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.

I didn’t want to read and run.

My DS has health issues that came to light a couple of years ago, so I know the shock you’re feeling.

Things get gradually better. When there’s nothing else, there’s hope. It’s very sustaining in the end.

Doctors are brilliant and eventually you learn to live around it.

Your light will come back, I promise. Be kind to yourself.

That sounds so overwhelming, from every angle. I can understand why you're feeling anxious.
I wonder if speaking to someone might help you OP? Even just to develop some coping mechanisms, more than anything?

What a bloody mess for you, I think everything has just collapsed around you and all your jenga blocks have fallen.
its ok, it won’t always feel like this, but right now it’s ok to feel like this - you can’t control everything, but you can control and help how you are feeling - you need to speak to someone, just to voice your worries your thoughts your feelings and have them validated as real worries.
Maybe also see your Gp and maybe take some short term/ling term anti depressants.
Everything else is a waiting game, all you can do is love your husband and love your son and create a safe nest for you all to be in whilst you await reviews and tests.

I hear you. A year ago my DD, who is far away at university, got diagnosed with a scary lifelong condition that makes her vulnerable at all times and dependent on medication. I feel so hopeless and desperate. I spend a lot of the time on edge and when she calls I worry it’s actually the hospital or something awful. It has been alarming a couple of times. No advice. I think we just have to hope and be happy each day that we all get through it. I th8ng there may be more of us than one imagines. I also developed a morbid habit of reading memoirs of parents who lost children or whose DC have difficult health conditions. Does it help? It makes me feel less alone.

I’ve kind of gone the other way and can’t bear anything medical or anything re kids having health problems at all. Strange how things affect different people. I’m so sorry for what you’ve been through with your daughter.

I keep having the thought ‘omg he has a heart condition’ going over and over and over in my head all day long. I think I haven’t accepted that this is happening yet.

I feel traumatised by what happened in the hospital too and how scary it was when he was taken into intensive care.

You just develop new mentality that you have ill relatives and that's that. New normal

I feel traumatised by what happened in the hospital too and how scary it was when he was taken into intensive care

Can you have a debrief with anyone? It might be something you can access through your GP? When these things (the medical side) are explained to you they might seem less scary somehow, still there, but explainable and real things you can try to understand to stop them having that scary power over you?

We are seeing the cardiologist in a few weeks so I have a tonne of questions to ask that I hope will give a better view of the outlook and his future. That will be helpful, hopefully.

I’ve also referred myself for counselling.

I haven’t yet done it, but a friend who has been through serious trauma w her eldest recommended that I should do EMDR (we have been through something a bit like you). I haven’t because our situation isn’t at all stable, and I feel I need to find my feet a little more first - but I also know that therapeutic help will probably be part of that feet finding.

Its tough. And the world doesn’t look the same. It just doesn’t. Maybe it’s not worse, just different - but at the moment it sure feels worse…

I relate very hard to this. The name of my DS’s condition reverberated around my head for about a year. I still get a physical reaction when I hear it mentioned unexpectedly. I came close to suicidal ideation, purely because I felt trapped in a life of worry and trauma that I could see no way out of. I was desperate.

But…days pass. Nights pass. Weeks pass. Then months. We’re all still here. One morning you realise it wasn’t the first thing you thought of when you woke up. You have a good day. Then you might have a bad one. You start to trust that the bad days pass, and the good days come round again.

It’s awful. But it’s life. You just have to live it in small bites, not look too far ahead, and just have hope.

Counselling will help .

And know about the stages of grief applied to these situations
Processing Grief After a New Medical Diagnosis https://share.google/Y7ZuvUaqwrea5PAqN

Op this made me sad. It is still such early days and sometimes when you are going through stuff you carry on but when you look back you think wtf just happened?! And it all hits you then too, not that it hadn't before. Not sure if you have any already and of course you will play it all in your head but the looping of the heart condition I wonder if your dr could give you some anti depressants to help with the anxiety and to help you cope and feel stronger

OP, no advice as such but time will things easier. My DC has a rare condition which means he will always be a bit different, and he could develop a deadly infection at any time. In his case it can be difficult to spot. When he was younger I was always on high alert, anxious he could fall ill at any time and worried I’d miss the signs, but as he’s grown older we’ve got used to it and things have got easier, a lot of our fears haven’t come to pass and we’re much more at peace with the situation.

OP your reaction to a terrible life threatening event is completely normal - please speak to your GP, you probably have PTSD and it is very treatable. Don't be embarrassed or ashamed - it's a completely understandable human reaction to a horrible experience.

My cousins have Marfan Syndrome and once diagnosed, it's quite common to live a normal life as long as you have regular check ups. There's so much the doctors can do now, life expectancy is normal as long as the condition is managed and monitored. 3 of my cousins have had an aortic sheath fitted and recovery was quick and they are all fine. You can access lots of information and support here https://marfan.org/conditions/marfan-syndrome/

Hi, I did want to read and scroll past. My dh and dd have got Marfans. Dd is 22 now, and has been on heart meds since she was about 18 months old. She hasn't had a spontaneous pneumothorax, nor has dh. Dh has had his ascending aorta and aortic valve replaced when dd was a baby. He has some significant issues with his eyes that dd has escaped so far.

If you are on Facebook, there are some excellent UK support groups with some very knowledgeable people. The Marfan Trust is well worth joining, too - and they are also on social media.

Good for you OP. That will help you a lot and give you the support you need.
Is your husband also able to advocate for your son so that this is not all on you? Also, how is your son taking it?
I remember your original post...

Yeah ds doesn’t seem too bad, there was one blip where he was upset for a few days but I do check in with him often to see how he is mentally and he says he’s ok.

my husband attends every appointment and is often on it more than I am with the question asking and thinking of things.

@deepbreath @Endofyear im heartened to hear about your relatives. Were any of these heart surgeries anything to do with an enlarged aorta?

That's good. What a strong lad! And that is great that DH is on board too.
Hard as it is it will be very important for you to shield your son from your anxiety so that you don't project it onto him, as he is ultimately the one who is going to have to live with and manage his condition. Your counsellor will be able to help you with that and I really hope that gets going asap (waiting lists can be so long...)

I feel for you and with you!

One of my kids was diagnosed, getting on for 3 or so years ago, with a medical condition and initially had some very severe & dangerous episodes. Things are more stable now but I am conscious it is always a case of ‘for now’ - we cannot tell what the future holds. (True for us all I suppose- it’s just that illness focuses the mind on this.)

I went through some very dark days after the diagnosis, with vivid nightmares, and sudden auto-immune symptoms- wheezing, hives, IBS type symptoms, that I think were a stress reaction.

Even now to be honest there are days when I find myself thinking that I really wish I had not had children, just to avoid this stress. It feels a bit like a life sentence sometimes!

I have been lucky enough to be supported in these years by my very stable & committed partner, but I am conscious that there are limits. I try to keep the darker days from him but then worry about the effects of shutting him out- can’t win really!

Clearly these experiences do change us- I am a very different person now from 3 years ago. And like you I find joy is in short supply.

I think one thing that might help would be to have one friend you could be completely honest with- someone to tell when the worries are really mounting & who would always be there just to listen openly, & to advise, not to smooth things over or to minimise, but to give a reality check. But that is a huge ask of any one friend & I do not know if it is feasible.

I am really glad your son is making such progress- I too remember your original posts about this.

I’m so pleased you have referred yourself for counselling. I can’t imagine how frightening that was for you. My son once had a scare with something and I remember vomiting with fear. It completely consumes you.

My friend’s brother had a heart transplant when he was 14/15 years old. This was so traumatic for the family. However, despite being on meds for life he continues to live a wonderful life and now has children of his own.

You won’t always feel like this. Once you address that trauma you will see how well he is managed. Hopefully you get an understanding cardiologist who helps you feel listened to and understands your fears.

Modern medicine is wonderful. Now he’s under their watchful eye all will be well.

Take care.x

Yes it was, they have a yearly check up with the Marfans specialist and it was monitored closely until the need for surgery.