Friday, January 30, 2009

So what has been happening with Matt...

It has been a while since I have shared about Matt and how he is doing. Here are some updates:
~Matt ate a kettle fried crisp last week- it took a number of small bites but he did it and without choking.
~Matt's walking confidence is increasing day by day - he now happily walks a few meters at a time.
~Matt has started signing even though we weren't intentionally teaching him. Our ST always uses signs when interacting with Matt. I noticed the sign she used for butterfly so I showed it to Matt when we were playing with the big mobile butterfly in his bedroom. He is obsessed with this mobile. And next thing I know he is imitating me. He has since added 3 more to his vocab - push (he loves us when we push him around in the laundry bin); spin (he loves when we spin plastic lids, plates or rings); and DVD. He uses them consistenly for the correct items, but also seems to use them for everything else so we are not always sure what he is saying.
~Matt's PECS progress has plateaued a bit. I have been a bit slack over the festive season in doing it with him as often as I should - but that is changing. He struggles with the activity that aims to help him to choose between two preferred items. I don't think its a difficulty with distinguishing between the pictures that represent the items, I think he is still learning about choice and choosing one thing over another.
~Matt has started nodding when he wants to communicate YES.
~Matt has taught himself to ride his little truck (for a long while he could only go backwards, now he can go forwards too)
~Matt is able to eat soft vegetable cubes, rather than having his veggies mushed.
~Matt has started feeding himself with a spoon - that's only when he is very interested in the food. Often the spoon also gets tossed across the room with high speed, much to Matt's delight and entertainment.
~Matt likes it when his mom and dad kiss. So whenever I happen to have him in my arms and Lloyd comes to kiss me, Matt takes hold of Lloyd's neck, whilst also holding mine and pushes us together to make use kiss over and over again. It is very cute.
~Matt has developed an attitude and now expresses anger - when another kid takes his toy or when he can't do something he wants, or when we try to get him to sleep. Matt has often had difficulty falling asleep and would usually cry and whimper. Now he YELLS and lets everyone know in no uncertain terms that sleep is the last thing he wants to be doing. He still wakes up alot during the night and has a good YELL before going back to sleep - so we are often tired.
~Today Matt started attending a "toddler's music and movement" group. It last for an hour and moms are also part of the group. There are about 12 other kiddies who attend. It was such a good feeling to do something "normal" with Matt. He is the only kid in the class who has special needs. The teacher has been so welcoming and so great in understanding Matt and fitting him in the age group that is most appropriate for him. And Matt really enjoyed it once he settled in.
I think that is all for now...

Monday, January 26, 2009

Remembering Bella

Tonight we remember little Bella who passed away last night. Although we never met her and live oceans apart she was a part of our RTS family - a little sister of Matthew's - and will be missed. She was turning 2 next month. We think especially of her mother Monica who loved her girl wholeheartedly. We believe that Bella is now in a place where she no longer has illness or disability.

For more about Bella's story check out Gena's blog.

Sunday, January 25, 2009

Moses' Mom's Neighbour - Part Four

What do you do if Moses’ Mom’s neighbour happens to be your friend, a member in your church, or indeed your neighbour? How do you provide authentic and meaningful support to her?
We felt it important to also share our thoughts about how we as a Christian community can respond to those who are suffering in our midst. Often people do not know what to do; or they feel awkward and so they stay away or hold back. Based on our experience, this is what we recommend:
Love the person who is going through a tough time.
This might sound like a cliché or an easy answer. But to LOVE someone it means you have to BE 1 Corinthians 13 to the person who is suffering. This takes time and effort and prayer. However by doing so you are being the tangible presence of God to the person.
Share in one another’s suffering.
Paul makes this very clear in two of his letters to the Early Church. He writes to the Hebrews “remember those in prison as if you were their fellow prisoners, and those who are mistreated as if you yourselves were suffering” (Hebrews 13: 3) and he says to the Galatians “Carry each other’s burdens and in this way you will fulfill the law of Christ” (Galatians 6: 2). I find these verses really challenging because they invite us to really get involved in the lives of those who are in pain as though we were in that same pain. Saying nice words or caring from a distance doesn’t match up to God’s standard in terms of loving those who are suffering. This is intimate stuff. The first step to sharing in another’s suffering is taking the time to understand their experience by asking, listening and being with them – and being careful to not jump in too quickly with advice, clichéd prayers or solutions.
Recognize the unique thing God is doing in each person’s life.
Most of us have a standard response to someone who is going through a tough time, usually it is based on our doctrine or belief. Some people believe you should always pray for the miracle and trust God to answer. Other people bring a message that one should accept the circumstances and not hope for a miracle, rather mourn and find the good.
But God doesn’t do the same thing in the same way to each person who is going through a tough time. Instead of assuming what God’s agenda is, ask him about what He is doing in this person’s life and what message it is that He wants you to bring. Let go of the safe standardized responses and rather let God guide to you.

Don’t give up – go the distance.
Sometimes people feel bad that God hasn’t answered the prayers that they prayed for you. Some people have prayed for our Matt to be healed and to be made “normal” and God has not answered. These people took steps of faith and may feel awkward around us because God did not respond in the way that they thought. The worst thing they can do is to shy away from us when we too are feeling disappointed with God. Rather journey with us as we all try to make sense of God’s mysterious ways, rather than leave us alone in our confusion.


Lloyd and I have both grieved the loss of our dreams and expectations we had for our child's life. We are learning to embrace new dreams and expectations. I don’t doubt there will be moments of pain again in the future, but I think the worst is behind us. Most of my days are filled with gratitude for Matt and delight at watching his beautiful personality emerge. We are finding peace that God didn’t answer our prayers for a miracle to “heal” Matt. We have come to believe that God is not going to change Matt, but rather He is going to use Matt just as he is to help change the world.
We hope and pray that our story and lessons will be an encouragement to you - whether you are walking in the shoes of Moses’ Mom’s neighbour - or if you live next door to her.

Saturday, January 24, 2009

Moses' Mom's Neighbour - Part Three

So how do we respond?
In part two we shared about what God has said to us during our time of disappointment. What does all this that God has said mean for us, especially when God does not do the miracle we want, when we face pain and loss? How do we respond in a way that is best for us? I am sure there are a multitude of healthy responses, but here are 3 that we have discovered to be helpful for us on our journey thus far.

Learn how to mourn
In Matthew 5:4 we read: “Blessed are those who mourn for they will be comforted”. Here we see that Jesus is teaching us to choose the path of mourning when we have experienced loss or disappointment. Note please that it is not the fact that we are going through suffering that is a blessing, nor does it automatically result in receiving comfort. Its only when we choose to mourn will we receive comfort. If we choose rather to run away from our pain, to deny it; try to find a short cut around the pain; or pretend the pain isn’t there then there is no promise of comfort. Mourning means facing our pain – and although this feels hard, this is what will bring us comfort and healing.

For me a real turning point was when I started sharing honestly with my friends about our struggles. One of our big hurts was seeing our friends kids develop healthily and normally, when Matt’s development was slow. We were nervous about sharing this pain with them because we didn’t want them to feel like they couldn’t rejoice in their kid’s milestones, or that they had to tiptoe around us. So often when we were socializing we would sit with sore hearts, but pretend like everything was ok and that Matt was normal. It took courage to raise this topic but it has been very healing for us, and our friends have responded so graciously.

Allow God and others to comfort you
We have a choice to suffer on our own or to make ourselves vulnerable by sharing our pain with others. God has made us to be part of a body and he chooses to use people to show His love to us.
I have for many years been an independent person and very capable. For me it was hard to accept help. I am normally the one giving help, not needing it. I have learnt that there is a choice involved in receiving the comfort that people bring, that God brings. We have been blessed by our church leaders coming for supper to hear how we are doing and to pray with us. Sometimes I will get a text message with an encouraging note from a friend. Other times someone will come up to me after church because they felt led to pray with me or share an encouraging verse with me. These have sometimes been so timely, often when I have been feeling low. In those moments I have to choose to receive what is being offered.

I have learnt that in those dark days when I could so easily sit back and think no-one cares, that is actually the moment when I need to reach out for comfort. Even though I feel terribly vulnerable doing so, I am also learning to initiate and ask for support – to phone a friend to say that I am struggling, to ask someone to come around for a chat. Lloyd and I have started inviting people to “prayer parties” where we tell our friends what are needs are and ask them to pray for Matt. These times have been so crucial in our journey towards healing.

Allow God to show you how He can transform your suffering into good.
As mentioned above God has a mysterious way of transforming suffering. We read in Romans 8: 28 “And we know that in all things God works for the good of those who love him.

Philip Yancey puts it so beautifully (from Where is God when it hurts? P 231) – “How would the world be different if Jesus had come as a Superman figure immune to all pain? What if He had not died, but merely ascended to heaven during his trial before Pilate? By not making himself exempt, but deliberately taking on the worst the world had to offer, He gives us the hope that God can likewise transform the suffering each of us must face. Because of His death and resurrection, we can confidently assume that no trial – illness, divorce, unemployment, bankruptcy, grief – extends beyond the range of His transforming power.”

It means choosing to trust that somehow God can take this terrible disappointment and weave it into a blessing that brings hope and meaning into an otherwise very dark experience. Somedays this has been the only reason I have gotten up in the morning – especially in the first 6 months of Matt's life when I was feeding Matt every 3 hours - but he would take an hour to feed and then I would express milk for the next 20 minutes. This meant I only had 1 hour 40 until his next feed – and this would go on day and night. So I never got to sleep more than 1hour 40 at one stretch. And that was when everything was going smoothly, if Matt would vomit up his feed – which he did on average 2 or 3 times in a 24 hour period it would add another hour of feeding into the day. I was exhausted whilst also trying to work through big words like Mental Retardation, Developmental Delay, Non Verbal, but at the same time try desperately hard not to think about the future fears – what happens if I die? Who will love him? Will he have to live in an institution one day? There was a flicker of hope that I was not alone, and somehow God can make something good come out of this. That is what got me through those dark times.

Certainly now that I have come to a place of acceptance of Matt’s syndrome and I have gotten to know his personality, I am deeply thankful to have him in my life. He is teaching me more about humanity and love than any other individual has, and I trust that God will use him to be a blessing to others also.
In the last part of this series of Moses' Mom's Neighbour, we share some thoughts on how others can provide comfort to someone who is going through a time of disappointment, when God hasn't answered their prayers as they had hoped.

Thursday, January 15, 2009

Moses' Mom's Neighbour - Part Two

In Part One we looked at how there are times when God doesn’t respond to our prayers in the way that we want Him to and so we may face illness, death or other tragedy. We asked what does God have to say about this?

What does God have to say?
So what does God have to say to the lady who lived next to Moses’ mom, to all the others in the bible who did not get their miracles, and to us who were disappointed?
Has he abandoned us?
Has he given up on us?
Is he punishing us?
Is He too busy to care??

We have found that God does have something to say to those who are hurting and disappointed. He is not silent. Here are six things that God has said to us during our season of hurt:

1. God says He will be with us in those times of pain
When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour.
Isaiah 43: 2-3

Although there were definitely times when we felt like we did not know how to reach out to God, when the disappointment and fear was so powerful, we did always know that He was with us in this somehow. I couldn’t always point to something and say look that is proof that God is here, but something in my spirit, deep inside knew that He was. It was like a little light that kept shining even in the dark, tired days.

2. God says He will comfort us
As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem.
Isaiah 66:13

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.
2 Corinthians 1:3

Again I find it hard to pin down one thing and say this is God’s comfort – it is not always tangible. Sometimes it’s a whisper, hardly there, but at the same time so definitely there. Other times the comfort comes through friend – something they say or do; or through something I read or heard, or a song or a dream.

3. God says that He is not surprised that we have pain
I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.
John 16:33

Dear friends, do not be surprised as the painful trail you are suffering, as though something strange were happening to you.
1 Peter 4: 12

Our society does its best to hide pain from us. Suffering is not often spoken about. Death and illness are brushed away to a place we don’t see. We are encouraged to look good, to feel good, to succeed and prosper; we are not encouraged to build character and endurance for the times of trial. So when it hits us it is a surprise. But God is not thrown by it, He doesn’t panic and say “Oh my word, look at what has just happened to Lloyd and Jacqui, what am I going to do now???” On the contrary God knows, He is not freaking out, He is not clueless about how He will respond.

4. God explains that suffering can be beneficial
Therefore since we have been justified through faith, we have peace with God through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit whom he has given us.
Romans 5: 1-5

This has been such an interesting concept: that God can take suffering and use it to produce good things in our lives. I don’t believe God is saying He inflicts suffering on us in order to grow us, but when it does occur, He can turn it into something good.
On the one hand it doesn’t make sense (certainly not in the society where I live - good things only come from ease, leisure, pleasure and comfort); but our experience has shown that He is indeed telling the truth. Matt has only just turned two, and in these 2 years we can already see the good that God has birthed through our disappointment. Here are some examples.

Lloyd has found that he has become a better doctor – he has more understanding and empathy for parents. God has used him a number of times to encourage parents who children with disabilities.

I have been able to reach out to other families who have children with disabilities and share how Jesus has been our strength.

We are both more gentle and sensitive to those around us who are suffering which has made us more effective for His kingdom.

We have grown in our relationship with God – it is becoming more real as we have worked through what we believe.

Our marriage has grown stronger as we have walked through this difficult time together.

5. God reminds us to remember the eternal perspective
Blessed is the person who perseveres under trial, because when she has stood the test, she will receive the crown of life that God has promised to those who loved him.
James 1:12

Life on earth is not all that there is to our existence. The bible is clear that once we die, there is more to come – an eternity in fact. And this eternity spent with God is going to be so good, that our sufferings here will be forgotten.

6. God says that has known suffering
He was despised and rejected by men, a man of sorrows, and familiar with suffering.
Isaiah 53: 3

This verse is describing Jesus and we know the story of how he suffered and was killed. In sending his son to earth and watching him die God has experienced and felt the pain of loss, grief, humiliation, rejection and abandonment. He does not relate to me on a theoretical basis because He knows, He has been through it. His compassion and His guidance come from a place of experience, not just head knowledge so to speak.
In Part Three we look at how we can respond to what God has said. Click here to go to Part 3.

Tuesday, January 13, 2009

Moses' mom's neighbour - Part One

Last year in October, Lloyd and I were given an opportunity to share some of our story and our learnings with our church during a Sunday service. I have finally written it up. It comes to a grand total of 7 pages so I will post it in four parts. Here is part one…


Moses’ mom’s neighbour
I can remember the day, the time, the minute. This was the moment when I knew that something in me had been changed and I was no longer seeing the world in the same way. We were on our church camp and listening to a sermon. The speaker was sharing about Moses (Exodus 2). Moses, as we know, was born at a time when the Egyptian Pharaoh had ordered that all sons born to Hebrews be killed at birth. The speaker declared with great enthusiasm that God always has a plan – and proceeded to talk about how Moses’ life was spared through the cunning of his mother and sister, and the hand of God. As I was listening to this, one question struck me:

What about Moses’ mom’s neighbour? Her son was not spared. I imagined Moses’ mom praising God, thankful for how her son was still alive, whilst her the neighbour was broken hearted at the death of her own son. Where was God for her? Did He not care, could He not have made a plan so that her son could also live?

I know that the old Jacqui would not have considered this; I would have gotten caught up in the victory of God as the speaker was doing. I would not have thought to wonder about someone like the lady who lived next to Moses’ mom, and how she dealt with her suffering. However, since walking the journey with my little Matthew God has opened my eyes to those who often melt into the background because their story is not about miraculous victories.

Our story
Whilst Matt was still in my womb we had a scan that showed that something might be wrong with our unborn baby. During that time God really encouraged us through the prayers that we received from many different people. We really wanted to believe that our child had been healed and was going to be born healthy.

Lloyd, as a doctor, had always grappled with the concept of healing, but chose to trust. He had a mental image of him standing in front of the church holding up a 100% healthy baby declaring God’s miracle. Things did not turn out as we hoped.

Matt was born with a genetic syndrome – which means that there is something missing from the cells in his body resulting in him having health problems, and it means that he will grow up much slower than other children. Although he is now 2, he looks and acts like a 1 year old. Children with Matt’s syndrome may have some of the following problems – they may never talk, their brains will work slower so they don’t learn in the same way as others, they may have problems with their eyes, their stomachs, their fingers and toes, their mouths.

The first few months of Matt’s life were really hard for us. He had feeding problems, he was always throwing up and he was ill. The most painful thing was, however his slow development - click here for a poem that I wrote during the first year that highlights the sorrow of having a child that took so long to appreciate that I was there.

We must be honest and say that we were disappointed that God had not answered our prayers in the way that we had hoped. We were confused because we know that God can heal, he can do miracles. We didn’t know how to pray anymore. We felt angry, lost, sad, guilty, alone, betrayed, and tired.

We are not the only ones
And that brings us back to the lady who lived next door to Moses’ mom – who would also have felt the same feelings – only hers would have been more deep and painful. If we look through the bible, we see that she is not alone. There are others who seemingly were overlooked when it came to receiving that miraculous answer to prayer:

Think about the Jews living in and around Bethlehem in the time just after Jesus was born – all boys under the age of 2 were slaughtered (Matthew 2: 16).

What about John the Baptist, he didn’t experience miraculous saving, instead he was beheaded! (Matthew 14:1-12)

And when Jesus healed an invalid at Bethesda pool? What a joyous day for this poor man who had been unwell for 38 years. But what a disappointing day for the “great number of disabled people – the blind, the lame, the paralysed” who were also lying around the same pool (John 5:1-15)? It does not say that Jesus healed them.

In Hebrews 11 we read about the martyrs of the early church who suffered for the gospel. No miraculous rescue for them, instead were tortured, faced jeers and flogging, chained and put in prison, stoned, sawed in two, were put to death by sword, went about in sheepskins and goatskins, destitute, persecuted and mistreated (Hebrews 11: 35 – 37)

If we look at the disciples of Jesus, all of them – except for one – were violently put to death.

We see that the victorious, miraculous answer to prayer doesn’t always happen. What does God have to say about that? .... We explore that in part 2. Click here to go to Part 2.

Friday, January 9, 2009

Hiking with Matt

Matt is very unhappy these days - his friendly smile has been replaced by moaning and whining. Matt has an ear infection, high temperature and gastro. Poor little guy. He started feeling unwell on Wednesday and if he is still not getting better tomorrow we will have to start him on antibiotics. Today has been really tough for me because Matt has been so clingy and grumpy. So I decided to post pictures that my friend Keren took on our hike last weekend - these pics remind me of a happier Matt, and the lovely freedom of being outdoors rather than couped inside the house.

We went for a short hike (about 3 hours) to a cave on Table Mountain called Elephants Eye. We took Matt along in a backpack. Here are some of the views on the way up..

Matt did really well in the backpack for the first hour, then he decided that was boring. Mom and dad took turns to carry him. Unfortunately it was the last bit before we reached the cave which was all uphill. The things parents will do for their kiddies.

We had a good rest when we reached the cave.

Matt really hates sand, and the cave floor was mainly sand. So dad let him sit on his shoulders which Matt thought was pretty cool.

On the way back Matt had a good nap in the backpack - which is quite astonishing considering what a bumpy ride it is. Once he woke up he decided that the backpack was way too uncomfortable when compared to the snuggly arms of mum...

Or the exciting shoulders of dad.

Wednesday, January 7, 2009

There are only two ways to live your life
One is as though nothing is a miracle
The other is as if everything is
-Albert Einstein

Monday, January 5, 2009

Thinking back on 2008

I like thinking back on the year that has gone by and pondering what I have learnt, what I would like to take forward with me into the next year, and what I want to leave behind. Here are some of my reflections on my life journey with Matt in 2009. They are in no particular order of importance.

*Matt understands more than I think – so I must be careful not to underestimate him.

*Matt is responsible for his own learning, and he is eager to live up to that responsibility. I can introduce him to new things and ideas, but I can’t force him to learn. I create opportunities and environments for him to discover but I can’t make him explore. I am learning not to judge his learning ability by what I see. Often I think he hasn’t taken something in and then he surprises me by showing me that he understood all along.

*Matt’s life and his development can become a bit all consuming and I could spend all my time focused on Matt. But that is not healthy for me, my marriage, or my friendships. As I am finding peace with Matt’s syndrome and my life is settling back to normal, I am seeing that I have been so focused on Matt that I have left gaps in other areas of my life that I value. I am learning that I have to intentional about giving time to those other parts of my life otherwise it will never happen.

*I’ve learnt to celebrate the small steps. This has been such a powerful weapon against impatience and despair.

*It is good to ask for help. Friends don’t always know what to do, but are keen to pitch in when asked. I have always been someone who coped well on my own. But I am learning that asking for help really does make life a lot more manageable. And people like being asked, they like feeling needed, they like feeling that they can contribute – this never occurred to me before.

*When I really don’t know what to do I can pray and God will guide. This last year I have discovered more and more that the God is a speaking God. Story after story in the Bible is about a God who communicates with His people and has an opinion on things. He likes being asked and He likes sharing His ideas. I am learning to ask and listen. And I have been quite overwhelmed by how He does speak, and how wise His ways are. I am eager to hear more and walk in His steps.

I hope to take these lessons with me into the new year. But I don't like taking too much "stuff" with me because I love the idea of it being a new year, a new beginning. I really like new beginnings. I even like starting a new diary because it is clean and open; and represents the space for new opportunities. So yes I carry the lessons from the past, but I make sure that my heart, my head, and my hands are open to grasp the new learnings that will surely come my way in 2009.