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.