Will I ever get over the fact my son is disabled?

[Richard1974]

Hi,

My son is 6 months old and basically spends 99% of the time asleep and is fed through a tube. We haven't had a diagnosis yet, but it is obviously something serious.

As parents we discussed the issue of if the baby had a disablilty during pregnancy will would abort it due to us having 2 children already and the time taken away from them if all our attention was focused on the disabled child.

But now we are here in that situation, and I feel my life is over.
The children do have limited time with us now because of this.
It's been a nightmare already and I'm dreading the coming years as he gets older.
But also I go through periods where I don't want to be seen with him, and resent him. What sort of dad does that make me.

My mood has changed and I'm just feel the life we had will never be as happy as it once was.

Supposed to be going on holiday to Florida next year, and normally would be very excited about it, but I'm actually not looking forward to that either.

Rich.

Did you get to Florida? Are there any small moments of joy? My DD is not at all what I though she would be. She has so many issues with writing, learning and so on that are just the opposite of me. I feel I have not always been sympathetic, but I have tried to fight her corner when I can. That's life. Hard sometimes.

It's desperately sad time and we all have been there. The sting of seeing able bodied children running and laughing with their siblings can still feel like a punch in the guts and it's a genuine real ache. I grieved for a long time for what we should have had. We found out about the extent of DDs disability when she was 6 weeks old but it didn't hit me until she was about a year old. I did have a bit of counselling to get me through the hardest part which did help.
My DD is now 11 and is completely reliant on me. She has cerebral palsy, cannot sit, stand or walk, is non verbal and still eats puréed food (she was tube fed as a baby).
That's the negative stuff though.
She is also funny, clever, sarky and a moody hormonal mare. She uses a communication device and laughs like a drain.
I have met some amazing people because of her. I am now fully immersed in the special needs world, I'm a director at her school where parents are all in the same boat and we are all there to support each other if we need it. It took me a long time to embrace special needs but once you are ready there is much joy to be had. It's ok to feel sad, angry and to cry should you need to. It's just not fair

Hugs x

StillMedusa, what a beautiful post.