I haven’t been the same since ds was in intensive care.

[MoSalahsBeard]

I feel like all my happy has gone.

Ds’ lung collapsed out of nowhere in late August. What followed was several days in a specialist hospital in intensive care. They found he had also got an enlarged aorta and suspected Marfan’s syndrome. He is now home/ at school and on heart medication and is doing ok.

i, however, am not. I feel like the light has gone out of my eyes, like someone has taken all my happy away. It’s on my mind constantly that he has this heart condition and that his lung could collapse again at any time. I feel absolutely overwhelmed by it, just dwarfed by the responsibility. He’s already had a difficult life, as he’s had a stammer since he was 3, fairly severe ADHD which was a really rough ride until he got medicated, and been bullied at school. I also cut contact with my mother and by extension my sister etc because I had a breakdown over the childhood abuse I endured. So he lost them too- albeit for the best.

my husband also might have Marfans and is waiting to have an echo done.

in just feel so devastated that all this has happened to my son and I don’t know how to cope mentally with it. I’m completely overwhelmed.

DS2 has a lung condition and had a terrifying intensive care stay. I was completely traumatised and triggered by so many things. Counselling really did help. I'm still not going to watch a medical drama, but I can think of things other than how vulnerable he is. I'm sorry you're going through it.

I’m sorry to hear this OP. I know a bit about Martian syndrome from researching around when myDD was born (she is severely disabled so I understand the feeling of never feeling fully at ease which tips into feeling less or no joy very easily at times).
I only popped on to say you will get used to it in time but mostly to say I cannot recommend EMDR enough.
EMDR helps to process the horror and shock. It made a huge difference to my life (I went for reasons relating to an assault so different to your situation) and I got back my resilience and strength. The joy comes back when you feel more grounded. All I’d suggest is don’t put it off and do EMDR as soon as you can (obviously as it’s a suggestion you don’t have to) as the advantages are much quicker than talking therapy or antidepressants.
Best of luck

Yes, my dh's aorta was over 6cm. They discovered this when I was heavily pregnant with our dd, and he chose to wait to have the surgery until after she was born. His surgery went really smoothly, and he came out of hospital earlier than expected.

Of course you're still feeling upset. You've had a massive unexpected trauma, which you're still dealing with. Your brain still needs time to process it.

It sounds like you've had a lot go on generally... Have you thought about seeing a counsellor?

Be gentle with yourself, OP - you’ve had a huge shock! It is a terrible realisation to face as a parent - that there is some element of our children’s life that we cannot ‘fix’ alone (speaking as a parent of a child who went through five years of gruelling cancer treatment)
From experience, the more informed you get through appointments, etc. the less vulnerable you will feel. Ask all the questions you have - even if they seem silly.
Talk to other parents once you’re in a designated clinic setting, etc. and perhaps speak to the nurses about family support / counselling…

I totally get it op. My son was admitted to ICU when he was 3 years old. Subsequently diagnosed with a rare genetic blood disorder that affects his immunity to infection. There is the trauma of the ICU admission as well as the life long diagnosis to deal with. The over whelming sadness that there is something wrong with your child along with the guilt of it all. He is at University now and I worry worry everyday. These things definitely change you.

I get the family estrangement thing - you don't have as much emotional ballast after something like that. And then you've had the medical diagnosis for your son and perhaps your DH too.

It's all a lot and it's entirely understandable that you are feeling wrung out.

I wonder if you would think of some counselling to help you sort through the things that have happened.

I'm really sorry you endured an abusive childhood. I've had this too and find it hard to deal with other problems as I feel overloaded. 🌻