Category Archives: Emotions

My Current Reality of Seizure Watching

Autism, Exhaustion, God, Joy, Microcephaly, Parenting, Peace, Special Needs, Spiritual, Stress, , , ,

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.

Death then Life

Freedom, God, Inspiration, Peace, Spiritual, , , ,

A Liberating Pattern

Photo by Jen Theodore on Unsplash

I am churning with this thought this week…

Sometimes you have to let things die to live…

But I’m not thinking about things like relationships.

I’m thinking about character.

Take for instance, complaining.

To complain, is to connect with others who also complain. There is camaraderie, there is mutual approval. You are at the same level. But what if you decide to stop complaining?

It’s hard. It’s very hard.

You have to lose something.

You have to lose the ability to connect and seem relevant in certain social situations. You have to lose the right to express your frustrations and feel important and righteous.

It’s a death. And it’s unpleasant.

I know. Cos I went through this.

It’s awful to hold complaining thoughts in your head and not allow them to see the light of day. To not allow their expression through your lips. The pressure builds and builds. And it takes will and determination to stop it. And it feels like death.

But on the other side of death is something surprising.

There is more freedom. More peace. More life.

To not complain, means to also let go of the thoughts of complaining. Because you don’t want that pressure building up in your head, so it’s best to just let it go.

So then you think differently. And you find yourself less burdened, happier and without the clutter that was there. It’s new and it’s a revelation.

It’s not with perfection. None of us attain that this side of eternity.

But it’s a breakthrough.

And the victory is inspiring.

What’s next? What else do I need to die to? What other opportunities for life are on the other side of a decision?

And the courage to face the death of luxury character flaws increases. And the hope of discovery becomes rejuvenating.

Such death becomes less fearsome, because one knows what is on the other side. So one can face bravely the awfulness of letting go. And trust what happens next.

…

I think of the seed that must be buried in the ground. From there it is able to shoot out new life and grow.

…

I think of Jesus, the son of God. Who willingly faced death on a cross, for the joy of obtaining salvation for the world. Death first, then life.

He even said, you have to lose your life to find it. And he wasn’t talking physical death. But death of your own concept of self. Laying down your own life, for the ways of God. The ways of God that don’t make sense to our worldly thinking. But which when activated bring life out of death.

A living, breathing reality. A reality marked by true freedom.

Perseverance

Bible, Grateful, Inspiration, Joy, Mental health, Spiritual

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.

The Language of God

Emotions, Freedom of Speech, God, Grateful, Inspiration, Spiritual, , , ,

My Unusual Experience

Photo by Dylann Hendricks | 딜란 on Unsplash

So often I find myself trying to communicate, by searching for the right word.

I know what I want to say. But it is a knowing without words.

Language is just my tool to convey to another person the meaning that is in my heart.

And the language is inadequate.

I’ve heard peoples’ descriptions of heavens. And they all lament about the same thing. That their words don’t do justice to the glory that they have seen, the colours, the beauty, the incredible atmosphere.

This is true of so many things here on earth. How do you convey the depth of feeling that stirs up in your soul. How do you represent it digitally or on paper. It feels like a farce in some ways. A two-dimension version of something that is beyond even 3-D.

God gave me a language many years ago, when I was 16 years old. I was praying ‘in tongues’ in my bedroom — a Pentecostal practice that I had stepped into, while growing up in my ministry parents’ home. But this time was different — I started praying ‘in tongues’ with variations, inflections and intonation that sounded exactly like I was speaking a real language, instead of the usual monotonous drone that I used to utter.

Of course I had no idea in my mind what I was actually saying, but I’ll never forget how it was accompanied with a power and authority that was beyond my age and maturity. It was shocking to me in it’s boldness and difference to anything I had ever experienced. I didn’t want it to stop.

I prayed like this for quite some time. Knowing that it was accomplishing something significant, but having no idea in my human mind of the actual content. But the lack of awareness didn’t matter. My spirit was electrified. It felt like I was operating exactly how I was meant to, with God in me. The sense of rightness was without apology.

I am so grateful for this experience, that confirmed to me personally the validity of this God given gift. Without it I would have wondered at the monotony and powerlessness of so many ‘speaking in tongues’ prayers that I had heard over the years.

I often contemplate the brilliance of God in coming up with this ‘tongues’ strategy — a way for human beings to bypass the constraints of human language — and to communicate to the heart of God with words of heavenly origin. A fruit of the empowerment of his spirit.

This strategy is beyond my comprehension really. But I don’t need to understand everything about God. He wouldn’t be God if I could. I just trust and dive in with him.

Something else about God on this theme that I find fascinating… He often speaks to me in my heart. And I know what he has communicated. But I don’t have the words for it. I have to try to put it in words if I want to tell someone else. But my heart knows it.

I suspect and I have heard it will be like this in heaven. Language without words — just knowledge of what is in others’ hearts. It will be so much fuller and richer. And thankfully in that place there will be nothing we would need to hide.

Child-Like Trust

Anxiety, Emotions, Freedom, God, Inspiration, Joy, Laughing, Mental health, Parenting, Peace, Spiritual, , , ,

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

Bible, Emotions, Exhaustion, Freedom, God, Inspiration, Joy, Mental health, Peace, Spiritual, Stress, , , ,
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

Unlimited

Excited, Freedom, God, Inspiration, Spiritual, , , ,

The Fruit of God: Endless and Amazing Discovery

Photo by frank mckenna on Unsplash

God is unlimited.

What is the fruit of that?

A heck of a lot.

Think about it.

I remembered a song about God — “Your faithfulness reaches to the skies”. And I thought, literally that is not true. It might be nice poetic licence. But the reality is that his faithfulness is never ending. It is without limit.

People compare things about God to the sand on the seashore. Because you couldn’t even begin to count every grain of sand. An impossible task for us as human beings. But even the sand analogy is no good. Because sand is limited. There comes a point when there is no more sand left. But God is not limited.

Or what about the water in the ocean? How could we even begin to explore every depth? But yet again the analogy falls short — there is an end to the water!

I thought about the joy and pleasure of revelation; the acquiring of beautiful knowledge. And subsequently the human fulfilment that is found in growth as a person. This too, I realised, is without limit. We will never in our lifetime run out of things to learn about, or ways to grow as a person.

But it goes further… after physical death, if you believe as I do that our spirit continues on, then the journey continues. And in this journey, there is still the potential for growth, for revelation and the acquiring of knowledge. And this is in the same category of unlimited. Because the creator of the universe and subsequently all that there is to discover is unlimited.

The fruit of God. Endless and amazing discovery!

Diamond

Emotions, Excited, Grateful, Inspiration, Joy, Spiritual, Uncategorized, , ,
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

.

Summer and the Microphone

Autism, Church, Emotions, Freedom, Laughing, Love, Microcephaly, Parenting, Special Needs, Spiritual, , , , ,

This morning was rather eventful at church.

I had been in two minds whether to go. I was rostered on to sing in the band, but my energy had taken a dive this week and I was too exhausted to get there at 8am for rehearsal and wasn’t even sure whether I would have the energy for the whole church service. I was really bummed. I REALLY love singing. Kris was at Bunnings for a fundraiser BBQ with Josiah. And so the backup plan was to send our carer with Kiara, Sarah and Micah, and I would stay home with Summer. But I HATE missing church. If I couldn’t be there to sing, at least I would be there to WORSHIP. So the plan moved to coming for the first half hour, then leaving.

It got better. One of the young adults was asked to help in the special needs room with Summer and Sarah, to help our carer. So I didn’t have to leave early after all. She did a brilliant job. But as often happens, Summer decided she was ready to leave, before anyone else was ready for her to leave. It was 11:30am, after being in the room 90 minutes, so she did pretty well. But when Summer wants to leave, woe to whoever wants to stop her! The carer rapidly sent me a text to warn me. I didn’t see it until later, as we were all standing for the final song and altar call.

As I was worshipping with my eyes shut, I heard a familiar sound from far away, ‘mummy’. I’m well trained to respond quickly, and I must admit, with panic. What was happening? Where was she? Uh-oh. After a quick scan, I discovered her at the front grabbing the shoulder of a guy who was being prayed for. I think she thought it was Kris, as he is a similar size and similar hair. I was quickly out of my seat charging to the front, whilst simultaneously chiding myself for not being more discreet.

By this point Summer had moved on, wandered across on the floor in front of the stage, unsure where to go. I caught her attention and thought that would be it. Mummy found!

But no! Microphone found!

She spotted it on the front row, where the preacher had left it, in order to pray for those at the front. With speed, and before I could do anything, she moved to the microphone and with glee picked it up. Horror and humour set in. My face doesn’t hide emotion very well. I could only imagine the entertainment my demeanour would have given anyone looking on. I need discretion practice.

Summer wandered back to the middle of the front area with the microphone, holding it up to her mouth, then checking it, holding it back to her mouth. Then she studied it carefully looking for the switch. Uh-oh. I was in a bind. What do I do? Knowing what was coming next, I looked back at the sound guys. I don’t think they knew. I wanted to run back there and urge them to turn the sound off, but that would waste precious time and they might not know which microphone to switch off. I could only hope someone else would take the baton and do the right thing.

My brother Matthew to the rescue. Standing in the aisle, with purpose, I saw his position and gave him the cut throat sign. He headed straight to the back. In the meantime Summer had found the magic switch. Uh-oh. Did it have to happen right now? While everyone was praying? In such a holy and focused moment?

The switch was on. And she was live. I lunged and grabbed for the microphone. It was a dumb move. It was never going to end well. Of course she resisted and screamed loudly, right next to some poor soul being prayed for. I quickly let go and backed off to give her space. Thankfully the sound guys had done their thing and she was muted, after only 1 second of sound. She focused on checking that switch again.

I shuffled back to the front seat and smiled helplessly and knowingly at Darryl, who knew all to well. He and his family had spent many weekends hosting Summer at their house to give us a break. If anyone knew, he did.

I forgot myself and starting worshipping. It’s my default. I can’t help it. The music’s going. I can’t help it. Then I remembered myself and opened my eyes to check on Summer. The meeting leader, Chris was attempting to do the right thing and get that microphone back. Summer gave a snap, ‘No’ and then snapped back to her worship zone.

What can I say? This crazy mix. Summer defiant one moment, worshipping the next. Defiant. Worshipping. Defiant. Worshipping.

It kind of sums up what it’s like living with Summer.

Kris heard all about it. Four of the guys from church turned up at Bunnings. Kris was sharing with me later. He was crying. He was so touched at the love these guys had for Summer. Their pride in her. Their lack of embarrassment. I shared about the women’s response. Their humour, their love, their support. We both cried. We have a great church.

Summer took about 25 minutes to give the microphone back.

It talked to Niall, the sound guy. We have a plan. I’m buying Summer her own microphone. I’ll keep it in my handbag for next time. Hopefully for an easier switch. The photo, is the one I’ve ordered for her 🙂

Scored

Emotions, Grateful, Inspiration, Joy, Love, Marriage, Parenting, Spiritual, , , , , ,

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

Autism, Emotions, God, Joy, Mental health, Microcephaly, Parenting, Special Needs, Spiritual, Stress, , , ,

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

Autism, Emotions, Excited, Joy, Microcephaly, Special Needs, , , ,

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.