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.

Is this really progress?

I heard on the radio about a new blood test that will be used by pregnant mothers to determine if their child has a certain birth defect – it is still being tested but looks very promising. Instead of needing to take fluid from the womb to test for something like Down Syndrome, this test can use mom’s blood to identify if the foetus has a chromosomal disorder. The person sharing this news on the radio was excited about this scientific progress as this new test is a less risky and less intrusive than our current measures, and it can be administered at as early as 5 weeks. He explained the implications of this – more pregnant woman can now be screened (not just those over 35 years), and should a defect be found, they can terminate the pregnancy as early as 5 or 6 weeks. My mind followed the logic of this increased screening to the next step = less people with Down Syndrome will be born.

My heart broke.

I looked at my little Matt sitting in front of me – yes he is developing differently from most, but he is still so full of life, vibrancy, love, joy… so full of LIFE. Kids with Down Syndrome also have the potential for a full life. My heart broke for all those little persons whose lives will now be terminated.

My heart broke for our society. I think we are a better people when we engage with those who have disabilities – it challenges the blind and selfish pursuit of success, materialism, and personal satisfaction at all costs. Matt and those who develop differently compel us to find our humanity, our compassion, and our goodness. I believe we will all be worse off by eliminating those with Down Syndrome and the like from our world.

Sometimes this world seems really upside down.

Waiting

Raising a child who has developmental delay is all about waiting. Waiting for the next milestone. It is all about learning how to cope with the waiting, and to find ways to live life to the full whilst you are waiting.

I think there must be a built in “biological milestone clock” in a parent that gets really uncomfortable when one’s child is not meeting milestones in the usual way. Rationally I know he is delayed and I don’t have any real reason to want to rush him. In fact I am convinced that it is best for him to develop at his own pace. Yet I have this strong desire to see him reach his next milestone.

I found it really hard to wait for Matt to crawl. My first coping technique was to set dates in my head – “I will not think about Matt needing to crawl until he turns 1 years”. This helped me not obsess about it and get on with life. The only problem was that when he turned 1 he was still not crawling and I had now set up this expectation in my mind. So BIG DISAPPOINTMENT when that date arrived and he was still sitting. I set myself a few more dates to look forward to, yet each time the anticlimax was too much to bear - so I tossed that coping mechanism.

It was then that I discovered the technique of celebrating - by intentionally looking out for and rejoicing in the tiny, mini, small achievements as well as the big it has helped me to stay positive.

I have found it easier to live life whilst waiting for Matt to walk. I think it is because he is fairly independent with crawling, and is exploring and interacting with his environment. So walking doesn’t seem to be as desperately needed as crawling was when he was just sitting. I think I have also worked through more of my grief with Matt’s syndrome and am more at peace – so that makes the waiting easier.

However the last few weeks have been increasingly challenging. Matt seems to have the capacity to walk but doesn’t seem that interested in doing it on his own. He will walk well with me supporting his hands. With his dad he will walk with only one hand supported (he seems to think that mom needs to still give him two hands). Sometimes when I try to encourage him to walk he will just drop to his knees and choose crawling. Most days I am fine with this and don’t force him. But lately I have found myself getting frustrated with him, irritated that he doesn’t want to try, and annoyed that he prefers crawling. I think when there was no sign of “walk readiness” it was easier to focus on other things and just get on with life. Now that he seems to be on the verge of walking, the fact that is taking so long is slowly chipping away at my patience!

So I guess it’s time for me to get back to being focused on celebrating the tiny, the mini and the small achievements that do happen every day!

Bucket Rides

At our local theme park there are many rides, but the one that I hate the most is the spinning cups. One sits in a big tea cup - it can hold up to 4 people. It spins around on its axis whilst simultaneously moving around a big cirlcle. I always feel very nauseaus on it and for a good while after. However I imagine that if we took Matt he would love it. Here are some photos of his new favourite activity with dad.

First I climb into this small bucket that my mom uses for laundry.

Right! I am ready to go!!

Dad likes to push me forward and backwards - it makes me laugh with joy!

And then I spin from side to side - hilarious!



The best part is the rocking - to and fro, forwards and backwards, Yee ha!

When we have both had enough (usually dad has had enough before me) then I get to clamber out and play with the bucket on my own.

The world of communication

A while back I wrote about my plan to find a second speech therapist for Matt - one that had expertise and interest in communication techniques as well as language development. Well I am happy to share that we have found one and she seems brilliant. She came to visit Matt and I so we could get to know her. She even brought her CV, a description of her work philosophy and a list of parents we could phone for reference!!! I felt like we clicked with her really quickly. She has got loads of experience in working with kids who are non-verbal and so use either sign language or pictures for communication. Last week she had 2 looooong sessions with Matt to really get to know him (and me), so as to find out what he can and can't do, and to see where we should start helping him. I was really encouraged by our time together.

A few weeks back I took photos of some of Matt's things (sippy cup, bottle, mom, dad, favourite food) and laminated them. I have been helping Matt to associate the photo with the thing it represents. I hadn't started working on these as communication tools, but somehow Matt seems to have gotten the idea. He will crawl into the kitchen, and seem to intentially choose a photo on the cupboard, pick it off and then show it to me. I will give him whatever is on that photo. So I think he is starting to figure out that this is a potential communication tool. He has only recently realised that he can do something (make an action or a sound) that will send a message. Before he would reach for something because he wanted it, not thinking by reaching he was sending a message "I want that". I am so looking forward to exploring the world of communication with Matt - in fact I am so excited about it that I am even dreaming about it at night.

Our new look

Matt's birthday party theme was "Sunshine" because he brings sunshine to our lives and because I can't help myself singing "You are my sunshine" to him every morning.

You are my sunshine
My only sunshine
You make me happy
when skies are grey
You'll never know boy
How much I love you
Please don't take
my Sunshine away

It has been one year since we launched his blog so we decided it was time for a change. So in keeping with the Sunshine theme we have given his blog a new title and look.

Thank you to SJH Blog Design for instructions on designing the blog, and to Shabby Princess for the funky colours.

Happy 2nd Birthday

Matt turned TWO years old. We had a weekend of festivity. Matt had 7 mini-parties over the space of 4 days. Each mini party did not have more than 6 or 7 guests. This meant that Matt was happy and comfortable and did not withdraw, nor feel overwhelmed. And it actually worked out nicely for us too because we got to chat and connect with our guests.

I got lots of hugs - here I am with my uncle, Kennet.

I did a birthday dance with Mormor (Danish - grandmother)

I got lots of birthday cards.
=

And what fun opening my presents...hhhmm what is in this big red box???

Look at all these balls I got!!!!

More hugs and cuddles - here with Aunty Merle, and Jacqui (not my mom)

More hugs and smiles (this is Lindz)

When everyone was chatting and eating I got to play , which was nice.

Unlike Matt’s first birthday when sorrow accompanied the celebration, this year we felt pure joy. I think we must have done a fair amount of grieving and working through our emotions during the last 12 months to allow us to enjoy the celebration of Matt and his life. We have reached a place where we are a lot more at peace with Matt’s syndrome and with the life that accompanies his challenges. I think it helps that Matt’s precious personality is becoming more and more evident. The more we get to know him, the more we just delight in him.