19th November 2010
I decide to go away for the weekend with two of my sisters and my brother in laws. I need space, I need quiet, I need sleep. It is a 4 hour drive to where we are going and I can't talk about it I know that they want to know but I can't talk. I send a message app. done not ready to talk ring dad. I am numb, I am lost, I don't know what to feel or do. I am glad to be away from deni as if I looked at him it would all be too much. Glad to be away from my husband who doesn't like to talk about it, I am happy to have my own head space. I sleep so well I found that really strange why would i finally sleep well. The next day I still feel so exhausted my eyes feel swollen, my head huge. I just potter around. I tell my two sisters over morning tea I have some how managed to talk about it without emotion and sound quite disconnected and cold. I can't tell them every thing that was said. I am happy to have it out, but don't really feel any better. I keep having visions of his head without the skull his brain exposed lying on the table. I am afarid. What if he dies? What if he is damaged? What if we don't get our deni back? I want to be on a desserted island away from the medical world that is over taking our lives. I what will we do? Will we survive this? Where will I find the strength to get myself, Denver and everyone through this? What if I can't do it?
I spend alot of time just walking up and down the beach looking at the sea and the sand. Looking for answers. They don't come. I don't know what to do. How do you explain what you don't understand to any one else let alone a four year old.
I have to go home I have no choice. How will I face denver? What is I fall apart? What if I can't do it?
I have so many dark moments. The thoughts of the surgery are taking over my brain. The house is falling apart around me, the other kids are getting neglected. I can't function. I can't sleep. I keep having visions of denvers head cut open with his brain exposed on the operating table. What if he doesn't make it? What if he is damaged? What if he is different to the denver we know and love?
I find it hard to be with people, I can't handle their whinging about how bad their lives are, I want to shout at them they are going to cut my sons head open now thats some thing to whinge about, but I don't I can't. I can't sleep.
Denver's behaviour is getting worse but what do we do, it's not his fault but he can't get away with murder either.
We get letter after letter for app. with different dr's. They are not till feb, but they wanted them all done by feb. I am losing track.
We talk to the other kids. We explain as best we can what is happening. The older get how serious this is and the concern shows on their faces. We are positive and keep it simple. I explain to deni about his head and that the bones in his head have grown a little funny and thats why he keeps getting headaches and why we keep visiting his hospital. He takes it in gives me a kiss and off he goes. I hear him a couple of days later explaining it to his grandma that his head is a bit wobbly and the bones are a bit funny so thats why he goes to the dr's. I love kids how they interpert things and understand it and explain it to others. He is having more and more headaches, he blinks his eyes excessively when his head is annoying him and thats how we know he isn't feeling quite right. We now carry medication because of the headaches and have so much more down time. He is so cuddly. I know he feels what is going on with me.
8th December 2010
Deni is talking to me in the shower and he can't remember a word. It is one of the first words he learnt. He can't remember what to call it. I have to tell him and my heart breaks. It's a ute denver a ute.
17th December 2010
I spend half the day on the phone talking to Deni's dr's, I need his app. to be earlier his headaches are so frequent and he is losing words every day. Today he couldn't remember the colours. He is slowly dissappearing. I explain myself over and over again to the dr's, He needs earlier app. They aggree and will organise them. I am relieved. Thank goddness.
20th December 2010
Denver's neurophycologist rings she is lovely. She chats with me for about half an hour and we go over what is happening with denver. She lets me know that the head aches, the blinking the behaviour and the non stop energy is all normal for cranio kids that have pressure in their brains. She explains that their brain is like a little motor and because of the pressure on it it can't stop running and thats why he can't sit still. And because the motor never stops it gets sore and tired easily. The pressure on the brain is causing him to forget words and affect his speech. It is completly normal for cranio kids. It normally comed better after the op. She arranges all his app. for Jan. A whole day on Jan 10th and more on the 20th. I feel listened to and like there is someone on my side.
22nd December 2010
It's been a terrible week Denver and I are exhausted, head aches all the time and he can't sit still. This is not denver. I am struggling, but where do I go for help. I don't want to be told don't worry it will all be fine, thats not true we don't know that. I don't want my feeling pushed aside and made to feel as though I should be strong and positive. I am on the outside but inside it is dark. Denver is losing words every day and his speech is starting to get hard to understand he is slurring alot of his words and he is having trouble finding the right word he knows he knows it but can't spit it out.
I am meant to be goineg to a family dinner tonight but I can't, I can't be with people. I can't pretend I am ok. I can't sit there and be ok. I need to be with my family, I need to be home, I need quiet time with them. I need to feel safe and secure. No questions. No answers.
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