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Heartbreak for 23 year old DS

11 replies

Flyingwithoutwings78 · 05/05/2023 21:09

I have no-one in real life I can talk to about this and it's tearing me apart.

He turns 24 in July.
His development froze as a one year old baby.

During his first year of life he'd been keeping up with all his milestones.
He was a happy, smiley baby who reached for his toys and put his arms up for me to lift him up. He'd even started to babble.

After his first Birthday it was as though a light had been turned off.
The smile of his baby days had been replaced by a blank expression. He couldn't look me in the eye, and lost interest in all his toys.
I'd spend endless time trying to engage him in various activities. I'd read stories to him. I'd point out things we saw while out and about, but it was as though he was drifting away from me. There was nothing I could do to bring him back.

His childhood passed him by without him ever knowing the magic of Christmas or Birthdays. He never had a friend. Never learnt to read or write.
As an adult he remains completely non-verbal, having never spoken a word in his life.

The hardest thing for me as a mum has been watching him physically growing into a handsome young man, passing through each stage in his life, while remaining completely oblivious to it all. He still shakes a rattle.

He is now in Adult Care, due to the high level of care he needs (two carers when out in the community as he has no danger awareness at all), and I am a single parent with his 3 younger siblings at home (my youngest child has a different disability and also needs round the clock care and constant supervision, and I just couldn't manage both their needs).

I am currently going through a very tough time with my mental health.
I have PTSD, and start my CBT next week.
The flashbacks are heartbreaking, and the panic attacks are draining me.

My son is now the exact same age that I was when I gave birth to him.
That has brought with it lots of feelings of guilt that he will never experience the independence or freedom that I myself have been blessed with.
The "babies" he started out with back then are now living their lives to the full with their chosen careers, in relationships, even becoming fathers, while my son remains lost in his own world.
Even though I have never heard his voice, I have this indescribable longing just to sit and have a chat with him.

I feel so alone and isolated with this.
I am constantly on the verge of tears.
I'm 47 and my hormones are all over the place, which doesn't help either.
I feel as though I am trapped in a dark hole that I can't climb out of.
To add to it, I am limited to medication I can take due to hemiplegic migraines which are also hormone related.

OP posts:
QueenOfHiraeth · 05/05/2023 21:13

I'm so sorry. No advice but sending hugs

wankerseverywhere · 05/05/2023 21:13

I'm so sorry. I don't have any practical advice other than to let yourself grieve for everything you and he have lost. I wish I could give you a hug.

LightDrizzle · 05/05/2023 21:17

I’m so sorry to hear this. It’s very, very hard and unfair.

My DD2 is 24 and very severely disabled. However she suffered from birth hypoxia and was very poorly as a neonate and beyond and I think what you dealt with is probably even more heartbreaking, it’s hard to say.

One consolation I have is that my DD doesn’t know what she’s missed as I do and luckily DD does mostly enjoy life. Does your son experience contentment and pleasure? I’ve never heard DD speak either.

It’s a hard and lonely path but thank goodness your boy has a mum who loves him and lives in a country that offers supportive services, - even if they are not all that we could wish for.

Irritateandunreasonable · 05/05/2023 21:29

Oh, my heart absolutely broke reading this. What an absolutely wonderful, loving Mum you are. Thank God this boy was born to you.

Is he happy? He knows no different to his life now, remember this affects him mentally and emotionally way less then it affects you. He is ok. You deserve to be ok too, and you should be. Your son is ok, in his heart, he is ok.

BHRK · 05/05/2023 21:31

I’m so sorry for what you’re going through. Could your GP refer you for counselling to help you work through some of these feelings?
you sound like a wonderful mum. You’ve loved and cared for him for 24 years. You’re amazing

shadypines · 05/05/2023 23:06

Sending love and hugs. I have a wonderful 24 yr old son who I am struggling with, on different levels,but I can totally empathise.
You are one amazing mother.

shadypines · 05/05/2023 23:07

Sorry not to offer more help, I wish I could.

Bjornlionside · 05/05/2023 23:09

Oh OP,

It's a journey no parent expects to take. I too am on that journey and the thought of the future gets more daunting day by day. My DD is nearly 12 and also stuck as a babbling 1 year old. Non verbal and still in nappies. I can't believe this is our life, that it's turned out this way. It's not supposed to work like this is it?

I completely understand how you must be feeling and when I read your post it made me cry. All we can do is love them. Love couldn't be more apparent from your post. What else can we do?

You not only have the heartbreak of your eldest son to live with but your own health issues and another child with a disability. That's bloody tough. No wonder you feel like you do. I feel awful feeling annoyed when people tell me I'm doing a great job, I shouldn't because I know it comes from a good place. I just don't want to be doing this job. I want to be a normal mum with a normal child and less to worry about but no one can change what's happening and this is my life now.

Do you find you are able to appreciate things that perhaps you might not have done had life been different? Some days it's enough to keep me 'up' - reminding myself that our lives are just a tiny dot in the whole of the history of mankind and to try and enjoy as many moments as I can and appreciate simple things. Really enjoy them, overly enjoy them, more than I did before any of this happened...

Just looking out the window in the morning with a cup of tea watching the birds come to the feeder. Really lapping up laughter when I hear it, particularly when it's my children as that means they're getting along. Stealing at least half an hour in the morning to sit in the sofa with a cuppa (a theme here!) with no TV on. Just quiet. My little girl laughing her socks off at something. Her laugh is beautiful. Just like her. I try so hard to temper my worry for her with telling myself at least she isn't going to have anywhere near the amount of worry most people have and she is so happy. Such simple things make her happy.

Those things definitely don't always work but they sometimes do. Wish I could give you a big hug OP

💐💐💐

EarringsandLipstick · 05/05/2023 23:13

Oh OP 💔

I'm so sorry. You write beautifully about your DS.

You sound amazing. Have you any help or support in your life?

shadypines · 06/05/2023 13:14

@Bjornlionside that is one of most beautiful posts I've ever read. I hope it has given everyone, esp OP some comfort. I did not mean to sound trite when I said she sounded like an amazing mum. In these circumstances it is difficult to know what to say but I do feel for everyone who is struggling, it's heartbreaking and I do wish I could give her a hug.

Flyingwithoutwings78 · 06/05/2023 16:13

Bjornlionside · 05/05/2023 23:09

Oh OP,

It's a journey no parent expects to take. I too am on that journey and the thought of the future gets more daunting day by day. My DD is nearly 12 and also stuck as a babbling 1 year old. Non verbal and still in nappies. I can't believe this is our life, that it's turned out this way. It's not supposed to work like this is it?

I completely understand how you must be feeling and when I read your post it made me cry. All we can do is love them. Love couldn't be more apparent from your post. What else can we do?

You not only have the heartbreak of your eldest son to live with but your own health issues and another child with a disability. That's bloody tough. No wonder you feel like you do. I feel awful feeling annoyed when people tell me I'm doing a great job, I shouldn't because I know it comes from a good place. I just don't want to be doing this job. I want to be a normal mum with a normal child and less to worry about but no one can change what's happening and this is my life now.

Do you find you are able to appreciate things that perhaps you might not have done had life been different? Some days it's enough to keep me 'up' - reminding myself that our lives are just a tiny dot in the whole of the history of mankind and to try and enjoy as many moments as I can and appreciate simple things. Really enjoy them, overly enjoy them, more than I did before any of this happened...

Just looking out the window in the morning with a cup of tea watching the birds come to the feeder. Really lapping up laughter when I hear it, particularly when it's my children as that means they're getting along. Stealing at least half an hour in the morning to sit in the sofa with a cuppa (a theme here!) with no TV on. Just quiet. My little girl laughing her socks off at something. Her laugh is beautiful. Just like her. I try so hard to temper my worry for her with telling myself at least she isn't going to have anywhere near the amount of worry most people have and she is so happy. Such simple things make her happy.

Those things definitely don't always work but they sometimes do. Wish I could give you a big hug OP

💐💐💐

Thank you so much.
I find that helps me too, just to focus on the little things that make me smile.
I have a robin that comes to my garden most days, and the past week I have loved seeing the Cherry Blossom trees in flower.
I think it makes me appreciate the things I wouldn't normally notice.

My son has a lovely laugh just like your daughter, and it's the best sound ever isn't it.
We have no idea what he's laughing at, but it's just so nice to know he is happy in his own world. ❤

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