Its fun when dad is on holiday

Lloyd has been on leave so he has had a lot more time with Matt. Here are some fun pics of the two of them building a big tower with Matt's used formula tins. By the time I managed to grab my camera the building process was well underway...

Celebrating the big tower with a clap of joy!

Our Easter in Betty's Bay

Over the Easter weekend we were in Bettys Bay (a holiday town about 1 hour from Cape Town) with our friends Ruth and Jono and family. We had such a good time that we forgot to take photos. We did however manage to catch a photo Matt's first bite of a marshmellow chocolate egg!

He really liked it!!

This Easter our celebration was rather different from usual. We joined other holidaying families in someone's holiday home for an informal but meaningful service. Ruth and I left the service half way through as our toddlers weren't keen to sit still. As it was a sunny and calm day we headed for the lake. I was very conscious of God in this setting - the lake is surrounded by lush vegetation and has a beautiful mountain as a backdrop.

We also got chatting to a young mother and her daughter who were also enjoying the cool water. This young girl has cerebral palsy and at the age of 6 is unable to walk or talk. Once this mother heard that Matt had a rare genetic syndrome we connected immediately. Before I had Matt I would have been shy or uncertain as how I should interact with her and her daughter. I probably would have stayed away. But Matt has taught me that he has such depth to his personality despite his medical label. So as I looked into this young girls eyes I saw beauty and I saw a little of the person who was in there. It was a short but precious encounter.

Later that evening Ruth's mother, Eleanor led us in communion after serving us a tasty supper. She is to be ordained as a minister next month, and her reflection on Jesus' death and resurrection was meaningful and deeply encouraging. After a time of sharing and praying for each other, we spent the rest of the evening in fits of laughter playing the board game "Taboo". We returned from home rested and joyful.

Saying Goodbye

My brother, Kennet, and his wife, Nantia, are moving to Canada this week. They will be there for at least 3 years - maybe longer. We will miss them and we are SO sad to see them go, but we wish them lots of joy in their adventure! Here are some pics of Matt having one last visit.

A milestone not found in a paediatric textbook

Matt’s ability to handle textures, as well as to co-ordinate chewing has really improved over the last month. He is trying new foods all the time and managing to eat them without gagging. On Friday we were loving our visit with my brother and sister in law – so much so that we lost track of time. Before we knew it, it was Matt’s supper time and we didn’t have any food for him. We decided to stop in at Steers and get Matt some "slap chips" (French fries) and a milkshake. We were rather nervous as we first let him bite into the chips – and to our joy he ate them with such skill and confidence you would have thought he had been eating them his whole life!! Next he happily drank the milkshake – from a cup!! Also a first!

I was so thrilled and overjoyed at Matt’s achievement.

How strange it must seem that I am so excited at my son eating “junk food”. Certainly not a milestone that one would find in a paediatric handbook. I was reflecting on why it was such a big thing. I think it is because it represents freedom and spontaneity. For so long we have had to be so careful to plan exactly how long we are going out for, and if it overlaps with a meal time we have to bring along the carefully pureed meals. Often social arrangements are cut short to get home on time. And whenever we feed Matt in public or at friend’s houses there is that ever-present fear of the “vomit monster”. We would always have to ensure that we had a vomit bowl handy before embarking on a meal – his vomits were that frequent to require this action.

Now all of that can change. We will still do our best to ensure Matt eats healthily (not always using the junk food option :) , but if we choose to be a bit spontaneous and things don’t go according to plan we now know we can find something for him to eat. And what joy to know that Matt has defeated that vomit monster – I hope we have seen the last of him.

So I celebrate the “slap chips” and milkshakes and look forward to more spontaneous, fun outings that are free from the vomit-monster fear.

Matt's physio reminded me that it has been a while since I had posted photos of Matt on our blog, let alone photos of Matt at physio. A good point. So here are some highlights from Matt's most recent physio session:

This is my physiotherapist Pam, in case you haven't met her yet.

Spinning the wheels of the car is fun - especially with two hands at the same time.

I like looking at what the other physiotherapists are doing with the other children.

In fact I enjoy my session a lot more if there is company around.

This is one of my favourite parts of our session - in the sink!!

Waterpolo training?

Hhhmm what are these foam things? What is this white stuff?

OK let me tell you - that white stuff doesn't taste that good!!!?!!

Peek a boo through the window of the tower that Pam and I built

Hhhmmm what is she doing with my hand??

Let me try this on my own...open hand...rubbing back and forth...feels good!

Signs

It has been a while since I have had space in my life to blog. Our life has been full and fat with many experiences that I would love to share. Instead of inflicting one loooooooong post on you, I will post a few shorter ones… so watch this space.

A few Saturdays ago Matt’s speech therapist invited Lloyd and I to attend a training course in Makaton Sign Language. Makaton was started in the UK to facilitate adults with mental disabilities to interact with their world. It has now been adapted for children with communication delay, and also specifically to the South African context.

At the end of the day my brain was exhausted as we had spent a lot of time learning and practicing new signs. But my heart was soaring as I just knew that this would further open up the world of communication with Matt. He has already shown a real interest in signing a few basic signs.

It was also a special day for me because it was the first time I have been around a group of people who know kids with special needs – those who attended were parents or therapists. I have only ever been around one person at a time who is familiar with my life experience – not a whole room full of people! I felt affirmed and understood – it was amazing. So often in social settings I am wondering how much to share about Matt with people – I have to weigh up what do they need to know. Whilst I don’t want to label Matt so they see a syndrome rather than this beautiful personality, I also don’t want them to think that it is taboo to discuss Matt’s special needs. This experience was so different – everyone understood, and so I could be completely comfortable and relaxed.

It has now been a couple of weeks since this training and we have included the signs in our everyday interaction with him. In this short time Matt has picked up some new signs – “mom”, “eat/drink” (he uses one sign for both), “bath”, “more”, “bird”, and his latest is “where?” although he sometimes uses it out of context. It's really so exciting!!!

I have taken photos of Lloyd doing each of the signs that we are teaching Matt (about 30 signs) so that we can equip the other key people in Matt’s life to also use them.

Here is Lloyd saying SLEEP and GOOD

Generosity in Unexpected Places

Sunday was a special day for me – Matt and I were sitting on the nice carpeted floor at the back of our church. Lloyd was working at the hospital so it was just Matt and me. I was feeling quite down and hadn’t managed to share my heart with anyone on the way into church.

I had spent most of Saturday night in tears – I can’t pinpoint what was making my heart hurt. Was it that I had been contemplating this “retard” word and what it might mean for Matt’s life (see previous post)? Was it the very healthy conversation that I had had that afternoon with a good friend about her children and how I feel when I am around her typically developing children? For some reason all these things really affected me and I felt really sad. I haven’t been this sad in a long while. In fact I was so sad that on the Saturday night I stayed away from attending a friend’s 21st birthday party – I just couldn’t face putting on a “happy face” and pretending like everything was fine. So I stayed at home and had a good chat and cry with Lloyd – he is a very good listener.

On Sunday morning I woke up feeling a little better but I still felt like I had this shadow hanging over my heart. I knew that the only way I could find peace was to get to that place where I truly believed that God loves Matt more than I do, and that God will watch over Matt in ways that I can’t.

So there we were on the floor in our church. Other toddlers and their parents hang out there too. Half an hour into the service Matt shows me the sign for “eat”. I then realised that I had left his snack biscuits at home. I tried to explain to him that I didn’t have anything for him, but he didn’t really understand. He just kept repeating the sign and looking at me with his big eyes wondering why I was not responding with food. I felt like a really bad mom and this - added to my other feelings of sorrow - meant I was fighting back tears.

About 5 minutes later another little boy comes over to play with Matt. And before I know it he pulls out a little packet of 3 biscuits. He opens it and promptly offers Matt one. Matt accepts it with delight. I was so moved by this little boy’s action – he did it completely on his own, without any adult telling him to “be good and share you biscuit”

You need to understand that at my church there is a huge mix of people from different backgrounds – racial, language and economic. I know that this little boy’s mom is unemployed and she joined our church through attending the HIV AIDS support group. I know this little boy’s life is not easy. I wonder if what he shared with Matt was his breakfast for the day. Yet God moved his heart to share what he had in order to meet Matt’s need.

That gives me so much hope for Matt’s future. This little boy’s act of kindness has shown me that there is humanity and generosity in the most unexpected places. I felt like God was showing me that He will provide for Matt in the moments that I can’t, because He really does love Matt with a love that I cannot grasp. Something inside me was healed, the sorrow lifted and my hope was restored.

I want so much more

I have been thinking a lot about this word “retard” lately as there has been a growing movement of people who are asking for the use of this word, other than medical, to be stopped. I agree 100% and have signed up on the following website http://www.r-word.org/ to show my support. I like that this movement is calling for a new word - RESPECT.

As a mother of a child who has mental retardation, the misuse of the word “retard” is so frightening. It represents an attitude in people that highlights the potential for my child to be ridiculed, shunned and hurt by people.

It is not that I am frightened that Matt will be physically wounded one day. Although it still happens that people with intellectual disabilities are physically and sexually abused, that is generally frowned upon by society. People say that that is a BAD thing and should not happen. Laws are in place to punish such prejudicial actions. People are quite supportive that people with intellectual disabilities be treated with dignity.

The misuse of the word retard makes me fear that Matt will one day be lonely. Because although people will mostly say that a person with an intellectual disability should be protected and respected – that is as far as it goes. In a real-life encounter people still tend to be uncomfortable around someone who sees the world differently and responds in ways that do not fit into the norm. We all like to be around others who are similar to us. And that really frightens me. I do have this fear that one day when Matt is older – when he can’t charm people with his adorable cuteness anymore – that he will be lonely because

...although people will tolerate him, they won’t necessarily include him;
...although people might talk to him, they won’t necessarily be his friend;
...although people might sit next to him at church, they may never invite him to their homes;
...although he might be part of a group, he may never feel like he truly belongs;
...and although he might interact with people, he may not be loved.

And so I guess what I am saying is that I see the fight against the misuse of the word “retard” as only one tiny step. I want so much more. I don’t want people to just stop using the R word…

I want to see hearts change
I want to see the fear of “the other” evaporate
I want to see open arms
I want to see authentic celebration of differences
I want people to look for how Matt can contribute, rather than look at the ways that he doesn’t fit in
I want to see people being brave and stepping out of their world view to take glimpses into other’s views
I want to see people to value the flavours that diversity brings, rather then guarding uniformity.

Remarkable

Something remarkable happened yesterday. But to understand just how remarkable, I need to give you some background. For as long as I have known Matt he has hated grass. Before he was able to move around himself – when I put him on grass, he would lift his legs high in the air and balance himself using his incredibly strong abdominal muscles. He would desperately try to reach for us, crying until we picked him up off the gruesome grass.

Nothing changed when he started crawling. When placed on grass he would just sit there, legs and arms in the air; crying. We tried when he was wearing shoes and long trousers – but he was still terrified. When he started walking we thought he would tolerate it more – we tried to lift him onto the grass holding him in the standing position. No ways! As we lowered him down to stand, he would lift up his legs and wrap them around our legs refusing to be put down.

Unfortunately for Matt we are quite the picnicking family and often we go with friends to a nearby botanical garden. A typical sight is of Matt sitting and playing on the picnic blanket whilst all the other toddlers are crawling or running around chasing balls and butterflies. Matt gets really frustrated because he would love to be moving but from his perspective he is surrounded by this sea of spikey, prickly, itchy, tormenting grass. So instead of partaking in the joys of play, he contents himself with sitting within the safe boundaries of the blanket.

I was beginning to despair that Matt would forever be repulsed by lawns. I wasn’t at all hopeful that we would see any change soon. Yesterday Lloyd and I were playing on the grass and we invited Matt to join us. As we usually do we tried to give him a opportunity to see that “grass can be your friend”, that is we physically sit him on the grass with us. At first Matt responded in his usual way – legs up, hands up, and tried as fast as possible to scramble onto dads lap without having to touch the gross green stuff.

But then something happened…I am not sure what exactly happened. I have tried to think long and hard – did we do something, did we say something??? I have no answer. But what I can tell you is that Matt started walking on the grass from mom to dad, from dad to mom, over and over, with the distance increasing and increasing, he just kept walking. He was a bit unsure but also remarkably pleased with himself – and he just kept going. If he tripped, he would just calmly use his hands to pick himself up and keep walking. I can’t describe all that was going through my heart and head – shock, delight, astonishment, joy, pride, happiness, and puzzlement. It is fantastical and a complete mystery, I can’t explain it at all.

Today he showed us that his new found friendship with grass was not just a once-off fling, but it seems to be a budding long-term relationship…here are some pictures to prove it.

The mystery of people with disabilities is that they long for authentic and loving relationships more than for power. They are not obsessed with being well- situated in a group that offers acclaim and promotion. They are crying out for what matters most: love. And God hears their cry because in some way they respond to the cry of God, which is to give love.

Jean Vanier in "Living Gently in a Violent World," p. 22

Music and Movement

Picture it…

…12 moms sitting in a big circle and inside the circle 12 toddlers are picking up and throwing balls in every possible direction whilst a happy bouncy melody fills the air.

…the same circle of moms now all holding up a big, multicoloured parachute whilst the same toddlers explore underneath. Some bravely walk around, loving the feeling of their heads brushing against the cloth, others are more cautious and slowly crawl from their mom’s laps to explore this new rainbow world.

These are two moments from our music and movement class that Matt and I have been attending for the last 5 Friday mornings. Each class lasts an hour and is filled with songs and music. With each song the teacher brings out a fun item for the kids to play with – it could be balls, bean bags, windmills, silk handkerchiefs, shakers, dusters or something else exotic. She gives the moms and kids a suggested way of moving or using the item, but is really not stressed if the kid improvises and does his own thing.

I had such mixed feelings about taking Matt to this group. This year I wanted to increase Matt’s interactions with other kiddies. When a friend recommended this group it seemed like an excellent opportunity, especially as it had a strong focus on music. And if you know Matt, you know that he loves music. But on the other hand I was quite nervous of introducing Matt to a whole bunch of people who don’t know him, who may judge him or me. I was worried that he might not enjoy it or that he would be overwhelmed by all the people.

It turns out that the teacher, Theresa, has had experience with kids with special needs so she has been really sensitive to Matt’s needs. She helped me choose the best class for Matt to join. She also gave us space to introduce Matt the class and to share with the other moms about Matt’s syndrome. I decided it was better to be up front about Matt, rather than have them wondering about Matt but being too shy/polite to ask. The moms responded just as I hoped – they treat Matt just as any of the other kids, but they don’t mind asking me questions or finding out more about Matt.

Matt’s response to the group has surprised me. He has managed very well with the many people. He participates in most activities. There are some of the games that he just does not want to do. I can tell he knows what is expected and that he is choosing not to get involved. I’m happy with that – he is learning to express his will. The first song always catches him by surprise and he sits on my lap looking around quite bewildered, and not keen to get involved. After welcome song comes the parachute – which still freaks Matt out. He is happy to stand next to me and watch it, but don’t ask him to get under it. Once these two activities are out of the way, he seems to settle in and enjoy the rest of the session. He enjoys waving the handkerchief, throwing the balls, making stomping-elephant movements, clapping his hands, playing peek-a-boo with the doll, and he loves the story time at the end. This week he took brave steps to go to the teacher to fetch the item for each song – he has been too nervous to do this up until now. I loved watching him interact with her.

Matt’s not the only one who has benefitted from the group. I’ve had some moments of self discovery. I realised in the 3rd class that although I wanted this experience to be all about Matt, I was in fact bringing my own baggage into the group. I realised that subconsciously I love pleasing the teacher, getting things right, following orders and getting praise (yes - you can imagine me in my school class, sitting in the front, hand up ready to answer the question). Deep down I was finding it hard that Matt didn’t want to do something or that he wasn’t participating like the other kids. My head completely accepted that Matt would do things at his own pace, but the “young rule-following, people-pleasing school girl” in me was unhappy. I had a good prayer time with God, repented, recognised the lies that I had been believing about myself and Matt. This prayer time has resulted in greater freedom for me as I’m less concerned about the people-pleasing, and more authentically content for Matt to do his thing his way.

Theresa always ends the session by giving the kids an ink stamp on their hand – this week it was a picture of a butterfly. As Matt is obsessed with butterflies he spent most of the car trip home looking at his hand and signing the word for butterfly.

Gratitude

A while back I read blog post by an honest mom who was sharing how she was struggling with other parents who complain about things their children can do and do too much of, whilst her child may never do those things. For example, a parent saying that their child is such a chatter box that it drives them crazy, whilst this mom (and me) don’t know if our child will ever speak.

I have also had moments when other moms complain about how their little one is just 9 months and has already started walking and it has turned her life upside down, if only he would wouldn’t develop so fast. I can’t relate because I have been waiting for Matt to walk for over 2 years. Or another mom who bemoans the fact that her child just eats anything he gets his hands on – and I think about Matt who would wish to eat anything, but still gags on most foods and therefore is still mainly eating mashed food. These are just two examples, there are many others.

Now I don’t for a moment doubt that to the mom, who is frustrated or inconvenienced by her child’s walking, talking or eating, that she genuinely feels stressed by these issues. She feels her life is made more complicated by them. However my heart is saddened because I feel that she is missing out on some happiness. From my perspective she has it easy, things could be a lot harder - and though I don’t want her to pity me, I do wish that she would be grateful for her child and what her child can do. It seems odd to me that she should be stressing about such small things. What a waste of happiness that she could have been living in.

I hope and pray that she would look at my journey with Matt and feel gratitude – that she would go home and celebrate her 9 month who is walking, or her non-stop-talking daughter, or her munch-as-much-as-you-can eater.

Just as I look at other moms lives, I wonder if some moms are looking at my life. What about my life and journey with Matt might someone else wish I was grateful for. Instead of me focussing on the struggles that Matt has, I can also benefit from a bit of perspective alteration:

I can be grateful that my child lives, as I remember those who have lost their children

I can be grateful that Matt can eat through is mouth, as I remember those with kids who have buttons and tubes.

I can be grateful that Matt can move, crawl, and walk – as I remember those kids who are in wheelchairs, and those kids can’t lift their heads.

I can be grateful that Matt is mostly healthy, as I remember those kids who are hospitalised and fighting chronic or terminal illnesses.

I can be grateful that Matt has both his parents, as I remember those kids with whom I work whose parents have died.

I can be grateful that Matt has access to excellent health and therapeutic resources, as I remember those kids (too many live in my city) whose parents struggle to even buy a loaf of bread.

I can be grateful that Matt is surrounded by a community of loving people, as I remember those kids who are mislabelled, misunderstood and suffer rejection, abuse and stigma.

I can truly be grateful.

.................

Be joyful always, pray continually,

give thanks in all circumstances,

for this is God’s will for you in Christ Jesus.

1 Thessalonians 5: 16 to 18

Up close with Matt during water play

It's official...

Matt is walking

Is or is he not walking?

Cindy made a comment on my previous post saying that she missed the announcement that Matt had started walking. Well there has not been a big announcement because we are not really sure: is he or is he not walking? This has been a recurring question over the last few months. I have been at peace waiting for his walking, but have been looking forward to the big celebration when we can finally let off fireworks to celebrate that milestone. However recognising this milestone has been more tricky than one would think. For a number of months Matt has had the ability to walk but has not chosen to use it unassisted. He would walk 6 or 7 steps between Lloyd and myself when we are seated opposite each other on the floor, and when we initiate it. He would walk 8 to 9 steps from the one side of the room to another in order to get his favourite toy – but only if I encouraged him to do so and only as long as my two fingers were gently resting on his shoulders. And as we posted previously he would sit down immediately if there was any sign of praise or jubilation – the pressure of knowing he was being watched was just too much. So is that walking or not?? Slowly, very slowly he has started taking steps from the table to the couch, from the cupboard to the bed, from the bath to the toilet – independently and self initiated. Sometimes he would reach his destination and other times fall politely on his bottom. We weren’t convinced that that was a description of walking so although thrilled at the progression the fireworks were not left off. And bit by bit, day by day he has progressed, until now he can stand up and walk a good few meters in any direction he chooses – with a 90% success rate (i.e. no falling). He is still not confident to walk in places with which he is unfamiliar – he prefers to hold my hand. So is this now walking…or not quite yet? Do we let the fireworks off and announce to the universe that our little Sunshine is now walking? What do you think?

Here is a video (taken from Lloyd's cellphone so quality not the greatest) of Matt taking his steps:

Matt and his truck

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...

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.

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.

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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.

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.

Click here to go to Part 4.

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??
NO

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.

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…

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.