For some why's there are no answers..........

Ronnie.

My best friend and older brother until he died not long

before turning 15.

As a 12 year old I had no understanding of how to deal

with the very complex and sorrowful emotions that

comes with losing someone you love.

I had no words. I didn't know any words. 

Sad? not deep enough. Unhappy? too light. Upset? 

Hurt? Angry? Heartbroken? I kept trying different words

but none of them seemed adequate. There was one word

however which kept hounding me day and night: WHY???

My brother was the kindest, loveliest, person I knew, so why

did he die?

Unable to verbalize my internal turmoil I sought consolation

in music. I pounded the keys on the piano, I blew the trumpet,

strummed the guitar, listened to whatever sad classical music

I could lay my hands on. I spent hours wailing along with

sorrowful blues and jazz singers and started to compose my

own pieces of music on the piano. 

Music, I discovered, is a language that says everything without

the need of a single word.

Music has helped me work my way through the loss of

my father and many, many, many friends.

However, though I have experienced a lot of heartache and

a plethora of difficult experiences, nothing so far compares

to what my son and I are going through right now.

My son is suffering with an incurable disease called

 Schwannamotosis, plus bi-polar disorder, plus asthma and TMJ.

None of these ailments are curable, only manageable.

Schwannamotosis: a nasty genetically driven illness causing tumors

(mostly benign) to grow on nerve endings anywhere it chooses to.

In my son's case, most of his tumors are situated in the worst possible

place: the brain and the brainstem.

Long story short: after having being pushed about by doctors,

hospitals, etc. etc. ala ''pass the parcel'' for almost 10 years, 

the tumors have now reached critical mass and my son's life 

is hanging in the balance. 

(Watching my mother go through losing her son I concluded

that losing a child is probably the very most painful

experience a human being may have to endure.)

Due to procrastination and unwillingness by the health system

to actually deal with my son's situation, my son is now

suffering with so much pain that he can hardly walk, one

of the tumors is pushing out his left eyeball, his hearing

is worsening, he can't see properly, etc. etc. etc.

and so sub sequentially, he is super depressed.

As to not bore you with too many details describing the hell we

 are going through right now, let me just say that

 we are running short on hope and the old ''WHY!@#%$!??''

 that bothered me so much as a twelve year old.....

is back.

Once again I am searching for words. 

Words that do not seem patronizing or glib, words that

may strengthen, encourage, and comfort my child as he deals

with a disease that is truly terrifying.

Though I don't know what to say to my son, I do know

what NOT to say:

Anything the trivializes, simplifies, minimizes or underestimates

what he is feeling going through this very difficult experience.

When someone is hurting,

sometimes...

 the most helpful thing

to do...

 may be.....

to pretend to be a dog.

Just being there,

just not saying anything.

about the image: the only photo I have of my brother

edited in photoshop.

There's no such thing as tough love...only Unbreakable Love

 -Mum?

-Yes?

-You've got to come and pick me up. Emma's ex is threatening

to come and beat me up. Please hurry!

I look at the clock. 3:47 am.

My heart is almost beating its way out of my chest.

The head is spinning, my knees buckling, and I feel as if

I'm going to pass out.

I run to the toilet and throw up.

I gotta go, I gotta go, I gotto save my son, I tell myself

as I fumble about trying to find some clothes to put on.

My legs are so weak I can barely manage to get my jeans on.

I throw on a hoodie, some shoes and head downstairs.

I feel sick again but I tell myself to get a grip.  I gulp

a glass of water, grab the car keys and hop in my car.

Phew!! It starts. The townhouse complex is silent and dark

as I pass through the front gate and head for the motorway.

I'm speeding but the drive to my son's place is over an hour

away and I am fearing for my boy's life.

I'll risk a ticket.

The motorway is virtually empty except for the odd truck

here and there. I feel like I am sitting in a space capsule

hurtling through the dark on a fearful and dangerous

rescue mission.

Please let me get there in time, I keep repeating to myself

over and over as kilometer after kilometer fly by.

I am still hyperventilating, my heart is still racing,

but as I am getting closer and closer I can feel my

mind starting to organize itself into combat mode.

You can do this, whatever it is, you can do this,

it tells me.

Finally, I see the city lights. 

My breathing has slowed down, my heart rate has

almost normalized and I feel ready for battle.

I pull up in front of my son's place and run up the stairs.

The front door is open. I walk in.

Son, I'm here, let's go, I call out.

My son emerges from the back of the house looking

disheveled, upset and reeking of booze.

He hands me some bags, a pillow, and tells me to

put them in the car. 

I throw the stuff in the back of the car and wait for

him to join me.

What seems like an eternity pass before he finally joins

me and we can head off.

Neither one of us says a word.

My mind is full of questions but I say nothing. I just

concentrate on driving. When we hit the motorway

ten minutes later I steal a glimpse of my son

and I realize that he has fallen asleep.

I let out a heavy sigh.

Safe. He is safe. He is with me.

Whatever happened can be dealt with tomorrow.

With my precious, precious, cargo now on board,

I focus all my attention on driving and calming my mind. 

*

*

The first time I had to do an emergency dash was when

my son had his first severe asthma attack at barely one year

old.

Since then I have done many, many, many......more.

And for many different reasons.

I count myself fortunate that we have this close emotional bond/

relationship my son and I. Knowing that he feels that I always have

his back no matter what is nice, but it can be a very steep and at

times quite heavy ''path'' to walk.

Some years ago somebody came up with the term

''Tough Love''. Many parents with ''difficult children''

were encouraged to practice it. (Me included)

 Considering it, I decided to do some

 research into what tough love meant.

''Tough love is the act of treating someone harshly/sternly

with the intent to help him/her in the long run.''

Hmm......harshly as in? Sternly as in...? Intent as in....according

to whom? Help as in...according to what definition thereof?

My conclusion on tough love is that ''tough'' boundaries,

as in having firm and fair boundaries can often be helpful

for good/healthy relationships.

''Difficult'' children or adults, are difficult for a reason.

Focusing on the reason behind a difficult behaviour

 rather than the behaviour itself I have found to prove to be

most helpful in the long run.

It can be easy to assume that some boundaries are obvious,

self-evident even, but in my experience they seldom are.

Boundaries need to be communicated clearly and precisely,

without blame or inferences.

Showing respect and consideration for different opinions,

perspectives and emotions.

(As years have gone by I have realized that I have not always

been clear with my son about some of my boundaries.

However, rectifying and clarifying them as they pop up is proving

to be very helpful.)

Tough love?

Why not? if with ''tough'' we mean unbreakable,

resilient, and indestructible.

My son

Since the birth of my son

there has not been one moment

when I have not been

conscious of him.

Not one moment when I have

not loved him.

Not one moment when I have

not been willing to slay villains

real or imaginary.

Not one moment when I have

not been ready to lift him up

when he's been down.

Not one moment when I have

not fought beside him,

with him or for him.

(Citizen Z)

about the image: graphite on cardboard

my son at 17 years old.