things probably wont stay the same, he will improve in some ways even if not in all ways.

Try not to consider just the negative things, you are very lucky to have Louie and I'm sure he would bring you lots of laughs and smiles as well as the worries and stress. And as for 'normal' I think its over rated....when you have normal children you take much of it for granted ( I know I did before my daughter was ill) when you have 'special' children you cherish every little thing.

Good Luck making a decision that is right for both you and Louie xxx
Proud mum of 3...... Dani,13, amazing child....Sofie,11, my smiler, physically disabled, 3 strokes aged 2, speech issues, learning difficulties, epilepsy.... and Luke,2, diagnosed with autism January 2011, non-verbal cheeky chappy.
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My heart goes out to you. Your family have so much going on at the moment I cant imagine what its like. I dont think now is the right time to make such a long term decision regarding your son.
Maybe you arent coping the best you can because of current circumstances.
We are all struggling 90% of the time, but knowing that we are doing our best is all that our Children can ask for. If you and your wife can get through the following months and hopefully back to good health then you will be better place to decide what’s best for all of your family.

My daughter aged 4 went off this morning on her first holiday with my cousin and her two children it was really difficult for us to agree to let her go away for 5 days as we’ve never gone that long not seeing our Children however we had to do whats best for her & let her go as she doesn’t get the same opportunities other Children get because her brother with special needs determines how the family function and holidays or restaurants hotels etc are just no go areas for us.

Its so unfair on siblings they do have it tough but I try and look at it that my two children without special needs are very blessed and lucky to have their brother because he is teaching them so much without even knowing it. They will have such understanding and really know the importance of life all we need is family and love.
If we have both these things in life then we really don’t need anything else Children don’t remember expensive toys etc when they are older they remember that the small things and your son will know that no matter what happened you did your very best to keep everyone together.

I think certainly you should consider extra help at home you say that money isn’t a major issue so why haven’t you considered employing a special care nanny to come to your home to help look after the Children.
You can use your Direct Payments money to help with this you are going through so much stress at the moment you can possibly make any harsh decision like giving your son up for adoption and even if you do I don’t think that will solve the problem as he will always be your son and brother & part of your family.
If its only help with the daily care then maybe same amount of money putting him nursery would be better spent employing staff at home.
Maybe speak to your social worker and you may be entitled to care workers from Health Trust attending your home throughout the day to do things like feeding bathing shopping.
I do hope you family circumstances improve and you can all find the enjoyment in the family you have. All children are important and should be loved completely. Children with special needs need more care and attention then ‘typically developed’ Children and its our job to do this but no one would judge you in making the decision that you are unable to do this but I do think that such a decision would stay with you forever and always shadow over your ‘normal’ life. ‘Help’ is what you need not ‘normal’.
Good luck and I really hope things get sorted for the best for all your family.
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thanks your lovely msg ! even after i wrote it i felt bad but yr right i wont jump into any decision and im not sure how life will be once im back to work and once my wife is on the road to recovery

i think its been hard because i have been looking after them alone

i also agree aboiut the normal quote and only special people have special children, have u heard of the Holiday to holland story ?
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it took me a long time to right this post my heart goes out to all of your family you all have been through so much alreadySad you must think of all your option before you decide any thing there is help out there with out there to help with what ever you decide , no one will think bad of you!! what about short tern fostering while you get things sorted out and give you time to think without making rash decision or like catmul above says social services to help out direct payments and having a live nanny on a one to one . if you need to chat we are here for you you seem to be taking on the burden yourself xx good luck to your wife so sorry about her cancer Sad xxx

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