Today I re-read 'Welcome to Holland', a brilliant poem by Emily Perl Kingsley that explains perfectly how it feels to raise a child with a disability. If you're not familiar with it you can read it here
I haven't read it for about a year and it made me quite emotional again. I think the part that gets me most, is that it's ok to say "This wasn't what I wanted".
I'm always quite surprised by the amount of people who have said to me over the past year "I don't know how you do it". As if it's a choice? I usually just smile politely but part of me is tempted to explain that when the diagnosis letter arrived, it didn't come with a tear-off slip giving me options of choosing between just getting on with it, or asking for a refund, or an option of swapping my child for a neuro typical one. You do it because you have to. You're a parent and that's your job.
It's like if your child catches chickenpox - you don't say "Well I'm sorry, I can't cope with this" and hand them over to someone else to look after until the spots have gone away. You stock up on piriton and camomile lotion, and brace yourself for even less sleep than normal. Life deals us a hand of shit from time to time but you have to suck it up and get on with it. If for no other reason than no one else is going to do it.
But this poem makes me feel that it's ok to not always be happy about it, it's ok to be a bit jealous of the people who always get to take their holidays in Italy, and it's ok to sometimes wonder what life would have been like if you had got to go Italy. That you don't have to justify feeling a bit sad that you'll never get to go there after all.