Category Archives: Joy

My Current Reality of Seizure Watching

Two of my kids were born with microcephaly and lissencephaly — small brain and smooth brain. Prone to disability and prone to seizures. And the seizure thing — we’re living that right now.

I write from the outdoor couch, where I’ve positioned myself so I have a direct view of my daughter, who is sitting on the inside couch listening to a little girl sing Christmas songs on youTube. It’s a mixture of joy and safety. For Summer it’s the joy of music and the safety of the couch, in case she has a seizure. And for me it’s the joy of being outside closer to nature, with the safety of having a direct line of sight to my daughter Summer, in case of seizure.

So I’m on high alert.

These are the thoughts that have to be thought every day.

Because this year Summer has had over 60 seizures. And since Monday week ago, Summer has had 16 seizures, primarily during her sleep time. This resulted in two trips to the Emergency Department and overnight stays at hospital, plus multiple tongue bites and her subsequent refusal to eat food for about 6 days. Needless to say she lost quite a bit of weight and we started buying Sustagen for her, to be consumed with a straw.

It’s been a tough week for Summer. And it’s extra hard for her with her moderate intellectual disability and diagnosis with autism. Add to that her lack of sleep this last week, hunger and new meds affecting her moods and I’m amazed it wasn’t a recipe for disaster. Only one thing got broken this week — the brand new baby monitor camera which got flung on the floor. My other expensive equipment I quickly dismantled and hid in my wardrobe until Summer’s frustration had passed and my husband was able to assist.

Apart from that, she’s been amazingly patient and low key. Full credit to her — honestly amazing!

But it’s still been intense.

Summer’s younger sister and brother have seemed pretty ok with it all. But last Friday I could see it weighing on them. Flatness and tiredness and them at first wondering why they were tired. It’s easy to explain. We all acknowledge it’s been a tough few weeks and months.

Sarah and Micah the younger siblings have often been the first ones to alert us of seizures, when they were originally happening during the day. Especially if they’ve been watching TV with her. Sometimes if we can’t be with Summer, the positioning of the other kids in the same room is peace of mind, but we don’t want to burden them. We try to take the brunt of it. And also use carers.

Our older two kids and Oma shone through with love and support this week. Josiah saw us both wrecked on Sunday night and took it on himself to heat up a lasagna dish he had bought for himself and dished it up for the two youngest ones. And did the dishes and wiped the stove out of care, without being asked. And then he volunteered to do the sleepover to watch Summer. We were SO grateful. And Oma got the girls ready for bed, since we didn’t have a carer that night. She’s always willing to step in when needed, always going above and beyond.

Our eldest daughter Kiara, with Kaitlyn came over with a cooked meal, plus chocolates for me and Kris. And a crocheted bee that Kiara had made by hand for Summer. Bees are the theme for Summer right now, so she was beyond excited!!

And the carers have all been amazing — helping out every morning, afternoon and most evenings. And some doing sleepovers! Without them we wouldn’t be coping.

Kris and I are tag teaming intuitively, and also learning to discuss our expectations more in advance. This has been testing, but overall very good for us as a couple. Kris has reduced his work, to help support me and the family more. I’m very grateful.

And the biggest, but mostly invisible help, is our family and friends encouraging and praying for us!

This is truly a team effort!

It’s hard to know how to live life in seasons like this. I’ve had all these goals I was trying to consistently achieve before all this happened and I was doing well. But with this onslaught, I’ve had to let them go. (This is a recurring pattern in my life). All I can do is look after myself and look after the kids and my husband. And the best use of my energy is a posture of kindness. That posture looks after me and looks after everyone else. I’m grateful for that opportunity and learning. That’s a better achievement than my goals.

Summer was supposed to be at a respite house this weekend for two nights, but because of the seizures she is home. So her sister Sarah went there alone. But we got a message from the respite house this morning that Sarah bit her tongue, probably overnight. We suspect a seizure. Sarah has only had one seizure in May last year, and is on epilepsy meds, but we have been on alert in case more occur. The support worked also reported that Sarah was having odd balance issues and facial ticks (mini-seizures?) this morning, so we are picking her up early this afternoon.

So someone will sleep in Sarah’s room tonight and someone will sleep in Summer’s room, to monitor for seizures.

It seems unbelievable that this is occurring. A double whammy! We did want an extraordinary life. This wasn’t what we were thinking.

But what can you do?

I guess I laugh with incredulity at how crazy this moment is. And I pray.

Mostly though I rest in trust. Trust in who God is and his goodness in our life. That’s my most profound reality.

I’m still stressed though. But with peace and trust. How is that even possible? It’s a weird mix. And without God I don’t know how I would cope.

We are grateful for peoples’ kindness in this season. And I’m reminded how much others need my kindness too. I hope I always remember that.

I’ve got a break now. Leigh our carer, has taken Summer and Micah out for a trip to the lolly shop. And then he’ll pick Sarah up and bring her home. What shall I do now?

After I upload this article, I’ll probably lie down outside with my relaxing music on and do a puzzle.

I hope you have a nice day wherever you are. And I hope people are kind to you.

I don’t often write about this, but this morning for some reason I wanted to. Thanks for reading.

Perseverance

The Purpose and Joy in the Trials

Photo by NEOM on Unsplash

My parents bought me a black and white picture of a gymnast on a beam, with the caption,

“Do not pray for an easy life. Pray to be a strong person.”

I didn’t like the picture. It had no colour, or joy to it. And I didn’t like feeling pulled in by the caption. I knew I would succumb one day and pray that prayer.

And I did.

Several years later, I decided to memorise the book of James, a practical book of wisdom in the New Testament, from the Bible. I was drawn to its strong and unapologetic stance on things like caring for the poor, faith in action and taming the tongue.

So I started memorising the first chapter and then was struck by verses 2–4:

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.” James 1:2–4

Wow that was a kapow!

And because it was at the start of the five chapters, when memorising and revising, it got the most practice. So it got locked solid in my brain.

And I dissected it bit by bit in my own time. Understanding the words, one at a time.

I thought — do I want to be mature and complete? Yes please. Do I want to lack nothing? Yes again.

So what do I need to achieve that?

According to the verse — I need perseverance. But not only perseverance, I need to persevere with perseverance, so it can finish its work.

But how do I get this perseverance?

Well, it says that having my faith tested develops perseverance.

So I need lots of instances of my faith being tested. And that means trials of many kinds. Not just one, not just a few, but many. And all different!

And this is the revelation I got at the time.

Consider it pure joy.

I got it.

Trials could be viewed differently. Instead of being just pain and suffering, discomfort or disappointment. I could view them with actual joy.

Because they were achieving for me what I wanted. And what couldn’t be achieved any other way.

How else do you get perseverance, without persisting through something difficult? How else do you prove your faith, without facing something hard that many might give up in the face of?

That verse has encouraged me over and over again in my life.

As a teenager I didn’t have that many trials. Sure I had friendship issues at school, but I was raised in a safe, loving and godly home.

But now that I’m 47 years old, I can most definitely say I have been through a huge amount of trials, not the least of which has been nearly 10 years of chronic fatigue, while raising five children, two with special needs.

I need all the encouragement I can get in this season of life. I long to have energy and feel normal again. I feel so burnt out from caring from my special needs daughters, even with the support of my husband and multiple carers for the girls.

But even in the midst of the prolonged nature of this trial and the disappointment that I face within this, I am reminded of this verse. Consider it pure joy.

And when I’m reminded of this perspective, I am invigorated with great hope in the midst of great challenge. I can have a strong sense of purpose.

Not an easy life. But an adventure. And one that is building me in all the ways that I need.

Child-Like Trust

Adulting with Joy and Peace

Photo by Terricks Noah on Unsplash

Light and playful. It’s a vibe I like.

My kids do it well. My daughter Summer is 17 years old. She has a moderate intellectual disability, as well as being diagnosed with autism and epilepsy. Verbal communication is not her strong suit, but she loves to connect with people. She loves to have fun. And she loves to laugh.

She will sit with two adults having a conversation for long periods of time. And when they laugh she will laugh. With gusto. It’s hilarious. I don’t know whether she understands fully what the conversation is about, but she understands the laughter. And with that she joins in. And people love her for it.

My son Micah is 13 years old. He is often launching out with funny comments or questions, or playfully teasing my husband and I. I’m not always ready for it, but he is. He has a playful vibe of ease, that I know I need to lean into more. It’s good for me. It’s good for him.

Yesterday I was praying with two other women. And sharing how I was struggling with so much fatigue. Having been diagnosed with chronic fatigue, this is a recurrent theme and I’ve had all kinds of advice. But yesterday their encouragement was different — live more like a child — with joy, freedom and playfulness.

Then last night the theme continued. My Facebook livestream guest was interrupted by her young son near the end of the program, wanting to say goodnight. She shared how he had also come to her earlier, so determined and insistent for her attention. So much so that she got a revelation…

“That’s how it’s supposed to be with us and God… running to him, with all our want and insistence, just to be in his presence.”

I cherished that image when she brought it. That one-eyed wanting of his attention.

So I pondered all of this today…

Why is that we adults often don’t live with the joy and freedom of kids. At what point do we lose this and why?

I thought about our responsibilities and our subsequent seriousness. I wondered if we bear the weight of these and they burden us. Do we become fixated on what we must do — desperately trying not to drop the balls we are juggling in the air?

Perhaps also, we learn over and over again, through let down and disappointment, that other people can’t be fully trusted. And so we are tempted to be more self-reliant, trusting only ourselves.

Indeed, that let down is inevitable for all of us. People have different perspectives and expectations. And we can’t mind read or live to please others all the time. So disappointment, then self-protection eventuates.

And yet children haven’t learned any of this. They don’t carry this burden.

But what if the weight of adult responsibility is not meant to be entirely ours? What if we are not meant to put our trust in people?

What if we were created to put these weights on God?

Hmm that’s a thought…

But is that practical? How would that look?

What if we trusted God so implicitly as the good Father, that the weight of responsibility shifted. And we were just obedient children doing what needed to be done, but ultimately trusting God to provide, to direct, to protect, etc. A change of heart posture. Would that feel lighter?

And what if, instead of trusting people and being disappointed, or retreating into self-reliance, we put our trust in God. Living with the hope and faith, that he is our good Father, our provider and our shepherd. What would that heart posture do to our burden?

I sense many would baulk at this. Who puts their trust in the unknown? Who throws away reason to the wind?

But for those who know God, it is the most logical thing to do. The God who sees all, knows all, has ultimate wisdom, with unconditional love. There’s no smarter option. The God of the Universe who can be trusted, even if we don’t like what he says all the time. There’s freedom in surrender to him. Albeit that the process of surrender can be painful.

Surrender. The door to breakthrough.

Think about it.

So much anxiety we live with. It’s not meant to be. We weren’t made to carry that weight.

God help me be more childlike and trust in you. To not carry the burden of responsibility that is not mine to bear. I want to live with that lighter step, to enjoy the freedom of playfulness in the midst of adulting. I need your help to go through that door.

The Power of Non-Judgmental Thinking in Daily Living

Photo by Wesley Tingey on Unsplash

My dad was the first one who planted the seed. I remember when I was about 15 years old, being in the car with my brother while my dad was driving. A guy rudely cut my dad off and I had a moment of glee — this was the perfect justified moment to beep the horn. Dad had been offended and it was his time to let the guy know! I waited. My brother waited. We waited some more. And there was no beep. With great disappointment and indignation, we protested to my dad, “why didn’t you beep at that guy?”

I never forgot his answer — “you never know what that man’s morning was like — maybe he had an argument with his wife and is stressed, maybe he has cancer and is on his way to a medical appointment — I wouldn’t want to make his day any worse by beeping.”

OK. So we were silenced. What could we say in the face of that compassion and possible reality. And even if he was wrong, how could we actually know either way. Was he rude, was he not coping? We didn’t know. And that was my first lesson in judging. We don’t know all the facts.

In true parrot fashion, I re-enacted this lesson many years later with someone else in the car. We had passed a house with a horribly overgrown lawn and the person next to me was commenting how lazy the house owner was. I immediately looked for other compassionate scenarios, suggesting that perhaps the owner was disabled or sick and couldn’t mow the lawn, and/or was financially challenged and unable to afford to pay someone to do it. It felt good having this response.

So I started to practice this style of compassion more and more. I did not become an overnight convert. I still struggled with judgement. But in the process of trying, I began to discover important differences in the two types of responses.

I observed that judgmental thinking came with a sense of pride and superiority. This had a certain appeal, an enjoyable boost of ego, but in a dark festering way. And I observed that kind and generous thinking had real joy on the other side, leaving one feeling free and unburdened. I knew which one I preferred.

Years later, I was standing in front of my bathroom mirror. I felt exhausted. I was struggling with looking after five kids, two with special needs, one of whom had significant behavioural challenges. I couldn’t change my daughter’s disability, so I was desperately trying to create peace and rest in the places I could. I felt like I was doing everything I could — managing sleep, regular daytime rest, sunshine, good eating, etc. So I cried out to God, “What else can I do to reduce stress?” Straight away I heard the words in my heart, “Stop judging!”

I was taken aback. I considered myself to be a pretty non-judgmental person. I was practicing what I described above on a regular basis. That was now my default way of talking.

But was it my default way of thinking?

I realised that I still thought about the people in my world in ways that were judgmental. Had they offended me? Had they neglected me? My thoughts were all cased in judgment — they were insensitive, uncaring, not measuring up to my standards. I was judgemental!

I decided then and there to try to stop those thoughts. So when they came, as soon as I recognised them I would choose to end the trail. Think of something else. Just stop! It was not easy, but it was possible, as long as I remembered. And the more I practiced, the easier it got. And here’s the thing, I got more peace!

I reflected, there’s a lot of noise made from internal judgment. It’s busy and unhelpful. So it was good advice from God, to let it go.

And so yes I had more peace. But as with everything, there were more layers with this thing. You learn one lesson and you think you’ve learned it. Then you find there’s more to learn.

Fast forward to the present. And I find myself in a daily living situation, where I feel judged frequently. And by now judgement really grates on me, as I know how destructive it is. But there’s a trap. And the trap for me is to feel self-righteous. And then I got another revelation…

“With the measure you use, it will be measured to you”…

Those words from the Bible stuck in my brain. And it occurred to me that if I was feeling judged by this other person, then perhaps that was because I was judging them. Perhaps if I wasn’t judging, I would be free from feeling judged. Of course, my mindset can’t control another, but it can impact my inner suffering or peace.

I reflected on the words, with the measure you use it will be measured to you. I had always thought this referred to the end of time. The time when God judges the world. And then if you judged others harshly on earth, you get judged harshly by God.

But what if it was actually referring to the ‘here and now’. What if it referred to our inner suffering or peace. Perhaps if we judge others harshly, we perceive others as doing the same to us and we suffer for it. And perhaps if we don’t judge others, we don’t perceive others judging us. And so we don’t suffer. We have peace.

It was an interesting thought. And I have enjoyed it.

And I am still contemplating it.

At the end of the day, I always come back to the thought — God’s ways are brilliant. And he knows what he’s talking about!

Oh the peace that is available. And yet we do not often recognise it is so.

 

“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you. “Why do you look at the speck of sawdust in your brother’s eye and pay no attention to the plank in your own eye? How can you say to your brother, ‘Let me take the speck out of your eye,’ when all the time there is a plank in your own eye? You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother’s eye.” Matthew 7:1–5, NIV

Diamond

Image by Lars Plöger from Pixabay

We all have struggles. And we are all forged through them. Like diamonds…

I felt the pull to write these words, to articulate the intensity of the journey and the beauty that unfolds and that I hope for. But also for you too.

For me this composition is an interplay between me and my Creator. For you it may mean something else. I hope it will inspire and encourage you to value your challenges and see the possibilities…

Diamond

Intensity of formation
Heat and pressure
Again and again
Relentless

Hiddenness and obscurity
Humble beginnings await discovery
Thrill for the avid seeker
Determination, toil, persistence
“Eureka!”

Eye and hand
Of Master Craftsman
Vision of possibility
Skillful cuts
Fastidious polish
Care and cherishing

An original

Unveiling now
Father is proud
Resplendent beauty
Stunning multi faceted light

It is very good
Inner Hallelujah erupts
Sacrifice’s reward
Diamond of great price

You

.

Scored

Today God has so kindly allowed me to experience more fully what it is like to LOVE my family, instead of seeking my own good. I totally suspect God did it. I know he did.

I was sitting at the table playing a game with my husband and son. I was frustrated with the noise of the younger kids, irritated by my husband’s drumming fingers and my son’s exasperated noises. I felt like I didn’t want to be with them. And then I remembered how I had been choosing love with my husband, especially in moments where I was NOT inspired. And so I decided to choose love at the table in this moment. I started thinking, what would they want right now? I decided to play quietly, to speak kindly. It was like a gentle battle, of going back to my selfish ways, then choosing love. God made it easy for me.

Then at the end of the game, which I have played hundreds of times with different people over the course of my 42 year life, something happened that had NEVER happened before. The three of us ended up with identical scores – 195 each. We were all in disbelief. My husband took a photo and texted it to my dad, who also loves the game.

Afterwards I felt that the scores were a sign. A sign related to my choosing love. By choosing love, the three of us ended up level, equal. By choosing love, I did’t stand above in pride or judgment. We ended up all winning.

As I came upstairs and sat at my desk I was full of joy. Light, refreshing joy (not happiness). It just flowed through me, effortless.

I am so grateful to God for this experience. I long to remember to live this everyday. I know I need to practice it. New things take time to learn. And I know God will continue to give me the grace to learn this. He knows how much I long to live fully from love, not self ambition.

Trauma

So I’m sitting in my office typing while looking after Summer. Just Summer. She’s not interested in the iPad, which is good because it means she’s engaging with the world. Which is also bad, because she’s engaging with the world. Specifically the kitten (or rather cat). This kitten is very good, but he is meowing sometimes every 30 seconds, sometimes not for a while, most likely from being handled uncomfortably, probably squeezed. Downstairs I hear Rover, the 21 year old cat meowing loudly. I locked him in the laundry for his peace and my peace and for Summer’s safety. She has some new bite/scratch marks from him. Fair enough, he’s not up to being squeezed at his age.

Summer has improved a lot. She’s more gentle and kind, but still doesn’t always know what effect she has. She also doesn’t understand the impact of her behaviour on the rest of the family. When we are at low points, the meowing sound is exceptionally grating and stressful. I’ve been unwell with cold for a couple of weeks and very low energy. And this afternoon Summer kept bending over to pat and kiss Rover and would not listen to my directions to leave him alone. The bites and scratches don’t stop her. I physically pulled her over from Rover, as my patience was thin. So of course she cracked it – not as bad as she used to – just kept slamming a door and making noises. I was scared her finger would get jammed in the door.

I felt the toxic stress build up and didn’t want to shove it down. I wanted to release it. So I allowed myself to scream several times. No-one else was home but me and Summer and the neighbours wouldn’t have heard. I’ve done that once before and it felt such a relief. It was a kind of relief this time too. So then Summer screamed of course, so I blocked my ears, as it has a stress impact on my body.

Summer is so much better than she used to be, but I can sometimes get overly stressed by some of the small things she does – like screaming, or repeating words/phrases over and over, or making the cat meow. The other kids also overreact to these very same things. I’ve come to the conclusion that we are all suffering from a kind of post-traumatic stress.

Recently I went to a carer stress workshop and asked a question – How do I stop myself from getting heightened overly quickly to stress? I explained I’d had a stress related crash 3 years ago and had made major effort to implement healthy self care in many different areas, but I was still having this problem. She said it was probably from trauma. That sat right with me.

So I’ve been praying for God to heal me from trauma. And here lies the other side of my life. God.

I’ve been learning to live as a spiritual being, knowing my place as a child of God, loved, cherished, empowered by his Holy Spirit who lives within me. When I connect with God I can sometimes instantly feel refreshing joy, pure life and fire in my eyes. God is my strength. He is my hope. He is my safe place. My true home.

The more time I spend connecting with him, being in his presence, the more often I feel his empowering life within me, or feel his presence. There is no stress in him. I have been learning that my circumstances are irrelevant. I can praise God and find joy in him in the midst of immense challenge. His love, joy and peace are available in the midst of every trial. I just have to choose to lift my eyes, open my mouth and praise, pray, speak Scripture, speak in tongues, whatever. I just choose to connect and I do. It’s my choice.

And when faith ignites, so too does God’s power within me.

It’s like a secret life that is available to everyone. But you don’t find it, until your spiritual self is awakened. It’s called being born again. And it’s through believing in Jesus.

But there’s a gap at the moment. And it’s been exposed. It’s called trauma. And I’m reaching out for God’s healing. I can’t do it. I want my emotions back to normal again. I want my health completely back to normal again.

In the meantime, God is faithful and I am immensely grateful every single day for every single thing he is teaching me. There’s not a day that goes past that I don’t see him loving me and teaching him. He is so kind and so good and so faithful. I want to bring him glory and I never ever want to disappoint him. I love him so much.

 

P.S. You may wonder why we don’t just get rid of the cats to eliminate that stress. But here’s the thing. She loves animals. We have a dog too, Rupert, who she spends time with. But she spends HEAPS of time with the cats, because she can pick them up. And most of the time it’s good. And it keeps her settled. And stops her from engaging in other problem behaviours. So the pros outweigh the cons. And the young cats are robust – I don’t think anyone needs to call the RSPCA – they are only little meows – and at other times there is nice purring.

P.P.S For anyone reading this who hasn’t followed our family story, you may be wondering why I use the word trauma. Summer, our 11 year old daughter has microcephaly (small brain) plus moderate intellectual disability plus autism. Sarah our 9 year old daughter has the same, but without the autism. It is very time consuming and patience demanding to get cooperation with the smallest of tasks with both the girls. This is very emotionally draining. Plus Summer has had and still has a range of challenging behaviours including screaming and various types of aggression of various degrees. Plus unpredictable behaviour that keeps us on edge and on constant high alert. But she is also REALLY lovely and gorgeous and loving and beautiful and AMAZING! We are actually very blessed!

It is of course a very different type of trauma to others, eg not as extreme as a road accident. But it is ongoing and every day to various degrees. And over time this wears down our reserves.

Today Was A Happy Day

We had Summer home this morning (Saturday). So the day before I prayed – how are we going to handle this? I got this idea – what will bring joy? That was a better question than how will we survive. I decided to take my girls out for coffee… well hot chocolates. And by girls, I mean my three girls – Kiara (15), Summer (11) and Sarah (9). This was a Jack family first.

Now there was strategy in this. I knew this idea needed expanding or it could easily go pear shaped. I decided it would including drawing… Kiara loves art, the girls love drawing, and hey I can join in too. And so we did it. We went to Gloria Jeans, sat at a tiny table, drank our hot chocolates and iced chocolates and did drawing. Summer and Sarah were very excited. And Kiara had the look on her face that said she was about to do something special, that was even more important than chocolate.

Summer and Sarah were enthusiastic and loud, but pretty reasonable. Summer only disturbed one other patron, by knocking loudly on the glass window and waving at the old lady sitting just on the other side. Apart from that she sat amazingly still. There was some issues with textas on paper, due to the size of the table. Not much room. (Mental note – place with bigger tables next time). But apart from that, and some issues with drink and room temperature, it was a truly lovely experience. The girls loved their chocolate drinks and were happy to share and try out each others.

We lasted 45 minutes, which was amazing for Summer and then she was off. Kiara directed – mum you follow Summer, I’ll look after Sarah. I was already off. And we were crossing the road on the pedestrian walk, where a car stopped for us. Summer decided to stop half way across and refuse to move. I urged her to move, I pointed at the car and said we were in the way. She started to walk toward the car. By this time Kiara and Sarah caught up and passed us. Eventually we crossed the road. She’s never done that before. You never know what to expect with Summer.

Then it was off in the car to drop Summer at the respite house for the weekend stay.  Sarah put the radio on and changed stations at Kiara’s request. Then turned up her favourite songs really loud. She sang loudly and bopped in her seat. Summer kept drawing on her paper and even didn’t complain about the music. We were all happy.

Then we got to the respite house. Summer didn’t want to go. We went in, Summer protesting. As usual, Summer stayed in the corridor. She wouldn’t come in. I tried to bait her with Kiara and then Sarah. In the end all three of us urged her in. We played together in the sensory room for about 5 minutes together. We had fun. But then we had to leave and it was heartbreaking. The staff distracted Summer with a treat and we escaped through the playground. I hate that, but otherwise she comes out the door and won’t leave the corridor. I wish we didn’t have to bring her here. It’s a great place and they care for her beautifully. But it’s not home. And she wants to be home. But we can’t cope with her home all day. I wish it was different.

We drove home, the three of us. Kiara wanted the radio again, but Sarah didn’t want music anymore. Nor me. I asked Sarah if she was sad about leaving Summer. She said yes. I think Sarah and I needed to process leaving Summer.

After lunch I took Josiah clothes shopping. He came out looking mighty fine. He’s ditching shorts and t-shirt and crocs for some style! His decision. Such handsomeness!

Kris made pizza for dinner. Yum. After dinner we sat in front of the fire and I read a chapter of Nanny Piggins. Lots of laughs, especially from me, Kiara and Josiah. Micah got annoyed because we laughed so hard and he didn’t know what it was about.

We ended the night watching the movie ‘Wonder’ for the second time this year. The last time we loved it, but there were a lot of interruptions as Summer had been home. This time we were going to see it properly. We LOVED it. Brilliant, brilliant movie! When the dog in the movie died, Sarah must have been clued into the subtle cues, as she went over to Rupert and started hugging and patting him. And Rupert wasn’t the only dog watching the movie. Micah had a few other friends as well.

I had a happy day overall. It was especially wonderful to have a positive morning with Summer, which included some of her siblings. If we can do this more often, then maybe we can have her home more.

 

Four Glimpses of Possible

God gives me glimpses of things. Of what is possible. Of what it would feel like to be transformed by him in some specific way…

  1. How it feels to have absolute peace in my gut and how this dissolves stress in those around me
  2. How it feels to react with powerful love instead of anxiety in stressful situations
  3. How it feels to have an absence of pride
  4. How it feels to have body and mind vitality, through eating the right diet for me

These glimpses have been momentary, but profound. Tastes of what is possible. So now I’m wrecked for anything less. How can you be satisfied with the ordinary when you’ve experienced freedom in a certain area?

I’ve heard countless sermons about having peace, of having love, of having humility and of eating right. But nothing has motivated me like the experience of feeling the momentary freedom of what it is actually like to live in this zone. Honestly it became real, incredible, beyond my ordinary dreams of what is possible. They say Jesus is the best. Haha he actually is. And way better than you think.

So what do the ravings of this Jesus loony amount to? How did the glimpses happen? What did they feel like? OK one at a time…

  1. Peace in my gut

With five kids, two with special needs, the stress was extreme and had impacted my body to breakdown point. I lost my energy, like someone pulled the plug. My husband stopped work to take care of the kids while I tried to recover. After six weeks he couldn’t cope so we reached out for a DHHS package for carer support. Six months later we were operating with carers in the home 15 hours per week. My husband was back at work. But the stress didn’t disappear. And I was in a weakened state to handle it.

It got to the point, where wise advise from a close family member was to put Summer (our middle daughter with moderate intellectual disability and autism) in a home for 6-12 months so we could recover.

I was desperate. A dear saint urged me to rest in Jesus.

So I determined to try.

I sat in my lounge chair. I was too tired to pray. I just shut my eyes and sank down deep into a posture of rest. But different from normal. I imagined myself resting in Jesus. And then I remember that Jesus has no weights for me, but wants to unburden me. Then I relax deeper, with relief that I didn’t have to strive. Then I start to laugh and cry and laugh and cry. It just kept bubbling out. My friends call it craughing.

I did this on and off for three days. I would feel myself getting filled with feelings of relief, and of spiritual living water going inside my gut. Hard to imagine I know. It wasn’t long periods of time. I would get distracted, then concentrate again and do the inner posture of resting in Jesus. Trying to do this did nothing. It was when I knew Jesus was my rest, that the faith switch went on, and then the craughing would start. So good!!!

After three days, I felt peace in my gut. It felt wonderful. I can’t describe what a relief that feeling was. All I remember is always feeling uptight in my middle. But I couldn’t find any uptight feeling, even though I was looking hard for it. Just peace. And this feeling of living water.

So then the kids came home and I braced myself. No help from carers or hubby that night. How would I cope! Well the kids came in all manic, bubbling over through the door. They came near me and I watched their energy dissolve. They became settled and at peace without me saying a word. I’ll never forget that. I’ve read about that. But I actually experienced it.

That’s what I need every day. God give me that glimpse back. God help me build that as consistent reality.

  1. Love overflowing without any striving

Another day, I’d had a full-on hour managing Summer in the context of a car trip with all five kids, after an outing in the city where Summer refused to go back to the car. Then I got home and the three youngest ones were full-on. I felt the stress and anxiety peaking. This battle started raging inside me. I was at ‘too much’ point. My mind was telling me to go upstairs and hide and tell my husband I’d had enough. But something in my spirit was battling this. I felt it. I stayed put, feeling and watching the inner battle from outside myself. My inner spirit was wanting to overcome. It was wanting to rise above the status quo of stress overload. This almighty groan emerged from deep within me, shocking me and my kids. And I burst forward to the kids with arms outstretched and blurted out ‘I love you Summer’. And then I poured love out all over the three kids. I felt filled with immense joy and love. I was overflowing, without stress or anxiety. The situation was transformed. I was transformed. I didn’t have to rest and recuperate from stress. I was energised and inspired.

I need and want this all the time. The status quo is so ordinary. This was extraordinary.

  1. Absence of pride

When living in Sydney I had this moment. Totally unplanned. I felt the absence of pride. I know that sounds weird. But it was very distinct. I had an immense clarity of mind and uncluttered panoramic vision. I could see far and wide in my spirit, without cloudedness or confusion. I realised in this moment that this was the space I needed to live in, in order to make wise decisions in ministry and if I ever wanted to lead effectively in any sphere. I willed the clarity to stay. But after maybe 5-10 seconds it left and I went back to my immersion in my own personal level of pride. Which as a continual presence, becomes unnoticed and normal. But now I noticed it. This robber. This thief. This pride! How I despised it and wanted it gone. It clouded my vision. I couldn’t see very far ahead. The difference was immense. Like trying to walk in a fog.

This experience prompted me to pray on three occasions in my life for God to do whatever it would take to get rid of pride. Within a day or week after praying each of these prayers, I subsequently experienced the three most humbling, difficult and painful events/seasons of my life. One day I may share these stories. One of these was the adrenal crash I have referred to. This was the least painful.

Before praying the second time, I experienced the glimpse of the absence of pride again. It was in our ensuite in Dingley Village. In that moment I recalled the glimpse I had experienced years earlier and savoured the moment, wishing it would stay forever. That gave me the courage and motivation to pray the second time for God to get rid of any remaining pride. I wanted to live in that space. I don’t want to live in any other.

I have learned much, but I am still on the path.

  1. Body and mind vitality

God led me on a fast. I hate fasting. I get really grumpy when I don’t eat. And I can’t afford to be a grumpy mum. The demands are strenuous enough without adding that in the mix. So I decided I would fast everything except fruit and vegetables.

After one week, I felt amazing. I guess it was like a de-tox. But I was starving. I did a little complaint to the Holy Spirit about this and I felt him say to add rice. I was happy. For the next two weeks I had rice and fruit and vegetables. I felt full and I felt great. Then in the last week unexpectedly I felt him say to add meat, then a few days later to add eggs, then on the last day to add cheese.

My body felt clean on the inside. It felt refreshed. My mind felt clear and uncluttered. I felt alive in my body.

The day after I finished the fast, I concluded that God never let me eat flour or sugar.

I decided I would like to continue eating like this.

I failed and went back to my old ways. But I never forgot how good I felt and have wanted it ever since.

Last year I gave up flour (mostly) and made it a lifestyle. It’s now normal for me. Then in November I watched ‘That Sugar Film’ and that gave me the impetus to drop sugar. I went cold turkey and I don’t want to go back. I love being sugar free. My emotions are lighter. No depressed feelings. My head is less clouded. No cravings.

Big wins dropping flour and sugar. But I still need to have a higher proportion of vegetables, to experience the reality of the earlier fast where God taught me how to eat. Isn’t he smart. He knows my body better than any doctor. And he knows yours too. We are all different.

So I’m not fully there yet, but I’m on the path. I’m seeing change. I’m building one step at a time. And the glimpse is becoming a reality.

Conclusion

So just recently I had this awesome thought. God has given me glimpses of magnificence spiritual transformations – peace, love and absence of pride. Maybe, just maybe, these also can become my everyday reality, rather than one-off tantalising experiences.

If I follow the logic of the food experience, then it is just a matter of taking small steps every day, in order to build a lifestyle, which then becomes my everyday experience. I can do this!

So I’m starting with the peace in the gut. I’m practicing this every day – 20 minutes X 3. This is doable. I already have 20 X 3 as my normal rest routine, which I have been practicing for years. Now I just add Jesus to the rest in this same routine.

I’m going to win. I’m going to overcome. God has shown me how. And I just have to decide to do it – and I have – and then do the hard yards – and I am.

I’m going to be the peace queen. Not a pride statement here haha. Just a joy statement. Hehehehehehe. The peace queen!

And then wait until I become the love lady.

And then – wow – the absence of pride. I don’t know to walk that journey yet. I’m praying God builds humility more and more. He can do it. He can. He can. He doesn’t give glimpses for nothing.

It’s awesome walking with Jesus. He knows the path. And his path is brilliant and full of surprises that are out of this world. He gives glimpses to keep us going.

What glimpses does he have for you? What is he wanting to build in you? What has he done already?

Love to all

Summer’s Doggy Heaven

There is not a day that goes past that I don’t feel a sigh of relief, looking at the epitome of tolerance – Rupert – Summer’s doggy best friend.

This dog is a gem I tell you. Everyday he gets head-locked by Summer and held at ransom for long periods of time. He just takes it. He lies still while Summer rubs her face in his fur, strokes his ears, pulls his tail, squeezes his middle, leans all over him. He gets a lot of loving. And if Rupert tries to leave, Summer grabs his collar or his leg and bosses him back into position. She is strong. Rupert is very strong too. But Summer has managed to work out how to keep him.

That alone earns Rupert his keep every single day. And it happens multiple times every day. It’s very comforting for me as a mum to see this. Sometimes Summer just needs some time to re-focus, re-energise and have space from others. Rupert is a safe place for her. He is a walking, breathing therapy tool. In those moments where she is with Rupert, she is not melting down from overload, she is not getting agitated by noise or movement. She is in a happy place.

We often deliberately bring Rupert for car trips, as she loves to hug him. This makes the car trip peaceful, except for occasional demands for me to join in the hug fest while driving. It can also get problematic if Sarah is in the car, and Summer pulls Rupert to herself. Sarah knows how to express her mind and boy does she do that!

Rupert is an awesome blessing to the whole family. Stress relief and fun for everyone. Josiah loves having him sleep in his room overnight. (Summer can’t have him, as we can’t trust her unsupervised with him for that length of time. She might pull his ears and hurt him). Micah can’t decide whether he loves me more or Rupert more. He thinks he might love Rupert more. Rupert is always coming up to me and laying his head on my feet or jumping on the bed to lie next to me. (Yes we gave up the ideal of no dogs on couches or beds, after the trainer told us it was good for autistic kids to have the dog next to them on the couch etc. So I get an extra cleaning job now – vacuuming the couch of all the dog hairs!!!) Sarah can spend ages with Rupert, even sitting on him while on the iPad. Kiara and Kristin love him too.

Rupert is a great excuse to get out of the house and in the fresh air and sunshine, as he lives to chase the ball. I take him for a ball throw in the mornings. And Josiah often takes him out too.

Rupert brings down the anxiety in the home just by his presence. We noticed this considerably in the month after we first got him. The first six months was a huge blessing but Rupert was also testing boundaries. Now he has settled down beautifully and I think he has accepted that we are his forever family. He likes us, especially me for some reason. Many of us when tired or upset have been known to give Rupert a hug and cry on his doggy shoulder.

He also seems to be quite protective of Summer. If Kristin is fooling around loudly and actively with the girls, Rupert starts barking at him. Same if I give the girls a smack. He doesn’t like it and barks. I feel chastised!

I feel grateful every day for him. He can’t eliminate all our problems. But he has provided massive assistance. More so than any other strategy.

I’m reminded again of all the many individuals and groups who helped make Rupert happen for our family, especially my dad and Heatherton Christian College.

I would like to add too, that Rupert is extra special because not only has he been specially trained as a companion dog by ‘Dogs For Kids With Disabilities’, but he is the only dog that was able to be successfully matched with Rupert in the three or four years that we were waiting. All the other dogs that we met along the journey were also very high quality. And many of them from special breeders, that breed particularly to achieve the perfect characteristics for assisting disabled people. But Rupert was the right match for Summer.

We are SO blessed!

Your Sixth Sense (Better Than Sex)

You have an amazing hidden ability. You might not be aware of this yet, but you have a sixth sense. What is it? Are you using it? Have you thought about its possibilities?

Your sixth sense is the ability to sense the atmosphere…

on TWO levels…

the emotional atmosphere and the spiritual atmosphere (better than sex, more later).

Everybody has this ability. But not everybody pays attention to it. And it is attention that hones your ability.

The Emotional Atmosphere

Have you ever walked into a room and immediately noticed tension? You don’t know what happened, but you know something is really off! Perhaps there was a heated argument. Perhaps the people in the room are just seething with unspoken anger. It feels very different to walking into a room where people are happy or excited!

Part of our mood awareness comes from visual cues, such as the expression on people’s faces and their body posture. But our perception goes beyond this. I put it to you, that even with a blindfold on, many of you would still sense mood, if the emotions were pronounced enough.

Some people are better atmosphere perceivers than others. That comes down to natural ability and how much you have developed the skill. That’s like anything in life. Some people are naturally very gifted at music, for example, but everyone can still develop a degree of skill, and hone it with practice.

For some of you, the ability to sense the emotional atmosphere may be virtually non-existent. Perhaps you grew up in a household where this wasn’t valued or acknowledged, so you never paid attention to what you were sensing. Perhaps you disregard your perceptions, as they are subjective, they cannot be measured scientifically like vision or hearing, etc.

I agree that our sixth sense is subjective. Accuracy in diagnosing emotional mood isn’t always precise – but with practice and skill, reliability can increase. This sense shouldn’t be discounted – it should be cultivated and respectfully judged. It has enormous usefulness in both one-on-one interactions and groups environments, on a personal level, work level and societal level.

So far, what I have described is a common experience for many. But there is another level of atmosphere sensing that is completely different. It is SPIRITUAL. The difference is not understood until it is experienced, like trying to imagine colour, when you see in black and white.

Let me share my experience…

Sensing Spiritual Atmosphere

Our church has a lively worship time in the service. A band and songs, like those sung by Hillsong. This creates a certain atmosphere which is awesome. But this is NOT what I’m talking about. I can sing along, I can dance, I can lift my hands and enjoy the atmosphere. But again, this is NOT what I’m talking about.

Sometimes during the worship time, all of a sudden, sometimes unexpectedly, I sense the presence of God. THIS is what I’m talking about!!!

How do I describe this?

It’s weighty.

It’s like a charged atmosphere, except that it contains LIFE.

And this is a big difference. Let me repeat – it has LIFE. This life is the presence of a being… a person… of God himself.

In this moment I can experience a lot of emotions – awe, a sense of being washed over, of being cleansed, an awareness of the goodness and purity of God. I don’t want to be anywhere else. I never want the moment to end. I cling to God in this moment. I revel in who he is. I partake of him. Sometimes I erupt in laughter, sometimes in crying, sometimes a mixture of both. I feel like rivers of living water are flowing in my being. This is glorious peoples. Nothing can compare to this.

And oh to worship him. To lift him up. With every part of my being in complete agreement. There is a rightness. A peace. An inner YES that screams out and becomes louder than any negativity or cloud. It is my place of rest. I’ve found my tribe. I’ve found my home.

And other people who’ve experienced God say the same thing. I hear their description and I go YEP – you’ve met the Father! You’ve met Jesus.

And I don’t just experience this at church. When I connect with God at home… anywhere… the more time I spend with him, the more I experience his presence. It doesn’t happen all the time, but over the years, as I have been pursuing God more, this has been increasing.

Please excuse me for this next comparison, but I want to emphasise how awesome experiencing God is. It is better than sex. It is better than great sex. It is better than ultimate fulfilment sex. Sex brings physical pleasure and the ecstasy of emotionally blurring with another, going to a heightened state of being. It is amazing. But being in the presence of God is more amazing and more fulfilling.

Experiencing a taste of who God is and his life, is what our whole being longs for. We understand our sex drive and the fulfilment this can bring, particularly when in a healthy relationship. But many of us don’t understand our drive for God. He is our ultimate source of fulfilment. Every core of our being becomes alive and energised in an encounter with him. He is transforming!

I can’t emphasise enough how knowing God is not just intellectual or emotional. It is also deeply spiritual. And this spiritual experience is tangible and available for everyone!

God wants to reveal himself to us. Why don’t you ask him to. He’s waiting… with love and forgiveness like an ocean.

“You will seek me and find me when you seek me with all your heart” (Jeremiah 29:13).

Hillsong: Let Hope Rise

hillsong-let-hope-riseJust got home from watching this movie. I LOVED IT! Way more than I thought I would. My husband and I were part of Hillsong Church for five years and had our first two kids there. So I wanted to see the movie and maybe feel a bit nostalgic and maybe enjoy seeing God glorified in a secular movie theatre. But it was way more than that. OK the movie was very well done. I expected that from Hollywood. It was surprisingly positive in its presentation of Hillsong and the United band. It was surprisingly generous in the display of the hope side of the Christian message. Normally there is a lot of cynicism about Hillsong out in the world and parts of the church. But this wasn’t there. The behind the scenes look in to the band members personal lives was fantastic. It portrayed them as real people, not celebrities. I loved that it was clearly not about their egos, but about their desire to promote Jesus and allow people to connect with him. There were so many awesome moments in the movie – seeing people all around the world, singing ‘Saviour, He can move the mountains’. That was so well done – WOW was all I could say!! And then it just kept going on – I kept having all these moments with God – laughing and crying in his presence. Gobsmacked at what God had done with these ordinary people and how awesome he is. I just LOVED it! The movie is an opportunity for people all around the world to have a glimpse at who God is and hopefully be moved to want to connect with him and possibly a local church. And if that happens, they can discover the God who can set them free from all their inner turmoil, all the stuff we call sin that wraps people in chains. They can be forgiven, set free and live a new life with Christ to follow. I just LOVED that movie. Thanks Hillsong for all you’re doing and have done. Such an outstanding, extraordinary example. You lift our horizons. Thanks for your humility in this movie and for stating the truth – that without God it would all be nothing.

Outings With Summer – Note To Self

summer-shopping-bear-2

  1. Have fun. Every aberration to the social norm is an exciting and stimulating experience.
  2. When shopping, keep the ‘to do’ list short.
  3. Make the primary goal joy, not ticking boxes.
  4. Develop an appreciation for looking at random details for a prolonged time, e.g. the colour of a sign.
  5. Look ahead for ride on toys in shopping centres. Turn around and walk in the opposite direction, unless time is no issue. Then bring a book!!
  6. Look ahead for dogs and babies. Steer Summer away from visual access, unless time is no issue and the other person is relaxed and friendly.
  7. Appreciate the kindness of strangers.
  8. Wear loose clothing around the waist so that people don’t have to see my tummy jiggling when I am in stitches at Summer’s delightful public interactions.
  9. Avoid going out if there’s time pressure.
  10. Be very patient.
  11. DO NOT let Summer see others eating food!!
  12. Bring BETTER food!
  13. Before going to McDonalds, call them and ask them to put a barrier in front of the food preparation area.
  14. Before going to the bank, call them and ask them to put a barrier between public access and private access areas.
  15. Maybe bank online.
  16. Before going to the chemist, call them and ask them to put a barrier in front of the staff only area.
  17. Wear good running shoes.
  18. Keep lollies on hand. They reduce stress. Bribery is the key word here folks!
  19. Don’t make eye contact with other people if Summer becomes agitated.
  20. Believe that everyone is understanding.
  21. Smile lots, apologise quickly if needed, leave.
  22. When outside, look ahead for puddles. Block Summer’s view of the puddle.
  23. Bring spare shoes and socks.
  24. Remind yourself it’s good for Summer to experience the community and it’s good for the community to experience Summer.
  25. Watch Summer and learn from her. Love, innocence, joy, wonder, enthusiasm, excitement.

Refusing Fear

angry cat

I’ve got an attitude towards fear. I’m cross with it.

Fear robs people of joy and robs people of peace. That’s very, very destructive. What a miserable party pooper!

I’ve observed something about fear. It starts with something that is true or partially true and it builds on it. This gets the person in agreement. And from this point it can build a nice little castle in the person’s heart. It gets bigger and bigger, bit by bit, slowly by slowly. Until eventually the fear can be quite irrational and overpowering.

I got cross with this fear. It’s not from God. It’s from his archenemy the devil, who actually exists and who wants to rob our lives of everything precious and wonderful. He twists truth and seeks our agreement.

ENOUGH!!! I’ve decided to stop agreeing with the fear. Hahahaha. This has been wonderful and part of my liberating process. So now what happens is… I see a fear… and then I think, but but but… it’s possible… this could happen… so I’m worried about it. And then I see – I’M GETTING ROBBED OF MY FREEDOM!!!!

Cos I realised something really powerful. Hahahaha. I DON’T HAVE TO AGREE with that fear ANYMORE!!! So I get an attitude. I get stubborn. I say NOOOOOOO!

Sometimes a conversation may go on in my head. I refuse the fear. Then it might pester me. At this point it actually gets fun, because I get like a little kid who is digging their heals in. “NUP. NUP. NUP. I don’t care what ‘truth’ you are telling me fear. You are not from God. And you are robbing me. So I don’t want A BAR OF IT.”

When I persist in my disagreement, the fear weakens and eventually goes away. And then I am FREE!

And the next time fear comes, I am stronger to face it. My fear refusal muscle is growing.

No Guilt

Jesus baggageIt’s a lovely feeling – the absence of guilt. Instead there’s freedom. And therefore joy. And relief.

Guilt is a horrible plague. It sucks the life away and keeps one in misery land. You can never achieve perfection and the guilt just rubs it in and rubs it in endlessly.

The guilty thoughts are based on truth so they are easy to embrace and believe. I should be a better parent, a better wife, a better friend, a better citizen. And so you should! Hahaha what a miserable answer! But you won’t be able to live up to your ideals no matter how hard you try.

Sometimes a perfect day appears. I’ve had them. I’m the perfect mother, responding with grace, wisdom, love, joy. Soothing everyone’s pain and dissolving arguments, cooking a great meal, perfecting household cleanliness and even managing sex at 11pm at night. So the standard is set and this must be maintained.

But it’s IMPOSSIBLE!

The next day you’re tired. You’re grumpy. You start off patient, but one of the kids tips you over too far and you yell. Then you feel guilty and so you act a bit kinder. But then later you feel guilty because you were too soft. You remember all the parenting rules you’re breaking and you feel guilty for that too.

I have a secret to tell. I’ve had God helping me he he he. And he’s an expert at taking away guilt. He’s been rather intent recently on bringing me to a place of freedom. It’s a really nice place to be. He gently challenges my ideals and teaches me to trust him and let stuff go. One thing at a time. He is pretty patient and very loving.

When I trust him to grow me I don’t have to feel guilty about how I am or am not being. I just focus on trusting him to bring me to where I need to be. He’s responsible. I just work with him and understand he has immense patience with me. I trust in his patience and in his love.

When I trust him to grow my kids, the pressure is off me. I’m not the ‘be all and end all’. Lots of people contribute to my kids’ development. And I see God’s hand directing things in their lives. Without this guilt, I’m a better and more loving mum. Still not perfect, but free. And I’m happy for my kids to have a free mum.

When I trust him to take care of my husband, I’m free from a lot of stress. Hahaha. That sounds really bad. But my interference never amounts to good anyway. My husband is way too free spirited and independent and very resistant of my attempts to bring him to my standards of perfection. And a good thing too. Hey, sounds like I’m talking from experience haha. Trusting God helps a lot.

When I trust him to direct me, I don’t have to feel guilty about what I am or am not doing. I’m free. And I know he directs and prompts me, so I can relax knowing I can trust him to steer the ship. My heart is set on him and walking in his ways. And I pray that he will keep me from falling. And I trust him and I don’t trust myself.

Perfect Scripture about guilt is this one: “Therefore there is no condemnation for those who are in Christ Jesus” (Romans 8:1). All our guilt has been wiped away. It got put on Jesus. That’s why he died. He did mighty thing in that moment so we could be free. When I put my trust in him, the guilt dissolves. He’s big enough to take it all. He’s big enough to handle my trust. So I am free.