Tag Archives: microcephaly

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.

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 🙂

The Extremes of Summer (my daughter)

Anxiety, Autism, Emotions, Exhaustion, Mental health, Microcephaly, Parenting, Special Needs, Stress, Uncategorized, , , , , , ,

img_1138I love this girl to bits. I’m proud of her. But today was hard. Actually it was awesome and then it was really hard. I’m going to debrief here on my blog…

  • It was a good start to the day.
  • I slept in until 8:00. Nice. Everyone was quiet. Summer didn’t climb out the window this morning. We now have a new window winder that can’t open enough for her to climb out, but opens enough to air out the pooey nappy smell. We need that window!
  • Summer drank her medication without shaking it around her bedroom onto the wall and blanket.
  • Summer ate all her porridge in her bed, without needing cajoling. She eats better on her own in her bed, than out in the dining room amidst the noise and movement of siblings, which set her off. She also ate without flicking any porridge. No clean up. Only a leaked nappy and had to change half the bed.
  • The smell in the room of pooey nappy was awful. Much worse for a nearly ten year old, than for a baby. I took her to the bathroom to get dressed. I shepherded her like a sheep dog, to make sure she went straight to the bathroom, without suddenly bolting toward the rest of the house. If that happens, then dressing her and doing her hair become problematic. There’s no bargaining power, as she’s free. If she’s in her room and she doesn’t want to co-operate, I can say goodbye, lock the door and come back later.
  • Once all ready she joined her siblings and Rupert in the rest of the house for five minutes, before getting in the car. All fine. No dramas. Only five minutes of risk time.
  • The 20 minute car drive was great. She hugged Rupert the whole way and insisted that I hug and kiss him at various points. Rupert earns his keep every day I tell you!!! She was happy and repeated various sentences over and over. I’m used to it. It hardly bothered me. She’s gorgeous.
  • I dropped her and Sarah to a special needs program from 10-3. Blessing! Yay! She saw a friend and enthusiastically greeted her with hug and kiss and ‘my friend’. Warmed the heart.
  • She bolted inside for the out of bounds music room. The other child followed her, much to the grandmother’s chagrin. It took time, effort, skill and patience to get her out. To move her from one side to the other, to remove the guitar from her, to get her away from other instruments, to shepherd her away from the sight of other distractions. Made it. Bye. Have a nice day!
  • Micah and I went to a local park with Rupert. It was a glorious day. The park was BEAUTIFUL. Lots of lovely trees. Blue sky. Gorgeous gorgeous gorgeous. We stayed longer than I planned. I was so happy. Kris called to say he was taking Kiara and Josiah with him to help him with soup kitchen preparations. I relaxed even more.
  • Micah and I went home for lunch, I had a rest on the bed, we did part of a jigsaw, we tried some sugar free desserts I had made, I rested some more. Micah and I were singing to ourselves.
  • I took the iPads in the car as ammo to pick the girls up.
  • They had had a great day, as usual at the program.
  • Before leaving, Summer wouldn’t go to the toilet. She took her top off. I got her top back on when she realised she was cold. I’m glad she’s not a teenager. I kept trying to steer her to the toilet, but she kept trying to escape past me. I tried to block her escape and cajole her. To no avail. Some screaming, some initial aggression. It was a no win situation. I let her go. Whilst trying to walk out, she saw a guy opening a storage area. I said ‘oh no’ while Summer bolted for the opening. A staff member and I spent time coaxing Summer out. He helped bring her to the car, while I walked in front with eyes in the back of my head watching every movement, ready to dart and block.
  • She had her top off again. She didn’t want the helper to put it on, so she froze and wouldn’t get in the car. I realised she wanted mummy to do it, so after getting Sarah and Micah in, I leaned over and put her top on. Then she got in. Then the iPads were on. Peaceful car trip.
  • Once home we tried toileting again. Summer ran for upstairs as the door was mistakenly open, so I went with the flow and steered her with some resistance to the toilet. She was agitated. I was nervous the iPad might end up in the toilet. She relaxed though and complied. She actually did a poo in the toilet. That is actually big news! Been working on that for four years. While she was sitting, I went downstairs, got Sarah and put her on the downstairs toilet, working through some resistance also.
  • The girls stayed on iPads for a while. Summer was naughty at some point. I can’t remember what she did, but I put her in time out. I think she was lashing out at someone. It’s hard to get her in her room for time out. She’s strong and I can’t carry her anymore. I have to hold her wrists and move her quickly and hope the momentum and speed will distract her from resisting. I need her to walk with me. If she resists, she drops to the ground and becomes a dead weight. She can then scream and kick anyone near her. If I’m overwhelmed with what is going on and the needs of other kids, I can’t just leave her there, or she will start damaging things. So I grab her by the wrists, so she can’t scratch me, and drag her by the bum along the floor to her room. I try to do this in a way that is not going to hurt her. This is my last option, when all else fails. When she’s in her room, I lock the door and we both have space. When I come back she is happy, she says sorry and all is well again. We both need the space. It helps us survive. I realise this paragraph may sound very shocking to normal mums and dads. This is not normal. Summer’s brain condition is not normal, her behaviour is not normal. Normal parenting doesn’t cut it. We do what works. We love her to bits. But we have to protect her, I have to protect myself and I have to protect the rest of the kids.
  • For some reason, she ended up in time out a second time. That’s unusual. We don’t use time out that often anymore, only when she really won’t settle and is causing disturbance that is escalating. I checked on her and smelt a poo. I went to get the wipes, etc. And did something else and got distracted. I forgot about her. Later when looking for her I realised she was still in her room. She had taken her pull-up off and the poo had fallen in a pile on the floor. Then I saw the walls. Smeared poo in many different places. She has never done this before. On the rug too. And a little on the bed mattress. I wasn’t feeling my best at this point. I took her straight to the shower, while she resisted. I was worried she had poo hands and didn’t want her spreading the mess. I was being bossy in tone, and hoped she would submit as she can often do, when realising she has done something she shouldn’t have. She resisted the shower but I got her in there anyway and attempted to shut the door. She objected and tried to get out. I wouldn’t let her. She started grabbing things in the shower and throwing them. She started playing with the taps. I left the room, hoping she would settle if I wasn’t there. She came out. I took her back in. She threw more things. I shut the door. I needed time to clean the room. I needed to contain Summer somewhere so she wasn’t wet and naked and pooey in some other place in the house. She came into the bedroom wet and helped me clean the poo. Rupert had already eaten what was on the floor. I warned the kids not to let him lick them. It took quite a while to clean the wall. Summer was more cooperative.
  • I spoon fed Summer her dinner while she was on the iPad. This is the least problematic way to feed her. I don’t like it. I want her to join the family. Sometimes we insist on it, but it usually involves considerable stress for her and the whole family. Problems include – getting her to the table, getting her to stay at the table, stopping her kicking the nearest child, enduring screams if she initially rejects the food, risking food being pushed away and something thrown, risking verbal stoushes with siblings that can escalate very quickly, her refusing to eat, then wanting something, then refusing, then wanting, then wanting a different utensil, etc. The easiest times are when there are visitors for dinner. Then she can often sit and behave quite nicely.
  • I don’t think I was as patient with Summer today as I can be. I had such a lovely relaxed day with Micah, that encountering her challenging behaviour was more of a shock and I often find it harder to deal with when I’ve just had a break. Summer responds best to immense patience, a sense of humour and eyes of love. She’s a connector. That being said, she also responds well to a firm hand – and a bossy voice can sometimes get her moving, when nothing else will. It’s a fine line all the time. I have to have a hundred strategies and pull them out at different times, hoping for the best. I try one, it doesn’t work, I try the next, it doesn’t work. I feel like I am doing a special needs parenting dance. It’s stressful. It’s unpredictable.

Ow My Head

The laughs: The girls make us laugh a lot. Summer did a good job tonight after an unexpected bump to Sarah. And watching this video back, they did a lot more laughing again.

The food: Summer and Sarah helped themselves to ‘Frozen’ rice bubbles after dinner. I was happy for them that they initiated and completed the task themselves. No matter they weren’t at the table. I’ve learned to be flexible with these two, especially Summer. Table is ideal. Loungeroom is not allowed. Elsewhere we can work with, if it means a good mood and food is eaten.

Dinner time we aim to have all seated. Sometimes we let Summer eat later. Sometimes we insist she sit with us or give her the alternative of bedtime. Then she chooses dinner. It can be hard work getting her to sit with us for the whole of dinner. Sometimes we just want to relax and focus on the other kids. Other times we just want the whole family to be together. So life and decisions ebb and flow. It’s been a long journey of learning the hard way, learning to be flexible.

Outings With Summer – Note To Self

Autism, Emotions, Joy, Laughing, Love, Microcephaly, Parenting, Special Needs, , , , , ,

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.

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!

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…