Category Archives: Microcephaly

Love, Freedom, Truth

Autism, Bible, Emotions, Freedom, God, Homosexuality, Inspiration, Joy, Love, Marriage, Mental health, Microcephaly, Parenting, Social Issues, Special Needs, Spiritual, Stress, , , , , , , ,

 

Musings mum and Summer outsideThere’s so much wrestling going on in my mind. Love, freedom, truth. Over and over.

God is love. His love is SO good. It’s beyond our human experience. The Scripture oozes with examples and direct conveyances of his love. “How wide and long and high and deep is the love of Christ” (Ephesians 3:18); “this love that surpasses knowledge” (Ephesians 3:19); “this is how we know what love is, Jesus Christ laid down his life for us (1 John 3:16). Etc, etc. Just google and you will find a GOLD MINE.

It hurts to know even a smidgeon of this love, and to know that so many have ABSOLUTELY no idea of the depth and the richness and the spiritually overwhelming goodness of this. It’s actually upsetting!

And the life giving Scriptures tell us that the world will know who Jesus’ disciples are by their love for one another (John 13:35).

That one upsets me too. Even though God has placed his love in our hearts, we often do a really lousy job of conveying this love. When we are in his presence it is easy. But then we can so easily slip into our old bad habits. We get cross, we get grumpy, we are not loving. SO frustrating!!!

But then we get his love dose. And when this happens, the outcome can be amazing. We can overlook the judgments, the insults, the kids’ bad behaviour, the stress. And love conquers all. It actually does. In moments like these, our soul is deepened in God’s strength. We become mighty overcomers.

I remember when my three youngest children were milling around me in the kitchen. Summer (the one with microcephaly and autism) was agitated, Sarah was whinging. They were all noisy and demanding. I felt pulled, I felt stressed. And it was after a really stressful car trip with all five kids, having to sit next to Summer and manage her behaviour full-time for about 50 minutes. I was really stretched! I felt like I was about to snap, like a war was going on inside me. And then something rose up from deep within me. Something erupted that shocked me. A groan came from my inner being and I unleashed the words, “I LOVE YOU SUMMER!” The kids looked at me shocked. And then I swiftly moved and embraced Summer and poured out love from my heart all over her. It just oozed from every pore of my being. There was such joy and freedom. And I knew this was the place that I wanted to live life every day. I had energy to move forward. I didn’t want to escape anymore. It transformed that moment for me and the kids.

If only we could live in this zone 24/7. How different life would be! I believe God gives tastes of heaven, of his goodness of his love. And then he teaches us how to live like this more and more.

And then I think of truth. God’s truth. Not the twaddle of relativism that we’ve been spoon-fed by our culture over the last few decades. I love God’s truth. It is liberating. God’s ways are the ways of freedom. If only I could shout from the city’s billboards how amazing truth is. Some luscious Scriptures come to mind… “Jesus is the way, the truth and the life” (John 14:6); “then you will know the truth and truth will set you free” (John 8:32).

But truth on its own can often come across so weakly for those who do not agree. There is so much variety of opinion in the world, that to talk about truth from the one who made it, is not received so well. And it can come across as hateful, especially when you quote verses on homosexuality, etc. It makes me sad that what is so precious and so life-giving, can seem so corrupt. And it is not!

I wrestle with how do we present this truth. I see Christians who just tell it like it is, straight as an arrow. And I see Christians who despise this approach and emphasise the need to come from love and no judgment. I look at the Scripture and I see a loving God who is straight down the line with his speech. But he oozes love 24/7 and so when it comes, it comes from a place of love.

One thing I have learnt from being married, is that skill is important to some extent. I can learn relationship skills, I can learn better ways to phrase things so that conflict goes down better. This is hard but can be worthwhile. But what is SO much more effective is when my heart is in the right place. When I ooze God’s love and I’ve been in his presence and my heart is wanting freedom for my husband as well as myself, without condemnation or judgment or unrighteous anger, THEN IT IS COMPLETELY DIFFERENT and it doesn’t matter how I say it, because what is read is far beyond words. Maybe not all of the time. But even if it is not received, I am still free. I am not fuming. I am full of love and joy. And it is certainly a lot easier for the other person to hear.

This seems all wonderfully ideal and there is lots of truth here. But I’m not 24/7 living out Jesus. And so I wrestle, with love, truth and freedom.

One thing I will finish with. When I have spoken hard stuff to people and it’s come from my own sense of timing, it hasn’t worked very well. I’ve not seen good fruit. But when the Holy Spirit has prompted me to speak hard stuff, and even though I’m scared I do it, it’s completely different. It’s been received, not necessarily followed, but seen as love.

At the end of the day, I conclude I trust God and I want him to grow me. And I want him to direct me. Because his way works. And mine doesn’t. And I want to speak his truth with love and power. That I hunger for so much!

My Happy Place

Anxiety, Autism, Emotions, Exhaustion, Freedom, God, Inspiration, Joy, Mental health, Microcephaly, Peace, Special Needs, , , , , , , , ,

Rest chairThe stress and exhaustion got to the point, where wise advice from someone really close, was to put our middle child Summer in a home for six months, so that my husband and I could recover and focus on the other children. Summer has microcephaly, a moderate intellectual disability and autism. Challenging behaviour has been part of the package.

Anxiety medication for our daughter was always a last resort, and so we thought this would be the time to try it. Better than giving her up for six months.

But another dear lady, in a two hour soul emergency phone call, urged me to rest in Jesus. She also had had an adrenal crash one year prior, and had gone deep with Jesus. I caught the vision.

I spent three days with my primary focus as sitting in my super comfy lounge recliner. Resting in Jesus. I knew I had to do this. Even if the medication helped Summer, I was too wrecked to even look after five normal kids, let alone two with special needs. I needed a personal breakthrough.

I sat in my super comfy chair and I didn’t want to get up.

OK I have to do this quick aside… It’s about the chair… In the week prior, I was watching a Facebook page where local people sell stuff, often cheap and occasionally for free. Well there was a 3 seater couch and 2 recliners up for sale. $500 cos it needed to go the next day. Originally bought for $4000. I really wanted it, to replace our uncomfortable stained 3 seater and 2 one seaters, but hey – $500 wasn’t growing on trees in our place. But then the next morning, the guy put ‘free to a good home’, cos he had to empty his place that day as he was moving. Well I was the first person to respond and boy did I write SOLD. My husband picked them up with the guys help that afternoon. And I tell you the whole thing was immaculate and the most comfortable lounge suite I have ever sat on in my life!

I can’t tell you how excited and pleased and thrilled and totally hap-hap-happy I was! Joy spilling all over. I sat in that recliner chair and I did NOT want to get up!

So… fast forward to resting in Jesus. God set me up to want to stay in that chair. So stay I did. And I sat there and thought about praying. But then I thought – no – I have to rest. Praying is work. Good work, but that’s not my job at the moment. And I didn’t want to just rest. I’ve done that a lot in the past 11 months trying to recover from the adrenal crash. I needed to rest in Jesus. How do I do that?

So I laid back in the recliner and with a sigh of relief, rested my inner being, as if I was just leaning right into Jesus. God must have given me grace to do this, because as I took on an inner posture of relief and relaxing into Jesus, I started to laugh, which made me cry. And then I laughed and cried out loud for ages. Friends of mine call this craughing! Love that word! When I stopped laughing, I would redo the relaxing in Jesus posture and it would set me off again.

When I thought to pray, it wasn’t restful, so then I would just relax into Jesus again. He became my place of rest, my place of safety and no striving and absolute freedom. No judgment, no stress, no weights. I can’t help crying writing this. It was absolutely wonderful. And my gut started to feel peaceful and rested. I don’t remember ever feeling my gut being rested. It always felt uptight. I would tell the psychologist that I’ve been seeing, since my crash last year, that I could feel constant uptightness in my gut. It wasn’t relaxing, but just a present reality that I didn’t know how to get rid of.

So then I felt immensely grateful and relieved to have this new feeling of rest deep within my gut. The best way to describe it was like having rivers of living water flowing within me. I laughed, because this is in the Bible (John 7:38). But I’d never experienced it quite like this.

Then on the third day of resting in Jesus, I hadn’t started Summer on the medication yet and I didn’t have carers helping me that afternoon or my husband. So I was bracing myself for having the five kids on my own, after a very tough prior weekend with Summer. I remember the kids all coming in the door after school and milling around. I was expecting them to bubble manically around me, but as soon as they came near, it was like they bounced into my peace and dissolved. They were calm. I watched their energy diffuse without me saying a word. The whole afternoon and evening was so much easier. I was OK. I was peaceful. I can’t tell you how good that was.

The next day I didn’t want to start Summer on the medication cos I wanted to see if this new inner peace impact could continue. My friend cautioned me not to use up all my new God energy on Summer. She wanted me to recover quicker. The next morning I woke up with clarity. I thought God will get the glory in the end. We can tackle this from a multi-faceted way. I started her on the medication, which we were told would have no positive impact until two weeks after starting. Summer has been consistently calmer for five weeks now, starting from two days before we started the medication.

Since then my peace and rest has been up and down, as I spend less time resting in Jesus. I can’t stay in the chair all day, as I have stuff that needs doing. So I am practicing negotiating the balance between resting in Jesus and also living life. I want to grow in this rest. God showed me what is possible with extra grace in those first three days and now I want to grow in this and practice it. I believe the medication is helping Summer continue this calm, while I am still practicing and it is helping her personally wherever she is.

I love how God shows me what is possible and then helps me journey to grow into it!

Tithing is Fun

Autism, Bible, Church, Freedom, God, Joy, Microcephaly, Out of the box, Parenting, Special Needs, , ,

Tithe party me M SI love paying tithes! You can probably guess two of my reasons. But the third might be a bit of a shock…

(For those who don’t know what tithing is – it is setting aside 10% of one’s income for God).

  1. I love God and want to put him first in every area of my life. It would be miserable to hold the area of finances back. I would feel like I wasn’t trusting God or honouring him. He’s so precious it is a joy to put him first. And tithing is a tangible way to express that. One that costs. One that is a sacrifice.
  1. I like giving tithes to the church because it is my local spiritual home. So I help pay the bills. There’s a sense of honour and rightness in this. A sense of being an adult and taking responsibility. I like being this kind of person.
  1. He he he this is the funny one. I also use tithes to have a party! Now I need to establish some context here…

One of my passions is to know God’s ways and walk in them. I read the Bible with eyes that seek to discern his ways and his heart, even if it seems to contradict the traditions I have been taught. Some times I spot things in the Bible that seem controversial because of the cultural or religious parameters I currently experience. I meditate on such Scriptures, trying to discern the difference between God’s thinking and ours, and what needs to change. Even Old Testament passages on laws that no longer apply in New Testament times, give me insight into how God thinks, what he values and what works.

Well I found a passage on tithing that really got me thinking. Have a squiz…

Deuteronomy 14:22-28:

“Be sure to set aside a tenth of all that your fields produce each year. Eat the tithe of your grain, new wine and olive oil, and the firstborn of your herds and flocks in the presence of the Lord your God at the place he will choose as a dwelling for his Name, so that you may learn to revere the Lord your God always.  But if that place is too distant and you have been blessed by the Lord your God and cannot carry your tithe (because the place where the Lord will choose to put his Name is so far away), then exchange your tithe for silver, and take the silver with you and go to the place the Lord your God will choose.  Use the silver to buy whatever you like: cattle, sheep, wine or other fermented drink, or anything you wish. Then you and your household shall eat there in the presence of the Lord your God and rejoice.  And do not neglect the Levites living in your towns, for they have no allotment or inheritance of their own.

At the end of every three years, bring all the tithes of that year’s produce and store it in your towns, so that the Levites (who have no allotment or inheritance of their own) and the foreigners, the fatherless and the widows who live in your towns may come and eat and be satisfied, and so that the Lord your God may bless you in all the work of your hands.”

I have to admit. This one baffled me, as I’ve never heard it taught before. I’d only ever heard of people paying tithes to the church, or some people would give tithes to charities or missionaries. But here in Scripture the people were instructed to eat their tithes, to have a party, a celebration. And no small celebration at that. A whole year’s worth of tithes!!! And they all did this it seems at the same place and at the same time. What a ginormous incredible lavish celebration this would have been! But God didn’t want to leave out the religious leaders (Levites) – they got to celebrate too. And of course every third year, the tithe went to providing for the religious leaders and the needy.

But the primary purpose of the tithe seemed to be for feasting and rejoicing in God’s presence, with the whole community, to teach them to revere the Lord always.

How incredibly exciting. A party of epic proportions. Wow!!!

This was doing my head in. I was thinking. What does this say about God? What was he aiming to achieve in this, that can teach us practical wisdom for now? What benefits are we missing out on by not doing this today? Here is my thought journey…

  1. Shock! Imagine spending the tithes on yourself. Is that allowed? It feels sacrilegious. But it’s in the Bible (God’s idea).
  2. Shock! Imagine spending the tithes on food and drink which won’t last. Here today, gone tomorrow. Is that wise use of funds? Wasteful? But it’s in the Bible (God’s idea).
  3. Shock! But then the church wouldn’t get enough money. They need money to operate. I share in this responsibility. (Yes! God covered this every third year, it’s included. More on my personal response later).
  4. What’s God trying to achieve? What would be the benefits of doing this?
    • God is put first, he’s the focus, he’s revered, he’s obeyed (same as for current tithing).
    • Celebration and rejoicing is extremely important for the health of a community, and even the mental health of individuals.
    • The lavish, generous spread of food and drink speaks of a lavish and generous of God. We participate in his nature. (I think it will be like this in heaven).
    • It shows other nations how blessed God’s people are, that they can celebrate in such happy and lavish fashion.
    • It gives children a really positive view of God as generous, as provider, as someone to be excited about. Parties and food and excitement speak volumes to kids.
    • Being a follower of God is not seen as boring. Followers are not seen as dry or stingy.
    • It sets an example of generosity and freedom and celebration. It builds these things into the culture.
  5. I honestly felt the Holy Spirits’ excitement when exploring this. I felt his joy and his delight in my awakening and his desire for me and my family to experience this.

But… my heart is also to share financial responsibility for my local church home, as expressed in point number one at the top. I value this and consider it very important and necessary.

So I talked with my husband and we decided to continue our current level of tithing to our local church. And any additional income we received, we would put aside a tithe for an annual celebration before God. Again I really felt the Holy Spirit’s pleasure and excitement for this.

So last November, our family of seven had its first tithe celebration. Now this was an event!­­ We have never taken the whole family out to a restaurant before. One, it’s too hard with our middle child who has microcephaly and autism. And two, I hate wasting money, especially as we’re not loaded. My husband and I rarely go to restaurants for this reason, so I couldn’t fathom paying not only for the two of us, but then pay for five kids as well!!! Yes, I know – stingy mentality!

So this was a Jack family first!!! And we had to find a way to make it work for our special needs daughter, or it would be a disaster. With this in mind we chose an international all you can eat buffet restaurant. This was not only perfect for lavish celebration – food everywhere and as much as you want. But it was also conducive for our middle child Summer – she could wander around and be a yo-yo at the table, and it wouldn’t matter. I invited the Oma too, so she could look out for Summer so we could all relax.

I’m telling you, the kids were beside themselves with excitement. When I first told them what we were going to do, they were counting down, they were telling their friends. They couldn’t wait. And I read the Scripture, I told them we were celebrating before God, that we were so grateful for his provision. Wow. Look how much God has blessed us, that we can have this lavish feast!!!

We were all agog at the table when we sat down to lunch. We said grace and then we went for it! I was going to advise the kids to have savoury first, but then I thought – what the heck – let the kids have whatever they want and as much as they want. Well, little five year old Micah went straight for the marshmallows and lollies. He awed at the chocolate fondue fountain. The dessert bar got lots of visits from him and the older two. Summer and Sarah, our two special needs girls were very happy too, but perhaps a little overwhelmed. They ate a bit, but needed helping. Summer went wandering around the Christmas tree that was up already one month before Christmas. She did laps. But nobody minded.

We had such joy! And there was no stress about the bill!! Hahahahahahahahahaha! Oh the joy!

I’m telling you. I was so grateful to God for this experience. I’m crying as I’m writing. I felt such freedom and joy and marvel at how amazing, big, out of this world God is.

The kids have been asking when the next celebration is. They want it twice a year. I’ve put it in the diary as an annual event. They have to wait. Next time I want to make a week of it! Glory to God!!!

Tithe party Kiara Sarah
Beautiful Kiara and Sarah enjoying the celebration!

 

Tithe party Josiah Kristin
Josiah and my hunky husband, Kristin!
Tithe party Summer Oma
The Oma and little Miss Summer!

 

 

Mighty Micah and the cheese bread

Microcephaly Musings

Autism, Microcephaly, Parenting, Special Needs, , , ,
Summer, Sarah and companion dog Rupert!

My husband and I have five children, two with microcephaly (both girls).

I’m finding myself grateful today that one of the girls is partially toilet trained. At seven years of age, that’s definitely behind the average, but she’s still ahead of her nine year old sister. The reason I’m glad is because she really knows how to do number two. I’m telling you that it’s a myth that we all poo once a day. No siree. It can be many, many times. And it’s not fun cleaning that up for a seven or nine year old. My close friend said to me one day after cleaning an accident that she will never ever complain about having to change kitty litter ever again. I’m telling you – I am a blessing to my friends!

You get to learn lots of patience in our household. I get to practice saying the same instructions, not just once or twice but over and over again. ‘Let’s put your shoes on. C’mon Summer time to put your shoes on. Look, here are your shoes. Look – pink shoes. Shoes make your feet warm. Let’s put your shoes on. We need shoes to keep our feet safe. Shoes on. C’mon. Shoes. Shoes. Shoes on.’ And I get to hear responses over and over again. It’s fun to hear how a toy is blue. Blue. Blue. (Yes, it’s blue). Blue. Blue. (Yes, blue). Blue. Blue. We get plenty of time to learn things and practice things, especially patience. Then it’s even more fun when the five year old starts complaining about the repetition and having a meltdown, which causes the nine year old to have a meltdown, which involves a punch to the seven year old, which sets her off too. Then the eleven year old yells at them to quiet down, which helps SO much. And thankfully the thirteen year old is in her room reading. Meanwhile mum is wearing headphones which helps her stay in happy land a little longer.

My friends laugh at me for my ‘calm’ voice. I hold it together, keeping the atmosphere smooth, ‘Summer, it’s breakfast time. That’s OK you don’t have to have porridge. You want yoghurt, sure. Here’s your yoghurt. You don’t want it. No problem. Don’t push it. Gentle with the plate. It’s OK. You’re a blessing Summer. Mummy loves you.’ It’s all calm, no pushing angry buttons here. I’ve learnt from experience. Until the eleven year old whinges and I’m like, ‘Be quiet’ (yelling). All in a split second, the façade drops. And then it’s (calmly) – ‘Summer you want yoghurt now. Good girl. Lovely eating. You don’t want it now. That’s OK. Don’t feed the dog. Sit down.’

I think our household would make excellent reality TV show viewing. Parents could all feel better about themselves and better about their challenges.

In the early days I read that kids with microcephaly are often very smiley and affectionate. Tick tick for our girls. Summer is so expressive with her love. She looks you in the eyes, she says ‘I love you mummy’ and sits on your lap and cuddles for ages. She strokes my head or my back. When I cry she wipes my tears and I get ministered to from her hugs. She has a gift that I can’t really comprehend, but I have been emotionally filled up on many occasions. Others have said the same. Once my husband took her to the supermarket and she saw a homeless man outside. She went up to him and gave him a hug. The man looked a little uncertain, but my husband nodded OK. Later after doing the shopping, she saw the man again and smiled. The man thanked my husband profusely saying it was such a long time since he had been hugged by a child. So innocent. So beautiful. I’m amazed at the gift she is.

Sarah is just such a sweety. I feel like I’m holding a rose and breathing in a beautiful fragrance. She giggles and smiles constantly. She’s naughty too and finds it funny. I’m not sure if developmentally she really understands yet. I can get so frustrated but she just smiles and giggles and says ha-ha in that annoying sing song fashion. She picked that up somewhere and hasn’t let it go. She’s more shy than Summer, but she’s got no problems with volume. Being the number four child, I think she learnt to shout instead of speak.

That’s enough musings for today. More another time…