09/03/11 Facing facts
So things have been busy since we escaped from hospital.
Appointments galore, you get the picture. Couple of positives....
I got my White line outside the house! Hopefully people won't park on it, it should make things easier.
Weve been appointed health care assistants to look after Nate 6 hrs a week and let me have time with thea , and by myself! Whoop whoop.
But I think on Monday I came to terms with the fact that yes my baby is truly disabled.
We got...... A chair for him. It's a sunbeam chair and it's mahooosive!! It does lots of fancy things and has a tray and lots of bits fasten to keep him secure. It's not ideal as is shoulders are flopping forwards so he needs something additional to support him. The new physio is on the case. Shes very efficient.
Anyway its the first proper special needs equipment we've got. And obviously it won't be the last. So it all kind of hit me. The implications I mean. That my child is different and requires specialist equipment. wouldn't you have thought that the oxygen and ventilator would have already made this hit home? So I feel a bit weird about everything. Part sad, part coming to terms with things. I'm thinking long term needs and things like that. Which I'm scared to do as I feel the geneticist will lob another ridiculously rare and fatal genetic disease at us. I imagined his 1st birthday the other day. Something I'm terrified to do as at times it seemed he wouldn't make it that far. I think it should be a major
affair, a true celebration. But I have a sneaky feeling I'm going to completely fall apart on the 26th June
Appointments galore, you get the picture. Couple of positives....
I got my White line outside the house! Hopefully people won't park on it, it should make things easier.
Weve been appointed health care assistants to look after Nate 6 hrs a week and let me have time with thea , and by myself! Whoop whoop.
But I think on Monday I came to terms with the fact that yes my baby is truly disabled.
We got...... A chair for him. It's a sunbeam chair and it's mahooosive!! It does lots of fancy things and has a tray and lots of bits fasten to keep him secure. It's not ideal as is shoulders are flopping forwards so he needs something additional to support him. The new physio is on the case. Shes very efficient.
Anyway its the first proper special needs equipment we've got. And obviously it won't be the last. So it all kind of hit me. The implications I mean. That my child is different and requires specialist equipment. wouldn't you have thought that the oxygen and ventilator would have already made this hit home? So I feel a bit weird about everything. Part sad, part coming to terms with things. I'm thinking long term needs and things like that. Which I'm scared to do as I feel the geneticist will lob another ridiculously rare and fatal genetic disease at us. I imagined his 1st birthday the other day. Something I'm terrified to do as at times it seemed he wouldn't make it that far. I think it should be a major
affair, a true celebration. But I have a sneaky feeling I'm going to completely fall apart on the 26th June
No comments:
Post a Comment