I wish I could be more positive today, but I can't. I have been going to write about our last appointment for a couple of days but waiting to get more positive about it but it hasn't happened yet. Don't get me wrong the appointment was not dome and gloom not even close, but I am struggling with it. We went to Denver's neurosurgeon on Thursday. I haven't told many people about the appointment or have just said it went fine when asked as I have already been told don't worry about it, it's fine, forget about it. So been keeping to myself on this one.
I really like his neurosurgeon so that's a good start. She was amazed at how well he looks and how he appears to be going. She said that his brain was very very tight when they took the skull off and that it had no room left so it was lucky it was done then as his brain really had no time to spare. She said that she expected that his brain would have expanded nicely into the new shape by now. She is confident that his brain pressure has gone down as he doesn't have nearly as many headaches and his memory and speech have improved. So that all sounds rosy. I then ask what about the future, will the coopering at the back of his brain improve or disappear, will his brain by OK from all of this, will he have 'normal' brain function, will he be OK. She replies we don't know. We know that his brain was suffering but we don't know if his brain will mend itself or if it will do OK. We hope that it does but we just have to wait and see. So I say wait and see for what? We have to wait and see if he reaches his milestones, if his brain continues to develop correctly, if he learns and remembers things as he gets older, we have to wait and see if the brain will heal itself or not. We just don't know what will happen we just have to wait and see.
I hate the words wait and see, they don't tell you anything. I have decided I am not a patient person when it comes to the medical side of things I want answers and I want them now. I HATE wait and see. I left feeling like I can never relax, I have to keep watching so closely, never drop my guard always be on the look out. I said to my hubby I feel like nothing will ever just be normal, when he brings his school report home I will be scanning it to see if he is keeping up, if he is improving, is he 'normal'. I read my other kids school reports and just want to know that they are learning and happy, I am not bothered about if they are doing every thing at the right time and level, I just want them to enjoy learning and be happy. I nearly feel that that has been stolen from me with Denver because we will always be waiting and seeing. I think I am really feeling this one because the last one made me feel so positive. It is also because I have lost one of my support groups which was my class every Friday with my doula women, losing a place where you can be free to feel any thing and be comforted by others, with no judgement and no questions and no you should be over it by now statements has left me longing for that safety. It's also school holidays so I have been out of routine and missing my coffee friends who always make me laugh and forget about the world.  It would be better if I thought that this would ever end, knowing that it won't is exhausting. having people say " I bet your glad that that's over" is hard to take politely, that operation is over, but the trauma is still here. Denver has become extra clingy since that appointment, Tells me don't ever leave me mummy, your my mummy or I am never gonna leave you mummy cause your my mummy. he is stuck to me like glue and I am finding him in our bed once more at night. So no I don't think it is over, but we will just have to wait and see.

Quote of the week from Denver.
"Mummy I think I've lost you know that thingy in my brain that remembers things, I think it has moved somewhere else in my head."
If only he knew how true that was.