Sunday, 29 September 2013

Dear Alex, Inching forward...

Dear Alex,


Skies broad, everywhere I look, out of each window, door of the house. I step out onto the front ramp each morning, as they get cooler, and breath starts to mist before your gaze, and glance over to my right, I see the bay and the sea and the hills and the beauty of God's creation, and I breathe in peace, gratitude and I repeat 'it is early days, we were brought here for a reason' And I feel the healing, fresh salty air.

I am beginning to recognise your patterns, there seems these days to be rhyme and reason (some of the time) to your behaviour, there seem to be triggers. The mornings are hard, you cry and sometimes I can console you, sometimes I cannot, so I have to busy myself with the kids (which on a mad school run, is never hard to achieve!) And tell myself there is nothing I can do, you are warm, safe, in your own home and I will be back with no kids later to be with you and more attentive.

When you are tired, you become unable to switch off, and this feeds into your behaviour which becomes more agitated, confused, demanding, and angry. You absolutely need your sleep. If you do not sleep in the day, then you are unable to switch off at might, and can cry and shout till midnight. Then you wake early, 4am, and cannot get yourself back off to sleep.

I begin to recognise these triggers, begin to see a pattern. I am beginning, also, to know I must 'switch myself off', in those times I know I can do nothing, and those kids need me. You are at home, I do not need to have the heavy shackle of guilt around me at leaving you in a Care Home. You are where you belong, and I see small, tiny pieces of progress which I know will keep on unblocking the neural pathways, they will find new ways of connecting and with time, a great deal of it, I know you will achieve such a great deal more.

Now, I feel, we are at the beginning. I understand more my capacities, my weaknesses, how important sleep is to all concerned! I have to rota in a dog walk, however short, and I have to make it a thought free time. Just me and our dog, and pacing one foot infront of the other and drinking in the scenery, the smells, the glory of this beautiful place, so wide and open and free, for miles I can see and I no longer have the feelings of claustrophobia which I carried for so long.

Are we 'getting there'? Yes, I think we are.

Is it painfully slow? YES! My goodness, yes. We inch along, so slowly it is almost impossible to see the progress, to hold hope and patience...But I have done it for two years now, so I know I just have to keep on doing the same.

Your left arm is far less taught, it hangs down, not contracted up towards your chin. Your right arm moves sometimes slowly and controlled, when supported in the right way, whilst you eat. Your speech, when you are not tired, is better, more clear, and your awareness have never been this sharp. The left leg is slightly more able, and your foot, where it stretched down (the muscles in the shin are weaker than the calf muscles, so this happens when they are not working and the leg is not using the muscles if it is not used enough) if I make you visualise pressing your heel down into sand, you can do it! Which is amazing, a week ago, I had to force it and manipulate it into the splint...

So you see, there is progress, I will keep writing it down, telling you how well you are doing, loving you and making you safe and loved and know that I am here every step...forever.



me xxxxxxxxxxxxxxxxxxxxxx


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