welcome papierplatz, and sorry for the loss of your twin. I didn't know DS had cp for the first 11 months as he got away without a bleed, so it was hard to come to terms with to start with and I think I was in denial for a few months while still telling everyone DS had CP. For me I decided it was easier to be upfront so I told anyone who would listen, including now a lot of my clients if they ask whether DS has any effects from having been prem. My sister was my other rock (well as well as Dh but long story there meant he was dealing with his mum who died shortly afterwards) My sister is a social worker who does fostering and adoption and she was much more aware of what a difference good care could make than I was. She also joined in my rants about the NHS which was cathartic. She was also the first person who said well CP is a spectrum, and as such you have to see what DS can do and not what he can't.
After that phase I went into full on find out more mode, and met a friend of a friend who has a little boy who is 4 ish who is hemiplegic. That gave me hope, while also fillign me with dread, as to my untrained eye I stuggled to notice how disabled he was, he seemed like a normalish 4 year old to me. So even though his mum told me what she and they had been through to get to where they were I started to see hope.
Now I take each day as it comes, hope for the best and prepare for the worst, and have good days and bad days (like yesterday) - Thanks sneezecake btw I feel more me today which is good. I try to avoid other children of the same age on bad days, but not so much on the good ones as children the same age spur DS on, if only with frustration.
I also try to see what I can do for DS, so NHS physio, and private physio. I applied for DLA because this board encouraged me to, and then put some fight into getting it at the right level.
And I try to take step and realise how far we have come, in my case in just less than a year. I thought my world had come to an end when DS was diagnosed (again, I thought it had eneded when he was in hospital too) but it really is OK. I don't know what OK means but it is fine. This time last year DS could barely sit, couldn't crawl, let alone stand or cruise or step. He slept a lot and didn't speak. He had also spent all winter with chest infections.
Now he can crawl normally, cruise confidently and bridge gaps, walk with walkers or holding on to hands, play games, speak a little (hiya, bye bye, more, again, cuddle, all gone, bear, chelle - his key worker, mummy, daddy, phone, milk) and most importantly he is clealry happy.
So now I have to work on me!