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Today he watched TV for a full 20 minutes with the volume on normal(not turned down),he wrote two pages for a presentation he was to give at the day care,he searched his cd collection,he expressed the desire to go out,he did not slump with his head down..simple things for most, accomplishments for him,green markers in his progress diary.
I have never been the most scheduled person or giving to making lists and planning for the day..most of my life I have planned impromptue,done things that suited my mood,changed jobs and styles rapidly and now Iam perhaps the most scheduled person 8am wake up time..bath time..going out time..return..meal time,medicine time, sleep time and so on...
Soon after he leaves for the day care I spend time with myself ..relax,have coffee,complete my prayers.
Planning is intrinsic to his survival ..one day at a time.. any plans running further than sleep time vex him..any talk planning weeks or months ahead are met with complete disinterest ..the day is so full for him in his head that one day at a time is all that he can take.
Each chore,action that happens so unconsciously for us is a conscious effort a planned out move for him. Any disruption especially a negative ones throws him off balance.
Yesterday a friend asked how long more and I had no answer tentatively I said at least two symptom free years and then we shall see how much responsibility he can carry himself...perhaps it is life long for the family..I dont know... so it is one day at a time and I let God take a hand in my affairs for the tighter I seek to control the less space He has, to do anything.
Days when mission turns to drudgery,joy to resignation when all the highs are gone and you are left with a deadening recognition that you may actually be heading nowhere.
Days when the resposibility of not just yourself and your feelings and emotions and whole being but of another human being wears you down completely.
Days when you get that sickening feeling that perhaps you are doing it all wrong and then you want you start all over again not just from today or tommorrow but rewrite the whole past 20 years .
Days when you spend hours hopelessly staring at the wall wishing you could have prevented this that many years ago.
Days when you wonder what the next birthday would bring...new medicines,an ambiguous blood report....another addition/ deletion to the medicines,another diet program...a more interesting activity.. a relapse perhaps..another symptom...I wonder sometimes what it shall bring this year.
Once a week I go to the daycare centre and have chat with the counsellors there and together we work out the new goals to set for my son.
The earliest goal I set for myself,for him and got the counsellors to work on was to make him smile.
Two months later it started happening more there than at home but I caught glimpses of it and my heart was full of joy.
Today he is still symptomatic but relates to reality more avidly,makes interesting eye contact, colors drawings given to him with firm definite strokes,strikes off designated alphabets from a piece of writing as part of the concentration exercises and participates in group sharing of feelings.I brought back his work from the day care and see the rebirth of a child..unfolding softly before my eyes.
I have already been warned of what lies ahead, as reality creeps in so does the "shark" of depression.
I visualise it however as a dolphin bearing new life which carries him painlessly into his new life.
"This is mine and I seek a spiritual solution to this situation"Wayne W Dyer
And i do on a daily basis.
This is not a problem and i fulfill my destiny without guilt/anger or remorse.I was assigned this task in this body and whatever his condition is in this incarnation it is not him and iam not it.
A young child may be an ancient soul.Who is to know?
By teaching my son to adamantly refuse to think of himself as limited in anyway.
and to help him see that his spirit is perfect and always connected to God,regardless of his impairments is the way to implant a spiritual solution in the mind of any young person.
To make this happen i try each moment to keep my thoughts centered on what i want rather than on what i dont.And use my thoughts to keep the enegy on healing rather than the illness.
Slow down and take a deep breath...count eight in and count ten out...it is calming.I need to do this often for some days are invariably "frazzled" watching my son moving reslessly,pacing ,making quick circles... into one door out of another,it is is dizzying to an observer.
I understand it all yet need to slow down myself so I close my eyes and count my breath.Do not get entangled into his movements and thoughts just watch like a disinterested observer.
He is speaking more and I dont know what was better his quietness or his lucidity.The entire household is on red alert and some time is spent in explaining to the rest on how to deal with his demands.
1.Do not give choices ...he is ambivalent and it confuses him.
2.Once he asks for something, provided it is a reasonable request...do it even though he may call behind cancelling it.
3.Be clear and predicatable in your planning...unpredicability upsets him.
4.Do not shout or be loud.
5.Do not pose the dreaded Why? to any of his queries instead couch it in the gentler-- what makes you ...what is it about...etc etc.
6.Make all movements gentle and graceful.
7.Use silence when posed with impossible to answer questions.
8.Present reality but gently
9.Encourage comparisons especially when dealing with feelings.
10.Above all reiterate that you are there for him.
And do slow down and take a deep breath.
My daughter adds the following to love and hope..her additions are energy,enthusiasm,joy.
I slip in and out of each.It is difficult to maintain the momentum.Age I guess.
Sometimes I get resentful why must I have to see this alone.My exhusband is far away his interaction limited to a weekend once a month.
But then I check myself and going back to my design theory realise that this was the way it was meant to be.
This is my life,I must rearrange it the best I can,this is my karma I must deal with it the best I can,there are no accidents,mishaps in the universe only events I must do the best I can.
His voices are begining to fade after being his "companions" for over four months. They occupied his attention and time almost completely. Only in the last one month thanks to Clozapine that we were able to get some parts of his attention.
Now there are larger and larger spaces of his time available to us and to himself...and another battle begins his and ours.
What does he fill his mind with.
Old ways of being are unavailable to him and we must invent or reinvent, things,people, places that would be of interest to him otherwise the danger of slipping into depression are really great.
I have the answer to all my WHYS?
I have no answer to the Whys of my son.
Mom why am I different from others?
Why cant I be like the others?
Why me Mom Why ME?
I have no answers?
Saying its a twist of fate,it was ordained,it is an accident of Biology,it is like any other illness,it is because it is...
There are no answers.
All sound nothing short of cruel...all demand an acceptance which is almost impossible.For deep down in my heart I know it is an illness far far more debilitating than any other.
So Iam Silent most times when asked.
And pray that he finds the calm in the storm raging in his mind.
My dearest child I can give you only love and hope.