New to the site. In need of support

Hi everyone. I hope you are as well as can be.

im new to the forum (as the title suggests!) I am a carer for my 4.5 year old daughter. She was born with no heartbeat and was resusitated for 8 mins and sustained a severe brain injury (hie grade 3)

She is non mobile, non verbal, 100% GJ tube fed, has epilepsy, minor sight and hearing impairments, severe athetoid/dyskinetic movements, and behavioural issues.

Recently she started school. Since starting she has picked up bug after bug. It’s never “just” a cold. It always involves rescue meds for seizures, pneumonia, ambulance trips etc.

I am absolutely fatigued. She currently has influenza B so is on antivirals. She is crying and agitated all day. I’ve sobbed a lot. Feeling helpless and powerless. When she’s “well” it’s tough… the lifting, the meds, the dressing, the keeping entertained etc. Whilst she’s ill we have no school or access to respite. I’m feeling so low.

Even on our group chats etc no one seems to bother. They’re just like “Hope you’re okay” and that’s it. Not sure what I’d prefer them to say, but it just feels sort of empty.

I am always told it will get better. But im thinking… she will get bigger, it will get harder. I try to be positive, but it’s hard to accept I will never have a “normal” life again. Shes my world and i love her and i feel so guilty for feeling this way. I guess it’s the tiredness.

Since having her i’ve had two miscarriages one involving me needing surgery. So now it’ snot just birth im scared of. also we had to sell our house we had worked hard for as we couldnt get it adapted. So now we rent a bungalow from a charity. She has a lot of equipment and we haven’t got a lot of space.

I feel so lonely all the time. Then when around people I have no energy to socialise and just want to go home. People say to meditate etc but I just have no time or energy. This is the first time ive sat down today.

Sorry to moan. Hope everyone is well.

Welcome to the forum, my son was brain damaged at birth too, 39, can’t read and write or do any maths, I’m just grateful he is fit and well in other areas.
I don’t understand why you don’t have lots of help. Has anyone mentioned NHS Continuing Healthcare to you. What are Social Services doing to help? Have you had a Carers Assessment, and your daughter, a Needs Assessment? Have you heard about the Family Fund?

hi there. we do get lots of help! we do have respite and overnights, and she does go to a special needs school with transport. it’s just whilst she’s contagious with the flu we are having to stay in. i find that day to day is hard but then when she gets ill it reaches a whole new level of exhausting. we are really lucky with our care package, it’s just a shame that right now we are housebound!! xx

Then you need a FLEXIBLE support package. Is it NHS Continuing Healthcare?

“Shes my world and i love her and i feel so guilty for feeling this way.”

PLEASE don’t feel guilty and you are NOT moaning. There isn’t a forum member who doesn’t feel for you and knows that WE are ‘well off’ in comparison with what you and your little girl are coping with.

It’s desperately sad, and shows how ‘difficult’ it is when medicine can prevent ‘nature taking its course’…as would probably have happened a hundred years ago - and yet can’t ‘cure’ to give your poor little daughter a better state of health…

When you say the docs say it will get ‘better’ do they mean that her health can improve as she grows up?? I know this may sound ‘over-hopeful’ but never give up on what medical science MIGHT be able to do within your daughte’rs lifetime that is not, at the moment, possible…

Are you in any kind of support group for other mums with children with high medical care needs? It would, at the very least, give you a sense of community - even though it’s a club ‘no one wants to have to be a member of’…but ‘solidarity’ can be comforting I found that when my husband was diagnosed with cancer - those who are not so affected are kind, but they don’t ‘get it’…


Then you need a FLEXIBLE support package. Is it NHS Continuing Healthcare?

Main CHC / NHS Continuing Healthcare thread … in case it’s needed.

Unfortunately, you are most likely correct.
It will NOT “get better”. It WILL be more of a challenge as you get older, and she gets older and heavier, you are absolutely correct. This is why it is really important for the family to share her care, both at home, and away from home.
It helped me enormously to talk to a mum who had a mentally handicapped child a few years older than my son, M. I learned more from her than anyone else.
Could your daughter’s school put you in touch with a mum of an older child?
Do you have a PTA or similar for the school, coffee mornings or similar when you can all get together for a chat?

Please put thoughts of another baby on hold for now, for the next few months, concentrate on getting your daughter’s care needs met, so that when you have another baby, you are fit and well and able to enjoy it.

That sounds exhausting for you, I feel your pain, I think it’s especially hard on mums/primary career. It becomes all consuming, if you’re not looking after your child, you’re thinking about what you can do better / differently / the next thing etc.

I don’t think people understand unless they’ve been through life with a sick / disabled child. It’s a totally different level of parenting that does quite often suck!

I hope you get a lots of treats over Christmas and maybe a little time off. If circumstances allow maybe partner/husband/family can pull together to give you a break. You might need to insist on it.

Best wishes.