This is the first time I've felt brave enough to venture into the 'special needs' topic (am gradually emerging from denial) - so a hesitant 'hello' to you all.
I'd love to know about other people's experiences of 'developmental delays'. Briefly, my DD2 is nearly 15 months; she was born with a congenital heart defect that has recently been surgically repaired. She doesn't have any other diagnosis (other than reflux, which she has severely), but it's been apparent for some time that she's just not growing and developing as she 'should'. Her paediatrician thought she might have an underlying chromosomal abnormality (linking together the heart defect, feeding problems, lack of growth, lack of energy, poor motor skills, etc) - but various tests and a detailed examination by a geneticist seem to have ruled that out. (I say 'seem to', because the geneticist wants to look at DD2 again in a few months - but for now she sees no sign of any genetic condition.)
We saw the paediatrician again today, and she used the term 'developmental delay' for the first time (I think it 'officially' goes on DD's notes now, rather than just being something we speculate about). Her view is that DD may be slow to do certain things because of her heart condition (which affected her a great deal - she has been on medication for heart failure since she was 9 days old), but that we shouldn't assume that this is the case - ie it could be unrelated to her heart. I don't assume it, as I know other children with similar heart conditions who walk and talk etc. The paediatrician says that DD2 will 'probably' walk at some point, and she used the term 'special needs' for the first time. But she reckons the fact that DD doesn't even try to get herself from lying-to-sitting is quite a serious problem.
Life is a big struggle in a lot of ways right now. DD2 is very hard to feed, and she vomits a lot. She can't 'do' much (she sits if I sit her up, but doesn't get herself into a sitting position, let alone standing or crawling etc), so it's quite hard work to keep her amused. I have an older daughter (5), who is wonderful with DD2, but I constantly feel that I'm short-changing DD1 because DD2 is so high-maintenance. I can't stop worrying about what the future might hold for us all - perhaps that's the hardest bit, at least for now, not knowing what we're really dealing with. At least if we knew, we could adjust etc.
Does anyone have any thoughts or experiences to share? I feel deeply unequal to the task of being the sort of mother DD needs. I'm not patient enough, I get frustrated and upset, and there are times when I just ask myself why we disrupted our lives by having a second child. (DH and I were very unsure about whether to have another after DD1, and when things are tough - as they often are - I can't help revisiting all that, even though it's clearly all in the past.) I worry about whether DD2 has an OK life - she often seems to be miserable! And so am I - we've done a lot of crying in unison recently.
Sorry for the long whinge. I have to get over the self-pity and find a new way of being, for all our sakes. And I want to help DD achieve as much as she can, while accepting her the way she is. Any thoughts?