Bottom line is: I had a lovely Christmas because I was with my loved ones.
But our life with disabled DS has challenges which are hard for others to identify with so v challenging and often painfully isolating.
My DS is 17, has severe learning disabilities also physical disabilities & is wheelchair bound. On Xmas Eve he is so excited about Xmas he didn't sleep at all, so neither did we. He came downstairs in the middle of the night after DH had tried in vain to settle him; DH couldn't tolerate it any more so I took over.
DS can't be on his own safely so I had to come down with him & lie on the sofa…DS was all over the place. He had severe diarrhoea & as he is incontinent so I had to change him twice and rummage around for a spare set of pyjamas as he had soiled them. Didn't really sleep at all.
Next morning DS raring to go, his parents not so much. We were due to go over to my DM's for the day in the morning…this has become the family tradition over several years since before DS. All the rest of the family were already there (unlike us they had stayed over). DS had diarrhoea again and was literally covered in it, all down his legs and on the sofa (luckily a leather one). It took us ages and was a disgusting job to clean him & everything else up, bath him and then shower him down. I hate seeing him in that state too.
I called my Dfamily to explain why we would be late, they didn't say anything but I felt they were disappointed and put out…from their point of view, it may have seemed as if I was making excuses to spend as little time with them as possible.
I explained a bit of what we were dealing with but I didn't want to put a damper on Xmas or put them off their dinner, by describing the full horror of dealing with the diarrhoea of a near adult, I felt it would be in bad taste.
When we finally got there we had a really lovely time although we were all shattered & yawning.
I know that dfamily were disappointed that we didn't stay over as well, from Xmas eve until Boxing Day (so they are still all together now). But if we had had to deal with this situation in someone else's house I don't know how we would have coped; also nobody would have got any sleep.
So although I had a great time I do feel a bit isolated as I don't think anyone in our wider family realises what it is like to deal with. Although I love seeing my family I don't think they realise that just going to see them for the day is a big undertaking for us; it feels like everyone wants to do things the same way they have always done, whereas for me having DS has changed everything and I would really like everything to revolve around his needs, so that these are at the centre of family plans.
If people could just say 'we would love to spend time with you and DS: what can we do to support you & DS to enable that to happen?' rather than doing what they have planned & expect us to fall in.
AIBU to feel this way? Please tell me honestly if I am expecting too much.