Friday, December 4, 2015

It's been a while.

It most definitely has been a while. But as usual I am being slowly and gently guided into writing again. I will most likely not publish or open the blog just yet. In fact. I will probably not even continue here. I have started a new blog elsewhere. But I am not even sure if that is for me.
All I can hope is that the gentle guidance grows stronger. Because I miss writing. I miss expressing myself creatively in that form. I don't care who reads it. But I do feel as though there is space for my voice to be heard again.
And so.
It shall be.

Friday, March 27, 2015

On the hard days, I wake at 5am. For a few moments, or, what feels like hours, there is a rush of anxious adrenalin racing through my body. It's as though I am running a marathon. I don't fight it. I lay there, allowing it to make its way through my body then find its way out again.
It is a tiring way to start the day.
Thankfully, these days happen infrequently and I can easily identify that I am stressed and that I need to take a break and clear my mind.
Usually, I just remind myself not to catastrophize anything and get on with it.
But ugh. It can be so annoying.

Lately, I have been getting these flashes of inspiration in my mind. Almost like a gentle whisper in my ear. Encouraging me to write. Write a book. Go on. You can do it.
So as a way to start, I am writing in my long forgotten and (currently) unpublished blog.
There is an awful lot I need to write about. This journey of mine hasn't finished yet.

I have been terribly emotionaly lately. Small things have hurt my heart, yet for once, I seem to have a clarity I have never had before. It is all part of the journey. It is all part of the path I am on.

So where do I start? No idea. Somewhere. I should start somewhere.
I guess.

Sunday, January 4, 2015


Where is the handbook that discusses how to help your nearly teenage son deal with his changing body?
Yeah Yeah.
I can hear people yelling out the names of them to me.
Well, thanks, they will be useful in another 4 or so years when my typically developing child is going through puberty.
Right now though, I am faced with kind of a big challenge.
You see, my son is nearly 13 and starting to change.
Probably a little bit later than what the typical kids do these days. But still within the 'normal' range.
I have noticed physical changes (bit confronting the first few times), but I have also noticed the HUGE changes in his emotions.
Gone is my gentle, sweet charming little boy.
Replacing him is a young man who is confused, angry and sad.

I guess seeing as you are reading this blog, you probably realise that the son I am talking about is my one who has a disability.
If you are new here, he has Wolf-Hirschhorn Syndrome, or as it is sometimes known, 4p- Syndrome.
This means he has all sorts of other challenges, and so do we.

Where are those damn handbooks that tell you what to expect, and more importantly, how to help your child with a disability through puberty? This is new territory for me, and I am already pretty much exhausted.

My son switches between hating me with a passion and fury I have never seen and needing me while he sobs uncontrollably over what seems like nothing. More times than not, he physically tries to hurt me.
I feel like my heart is breaking all over again.

All I can do is try to be patient, set firm boundaries and be there for him. He can't yell at me, so I guess he uses his body to try and hurt me. I often see in his eyes, the pleading. He wants me to help him understand why he feels the way he does, yet I cannot.

So, I have decided to write again. I can't promise I will be writing in here frequently. But I feel like it is important to record this year somehow. Like maybe it will help someone else sometime. Or maybe, it will just be therapeautic for me. I constantly feel the need to write and often compose blog posts in my head, yet when it comes to sitting down and writing, my page stays blank.

Let's see how I go. Welcome to 2015.

Sunday, February 9, 2014

The spammers are back

Don't you just love it when you get an email telling you that 'anonymous' has made a comment on your blog?
Welcome back.

I guess it has prompted me to actually visit here and write something.
I am still deciding where this blog is going.
My vision for it changed dramatically when my brother passed away.
Without him encouraging me to keep going, it all started to seem pointless.

I now also work in a job that requires me to be more private. I need to protect my little family from the public eye a little.
So, the inner debate continues.
I continue to be here, without really being here.

Aside from all of that, I now have two boys aged 12 and 6. The older one is mostly a ball of anger and frustration and finally, other people are starting to witness the challenges we are currently facing. Life is not easy right now. But I personally believe that with every challenge comes opportunity, so I guess we are staring something in the eyes. Just not sure what.

I am training for a half-marathon. And I will tell you why running is so important to me.

I run.
I run for Ryley. Because he can't (and his laughter as I run next to his bike trailer gives me the energy I need to keep going).
I run for Braeden. To show him that anything is possible. Being fit and healthy is good for the body and mind, but mostly helps nourish your soul.
I run for David. Because he believes in me unconditionally and he has faith that I can do it.
I run for Jacob. Because he never stopped encouraging me and he now runs alongside me.
But mostly I run for Me. To remind myself that I am strong and can do anything I put my mind to.

Our farm plans are starting to take shape as we keep our dream alive.

Be back soon!

Thursday, December 26, 2013

Here or not?

Somehow, somewhere, I am being guided to start writing again.
Think I may, think I might (have this wish I wish tonight).

I do miss writing.
Our lives have changed so much since I stopped writing in here.

We are the same.
Yet so different.

2014 is nearly here.
I already know some of the things that will be happening next year.
Just like I knew 2013 would change my life forever.

I guess I am a way...

Sunday, August 18, 2013

An unwelcome reminder

Tears fall from my face often these days.
Out of the blue they appear, drifting slowly down my face.
Most times I let them fall.
Sometimes, I blink quickly to force them away.

I am still here, writing, praying, coping-barely.
Ryley has been sick this week and it has rocked me to the core.
I didn't expect such a strong reaction, especially as this is something we have faced many times in the past 12 years.
It was the words "I have checked for internal bleeding and I can't seem to find any, that doesn't mean there isn't any, just that I can't see it. If he keeps coughing up blood, present at the emergency department and ask them to page me" that instantly made me want to throw up.
My brother bled internally in the final days of his time on earth.
In that moment when I heard those words from Ryley's paediatrician, a shiver went down my spine. I hardly heard the words the doctor spoke after that. It was like I was frozen in time.

It is only fear. I tell myself.
I know that Ryley will get better, he is ok.
This is nothing but an unwelcome reminder that this is our life, caring for Ryley is part of who I am.

I sobbed that night, praying silently for Ryley to get better, begging, again, in a familiar scene from before.
There was a reassuring voice in amongst my tears, though I refused to listen.

So here we are, today, 7 days into Ryley being sick.
We have avoided hospital only because our wonderful paed knows that Ryley will recover better at home.

In some ways, Ryley being sick has forced me to start feeling my grief. I have ignored it for 3 months now, pretending that I am fine, standing tall as the designated pillar of strength.
I am strong, yes that is true, but even strong people need someone to walk alongside them at times.

The thing is though, Grief has been my friend for many many years. It is familiar. In nearly 12 years, it has walked beside me, rearing it's head time and time again. This time, Grief is a bit different, yet eerily the same. When my brother passed away I almost welcomed my old friend Grief. I told myself I knew how to handle this. Grief would walk with me a while, then disappear again for a bit.
Wrong answer.

I forgot that Grief comes back, and waits to be made welcome (what you resist, persists). The time that Grief comes back is unpredictable, it shows up at seemingly random times.
Every time I think of my brother I feel this tightness in my body, this deep deep sadness and I can barely breathe. So I move the thoughts away.
It is time though.
Time to let Grief stay for a while.
No matter how difficult it may be, I need to embrace where I am being lead.

Friday, June 21, 2013

The dark.

I can't breathe.
The grief is filling my body, and I let fear in.
No words can give me comfort,
for I am too far gone
The tears they fall, my heart is heavy.
This pain is taking hold of me.

I am struggling to fill myself with love and light.
Instead I am angry, hurt and afraid.

I am nothing but a lost soul drifting along
Waiting for the brightness to appear.
All sense of knowing disappears
Until I find Love again.

Thursday, June 13, 2013

That's all folks!

After much thought, and with a heavy heart, I have decided to close this blog to the world wide web.
The recent passing of my brother has rocked me to the core.
He was the one who helped me set up my originial blog (some long time readers would remember I blogged there before blogging was even a 'thing'). Jacob was so far ahead of things in the online world and he was the one who encouraged me to keep writing (even when I didn't feel like it).
He is not here to read, comment, and encourage anymore.

So, for now, it is goodbye to Blog About a Bloke.

I have made so many wonderful friends through blogging, and have received so many emails from families all around the world who have a child with either a disability or Wolf-Hirschhorn Syndrome. These friends are the ones who have continued to be there, even though I am not blogging much anymore.

I have not yet fully decided what I am going to do with the blog.
I may continue to write in private, I may just print it all up and keep it somewhere, I may eventually start blogging here again.

Thankyou so much to all my wonderful readers. And thankyou to those who keep reading, even though I just can't seem to post anything right now.

I will be closing the Blog About a Bloke Facebook page at some point too.
Rybrae Farm will remain open as we move forward with that project. So feel free to follow that page (link is in the top right corner).

"Now the oak trees are swaying in the early Autumn breeze
The golden sun is shining on my face.
The tangled thoughts I hear a mockingbird sing
This whole world really ain't that bad of a place" 

Rascal Flatts 'Why'

Wednesday, May 22, 2013

Love Who You Love

I have always loved this song and it has even more meaning now.

Missing you Jacob. Every single day, with every inch of my being.
In my thoughts, in my mind, you are still here.


LOVE who you love.

And SAY that you do.

Thursday, May 16, 2013

May your soul return to Knowing
That Love is all you need.
Send fear away and choose to be
One with God, for then, you will see.
Your shining light,
And Our Love.
May your spirit live on in peace.
Please just Believe.

Missing you every day.
Your biggest sister Anna, your brother in law David
And Uncle Jaypeg’s nephews,
Ryley and Braeden.
Never far from our thoughts, always in our hearts.


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