Silent chaotic prayer 

I am just so angry.
Where are you God? I know you won’t leave me, but right now, I cannot find you.
This hurt that is inside me is all-consuming. It’s overwhelming and frightening.

I struggle to join coherent thoughts together and the idea of completing simple everyday tasks seems so much more than I can possibly handle right now.

I wonder aloud whether there is more to life? There has to be. Surely this isn’t the best that life has got to offer? And I if this is in fact it- I want out.

Why aren’t you fixing this mess?

My mind is starting to go places that I know I should stop it from going. It’s been poking into dark corners that should be avoided and meanders it’s way along deadly paths and tracks that are all one way streets.

There is no coming back from some of these thoughts, but at the moment, it is what it is.

I’m so angry I can barely breathe some days.

Why have you let me get so low? Why aren’t you changing anything?

My current state of mind is a veritable quagmire of pain mixed with emotions that have no escape. They swirl around in my head and spin madly creating a series of out-of-control tornadoes that have the power to take me out in one foul swoop, and the energy that I expend trying to push them back under the surface is nothing short of exhausting.

Why aren’t you bringing the break I so badly need? Surely I deserve better than this?

Trying to keep this stupid mask glued to my face that presents a coping facade to the public and fool them into believing that every thing in my world is peachey is a task that requires enormous self-control and frankly: I no longer seem to have that in me anymore. My emotions torment me daily.

Where are you hiding from me?

These emotions hover on the edges of my sanity provoking me and passively aggressively eating away at my peace until I explode in a spectacular display of insanely refractory behaviour that paints me into a corner where I sit and rock as I try to wrap my head around what the hell is happening around me.

I am through pretending. When is this going to end?

Where is my escape?

Maybe I really have lost the plot once and for all. Maybe the end of my rope is the end of my life as well?
You know what? I don’t even care anymore. I’m done caring.

I know that YOU care, well at least I thought you did.

I am all out, I’ve got nothing.
Jesus: I need you.  More than air.


Psalm 10:17
You, Lord, hear the desire of the afflicted;
you encourage them, and you listen to their cry.

 

 

 

 

 

Take another little piece of my heart now, baby…

ImageI write every single day.

But the difference between now and 3 years ago when I started this blog, is that I only publish a very small portion of what I write here on Wonderfully Wired. Most of it is in journals, on loose scraps of paper or still in my head because I learnt the hard way that people are judgmental.  Some people took it upon themselves to publicly correct me, accuse me and made an example of me because I dared to write about things that were slightly controversial, negative about autism or (what they considered) borderline attention seeking.

That’s just the way it is in blog land unfortunately. But I’ve also learnt that if I choose to make information about me or my family public then I have no place in getting upset when I am attacked. I made the choice to put it out there so I have to toughen up and take whatever comes my way.  I have withheld a LOT of information regarding Harley because he is now at an age where he is sensitive to how others perceive him and is high-functioning enough to notice that he is different. I am careful what I write because kids can be really cruel at times as can their parents. But despite all that – I really need to write this out today. I need to know that we’re not alone in this nightmarish hell that we’re living and I need to connect to other parents who not just get it but those who really get it.

Lately, we’ve been finding parenting really tough.

Harley is more aggressive than ever before, more panicky and anxious and more volatile as well. We’re at our wits end as to how to help him and the proverbial straw is balancing very precariously on the camel’s back at the moment.  His meds are taking the edge off –sure- but the underlying agony and grief that he experiences every day just ‘existing’ in this world is holding him hostage at all times.

I look at him and want to cry, not because I’m angry at him but because I feel so helpless to soothe his personal demons and diffuse his outbursts in time. He told me that his brain is literally driving him crazy, he said that he wants to rip it out and stomp all over it because it drives him mental. He doesn’t want to be ‘different’ anymore and wonders out-loud why he has to have autism because “It just sucks hard Mum”.

I only have to look into his eyes to see the pain etched there, the confusion, the hurt and the bewilderment at this world where he is made to feel like an alien. He told me that he knows that he doesn’t fit here on earth. He said he feels like a freak show and that he wants to die. His OCD has started to get out of control again and he is not only over-washing his hands until they bleed, he is also gnawing at them with his teeth.

“I need to feel pain Mum, it stops my heart and head from being overwhelmed. Every time I look at my hands it reminds me that I am stupid, that I am dumb and that I’ll never be like everyone else. I hate me Mum.”

I am extremely picky over whom I choose to spend time with these days. I can only wear my “everything’s fine and dandy” mask for short periods and I just don’t have the strength for small talk and niceties anymore. I may offend people in my real life with my perceived harshness and flippancy but all of my strength is going into keeping my family together and in one piece and I can’t apologise for that.

I keep putting one foot in front of the other because I have to. I keep soldiering on because I just don’t have the option to quit. I’m in this for the long haul – I will NEVER give up on that kid.

Ever.

Take another little piece of my heart now, baby!

Oh, oh, break it!

Break another little bit of my heart now, darling, yeah, yeah, yeah.

Oh, oh, have a!

Have another little piece of my heart now, baby,

You know you got it if it makes you feel good,

Oh, yes indeed.

–  Janis Joplin

 

Mind Jumble…

I’m constantly dreaming and wishing for things to change but still not even sure

what it is that I want – or even what it is that I’m feeling.

So many emotions all swishing around in my head – all of them unnamed 

and unable to be distinguished from one another.

*

Everything is just tumbling around inside on a continual spin cycle.

Sadness mixes effortlessly with happy memories,

joy wraps itself around pain and nothing makes any real sense at all.

Like a load of dirty laundry my head is turning over thoughts,

and trying to remove damaging stains in any way that I can.

*

But there is a strange comfort I can feel even in the midst of my turmoil.

A sensation of complete peace – a comforting blanket of protection

that settles me and causes me to believe that it’s all going to be ok.

I don’t know how. I don’t know when – I just know.

I know that my God will find a way.

Photo on 21-06-13 at 4.55 PM

I have love.

I’ve was sitting down at this computer for several hours this morning writing out whatever came into my head. I was trying to process some big stuff that’s going on here and writing it out usually helps me to make sense of it all. Heck – I stayed up most of the night trying to write it out and got nowhere.

And it didn’t work today either.  At all.

Words were looping in my brain and the solutions all seemed so far off. So I turned on some music, closed my eyes and tried to slow my brain down by forcing my thoughts to go elsewhere.

 I do wonder at times like this just how much aspie there is in me. Maybe I’m not as neuro-typical as I first thought? Or maybe this is a normal reaction to too much stress and confusion.  I just don’t know and don’t particularly care right now.

I turned off the computer and moved over to the lounge room to lay down on the sofa. I could hear the children playing in the background – the sound of the Ninjago app I recently downloaded was coming from the iPad.

My daughter was watching one of her teen shows on TV and the little one was rolling around on the rug piling cushions on top of himself because he was seeking sensory input. I looked at each of them and smiled. They really are everything to me. So different to one another – so unique in their own special ways.

Ella walked over to me and handed me a coffee. It was strong and black – just the way I like it and sat down beside me putting her tiny waif arm around me pulling me close and kissing the top of my head. The daughter was comforting the mother – so wrong yet so RIGHT. And this action in itself is HUGE because she is not a touchy-feely person at all. But my girl sensed that I needed to be held.

In that moment I thanked God for allowing me the privilege of raising her.  I love her so much and can’t believe that I have been trusted with so much.

I looked over at my big boy and noticed him reading his new Ninjago book intently.  He was engrossed and sitting on his haunches just like my Dad used to do. A tear came to my eye and I wiped it away quickly. I couldn’t afford to lose it, there was too much to be done.

My little one had progressed to doing laps of the living area. He had set up an obstacle course with toys, bean bags and cushions and was jumping, skipping and hollering with delight. My problems suddenly seemed so insignificant.

I closed my eyes and lay my head back down and drifted off to sleep because I had been awake for most of the night. When I awoke later I heard giggling in the kitchen and I crept out to see the three of them working as a team. They were making me the most disgustingly wonderful sandwich I have ever seen. And instantly nothing else mattered.

I realised right then that I have everything because I have love.

It may not always come from where I most desire it, and it is sometimes disjointed and awkward and usually messy, but I have love.

Thank God for love. Thank God He loves me more than any other human being could possibly love me.

Thank God that He sees me and not the mess I have made of my life, and He loves me still.

Have a great weekend all.

x

Yes - it's an old pic but the only one I could find with all 3 kids in it :)

Yes – it’s an old pic but the only one I could find with all 3 kids in it 🙂

Thankful

I can clearly remember the first time that it really hit me that I am a parent.  And I’m not talking about the moment I saw two red lines on the home pregnancy test, or the moment when the Dr confirmed my pregnancy or even the first time that I looked into my new daughter’s eyes 3 hours after the most pain I’ve experienced to date.

I’m talking about the moment when the reality hit me that I was no longer “Daddy’s Little Girl” or “Mummy’s Princess” but a grown up who now had to be the one who would be looked up to instead of the one doing the looking up.

And I’ve gotta tell you, it scared the absolute crap out of me.

As a child I remember running into my parent’s bed in the middle of thunderstorms and being comforted just by sensing them near me. And I recall many times when I got lost at the shops momentarily until my parents sought me out. I even remember my Dad sitting on the edge of my bed and praying that fear would leave me as I shook because I was so frightened of the dark. He turned the toilet light on that night and it stayed on for many years afterwards.

But when that day comes that you realise that YOU are now the go-to person when a child is seeking comfort, it can be both touching and overwhelming at the same time. My kids look to me with admiration and total trust and rely on me to be their safe place, I am the one that they run to when the sky is lit up with lightening and the house feels like it’s shaking from the thunder. My bed is where they end up snuggling into me, and I am the one who goes into bat for them every time that a situation starts to escalate and become beyond their control.

It’s a lot of pressure and at times can be frustrating, tiring and really damn annoying. But I have come to realise that I am extremely and totally blessed beyond belief.

I get to be a safe place. 

And that’s a blessing that a lot of people will never know. So I’m definitely not complaining.

~~

I have gone back and forth over whether or not to add my 2 cents worth to the shooting tragedy in Newtown Connecticut a couple of days ago and almost decided not to write anything in case it appeared that I am trying to score hits on my blog by doing so. And I don’t want to use something so horrific to attract traffic here; which is why I am not going to add any tags containing those words.

What I am about to write is for you guys; the faithful readers who already know me and know that it’s not my heart to benefit from things like this.

~~

Two of my children are in the age group of the children who were massacred so it was really close to home for me. I have done a lot of thinking since the shootings occurred and my heart is aching for those families who have just experienced more tragedy than any other human being should have to bear: The loss of a child.

They will never get to be their child’s safe place ever again. They won’t feel the warmth of a small child snuggling into them seeking protection and they would give ANYTHING to be able to hold their baby in their arms one more time. And there are many other families who are also affected because their child was one of the “lucky” ones who got away. These babies have been exposed to things that no human being should ever have to witness in their lifetime.

I have written a lot about how hard I find parenting on this blog. I have written about the good times, the shocking times and almost everything in between. But from now on – even when I’m in the heart of one of the worst moments imaginable – I vow to remain acutely aware that I am blessed just because I get to be called “Mum”.

I’m not weighing in on arguments about gun laws, mental health issues or the concept of taking God out of schools in America (as has been in the media constantly over the past few days). There are many other bloggers far more qualified than me who are already writing about the bigger issues.

But as a Mummy blogger I am going to say that I am going to remember that no matter how frightening and overwhelming this whole “being a parent” thing can get – I will make the choice to be thankful.

  • Thankful that I can hold my babies close.
  • Thankful that I can be a safe place even at 3 o’clock in the morning,
  • Thankful for life.

For me – I’ve come to realise how sad it is that it has taken something so tragic for me to recognise how blessed I am.

I will continue to pray for the families who have lost everything.

I really  wish that I could do more.

IMG_4384

Dear Friend, Neil says it much better than me.

 I had a post all ready to go tonight but it has taken a back seat for now because one of my best friends lost her Dad this morning and I have no idea how to make it all better.

Dear Friend,

You and I have only been friends a reasonably short time but we have shared so much, have loads in common and become quite close, It feels like we’ve known each other for years.

And I hate the fact that we now have another thing in common.

I hate that there are no words. No words that I could speak that would lessen the pain. There is nothing I could do that would ease the ache in your heart and I want to take away the fog that has probably started to descend on you right now.  I hate that fog. It’s overwhelming, all-consuming and like a tonne of bricks has been heaped onto your shoulders.

I pray for the enveloping peace of God to cover you and your family now. That you would allow Him to take that burden from you.

There is so much to organise, to plan and to deal with and friend, I want you to know that I am here. I am here when you want to scream, when you want to cry or even if you just want to sit in silence.

I am still here even if you want to shut down and hibernate for a while: But please know that doesn’t mean I will stop checking on you. I will watch you closely but only because I care.

I promise not to be one of those friends that says “Call me if you need anything” as a flippant throw away line with good intentions, because let’s face it: You won’t call. No one ever does.  We all hate to have to ask for help. It’s how we are. Instead, I will bless you un-expectantly because you deserve to be looked after.

I also promise not to avoid you like so many people do out of fear of causing offence.  To steal a line from another close friend: I come with an apology: I may not always say the right things, I probably won’t always have the right words and I often put my foot in my mouth but I won’t carry on as though there in an elephant in the room that nobody wants to mention.

And in the words of one of my favourite songwriters Neil Finn in Distant Sun:

I don’t pretend to know what you want

But I offer love…..

Love Me x

Different NOT less.

This poem was inspired by a number of things that have transpired here lately. Firstly by Eustacia Grandin Cutler who is Dr. Temple Grandin’s mother who coined the phrase “Different not less”. She wanted the world to know that her daughter is remarkable but my no means any less of a masterpiece just because her thoughts and ideas are sometimes a little left of centre.

Another inspiration for this poem comes from sitting down at night and talking to Harley about his day and hearing the pain in his voice as he is starting to realise that he is different to his peers.

He has had a lot of “down” moments lately and it has been coming out in his behaviours at home.

No-one else is privy to this hurting side of him and that’s one of the downsides to being high-functioning I guess. He is able to recognise that he is an anomaly and is trying his darndest to change that and I’m so mega proud of my boy but sometimes feel like I’m standing on the sidelines watching a traumatic event take place before my very eyes and all I can do is stand anchored to the ground with my arms ties to my side unable to do anything to help him.


Sometimes I want to run away,

And leave it all behind,

I’m tired of the exhaustion, want

To quit the daily grind

.

The tiny things that make me see,

The hugeness of this task,

Of raising special children is,

A really montstrous ask.

.

It’s not the normal Mummy things,

That make me want to yell,

I can do the meals, the baths, the chores,

And manage very well.

.

The dressing kids and sorting fights,

And homework battles too,

I get that every other Mum,

Feels like she runs a zoo!

.

No, it’s not the things that we ALL do,

That make my tears begin,

And threaten to undo my cool,

and break my heart within.

.

It’s seeing how the simplest things,

Can totally undo,

My child because he cannot tell,

Me what he’s needing to.

.

When he erupts if he can’t cope,

I sense his physical pain,

I see the torment in his eyes,

And watch him thrash again.

.

He wants to be like all his friends,

He wants to blend right in,

He knows he’s different and that hurts,

His feelings through and through.

.

My mother’s heart just breaks apart,

When he tries to adjust,

To sit in crowds, with noise and lights,

And try to look non-plussed.

.

The things that others take for granted,

Really causes me stress,

I want the world to realise that,

He’s different but NOT less.

Understanding and working through guilt.

Mum introducing baby Harley to a horse 🙂

In just under 2 weeks time – Mr Patient and I are going away overnight to attend my cousin’s wedding. The venue is a couple of hours drive away from here and rather than try to drive back later that night, we have decided to stay in a nearby hotel instead.

I’m actually finding though – that I’m having the exact opposite emotion to guilt (whatever that’s called) whenever we leave the kids with friends or family these days.  Instead of feeling guilty that we have left them…..I feel guilty because I’m NOT missing them….How twisted is that!?

But it hasn’t always been that way.

For many years I carried guilt and shame related to leaving my children and it’s only been recently that God has set me free from this burden and I’ve been able to see that in actual fact – in the particular circumstances that I have lost sleep over I didn’t even do anything wrong. It can all be traced back to the different brain wiring of my son and the fact that we didn’t know anything about it.

I clearly remember way back to in late 2003 when Ella was almost 4 and Harley was still a baby.

None of us had slept more than an hour at a time on any night due to Harley’s constant screaming and crying, but my parents knew that we were absolutely exhausted and needed a break.

So they offered to mind the kids for us up at their place (in the country) for 5 days so that we could escape over to the coast to stay in a gorgeous little bungalow on a lagoon that they had booked for us. We were SO excited at this idea and knew that we desperately needed this break and looked forward to it for WEEKS.

Prior to this – I had been having headaches and facial numbness for months but it had gotten a lot worse in the weeks leading up to this escape so I went and saw the seventh Doctor in two years and listed my symptoms for the 7th time expecting to be sent away being told that I was a hypochondriac again. But this time I demanded that the Dr do an MRI because I wanted to put my mind at ease once and for all so that I could enjoy this holiday with nothing to encroach on my peace.

But of course the MRI revealed the brain tumour that I had been accused of inventing symptoms for, and our little couples escape never happened.

On the night before I was due to go in for my surgery – my baby Harley came down with the chicken pox and wasn’t allowed to come and visit me in the ICU or even after I was transferred to the brain injury ward until the spots had disappeared.  On the morning of my admission to hospital, my Mum clearly remembers standing on my front porch waving her daughter off to have life-saving brain surgery while her grandchild itched and cried for his Mummy. His little arms reached out to me but I had to turn and walk away. THE hardest thing I’ve ever had to do to date.

When he did finally get the all-clear from the Dr and was allowed to visit me in hospital – he didn’t seem to know who I was. He was only 14 months old and Grandma was the only person he responded to. This was my first introduction to mother’s guilt.

Fast forward almost 2 years and 2 major surgeries later and we finally took that well-deserved holiday on the coast and by then – we were even more in need of a break than 2 years earlier and couldn’t WAIT for the day to arrive.

So we drove the kids up to Mum and Dad’s and jumped back in the car and drove to the coast to r-e-l-a-x!

But do you know what?  Once we got there – we didn’t know what to do with ourselves!  We didn’t know how to just stop and we were unable to relax much because we continued to be consumed by guilt.  After our first swim in the pool, dip in the spa, stroll along the beach and dinner and movie date – we were all outta ideas! And this was all done in the first day!

We weren’t used to having so much time alone together and didn’t how to spend it! We phoned the kids several times a day and actually ended up going back a day early to surprise them! We had clued Mum and Dad in and asked them not to tell the kids.

And to this day – I’ll never forget Harley’s reaction.  Even as young as almost 2, he showed signs of being very distressed by changes in plans.

(And recalling all of this now – I can’t believe that we missed the “A” word for so long).

 So we pulled up in my parent’s drive way and walked around the side of the house because we could hear them playing in the back yard. We didn’t call out to the kids – we just stood there and waited for them to spot us.

Ella saw us first and immediately came running over exclaiming “Mummy, Daddy! I’ve missed you!” But Harley burst into tears and clung to Grandma’s leg… He was confused and wouldn’t come anywhere near us. Me particularly. I remember how devastated I was by this but I think I did a fairly good job of disguising my hurt. We’d only been gone 4 days and I already felt as though I’d abandoned my child and his reaction to me just magnified my guilt. It took me a very long time to stop blaming myself for going away and leaving him even though deep down I knew that we desperately needed the break.

That afternoon, Harley stayed close to his Grandma for hours and eyed me suspiciously from afar.  He lay on Grandma’s knee and drunk his bedtime bottle that night and she was the one who laid him in his cot. Not me.  He didn’t want me. I remember how much my heart broke that night. It stayed with me for years but I didn’t know then that this was one of the early signs of his autism causing confusion, and anxiety in him.

~*~

I was only thinking about all of this today and for the first time I actually GOT IT!

I finally get that these incidences of Harley’s over the top reactions to change were nothing at all to do with my parenting (or lack of). I can now see that they were both just very early indicators of a little boy who is wired very differently to me.  I understand that his response to these events can be attributed to the fright response that is common amongst ASD children when they are confronted with a situation that didn’t go the way that they expected. Harley was simply reacting to change and clung to that which made him feel safe.  And in both of those circumstances – It was my Mum that was his safe place.

It has all become crystal clear to me this week exactly WHY Harley has such a closeness with Grandma.

I now understand completely that she was the only constant in his life every single time that things have gone belly –up.

She was not only someone who was there for him when he needed it most.  Someone who knew he was special and knew that he was different but chose to love him unconditionally and without judgement.

Thank God for my Mum.

And thank you God for healing my hurt.

King David rocks!


 Things have been rough here lately. I won’t bore you with the details but the basics are: Harley has been a NIGHTMARE, some plans that I thought were going to come to pass never eventuated and my children have been at constant loggerheads for WEEKS now!

I sat down in the sunshine this morning with a pen in my hand and my journal so I could write it all out. I just wanted to purge myself of these depressive emotions and helpless thoughts..

I was chatting to my Mum on the phone afterwards and she commented and how similar my words were to that of David’s Psalm 13 in the bible.

I giggled as I told her that I had just finished writing a poem and I read some of it out to her on he phone.

But mine is definitely more of a 2011 version and more specific to my current issues. The main similarity is that I too have been asking God why on earth he is not answering my questions and why he seems to be hiding from me!

…….

Is it meant to be this flippin’ hard ,

I need to catch a break

The constant strife and sibling wars,

Are more than I can take!

.

Poor Ella says she’s had enough,

And really wants to leave,

I know exactly how she feels,

I’d also like a reprieve.

.

Just simple tasks like getting dressed,

Result in big explosions,

Of tears and kicks and hits and cries,

And un-controlled emotions.

.

Each day I swear it’s getting worse,

My patience is wearing thin,

Does it really improve? Or is that just a joke?

Will we EVER start to win?

.

I thought by now we’d start to see,

Improvement NOT back-sliding,

So why do I feel like I need to go,

Retreat back into hiding?

.

We’ve got the cards of visual clues,

Stuck up on every surface,

But still we fight and tempers flare,

Do we honestly deserve this?

.

What will it take for them to see,

They’re tearing me apart?

Every stupid whinge and silly fight,

Stabs right into my heart.

.

I KNOW that God has said he won’t

Forsake or leave my side,

But I cannot seem to find him here,

Maybe he’s hidden beneath my pride?

.

He also promised that there is,

A great plan for my life,

His will isn’t for me to be just another,

Exhausted mother and wife.

.

So even though it hurts so much,

I’ll choose to seek His face,

And look to Him and his guiding light,

Until I complete this race.

.

.

Psalm 13

    For the director of music. A psalm of David.

 1 How long, LORD? Will you forget me forever? 
   How long will you hide your face from me? 
2 How long must I wrestle with my thoughts 
   and day after day have sorrow in my heart? 
   How long will my enemy triumph over me?

 3 Look on me and answer, LORD my God. 
   Give light to my eyes, or I will sleep in death, 
4 and my enemy will say, “I have overcome him,” 
   and my foes will rejoice when I fall.

 5 But I trust in your unfailing love; 
   my heart rejoices in your salvation. 
6 I will sing the LORD’s praise, 
   for he has been good to me.

The response we never knew.

I got to see a whole new side of autism this week. One I’d never really witnessed to this extreme and I’ve got to admit that it kinda unnerved me. Lucas has been so sick this past few days that he completely shut down and became non-verbal.

I have always known that in times of stress or illness that Harley almost always chooses the fight response and that Ella takes flight but until now – I hadn’t quite figured out which way Lucas would go in times of crisis.

But now I know. He shuts down and takes flight and it’s pretty damn scary let me tell you.

Daddy was very concerned

For those that haven’t already heard – Lucas’ fevers ended up landing him in hospital to undergo a series of tests, and at one point the Doctors were concerned that he might have  Guillain–Barré syndrome as he was unable to stand or walk or bear any weight at all on his legs. He was also unable to urinate and the Paediatrician couldn’t get a reflex response from his knees or his ankles. But this was only ever a temporary diagnosis awaiting test results for confirmation and we prayed HARD that it wouldn’t stick.

This all happened on Lucas’ 5th birthday on Thursday which is actually how we knew that he wasn’t faking anything. What child wouldn’t want to walk up to their parent’s bedroom to open their gifts? What child would lay disinterested on the floor not absorbing the excitement that was all around him?

The paediatrician originally told us that Lucas would have to undergo a lumbar puncture and I was feeling sick about it. Thankfully though, it didn’t come to that because they were able to prove through the results of all the various other tests that he has “Influenza Myositis” which basically means that his muscles are inflamed as a result of the particular strain of flu that he contracted. This is why his feet and legs couldn’t hold him and this is why he was so weak and lethargic.

***

The entire time that Lucas was undergoing tests and being monitored – he lay in the hospital bed completely glassy-eyed and non-responsive. He would look straight through me and stare into space. It was a real case of the lights being on but nobody being home! He is usually such a lively and active little boy – this was NOT him at all.

Slumped in Mummy's arms. A familiar pose.

After each blood test (during which it took 5 adults to hold him down) he would scream for 10-15 minutes and then slump into a long, deep sleep where he didn’t register anything at all. I would tickle his feet and legs and he wouldn’t respond. This was frightening because Guillain-Barré usually starts at the feet and the paralysis works its way up until the entire body is affected in what sometimes becomes permanent paralysis. So for him to not even flinch was not good at all.

There was so much going on in and around him that he was simply unable to process it all so he shut down so that he didn’t have to process any of it.

Otherwise known as: Survival mode.

He spent hours laying in my arms dozing in and out of sleep and didn’t seem to register anything that I said to him. He would occasionally look intently at me without smiling, gaze around the room and then drift back off again.

I had no choice but to trust God and pray that he would be healed!

And thank GOD that things did start to improve and he was sent home late yesterday afternoon to continue slowly recovering in his own bed.

He certainly gave us all a fright!

Since he has been back home – he is smiling again, registering faces and even talking a bit.

He’s still not well but is a completely different child. It’s amazing how different he is when he is surrounded by that which is familiar to him.

There were people praying for him all over the world thanks to the wonderful friends that I have and we had so many offers of meals, help and support that it was simply overwhelming. I am overflowing with gratitude to each and every person that contacted us in some way during this unpredictable and confusing time.

Thank you 🙂

God is good and he heard our prayers. We are thrilled that Lucas’ final diagnosis is not as serious as first mentioned by the Doctors and are so thankful to have our little boy back again. I am so pleased that God orchestrated it in such a way that my Mum has been here the entire time to help the family to run smoothly too. Harley is very close to my Mum and he needed the assurance of someone who “gets” him nearby during all of this turmoil.

Harley has been unwell himself and as the days pass by – we have noticed him limping on his legs and complaining of body aches and pains too.

*sigh* JUST what we need – another sick child!

At least now we know that we can manage it and that he probably has a similar thing to what Lucas has endured.

Since yesterday, Harley’s words have become less frequent and they are gradually being replaced by moans, groans, grunts, screams and crying. It is clear that his condition is worsening and his little body is handling it in the way the HE responds. Not by taking flight but by fighting and taking fright.

I’ve been kicked, punched, slapped and growled at this afternoon and he has punched his brother’s helium birthday balloon in frustration and anger until his face turned red with exhaustion. He is stomping around the house like a bear with a sore head and kicking everything in his path.

Poor little Lucas has been in the firing line most of the afternoon and has taken shelter in Grandma’s arms on a number of occasions. Everybody suffers when Harley is unwell or unhappy. Yep everybody.

*Sigh*

If only Harley wasn’t a fighter.

Taking flight is by no means good but at least it’s more socially acceptable and no-one gets hurt.

I know that this is the way that Harley is made and that even he can’t always control it , but oh-my-goodness…..this violence and aggression really bites.

Please get well soon Harley. We want our beautiful, affectionate charming little man back.