I have written a fair few threads about things that are going on at home. I have had a few days to think and I need some support, advice and anything you lovely mnetters can offer.
This post is outing but I'm past caring and I don't want to name change.
My dd is 3 yrs old 4 in March, she was born with the 7th cranial nerve missing (resulting in a paralysed face on the right side) now she's older other medical needs etc have become apparent.
Hyperacusis - we always knew she was sensitive to sounds but now she is able to vocalise what hurts, is uncomfortable etc. We have been referred to ENT to have tests and possible have a hearing aid that emits a low frequency so sounds are not painful.
Long sighted - her right eye has a larger perscription ion than her left but she needs glasses and the optician thinks she will always need glasses. No other eye problems apart from needing eye drops because she cannot close her right eye.
Recurrent infections - Utis mostly, she has had scans on her kidneys which appear normal but has microscopic blood in her urine constantly and has been hospitalised twice for iv antibiotics for uti alone. She is now under a renal specialist.
Sleep apnea - she would stop for up to 20 seconds, due to her paralysis but she had enlarged tonsils and adenoids, she had her tonsils and adenoids removed on Friday just gone (and the reason everything has blown up), she was hospital until yesterday because she suffered a bleed from the throat and had a post op infection which she was admitted for.
Behaviour issues - this is the link to my thread
Blood disorder - she has a condition where her blood clots too much so is monitored after operations and treatments but so far hasn't had to have blood thinners.
Hypermobility - again she has been referred to a specialist.
So in all dd has had problems since birth but I think we have all coped very well, dd was going to preschool but has not been in 2 weeks due to sickness (uti) and medical appointments plus an operation.
She has been referred to an education psychologist who will assess dd before she starts school in September to see if she needs additional help etc.
So dd had her adenoid/ tonsillectomy on Friday, she was released Friday night, Saturday morning she had quite a big bleed and was admitted again (apparently this can be common) she then started having rigors and fevers in the 40s so she was treated with antibiotics and released yesterday afternoon.
So Monday I came home from the hospital and dh stayed with dd for a few hours, I got my ds from school, tidied up a bit, got some more things for hospital and just had a break because I was exhausted.
My ddad had a day off work and didn't even ask about dd but proceeded to lay into me with the following points.
- dd shouldn't of had her tonsils out because she never had tonsillitis (obviously but it was for sleep apnea which my parents think doesn't exist and I'm just being over protective).
- the reason she got an infection after the operation is because I gave her a bottle of milk, plus she didn't need the operation anyway.
- I'm forever getting her tested and in his words "she's been stuck (I guess her means blood tests) cut (I guess again he means operations) and tested and she isn't having a childhood.
I'm taking away her childhood because she's always in hospital or being tested for something.
She's had two general anaesthetic Mris because they didn't know what was causing the palsy.
In ddad and dm words "there are children with spina bifida and worse conditions that dd and because she doesn't have anything life threatening" I should stop all treatments and let her be a kid. When she is older and has the ability to make decisions then she can be tested "poked and prodded".
I tried to explain to them that I know they are worried as am I but I cannot stop her having her glasses, hearing tests etc because she needs these things.
My ddad then said I was making everything seem bigger than it was (I faked her opticians exam and apparently just requested her tonsils removed and the Drs agreed) and so they will support me but they won't give me any sympathy.
My ddad said he was going to report me to social services for child abuse because "I won't leave her alone".
I did ask why they chose to do this when dd was in hospital and I've got enough guilt about dds medical conditions and apparently I was making it about me again.
I was so tired and tbh the thought of not getting my dd medical treatments she needs because my parents (who have given me enough problems, I've been through hell with them tbh) think I should let her be a kid is ridiculous.
Ddad said I didn't even let her play with dolls? I don't know what that was about but I think he was clutching at straws.
I went back to the hospital in tears (I didn't get a word in edge ways to try and make them see reason) dh is furious.
My dsis lives next door to me and our parents are round everyday, I'm not an argumentative person so I just stayed quiet, this morning they came through my back garden to access my sisters house.
I went round to say dd had been released and to say hi. Ddad walked off and didn't say a word, dm just said she knew she was released, then looked in my back door saw dd had just pants on then lectured me on why she wasn't dressed. The reason is because she is very itchy, hot and still having fevers. The house is warm and I'm not going to make her uncomfortable.
Dh wants to move, I want to scream. We're so stressed out and now I'm worrying about social services knocking on our door because of my parents.
I spoke to my health visitor and she said nothing would come of ss because I'm doing everything a responsible parent would.
I've made an appointment with our gp to discuss my parents concerns and she is going to kindly write a letter to ease their concerns, I don't know what else I can do. I just need to concentrate on dd getting better but now I hate myself for everything she is going through.
I have depression from when I was a teenager and suffered panic attacks etc and after my parents rant at me I had a panic attack which I haven't had in years. It was horrible.
What do I do? Aibu? I need someone to talk to.