Just feel so sad about my son

[SinkGirl]

I’ve posted about this before and I’m sorry to vent yet again but I feel so low and I have no one to talk to.

One of my boys has had health problems from birth - complex conditions but fortunately not too seriously affected. He had a big developmental regression about six months ago and has had some vision issues so we’ve been having various appointments, tests etc.

Last week we got results from an MRI which fortunately ruled out a condition they were concerned about but showed he has some mild scarring in his brain. The consultant who told us was really blasé about it.

Everyone I’ve spoken to keeps telling me it’s great news, could be so much worse, etc etc, and I know they’re absolutely right. But I cannot stop thinking about the fact my beautiful boy has brain damage. I don’t even know if the problems he’s having are related or not but I feel so sad. Don’t get me wrong, I’ll love him with everything I have regardless of whatever problems he has, but this has just hit me so hard. I can’t bear to talk to any of my mum friends, they don’t understand.

I know there are a million worse things that could be happening, I really do. I know we we are really fortunate it’s not more serious. So why am I so sad?

How do you get to grips with something like this? We have an appointment at the child development centre next week so will see what they say about everything. It’s not even that I’m worried about the future, I just feel so low about this news even though everyone around me thinks it’s no big deal.

If you’re me, you bury the sadness deep inside and have a little private cry now and then. Otherwise you get up every morning and put one foot in front of the other.
DS had a brain tumour at 3 which wasn’t touched by chemo. He has a VI.
Radiotherapy gave him radiation necrosis, a brain injury and epilepsy.
He’s 13 now. He makes slow progress, he moved up to stage 7 reading books recently which is amazing. We celebrated as a family but it feels like the rest of the world doesn’t really get it. I’m sorry you’re in this place too.

I’m so sorry Velvet, I feel like absolute shit for being so sad when we don’t have to deal with anything like that. I’m so sorry you’re having to go through this. It sounds like you’re doing an amazing job.

How old is your boy?

I think I remember your other thread? Wasn't there an issue because they should have sent you for this scan a lot earlier as he'd been experiencing problems which this scan might have gone some way to explaining?

Rant away. Yes it's shitty and it can oftentimes feel so isolating that the rest of the world seemingly doesn't care or that things could be worse but you're not living that 'alternate' life - you're living the life that you have; dealing with the circumstances that have been presented to you.

I hate the whole 'it could be much worse' rhetoric. Yes it could but I'm not living that fucking life am I! It's not a fucking competition.

He’s almost 23 months. He had two months in nicu with health issues that may have caused the scarring. They did do ultrasounds of his head in the first six months but they never told me they found anything. Now I need to get copies of the reports to check. Maybe they missed it or maybe they did find it. I did find out the HV was supposed to be monitoring his head size because it grew very rapidly when he was a few months old but of course that never happened - no one ever t

talks to each other.

I don’t think there’s anything they could have done and there’s nothing they can do now. If the development problems are related then I don’t know what that means for the future. These are all things you’d hope they’d talk to you about, not just say “oh, just a few little patches on his brain” and then move on. It’s only because I asked more questions that I know what it actually is.

I don’t know, I think I just need to adjust to the information I guess. I think it’s the attitude of the doctors (including his paed who told me the report showed nothing!) that have really gotten to me.

My son's brain didn't form in the womb and he has cerebral palsy. He is now 32 and it is hard.
He had an MRI scan and it showed the cerebellum hadn't developed as it should!

I can't tell you I understand but it's pretty clear you have a lot of feelings. If your sad ect feel it. The worst thing you can do is feel bad or conflicted about your emotions. You don't choose them they simply exist. Feel your feelings. You bury feelings alive not dead. I don't think I've said feelings enough in this post. X

I’m so sorry Tiny - they were somewhat expecting to find parts of his brain missing, as they thought he had a different condition, so in that sense we are extremely fortunate. I can’t imagine how hard that must be. The condition they did find often causes CP when it’s more severe but (touch wood) I haven’t seen any signs of that although I will be asking about it next week as I gather in mild cases it can take a while to diagnose. Sending hugs to you.

Moomin I know you’re right. I just couldn’t have predicted I would find this news so hard. I don’t know why it is.

I understand I do really. My Ds who is nearly 3 was diagnosed with a brain condition which required emergency surgery on his first birthday. It has resulted in his motor skills being delayed but he is getting there,does not know any different and loves life.
I have days where I feel very bitter and sad for him especially as he was let down by a lot of services not supporting him "oh he will grow out of it" party
But as others have said we get up each day and put one foot in front of the other and I try not to get too anxious.

I also think going from your previous thread was that the doctors/various healthcare professionals involved were not forthcoming. Short of being a medical specialist yourself of course you wouldn't know what does and doesn't constitute a problem.

I think there is also a fear of the trepidation in walking this path to understand who knew what when and what did they did or didn't say about it.

My family and I went through similar with one of my nieces - when she was born they told us she had about 5 hours max to live and that was it. Someone else came to ask us about organ donation because on another ward a perfectly healthy baby was waiting for a heart. They were sizing up my niece for it. When she was born they took her elsewhere and we had to actively ask to see her as they'd all but decided it was a lost cause. A lot came out of that experience. I don't think I've ever viewed HCPs in the same light since.

I wholly empathise and wish you and your son well.

Thank you boomboo - I’m glad to hear he is making progress. I think my fear is that he will never progress from where he is now since I’ve seen so little progress since his regression but I know that’s really unlikely. Yesterday Facebook showed me a video from a year ago where he was copying all sorts of things and he can’t do a single one of them now. It breaks my heart to see it.

Oh vlad that is awful. They took my boys straightaway when I had my section and kept me downstairs for seven hours - I was convinced one of them had died and they were just waiting to tell me.

I can’t imagine how that must have felt.