a time of calm…

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Personal Diary May 2013

God, what’s going on. How can I tell if you are testing me. Testing my son. Should I be scared? Should I be panicking, should I worry and stress every day while you watch me do this. So this a lesson I am mean to lean from? Spencey, everyday for 2 months as been sick… Some days he’s happy and carefree. We take that for granted, the next day his balance goes askew… One day I can hear you breathing through your nose, the next I can hear the crackle of your dry throat, from hours of sucking up the nights air, to get minimal oxygen anyway… So sleep deprived I don’t even care anymore. You don’t sleep when your child lays next to you gasping for air, the sound of his nose vibrating trying to encourage a little oxygen into his body… Your eyes remain closed because you know I am there… To save you. To be your soldier and body guard, night and day. But your little body shows the results of sleep apnea… Spencer s not eating very much at all. It’s so sad.. I close my eyes and just pray.

At last I have found 5 minutes to write yet another post. Obviously I passed gods test of strength. Still here today through brighter eyes and a calmness. It has been a blissful 6 months. The shunt obviously doing its deed and draining the fluid from his brain into the abdomen cavity.  Such a small simple device has generated a little personality of all sorts, but mostly the shunt has allowed our little boy to play and learn without pain and frustration but rather he is a cheeky and intelligent little bugger, who demands 24 hour love and security but praises us with his smile and happiness. The shunt, will stay for llife, within the first 3 months could block, it didn’t. But we still pray it doesn’t. We are always aware of any change in his behaviour to suspect a shunt blockage and the first 3 months we thought it was every day. Before xmas last year we decided to seek an MRI for Spencer to check the shunt and also the Chiari Malformation, which was of concern to his neuro surgeon, Dr Fowler. Spencers results thankfully concluded no problems with the shunt and his chiari malformation was of no real concern as yet. Id like to let you know how well behaved our boy was when he had to have the gas to fall asleep. I asked with sincerity could I hold him in the chair and hold the mask on him myself. I really knew he would not allow anyone else to hold him down. He perched up on my lap and breathed the sleeping gas in without struggles or tears. The horrible part of that’s process is the his lifeless body as I lay him on the bed. its not something you can explain.

I have begun small, easy sign language with Spencer. He recognises and uses at least 8 different signs, I don’t underestimate his need to learn because he does just that: learn, remember, recognise and communicate. He has begun to say a few words that become clearer the more he says them. The anatomy of his skull will prove difficult to pronounce words clearly but  I really believe his hearing has improved with the shunts ability to reduce the pressure in his little head. I hope for this, again he will let us know with time his full hearing capacity, til then I figure a little sign language couldn’t hurt.

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Since around September 2012 we have had a special intervention lady come to our home each week to help with Spencers development and learning requirements. Marcia I believe has been a big part in Spencers progress. She continually notes how well he is doing and is, like us, surprised by his love to learn. I am also grateful for her care, concern an genuine love for Spencer. We believed at one stage he could be at least 6 months delayed. It seems however he has raced that expectation and is now at a more level expectation for his age. The word expection bugs me. I was told Spencer may not walk, talk, communicate. I was told he would have little devices to help his fingers pick up food, or aid him to use his hands. The problems he would have neurologically could be endless. I prove them wrong. Spencer proves them wrong.

I have never presumed anyone to understand the depth of feelings that have been through me like poison. been and gone for now. For now its all ok… For now we focus on each day. Keeping his eyes clean and healthy has been a challenge, sometimes failing. Sleep apnoea wrestles him in his sleep but with age he has learned to control his breathing and sometimes its a little un nerving when he doesn’t snore, it was my assurance of breath. But he lays in peace and sleeps finally. So do I.

I am beyond grateful and a little overwhelmed at the enormous support from my community, friends and of course family. Fundraisers have allowed us numerous trips to Sydney without financial stress. It has also just made me a little relieved people could meet and learn about Spencer.  Thankyou.

Spencer continues to teach us also. Of fate and will, acceptance and belief, hope and positivity.

I still curse and ask everyday why this has happened. But I also just smile at how far he has come.

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