Just wanted to say i loved your therapy writing, but i didn't want to ruin it by writing a reply on the page. i hope it does help you sort things out. Since we started TTC for this bub i've been writing a kind of diary (should up date it more often but not a lot happens) so i can see the difference between Saul and a 'typical' child. Not having any other kids or knowing many babies it is very hard to see any difference which in someways makes things harder. But with out the DS i think both me and Saul would have been very lonely as i didn't know any other preg ladies and this started us in baby physio groups, and allowed us to meet other parents and kids. I always dreaded the thought of having a disabled child and if i'd known before birth prob would have aborted especially as so many peeps have told me you mainly get an abortion thrown in your face and very little info. But now i'm very grateful for Saul and everything i've learnt through having him.
good luck with your writing i look forward to reading it.
Thanks Danni for moving it over to its own special little place. I hope it helps someone somewhere. Even if it is just to make them feel that they are not alone in this world, and to show that its OK to feel why me and OMG this is hard.
We are all going through things everyday, somethings you can relate to, hopefully there are some things I hope no one ever has to relate too.
Not only is it therapy for me, but its therapy to all of those that read it
I have just read your therapy page for about the third time, I use it to try to prepare myself for what is in front for us and Grace. I just wanted to say that you are a pillar of strength and you and your family and of course little Holly have come through so much but have come through the other end, What you have done here is a great help for me and im sure for others like us who have surgery pending for their lo. Im sure i will read this again many times beofre graces surgery arrives.
Can I also ask, is it common for them to leave the chest open after surgery, I noticed in your pics and in little thomases and we have also had a dvd from the hospital where Grace is having her op and they show a little baby with the chest open sign on after surgery. I thought at first that it was because little Holly had to have heart massage but then after seeing the other babies it looks like the norm. If so why do they do this?
Glad you have found it a help to you. Keep telling yourself though Holly's surgery was worst case senario and most surgeries go without a hitch. We were just the unlucky statistic that time.
They do it because after working on the heart during surgery it gets all bruised and swells. If they closed the chest up straight away it would put too much strain on their hearts. They had tried to do it to early on Holly and thats why she ending up going into arrest again later that night. Once they re opened the chest and left it, the swelling was able to go down better.
It all depends on the surgery too. Some cope well with it closed and come don't.
Hi Rillith, I have just read your therapy pages for the 1st time since joining the site, don't know why...
I wanted to write something, but I don't have the right words.... I cried and then I cried some more, thankyou so much for sharing such a personal time with all of us, you make me feel so lucky that Leo is healthy, and you are so special, all of you, Holly was obviously given to you and so you must be very very speacial parents....