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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU

24 replies

justhetwoofus · 15/06/2019 00:51

To feel that I’d like another chance at life.....at 35 I became the mum to a beautiful son who through lack of oxygen is severely disabled.
I absolutely adore him,but at almost 60 AIBU to wonder what what life could of been like .......

OP posts:
TrixieFranklin · 15/06/2019 00:53

Not unreasonable at all. You're amazing Thanks

purpleboy · 15/06/2019 00:55

Of course your not unreasonable. Life has felt you a cruel hand, but I'm guessing you've made the most of it and regardless of his disability you have a beautiful son you adore.
Do you have support for your son or are you doing it all on your own?

purpleboy · 15/06/2019 00:55

Dealt

Original poster
justhetwoofus · 15/06/2019 01:07

Yes,very much alone, no breaks, holidays,time for fun.....
But at the same time grateful for my son and love him very much.

OP posts:
justbeniceplease · 15/06/2019 01:14

I think we all have times like this. Times where we wonder. Thanks

purpleboy · 15/06/2019 01:15

I'm so sorry you have no support, and that your feeling down. Your an incredibly strong woman to raise your son with such difficulties on your own. Not many people can cope with that level of care.
Is there anywhere you can send him for respite care? Or would you even want to? Local support groups.
I take it he lives with you full time?

Anarchyshake · 15/06/2019 01:26

I grieve for the parenting experience and the children we are told we will have.

Mine have SEN and one has a difficult mental condition caused by trauma she experienced; it's permanently changed her brain. Life is going to be hard on her.

I try and count my blessings every day. But many days, I feel awful for having brought them into this world, without all the abilities they should have.

I understand you. And what you've experienced and are experiencing is more than we have to go through at my house. It takes a strong person to look after someone like your son, and you've done it for 25 years now.

It's not wrong to wonder how life might have been. It's normal. What would be positive is writing down a bucket list of things you'd like to do or experience, no matter how big or small, and see how many you can tick off. You'll be surprised.

If it takes it, start a crowdfunder/ gofundme and go on an adventure, with or without your son.

You deserve some happiness.

Original poster
justhetwoofus · 15/06/2019 01:27

PUPLEBOY.....thanks for caring.....are you in a similar situation ?
Respite is tricky although available,not very nice and mostly aimed at older people....
Yes, he’s with me 24/7.

OP posts:
purpleboy · 15/06/2019 01:46

I'm not personally but my sister, niece and great niece have SEN, getting progressively worse as it going through the generations. I see how difficult it is for great niece she is 8 in nappies non verbal bar a few sounds, and it's incredibly tough for them all. I regularly go to great nieces SEN school and the parents there are so strong and caring and patient, more so that I've ever seen from parents with non SEN children. Their strength and courage resonates with me every time I interact with them. Truly they blow my mind. Your post struck a chord, and I think life is so cruel, especially with no support around you.
I have nothing to offer other than saying whilst I don't know you, I have no doubt your amazing in every way. I hope you feel you've had a happy life even though it's been so toughThanks

Original poster
justhetwoofus · 21/09/2019 00:00

Looking at holidays and seeing ‘celebs’ on the the beach in exotic places makes me think WTF..... am trying a new sleep regime with my 25 year old severely disababled son haven’t even got into bed yet and have already attended to him 10 or more times .......really don’t think I can do this for too much longer.
Haven’t had a holiday in 10 years and am so exhausted....only wish for sleep am I asking too fucking much..?

OP posts:
Rookie93 · 21/09/2019 00:08

No your not asking for too much and hope you can find some practical support. Wanted you to know people are thinking of you 💐

Original poster
justhetwoofus · 21/09/2019 00:20

Thanks Rookie93
Feeling very alone right now .

OP posts:
BringmeGin · 21/09/2019 00:44

Although tricky and probably not ideal, it sounds to me that the respite on offer is essential to YOUR wellbeing, and as your sons main Carer, in turn his. You can't pour from an empty cup, I hope you find a way to look after yourself too 💐💐💐

Original poster
justhetwoofus · 21/09/2019 00:54

I know the daily mail looks at this mumsnet site .... if they want me to test holidays with a disabled adult I would obviously be interested!

OP posts:
Original poster
justhetwoofus · 21/09/2019 01:00

Thank you Bringmegin that’s very true.
Are you in a similar situation..... ..?

OP posts:
Original poster
justhetwoofus · 21/09/2019 01:02

BringmeGin

OP posts:
Brownhairbrowneyes · 21/09/2019 01:06

I never comment on Mumsnet but your post moved me OP, just wanted to say, i truly think your incredible and I wish happiness for you and your darling boy x

Original poster
justhetwoofus · 21/09/2019 01:41

Thank you brown eyes x

OP posts:
Lofari · 21/09/2019 01:47

I think you are amazing OP.
My son is only 4, but has a life limiting disease. Some days I feel so very guilty for all the problems he will have in life. Its very hard.
Perfectly normal to love them and also wish things were different at the same time.

CharityConundrum · 21/09/2019 01:54

I don't know how to say how much I admire you.You're living a life that most of us fear and I am in awe of your strength that you ask so little when you deserve so much.

Original poster
justhetwoofus · 21/09/2019 02:07

In my hard times ,it’s uplifting posts that keep me going....and also the love I feel for my son.....frankly I could give up sometimes but never will......just hope my body can keep up with my spirit......
25 years down the line,I never imagined it would be like this.

OP posts:
notsodimwit · 21/09/2019 04:18

Bless you op 💐 it must be so hard for you xx

bbgxd · 21/09/2019 05:39

I'm sure you're an amazing parent and your son loves and appreciates you. You can't help it, but please try not to to dwell on things you can't change now and stay away from social media for the most part. There's a YouTube channel called SBSK for people with disabilities which I'd recommend.

Could you get respite care? I'm not sure if there's an age limit or your son needs specialist care.

BringmeGin · 21/09/2019 12:06

I'm sorry OP, I went to bed. I'm not in a similar situation but my sister kind of is and I am a parent. No Carer of any kind can pour from an empty cup but we always put others needs before our own and try! Just remember that your needs are just as important as your sons, and if you don't look after yourself you will break. Then he will suffer, so if it helps, tell your self you are doing it for him x book that respite and a spa day, or just a day in bed! When my kids go to their dads I often just sleep! You deserve it x

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