My bookworm

Matt and I were driving to visit a friend today. As Matt had been particularly quiet for a while, I turned to check that he was doing OK. And this is what I saw...

My heart melted at the cuteness of the little feet sticking out the bottom of the book, and the small hand holding it in place so efficiently.

Our Christmas Elf

Haven't got all your presents yet?

Here is an idea if you are needing that last present but you can't bear to face the heavy traffic and maddening crowds - how about giving a donation to a Very Worthy Cause on behalf of the person to whom you want to give a present. Often we end up buying family and friends presents that they don't need (and may not even want??). By giving to a Very Worthy Cause you not only bless the ones who are in desparate needs of funds , but you also warm the heart of the your family member who knows that their "gift" is making a tangible difference this Christmas.

And, although I know of many worthy causes, one has been on my heart for the last while. Remember I wrote about another mom's blog that I had been following. Sadly her precious son Nathan passed away this year. She and another mom who also has lost a child have started a website, called A Random Act Of Kindness (ARK) to raise funds to assist parents who are caring for kids with Cerebral Palsy. Here is the link to the their website: http://www.arandomactofkindness.co.za/.

Even if you have all your presents sorted and are not looking for a last minute gift, it is worth checking out and remembering the next time you feel prompted to want to make a difference in this world.

My prayer is that the memory of this young boy Nathan will never fade from those who knew him, but will continue to inspire us to find the good in all who we meet and motivate us to reach out to those who may be struggling to live in a world that has not been designed for them.

May you all have a blessed Christmas

The last physio session of 2008

Last Monday was Matt's last physio session for the year.

Here is what Matt thought about it...

Just look at the delight on Pam's face as I show her that I can do exactly what she is asking me to do: Walking on knees, pushing the truck with hands correctly around the sides of it.

Hello hello? This is Matthew speaking...

and I am sitting with a nice straight back as I am talking on the phone.

We are learning to walk side to side, with one foot in front of the other.

I was not sure about crawling into this tunnel,

and now that I am here I am not so sure I want to be here???

Look at how nicely I am sitting on the chair.

I just LOVE building the dolphin puzzle with Pam.

Wow! Look it is all done!!! What a big puzzle we built.

This has to be one of my favourite activities: throwing the ball!!!!!!

Even though this picture looks like I am catching the ball, it is actually me throwing it to Pam. After she catches it she rolls it back to me.

Thanks Pam for your caring work this year. I hope you rest well over the festive season so that you can be ready to do more fun activities with me in 2009. Love Matt

PECS Phase II and III

Our lives have been quite full this last week so blogging has dropped a few notches in the priority list. It has almost been a week now since we have been introducing Matt to the next two phases of PECS. Last week Friday we had a session with Julia, our Speech Therapist. She was very pleased with Matt’s progress and was happy for us to move forward with the training.

Phase II, aka Distance and Persistence, is very similar to the first but now the Communication Partner (the person to whom Matt needs to hand the picture) slowly moves further and further away from Matt. This means Matt has to travel with the picture card. Because he is not walking yet he crawls with 3 limbs whilst his other hand holds the card – we have named this “tripod crawling”. He manages surprisingly well, though it looks rather funny. The Communication Partner also pretends to ignore Matt so he has to get this person’s attention by making a sound or by touching them. Matt lets out a determined squeal to let you know that he is there. As with the Phase I, a second person is needed (the Physical Prompter) in order to assist Matt with the task of picking up and handing over the card.

We have also started Phase III which is all about teaching Matt to discriminate between the pictures. Phase III has two parts to it. In the first part one person works with Matt by placing two pictures on the communication board whilst holding the two corresponding items. The trick here is to have one item that Matt really wants and one item that you know he is not at all interested in. If he picks the picture of the preferred item you hand it to him, label it and praise him. He is so chuffed with himself when this happens. If he chooses the picture of the non-preferred then there is a whole detailed process (called Error Correction) to teach him to look at the pictures and choose the one that he wants. The Error Correction process has been worked out really well by those who designed this whole PECS thing. It is quite complicated but with a little bit of practice I am getting it. And when it is applied as recommended it really works. In one week I can already see Matt looking at the pictures and choosing the one he really wants. He is seldom making mistakes any more. We will keep working on the first part of Phase III until after Christmas.

I must say that I am loving my PECS interactions with Matt – it has become a fun, bonding time for both of us. Matt enjoys it too and he actively chooses to participate – so it feels like he is a partner in the goal of finding a way to communicate.

Your comments are so precious to me

Thank you to all of you who comment on my posts and share with your thoughts. I appreciate each and every one of them. Often they have been a real encouragement to me during tough times.

Following my previous post I was particularly touched by the words of a mother who is a bit further down this RTS road than I am. Her name is Terri and she too has a blog (I highly recommend you check it out if you haven't already)

I don't know how many of you read the comments made by others, so I thought I would put Terri's words here as they are worth reading and sharing:

"I have a lump in my throat for you because I can remember the fleeting beginnings of those feelings a long time ago. But I have not been visited by them in a long time.

As others have said, Matt isn't normal. If he were normal, he would be centered on himself and not engaging with others at every opportunity - which is beautiful. Like Addie and Natalie and Caden and many others, he reaches out in sweeping simple ways, ways that make people feel special themselves, feel like they deserve the focus they are getting. Over the years, so many people have confided in me that Addie and themselves have a special sort of relationship and they they really seem to "get" each other. I do not tell them that she makes everyone feel like that. I leave the fact that that is one of our highest ranked prides in our sweet daughter unsaid. Interestingly, it doesn't so much draw attention just to Addie herself, but to our humanity, to what is really the basis of our connection with each other. It teaches people about who they themselves are, reminds them of their worthiness. Matt is giving people a great gift. The fear is just a hurdle for you. You'll jump it when you can and never look back until you read a blog post like this one by a young mother one day..."

My social butterfly

I have a confession to make - not something that I am proud of. But I am hoping that as I write about it I will find healing.

My Matt is becoming more and more social. When we are in the supermarket he loves connecting to people - making eye contact or a cute sound to draw their attention, sometimes even reaching out to them with his hands. He particularly loves having "chats" with those in the check out queues and those behind the tills. Now as a mother you would think that I would just delight in those moments. And a big part of me does, but there is another part of me that is wishing Matt wouldn't draw attention to himself. I have been pondering this reaction of mine - trying to figure out the root cause of this. And here it is - FEAR. I fear that the person Matt is "chatting" to will discover that Matt isn't "normal" and then they might think less of him or reject him.

I realise that I can't protect Matt from the world and I can't keep him in a safe bubble. I know that I have to let him make friends even though there is a risk of hurt and pain. I am praying for strength to let go and let Matt interact. I know oneday I will have to walk with him through the sorrow of rejection, and I am praying that I will have the strength for that. I am also praying that until that day comes I will not live in fear, but rather be free to delight in my little social butterfly as he spreads his wings and warms the hearts of strangers.

Shhh, don't tell yet

Two interesting things have happened this last week.

Firstly we have started "brushing" Matt - and I am not talking about his hair and his teeth. I am talking about brushing his body. A good friend of mine, who is an Occupational Therapist, introduced me to this. The brushing provides deep pressure which can help the child with his sensory modulation. And what is this you ask? Sensory Modulation "is the ability of the nervous system to regulate, organize and prioritize incoming sensory information, inhibiting or suppressing irrelevant information; and prioritizing and helping the child focus on relevant information. Children with problems modulating sensory input may exhibit difficulties with learning, social relations, behavioural and task organisation, attention and purposeful interaction with the space around them" (Katz and Bailey, 2005)

We have noticed with Matt that he tends to shake his head alot and do other odd movements. We were wondering if this was a sensory thing and that is why we were open to trying this brushing thing.

This is what the brush looks like:

The idea is to brush his arms, legs and back at regulary intervals during the day. The first time I did this I was so surprised by how calmly Matt sat and it looked like he was loving it. In fact when I finished brushing his back he lay down again and looked up at me as though he was saying "more please". For the last 4 days I have been brushing him at least 3 or 4 times a day and each time he has enjoyed it. It has become a bonding moment for us. But the best news of all is that his falling asleep has drastically improved from the first night that I had started the brushing. I must acknowledge that we have been doing a variety of things to assist him to sleep (getting a night light, gently training him to sleep) so I can't say his improvement in sleep is 100% due to the brushing. But I am still impressed with the impact it has had on Matt.

Secondly Matt has started walking but we must pretend he hasn't. Matt is able to walk a distance of about 3 meters as long as my finger gently rests on his one shoulder (providing no physical assistance, only moral support). However the minute we get excited about his steps or praise him, he sits down and stops. It is as though our praise puts too much pressure on him to perform, maybe it even makes him scared to fail and disappoint us, so he opts to not try any more. So although we are jumping up and down on the inside, we have to make as though we are not noticing - and then he is happy to continue taking steps. On Friday he initiated the walking by himself - from me to a friend, a distance of about 5 steps. We all just sat there calmly pretending that it wasn't a big thing - although with our eyes we were all communicating great celebration. I am struck by the enormous impact the psychological side has on our physical abilities. So keep this a secret until Matt is ready for the world to know that he can actually walk.

Life is

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.

by Mother Theresa

PECS Phase 1 Update

I am really enjoying this PECS journey with Matt, even though it is early days. Matt is getting to understand the basic steps of PECS - I see what I want, I pick up the card and put it in the persons hand, I get what I want.

It does feel a bit artificial at the moment because we are sitting Matt in front of the "communicator" who has a very fun toy or food in hand, and Matt only has one choice of card in front of him. But I know that this is like any other training. I remember the training we did in my high school netball team. All the skills that were required in the game were broken down into components and then practiced in isolation. So we didn't just learn the game by playing it, but we did loads of drills...passing the ball, running, sprinting, jumping etc. So it is with this 1st phase in PECS - we are practicing a few skills which later will be added to others in order to form an effective communication system.

This last week I recruited my mom and two friends to assist with the process. I learnt quickly that I needed to explain things really clearly and that I should not to be afraid to correct those working with me. That way Matt gets the same experience of PECS as he does with Lloyd and me. And my new recruits did great! I was thrilled. I was surprised how Matt adapted to using the PECS process in two new environments as I took Matt to my friend's houses to do it there. Despite other toddlers toddling around and other potential distractions he engaged with the cards well.

What I have learnt so far:

It works best when Matt really wants the item, as opposed to being mildly interested in the item. So we've had to make up some more cards of his latest favourite items. The more motivated he is to acquire the item, the more motivated he is to learn PECS.

Our biggest struggle:

Matt finds it hard to remove the card that has been velcro-ed to the communication board when the board is not attached firmly to something else. Even though I show him to put his other hand on the board and lean on it, whilst lifting the card, he can't quite get it right. So he struggles to separate the board and the card - and gets frustrated. I will need to get advice from our speech therapist on this issue.

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It is hard to take a photo of the PECS process in action as both Lloyd and myself are involved. But here are some photos of Matt playing with his puzzle after having asked for it using PECS. He likes showing us the puzzle pieces.

I think Holland is becoming home

On Monday we took Matt to the aquarium. It was his first visit. He sat snuggling in our arms and slowly looked at the fish swimming in the big glass tanks. He showed real interest in shiny silver fish and he also seemed to like the very large fish. The small jelly fish also kept his attention. After our stroll through the aquarium we went to the adjoining restaurant for a snack. There they had a kiddies play centre with various slides, trucks, and other fun toys. There were 4 other toddlers in the play area with Matt and me. Matt was slowly exploring the dog-shaped chairs whilst the other kiddies were up and down the climbing frame, running to and fro, and whizzing down the slide. I was watching them and I realized that I didn’t feel that sorrow that I used to feel – I wasn’t thinking “I wonder if Matt would have been like them if he didn’t have this syndrome”. In fact I was quite overwhelmed by their busyness, their loudness, their up and down and forward and backwards. I was reminded of those movie scenes where the main character is in focus and moving slowly while the rest of the scene is sped up to give the impression of the world rushing past the main character. That is how I felt. Matt and I sitting in a peaceful bubble and these other kids were just whizzing around us. I wonder if I am getting used to being in Holland and starting to really appreciate the slower pace.

I have been thinking about that this week and how best to describe the difference in our journey when comparing to typical kids. It is like comparing a road trip to a hike. On a road trip you can go a long distance and you see many different places. On a hike, the distance covered is not as extensive but you still get to see lots of things. You get to experience and discover things that you would surely miss if you were driving past in a car. I like the fact that Matt and I are hiking through life – he is showing me the pretty rocks, the interesting leaves, the funny looking bugs, and the cute little flowers of life that I haven’t ever noticed before. Sometimes I do still miss the rush of life in the car. Sometimes I look at my friends going places that we won’t get to in a while and feel a bit down. But mostly I like that fact that I have stepped out of speedy world of cars and am now learning to meander through life and enjoy the sights and sounds along the way. Yes I think I am finding a home in Holland.

Ready Steady PECS

We have officially started training Matt to use PECS (Picture Exchange Communication System) as a way of giving him a means to communicate his needs, and hopefully oneday his thoughts too. PECS was developed for children with autism, and it has been found to works well with kids who have other reasons for speech delay. PECS does not inhibit development or distract the child from learning speech. Rather it has been shown that speech is facilitated through the use of this strategy.

On Saturday afternoon our Speech Therapist, Julia, arrive at our house armed with loads of laminated photos of Matt's important things.

Here are all the laminated photos - you can see they include
everything from food items to toys to eating utensils.
Each photo has a piece of velcro behind it and
this helps it to stick to the communication board (bottom left).

Here are some of the photos paired with the items they represent.

We are starting Matt off with Phase 1: "HOW" to communicate. Here we need two people to work with Matt - one person is the communcation partner (the person who has the thing that Matt wants, e.g. favourite toy or food) and the other is the physical prompter (sits behind Matt and helps Matt to use the photo to communicate). So we are trying to teach Matt that in order to get the desired item he needs to pick up the photo off the communication board and pass it to the communication partner.

Matt seems to be getting the hang of the whole exchange thing. However he does need to be reminded to pick up the picture rather than just reach for the item. And he struggles a bit to get picture off the velcro as it is stuck to the communication board. But once he has it in his hand he is happy to pass it to the communication partner.

The key to this first stage is to have the 2 people so that the communicator is not prompting Matt as to how to use the pictures. I was so excited to get this going as I know Matt is just bursting with things that he wants to tell us. Poor Lloyd was very unwell on Sunday and didn't want to share his germs with Matt so we didn't do any PECS practising. I found it hard to focus on being loving and caring whilst nursing my husband, when all I wanted to do was to get going with Matt's communication.

Lloyd being unwell got be thinking about broadening the number of people who can help me with Matt during phase 1 so that it isn't just up to the times when Lloyd is available. So am going to put together a small team of various friends and family to help with this Phase 1 training.

Watch this space

Walk with me

I recently read another mom's thoughts on the frustrating moments when people tell you that God must have thought you to be a pretty amazing person who could handle a kid with special needs so that is why he gave you one. They say that God doesn't give us something that He knows we can't handle.

I have heard this too and although I acknowledge people's motives good - they are wanting to be encouraging - the statement is actually very unhelpful. It can make you feel guilty because you know you aren't particularly amazing, and it can make you really question God. Not only is it an unhelpful statement, but I don't believe it is true from a biblical perspective. Ironically it is most often said by Christians.

I believe that good and bad things happen to all people. I believe we have a choice as to how we respond. If we welcome God into our lives and journey, we then have access to His mighty resources. The fruit of the Holy Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and selfcontrol (Galatians 5: 22-23). These things are in our lives because God lives in our lives, not because we are superhuman. So when people look at my life and the task of raising Matt - and they think that they couldn't do it. They must know that I can't do it either. It is only by God's strength, grace and the fruit of His Holy Spirit that I am loving Matt and caring for Matt in the way that I do. (Not that I am getting it right all the time - I am still learning to receive God's strength for all the challenges) I believe that any person can receive that strength from God too - it is not because I am particularly amazing, it is because God is.

I also don't believe in the statement that God doesn't give you a task that He knows you can't manage. In fact my experience of God is the opposite - I believe He calls us to tasks, visions and dreams that are way beyond our own resources.

Paul writes in 1 Corinthians v 9 & 10 "...God said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I (Paul) will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Look also at Moses and Gideon who achieved amazing things, they both started by telling God that He had got the wrong person for the job. Look at the people Jesus called as disciples - they certainly were not called because they were superamazing people. God calls ordinary people to do extra-ordinary tasks - but here is the thing - we do those tasks WITH God, in HIS strength and by HIS power. It is not something we achieve on our own.

God does this so that He can surprise us and the world with His glory and His power - so that when the task is done no-one will be in doubt that it was only achieved by His hand. And then people will be drawn to Him.

In the light of these truths, it would be more helpful for people to acknowledge that the task set before a mother of a child with special needs is hard. Rather than encourage her that she is super-amazing and she should continue doing it on her own, tell her to throw herself into God's arms for help.

Jesus said: Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matthew 11: 28-30)

It would be helpful if people - specifically Christians - truly realise that they are the hands and feet of Jesus here on earth. So every time they do something practical for a mother with a kid who has special needs, God uses that to make her burden lighter. By practical I mean:

• visiting or phoning to see how she is and letting her talk if she needs to,


• sending her text messages or notes of encouragement so she knows that she is not alone,


• making a meal for her family so that she has time to rest,


• babysitting (even for a short time) so that she can have some space to catch up with herself or her husband,


• actively praying for her, her family and her child


• when you are going grocery shopping, phoning her and asking if you can do hers at the same time (I'm not talking about you paying for the shopping, but the act of doing to shopping so she has more time)

Thank you to all of you who have reached out to me or to another mom who kas a kiddie with special needs. I know that it takes courage because it is awkward and often you don't know what to say. I know that you don't want to offend. I know that it is easier to hold back or stay away. I want to you know that I would rather have someone reach out and say something stupid than keep away. I will not hold it against you because this road is new for me too and I too am learning as I go along. If you are really brave you can ask me how best to support me and I will share with you. But whatever you do keep walking with me - you will never know how much it means.

Isn't it Obvious?

I receive weekly stories from the L'Arche community - here is one that touched my heart:

"I visited Ukraine with my friend Joe. In the children's ward of a large institution for people suffering from intellectual disabilities and mental illness, a hyperactive boy around six years of age was running about the room from one activity to another. When he saw us, he ran headlong into the open arms of Joe, who held him a second and then stooped down to hear what he wanted to say. "I'm a beautiful guy!" he said. Joe then asked him through the translator, "How do you know that's true?" Without missing a beat, the boy responded, "Can't you see? It's obvious!" Living, as I have for the past thirty-five years, with people with intellectual disabilities, I've been learning from them what it means to have a high HQ (heart quotient). It has to do with looking for signs that we are loved, even if we have to ask, then embracing those who love us in a long embrace, and finally claiming that we are, in all truth, beautiful. Isn't it obvious? "

by Sr. Sue Mosteller, L'Arche Daybreak and Henri Nouwen Legacy Trust

Where there is life there is love.

- Ghandi

What is life about?

This morning I read what Jessica (mother to precious Alex) wrote in response to a comment that Anonymous had left on another mom’s blog. Tamara has a sweet daughter who was born with severe health and developmental issues. Anonymous left a comment that criticized Tamara for not aborting this child in order to spare this girl a tough existence, calling Tamara selfish for using religious motivation to keep this child alive.

I completely disagree with Anonymous, yet I am glad that someone has had the courage to put into words what so many think. That way we can discuss it and debate it. The deep issue that Anonymous raises is actually a question of "what is life about?" and "what makes life worth living?". I think this question is worth considering, because it forces us to examine our values and beliefs about all life.

We live in a world that worships "perfection" so much so that we do strange things to our bodies to keep looking perfect, yet we neglect our souls and end up doing terrible things to each other. We live in a world that worships the attainment of wealth and the ability to dominate so much so that half the world are squashed down by the injustices of the other half. Our world is slowly becoming dangerously hardened and cold as we become more and more focused on self preservation. In the light of such a world our kiddies don't count for much because their very existence challenges the foundations of such a society.

Our kiddies call forth from us compassion, kindness, humanity, joy, selflessness, and respect.

Our kiddies teach us to love and about love, and if we let them, they open the door to God’s love for us.

Our kiddies are greatly honoured in God's kingdom.

Our kiddies will be welcomed as heroes into heaven one day, and will be heaped with heavenly reward for the way that their lives were used by God to transform those who know them into softer, kinder and warmer people.

In 1 Corithians 1: 27, I read “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.”

In the light of this I can understand why many in our world might be confused about the purpose of our kids' lives - God’s ways don’t make sense. It is rather upside down that God should pour so much love and value into these little people whose bodies (and minds) are weaker. God says our bodies are tents – temporary shelters. Whilst God cares for our bodies and our health, he does warn that is our souls, and not our bodies, that will last forever. This is a wake up call to societies that are obsessed with "the beauty of the body" and the "power of the mind". It is a call to be more concerned about those who have souls with disabilities rather than those who have bodies and minds with disabilities.

Many in our world believe that perfection, success, achievement, independence and wealth is what life is all about. If you hold to that definition our kiddies life may not seem worthwhile. God says life is about love, compassion, interdependence, community and selflessness. According to his definition all our kiddies lives are precious and valuable.

I also shudder to think what our world would become if we follow Anonymous' logic and thinking to it's next step. So we terminate children whose lives don't measure up to some criteria of "normal". What do we do then when someone has a car accident or other tragedy and their healthy body is paralysed or damagee, or their brain functioning impacted? Do we terminate their lives too, because now they don't fit with the criteria of "normal". And then where does that definition of normal begin and end, do we start terminating those who stutter, limp, where glasses or braces because they too aren't fitting into the "normal criteria" and they aren't perfect in every way. This is dangerous thinking with dangerous implications.

Let us rather choose to celebrate our humanity and the diversity of all who live on this planet. Let us support each and every person to reach their full potential.
Let us recognise that each and every person has something to give.

Let us learn to love and receive love.

Penguins and Friends

This last weekend we went to Betty's Bay (about an hour outside of Cape Town) with some friends. Matt got to see some penguins and play with some new kiddies.

Matt was interested in these black and white birds that had a funny way of walking

Look at the many penguins!

Did I mention that it was very windy!!!!

Meet Ruth aka Rufa, Uthie, Rutha, and Ruthanator

Emma maternally wiping Matt's face and Matt finding it quite pleasant. Very cute.

The view.

Playing cards....snap.

Matt was wondering what was so fascinating about these card things. Emma, on the other hand, was intrigued.

Our lovely friends - Paul and Petra with their two princesses - Emma and Ruth.

Thanks to Richard and Heather for your generous hearts and warm hospitality. It was great to hang out with Timothy

Compassion

Every Friday morning I meet with two women at our church. We share, encourage each other and pray together for an hour or so. Matt comes along, of course. Most times he plays with toys, sometimes insisting that I play with him whilst I chat - it is a good thing that I can multi-task. He is usually not interested in us big people, but today was different. My one friend was sharing a difficult experience and was very tearful and sobbing quite loudly. Matt was quite concerned about this - he crawled up to her. Pulled himself into standing position in front of her and put his hand in hers, whilst looking deeply into her eyes. It was such a precious moment for all of us. My friend said she was really moved by Matt's act of compassion. I had tears welling up in my eyes as I watched my little boy sharing love with someone in pain. I am amazed at how God is already using him to bless others - even at such a young age.

Helpless...

Right now it is 8.39pm and I am so frustrated. Lloyd is in with Matt who has been protesting sleep for the last hour. This has become a pattern for the last while – every night Matt looks sleepy. We put him down and he hums and sings for a little while. Then he just starts crying and moaning.

The internal battle begins…. Should I leave him to cry…or should I comfort him. I always end up comforting him eventually. I wonder if he is sore or in pain??? His teeth have been taking forever to emerge – could it be that??? I have given him some basic pain relief – but is that enough??? Does he need something stronger??? Are the pain tablets working yet – his digestive system is so slow?? I go in cuddle him, he settles. I leave, he cries and screams.

Is it that he is not tired??? No he woke up just before his lunch at 1pm. I go in cuddle him, he settles. I leave, he cries and screams.

Maybe it is his constipation – when did he have a poo??? No he poo-ed today so it can’t be that. I go in cuddle him, he settles. I leave, he cries and screams.

Is he thirsty? Did he have enough to drink today? I'm sure he did...but maybe not??? I go in cuddle him, he settles. I leave, he cries and screams.

Is this just a stage? Has he realized it is more fun to be awake than to sleep? Or is there something seriously wrong? Will he ever want to sleep again? I go in cuddle him, he settles. I leave, he cries and screams. And so it continues and continues.

I feel defeated and tired. Then the resentment creeps in – I feel like I give him so much of my attention and love throughout the day, I really would like some time for me in the evenings. I would love to have an hour to just chat to my husband before my brain becomes a fuzz of tiredness. I resent the fact that my evenings are dominated by the little cry monster. It is so hard to plan evenings out because by the time we settle him it is so late. We haven’t had supper before 8pm for weeks, and if we eat at 8pm then that is a good night!!! It is amazing how helpless and lost I feel in all of this. Add to that a good dose of confusion and guilt. Parenting can be really tough!!!

Book Review: Where is God when it hurts?

Where is God when it hurts? by Philip Yancey

I found Philip Yancey’s exploration of pain and suffering to be sensitive and honest. His humility in writing made sure that I did not feel judged for any of my thoughts and feelings that I have had in my process of working through disappointment. He starts by explores the physiological benefits of pain which I found fascinating. He then grapples with pain from a spiritual point of view – is it from God? Here he examines some of the unhelpful myths and beliefs around suffering that can add more burdens to those who are grappling with loss. He then explores the ways we can respond to suffering. He delves into ways we can cope in the time of pain and ends by looking at the role of faith in the journey through disappointment and loss.

I liked how he drew on people’s stories and experiences so that the book is not just a theological document. However he does not shy away from exploring the bible and it’s perspective regarding suffering. I found Philip Yancey’s thoughts and teachings helpful in my own journey and would recommend it to someone who was grappling with suffering from a spiritual and Christian perspective.

Here are some passages that I am still reflecting on:

"Rabbi Harold Kushner cites an old Chinese tale about a woman overwhelmed by grief after the death of her son. When she goes to the holy man for advice, he tells her, “Fetch me a mustard seed from a home that has never known sorrow. We will use it to drive the sorrow out of your life.” The tale recounts how the woman goes from house to house, asking if the home has known sorrow. Each one has, of course, and the woman lingers to comfort her hosts until at last the act of ministering to others drives the sorrow from her life." (Page 193)

"A wise sufferer will not look inward, but outward. There is no more effective healer than a wounded healer, and in the process the wounded healer’s own scars may fade away." (Page 193)

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." (Page 231)

"I know well the helpless feeling of not knowing what I ought to pray, as I imagine every Christian sometimes does. (In the face of suffering…) What can we ask for? How can we pray? Romans 8 announces the good news that we need not figure out how to pray. We need only groan. As I read Paul’s words, an image comes to mind of a mother tuning in to her child’s wordless cry. I know mothers who, through years of experience, have learned to distinguish a cry fro food from a cry for attention, an earache cry from a stomach ache cry. To me the sounds are identical, but not to the mother, who instinctively discerns the meaning of the helpless child’s cry. The Spirit of God has resouces of sensitivity beyond those of even the wisest moth. Paul says that the Spirit lives inside us, detecting needs we cannot articulate and expressing them in a language that we cannot comprehend. When we don’t know what to pray, He fills in the blanks. Evidently, it is our very helplessness that God, too delights in. Our weakness gives opportunity for His strength." (Page 236)

To learn more about Philip Yancey and his books follow this link.

A step forward

Last week I wrote about the challenges of waiting. I had two interesting responses to that.

The first was from Matt’s physiotherapist, Pam, who phoned to encourage me and also to advocate on Matt’s behalf. She shared how she had observed that Matt, despite me not being able to see it, was in fact very interested in walking. He is very busy practicing and perfecting the various components required for walking. She also explained that child learn in different ways – some think through and plan the task, only attempting it once they are certain they can accomplish it; others just dive in, regardless of whether they will get it right or not, and learn by trying and making mistakes along the way. Matt falls into the first group. She encouraged me that he will walk when he feels he can do it, and then he will walk well.

The second response was from Matt. I joked with Pam that I think Matt had read by blog because the day following my post he showed me that he thought the idea of walking was very appealing in deed. That afternoon my dad visited us and spent time encouraging Matt to push the walker. Matt was very enthusiastic about this as long as my dad held him from behind. (Until that day Matt had not shown any interest in the walker whenever I had offered it to him!!) That evening I put Matt down in front of the walker, he grasped the frame, pushed it forward, walking independently from me! I was astonished. Matt was thrilled with himself (so cute). He pushed that walker with such grace and poise it looked like he was well experienced – just as Pam had said he would.

Matt has been pushing that walker around the house more and more each day. Here are some photos of the soon-to-be-walking boy from this afternoon’s play time.