please Help! severe anxiety as a parent of disabled child — Scope | Disability forum
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please Help! severe anxiety as a parent of disabled child

Hi there, I'm new to this group & found you after searching for some help.
I have a 2yr old son who has Osteogenesis Imperfecta (Brittle Bone Disease). We found out his diagnoses shortly after his birth as my husband also has the condition, so I was not completely blind sided by the diagnoses. I must admit I was still very shocked as off the back of the great ultra sounds & problem free pregnancy i'd convinced myself he didn't have it  - 50% chance of passing it on. Myself & my husband discussed for many months about having a baby before falling pregnant, it was a decision we didn't take lightly but we decided to do it as he felt confident in our ability to look after our son, after all he'd been & done it, having had a great childhood managing hes breaks & still living life he felt happy with the choice we made. I think for myself I was thinking mainly logically & not with my emotions.

Fast forward 2 years & although I love my son with all my heart I as a person have completely changed, i'm a shadow of myself & a complete nervous wreck. The main symptom of my sons condition is he has weak fragile bones, this means he can fracture easily. Due to this I live on edge, constantly living in fear of the next fall, the next break - its exhausting! to the average person he looks completely normal like any other 2 yr old, wanting to do normal toddler things like soft play & parks & i let him do it to a certain extent as I want him to have a life that is as normal as possible but again each experience is terrifying & exhausting. On top of this is the overwhelming amount of hospital appointments & clinics I have to keep up with, trying to get the time off work & get there when a lot of them are at GOSH in london. Then there's the trips to A&E, my son is currently in a full arm plaster cast after falling over, he broke his arm/elbow in 2 places. He needed an operation & several days in hospital. This is his 3rd break so far.

The hardest thing about this and which I wish i'd thought about before is having to see him in pain. This is by worst the hardest thing i'm having to deal with. Hes only 2 & cant understand whats going on & its heartbreaking when hes in pain & I can do anything to help. Hes frustrated because hes in another plaster cast & cant move around like he wants, waking frequently in the night because hes uncomfortable. 

For me I just feel awful. I feel guilty because he has this condition & I've lost who I was/am. I don't know how to relax,be happy,enjoy days out,enjoy time with my husband - ANYTHING! I pretend to everyone & try my best to have a normal life but when i'm home alone & my sons in bed i'm normally overthinking or crying about something. The best I can describe myself is a ball of nerves waiting to have a melt down & I don't know what to do anymore. 

Do I need counseling, medication I'll try anything to feel a little normal again???

Thank you 



  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,673 Disability Gamechanger
    Hi @Dots2017 welcome to the community and thanks so much for sharing.

    I can't imagine how difficult it must be to see your child in pain, it must be very tough.  I have three kids and I know when they are poorly, I just wish I could take it away from them and so for you it must be very upsetting.

    I don't have a disabled child so I don't want to patronise you by pretending I know what it's like but I do know that being a mum is hard work and the way I get through my parenting issues is to speak to others.  Do you have many friends who are parents who you can spend time with/chat to honestly?

    You ask if you need counselling or medication, if you are questioning this then it would probably be good to speak to your GP who can advise on both of these things.

    Do you speak to your partner about how you feel? How does he feel? 

    From your son's point of view, it must really be good to have his father around him so he can see his impairment in other people.  When you say "he felt confident in our ability to look after our son, after all he'd been & done it, having had a great childhood managing hes breaks & still living life he felt happy with the choice we made" does this bring you comfort? Your partner has lived this and said he had a great childhood, so do you feel this can help you believe that your son can have the same great childhood?

    This community is a friendly, welcoming and caring place so I hope you can connect with other parents and carers here.  :)
    Senior online community officer
  • Blue Frog
    Blue Frog Member Posts: 358 Pioneering
    Please please don't worry about worrying!

    We all do it, almost all the time. I'm not saying that to dismiss you, just to reassure you it's part of having a disabled child that people don't warn you about. I am almost constantly thinking about my little girl, questioning what I am doing, worrying if it's good enough, trying to guess what all the professionals are thinking about us.  

    I think it just shows how much we care.  

    There would be nothing wrong at all in having a chat with your GP, or the carers centre.  I had some CBT, cognitive behavior therapy, which has really really helped with my anxiety.  Anti-depressants took the edge off, but learning how to sort out my thoughts with CBT has really made a big difference. 

    It sounds like you are doing brilliantly, a lot of people ignore how they feel but you are definitely not on your own x
  • stnzjuls
    stnzjuls Member Posts: 3 Listener

    I have a rare genetic disorder called Oculo-Dento-Digital Dysplasia - a mouthful I know, referred to as ODDD. 7 years ago, my youngest son aged 2 at the time wasn't developing within the milestones as he should and began to do involuntary movements with his head and arms. Under investigation, epilepsy was ruled out, and stereo tepees was suggested. Due to the disorder being rare, he under went an MRI and had an ultrasound scan on his heart. the results was devastating. We learnt that he has a tonsillar herniation - medical jargon. Basically his skull plate does not cover the bottom of his brain and it can be life threating during development but nothing can be done unless he deteriorates. Furthermore,  the scan on his heart discovered a pin hole which has altered in size and may need surgery.
    Firstly, I blamed myself that he had these medical issues as it is a genetic disorder. I quizzed my pregnancy which went ok apart from UTI's causing me to have early contractions in which he was nearly born at 30 weeks. Instead, he was born at 38 weeks with a healthy weight of 9lb 13. 
    I don't take any anti depressants, I learnt that what ever the implications my son has in his life, I will be there to support and nurture his progress. It is about learning and adapting to the needs which requires a positive drive of support. Your emotional wellbeing is important, expressing emotions and concerns was difficult as I have to be the strong one, it does strain the family. You are not alone, my worries stay with me all the time, it is a natural instinct. Best wishes xx


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