Wednesday, September 8, 2010

Big school

7:00 am The alarm chimes away upstairs to say its time to get the rest of the family up. Sleepy raises his arm and splats on top of the alarm to silence it. I know he will have opened one eye a tiny bit to check the camera monitor's in the bedroom next door. As he lies dozing I know he is listening to the breathing on the monitors to ensure all is well.
When I hear a few rustles in No 1 son's room, I leave the lunch preparations and go up stairs.
Before I go in to Jake. I stick my head into the twins room No's 2& 3. 'Ok, Zig and Zag up you get! Put on your tracksuits at the end of the bed'. They make inaudible noises and go further under the covers.
When I open the door I always smile when I see his eyes open,  alert, smiling. The fear of the morning when this won't happen still worries me or the way you feel the numerous times when you go in to him in the middle of a seizure. Then his eyes are open glazed, body rigid. Normally then he has lost control. This illness doesn't allow him any dignity.
He smiles up at me as I reach down to kiss him. Gurgles as he tries to say what I know is 'Love you'. This makes it all worth while. I say back ' I love you too sweetheart' as I start to use the baby wipes to clean his face.
Next I shout pleasantly at Sleepy to get up to look after Zig and Zag.
Pulling back the sheets I remove his bedclothes, change his nappy and wash him down. Thankfully, he had a bath last night and I don't have to lift him to much. Now that he is 13 he is getting so heavy. My sore back never seems to go these days. I push the button on the bed and the top part raises up so I am able to start to dress Jake. Taking off his pyjamas I wipe him down and try, as I do every time , not to look at his scars. Medical people are amazing. The body is even more amazing how it repairs it self after such invasive trauma never ceases to amaze me.
Next door the giggles come as I hear Sleepy tickling Zag as he dresses him. Luckily Zig is mobile and able to do all this himself . Two seven year old's are a handful. The motors whirr as I manoeuvre Jake's bed so that I am able to slide, push & lift him into his chair. He grins as he tries to help me to help him. God he tries so hard.
As we use the stair lift to get down stair's I can hear the radio being switched on in the kitchen and bowl's for cereal coming out . The twins are at the table and say their warm good morning's as they hug me in between little digs at each other. Sleepy give me a kiss and a cup of coffee. Mmmm coffee.... oh it was a nice kiss but the coffee, never mind..... finish making lunch's.
7:45 am   More news of another €26 billion into this bank. The government minster says 'we have to protect the depositors in the banks....' Time to start to hurry them up. 'Ok guys let's get moving'. 'Did you give them their med's? I know but I have to ask...'
As I wheel Jake to the van , Sleepy is fastening the seat belt's on Zig in the front seat. He is great with his brother's but he doesn't like sitting in the back with the 'chairs'. Fair enough. He is entitled to some quality of independence. God know's he may be all they have to fall back on when we go.
I click the two chair's into position, shut the doors and off we go.
8:25 am and we are at Zig and Zag's school. 'Hiya Mary' as Zag's SNA walks to the window. She beams in to Jake. ' How's my favourite little man?' Jake laughs as she starts to tell him how smart he looks and that all the girl's will be mad about him. Mary looked after Jake for two years and did so much beyond her remit. I personally credit her for his being able to have developed his use of the fantastic App on his iPhone. Now he can tell us all what he want's . For a non verbal child he can now communicate. So empowering.
I help Zig down from his perch as Mary wheels Zag out. 'See you later pet's have great day' Before I go I give Mary her week's supply of medication for Zag.
8.35 am and we are on our way again. It is only a twenty minute drive. We pull into the school and I can hear Jake muttering. I open the back to take him out and he is typing with his hand furiously on his iPhone. I lean over and see what he has said; 'worried' 'cry' 'home'. I choke back as I say ' No it will be fine pet. Don't worry. Yesterday, was just the first day in that school. It will be different now Daddy & I spoke to them about it.' 'Resources have been cut but we will be able to let him share some SNA hours to-day' they said.
His new principal comes to the door and smile's 'Hello Jack, how are you to-day?'
I just grit my teeth, ' Jake, my son's name is Jake'
9:00 am She apologises and as I drive down the road I cry, as I remember my son telling me on his iPhone that they had strapped him in a chair all day at his first day in big school.  I wonder then for his future. I wonder what else will be cutback on.

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