Someone capable of love

"My studies in Aristotle helped me to order my thoughts, and to distinguish what really matters from what is less important. Aristotle loved all that is human. He made me pay attention not primarily to ideas but to reality and experience. But I differ from Aristotle over certain aspects of anthropology, particularly over his definition of the human being as a 'rational animal', a definition which excludes people with intellectual disabilities from humanity.
I would sooner define the human being as 'someone capable of love'. "


quote from Jean Vanier, Our Journey Home

Matt is a fan of the Soccer World Cup

On Friday the Soccer World Cup 2010 was officially opened here in South Africa. Matt got into the spirit of it!

What's Matt been up to? Part 2

Matt has been practicing his ball skills - he absolutely loves balls of all shapes and sizes. Everytime he sees sport on TV he runs to get the appropriate ball - soccer, cricket or rugby ball and he kind of imitates what he sees the sports men doing.

With the Soccer World Cup here in South Africa this month Matt is getting lots of exposure to the art of kicking and dribbling soccer balls. Big soccer balls have proved too easy for him to dribble so now he is practicing with the more challenging smaller balls.

What's Matt been up to?

Matt has been such a tonic for me during our turbulent season. I haven't been that active in taking photos as usual, but here are a few showing what he has been up to the last month or so.

Matt enjoys mixing things that are in a bowl, as well as the taste-testing (don't we all). At his music and movement class they have been doing a song with actions about making cakes, so Matt's cooking skills have been reinforced there too. I regularly make mini muffins for Matt's snack time. We don't have a sign for muffins so we call them "baby cakes" - using the signs that Matt knows.

Some days are messier than others. But always entertaining!

For fun and for exposure to textures we play with rice, pasta, and beans. Matt loves digging his hands in the various mixtures; hiding and finding small toys and again more mixing and stirring. It is a great activity for the rainy days.

Stay tuned for an update on Matt's ball skill development.

Do not fear

It has been 4 weeks since my last blog entry. I ended that post by sharing how I was planning to grieve the loss of our tiny girl. To be honest I don't think I got very far down the road of mourning. Not because I am still in denial or shock, but rather because it felt wrong to let go and grieve when there is still another little one alive. And it also became clear that the life of this little one was also at risk. Going into labour before 26 weeks would result in death for this little one.

So I have been focussing on the life that is there; and learning how to overcome the stomach-turning fearful thoughts that seem accompany this part of the journey.

In the week following my last post I would wake up every morning wondering if today was going to be the day I was going to lose the 2nd child. Every twinge of pain in my belly - no matter how small - brought panic thinking that I was starting to go into premature labour. Everytime I would think about the fact that we had to get through at least 7 weeks until we reached the "safe zone" of being 26 weeks pregnant, my chest would close up so tightly I could barely breath in - it was like my rib cage would shrink crushing the air from my lungs.

I knew that life like this was not sustainable - and I was also puzzled by the fact that God had repeated (rather abundantly) the phrase "Do Not Fear" in many circumstances throughout the bible. How could God be serious about this, surely there should be some expections to this invitation to live without fear. However it seems that there is no circumstance or situation wher it is acceptable to succoumb to fear. Desparate not to remain in the anxious vice grip I was in, I started to seek, read, pray about this fear-less living.

I saw that God was not telling us "Do not fear" because He would always remove that thing that caused us to fear, but rather the thing that I fear is not worth fearing. In the light of eternity the thing that I fear is really insignificant. I remember reading (I think it was C S Lewis) that our life here on earth is like the title page of a book, and after we die then eternity is the rest of the pages of the story. Not that God trivialises the things we fear or the things we long for. He loves us and understands our hearts cry. However we give such power to things that we fear - things that do not have eternal value. Power over us to rob us of the life that God wants us to live today.

Lloyd and I have been lighting a candle at the end of each day - thanking God for the day that has passed, that our baby is still safe - and praying for the next day, asking God for His protection. And so I have been living one day at a time; whilst also seeing my life from an eternal perspective - both view points have brought peace to my heart.

More freeing for me has been the revelation that God calls me not to fear because, regardless of what happens, He will be there with me - He will be the shepherd who walks alongside me in the valley of the shadow death, He will be there in the fire, when the waters rise up, and when the storm hits. He is Immanuel - God with us. God with me. And so I will not be alone facing that event that I dread should it occur. So it is not worth fearing and giving up my peace today because of what might happen tomorrow.

I do not underestimate the inpact of the many prayers that have been poured out for us - how they have bouyed us up over the rough seas, and have brought us into God's calming presence. I cannot express my gratitude to the many who have been emailing, texting, phoning, visiting with one message - that they are standing with us in prayer. I know that the freedom I have from fear is also due to these prayers.

Therefore, I have been able to live LIFE in this precarious season. I have been able to be present with Matt and enjoy him. I have been able to sleep peacefully at night and not wake with dread each morning. I have been able to taste my food. I have been able to be creative in the kitchen and garden. I have been able to engage with others, not shutting down or withdrawing. I have been able to live.

We are now at 24 weeks...we keep taking it one day at a time - one lit candle at the end of each day.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand. For I am the Lord your God who takes hold of your right hand and says to you "Do not fear, I will help you"

Isaiah 41: 10, 13

Saying goodbye

Today we went back to the gynae. I explained that I needed to check to see if my baby was really dead, that I couldn't believe it to be real. I also wanted to know if it was a boy or a girl.

The scan showed me a little girl lying very still in my womb, the heart was still quiet, and clearly her spirit was safely with Jesus. I can't explain the peace that descended on me. On Sunday Lloyd and I had been in a dedication service for 2 kids - there they had read the story of when Jesus rebuked the disciples for shooing the children away. The words about how Jesus drew the children to himeself, embracing them, came to my mind in the scanning room. I knew my little girl was with the One who is Love.

I didn't feel angry about the loss, just disappointed - because I won't get to meet this little one face to face, and to share the life that she might have had. I also felt sad for the other baby who will not know his or her sister.

Our other baby has grown since the scan on Thursday and is a bundle of life and energy and movement.

The threat of premature labour looms like a dark shadow over the life that is in my womb. We would love your prayers for this baby to be able to stay in for as long as possible.

In the midst of everything I am deeply thankful for Lloyd and for all those who have prayed for our marriage during this tough season. We are walking very closely. I must say that I don't think I have every been more in love with Lloyd. He has risen up as a man of tender courage and gentle strength, allowing me to process things differently from him and yet never making me feel foolish. He has been processing his own pain and has kept me close to his heart without withdrawing - sharing his journey with words and tears. He has shown love and tenderness to Matt despite the grief in his heart.

I am also deeply thankful that during this time I have felt God's love in a tangible way. On Thursday night, after we received the news, a whole bunch of our friends came around in the evening to pray with us. The love and care in that room was so deep and rich. On Friday I received a message from a distant friend, who is living in Hawaii and who would have had no knowledge of our loss. She felt God remind her to pray for me on that Thursday, and that God wanted to affirm my mother's heart for me children. I was so comforted by the knowledge that God had spoken to her about me on that very day of my loss.

So now I start the grieving process...of saying goodbye to our tiny precious girl.

And also the journey of readjusting my plans...for the nursery, for the pram, for the car, for our lives...

and the journey of allowing new plans to form.

The day I walked into a wall...

On Thursday we went for a routine check up on our twins. We are in that safe zone, between the threat of miscarriage in the 1st trimester and the scare of prem labour in the 3rd. So we were not expecting anything sinister. As our gynae scanned my belly it became clear that she was concerned about baby A (as she calls them). She couldn't find a heart beat and the baby did not seem to be moving. She referred us to the Foetal Assessment Unit just up the road, there they have a sophisticated scan that could show what was going on. A long walk up a short road, hoping and praying that it was just our gynae's small machine that couldn't pick up the details.

In the small, dark room of the Foetal Assessment Unit the ultra-sonographer shook her head. No heart beat. With pity in her eyes she informed me that the "foetus had demised" - yes those were the cold, clinical words that she used.

That was the moment I walked head first into the wall. And it hurt.

I had not seen it coming. I had looked forward to the check up - to say hi to my 2 munchkins. The wall would not be moved and I walked into it. Pain throbbed throughout my body. She measured some more, and also checked over Baby B to make sure there were no further concerns. My mind was numb. I was told that since Baby A was the same size as Baby B the heart must have stopped beating only in the last couple of days.

The ultra-sonographer had squeezed us into her busy schedule so couldn't spend much time with us. Too soon she was ushering us out of the room. I had to will my legs to move to take me out of the dark room. The light seemed to bright for me, too happy, too full of life. I wanted to stay in that small, dark space for a while longer. I didn't want to face the world. I could relate to the darkness - it made sense. The light didn't make sense.

Back in our gynae's office I couldn't grasp what I had been told. My body felt no different. There was no bleeding , there were no cramps in my womb. No physical sign of the death that was allegedly inside my womb. Surely, surely the ultra sound was wrong. How could it be that the baby's heart just stopped beating. It did not make sense, in fact it still doesn't. This whole weekend I have been struggling to understand it all...it is like my brain doesn't work. It is like I am grasping at smoke or a cloud, I can't take hold of it. I just can't let go of Baby A. It's like I can't even start grieving because in my heart I don't believe this Baby could be dead.

My heart is so confused that I can't even think about the Baby B - apparently now there is a threat of me going into labour in the next 6 weeks. It is just too much for me to contemplate.

The one joy in all of this has been our precious Matt. He has certainly been aware that something is not right with his mom and dad. On Thursday he started showing many more of his sensory stimulating movements, like head shaking and seemed to go a bit wild. We were a bit concerned how to cope with him and the whirlwhind of emotions. Yet today he surprised us over and over, he was calm and caring. His interactions with us were so therapeutic and he truly brought joy into our home. I thank God for Matt and the light he brings into our lives.

And I look to God to carry us through this storm.

Horses

Matt's new passion is horses. So recently when we were in Hout Bay - we popped in at a local riding school (Thanks to Kate and Andrew for the referral). No-one from the riding school seemed to mind us strolling around so we spent a good part of the afternoon there. At first Matt was unsure about the horses - these real life horses were much bigger than the ones in his books and on television. But after some time he became braver and started to enjoy the experience. He loved watching the kids who were having lessons in horse jumping.

Matt and Lloyd found a fun climbing frame - Matt fearlessly climbed to the top!

Belated Easter Photos

Going through my photos today I realised that we forgot to share about Matt's Easter experience. This was the first year Matt REALLY got into it. My mom was very creative - turning the traditional Easter Egg hunt into a special treat for Matt. She wrapped Matt's favourite chips - Simba puffs - in yellow paper, tied with a yellow pipe cleaner. Whilst Matt had his nap we hung up these yellow surprises all around our garden.

After we helped Matt find the first yellow "egg" and unwrap it he quickly got the idea. It was great that he could have the immediate satisfaction of unwrapping the paper and eating the tasty snack. Soon he was unstoppable...

Oh the joy!



Great exercise for those small fingers to unwrap the paper!

Reaching high and low to find the "eggs"

And not minding to share with his grandpa!

And we then there was the Easter bunny. Matt was unsure about this thing - as he had not yet associated it with chocolate. Next year will most likely be different.

Some fun...

For the last few weeks I haven't been up to blogging much. In the last month I took some photos of Matt having fun, enjoying the last days of summer.

Matt is slowly coming to terms with paint. For a long time he was very uncomfortable with the feel of paint. Slowly paint is becoming his friend.

Matt won a tea set at a friend's birthday party. Matt surprised us by really enjoying a pretend cup of tea... pouring, stirring and best of all "the sip". Followed by an audible "aaaah"

And then there is the pretend chocolate...almost as good as the real thing.

my squishy heart

My heart is a melted puddle of joy. The glorious reason behind my emotional mushiness is the fact that Matt has started saying "mama".

A month ago, on my birthday morning (after a lot of coaching from his dad) Matt uttered that precious word as a birthday greeting. Since then he hasn't repeated it much. Until two days ago when something "clicked" in his brain. Once he started he couldn't stop...it was hilarious. For about 2 hours he would come running up to me with great excitement, exclaiming "mama, mama, mamam, mamam, mama, mama, mama" It seemed like he was so thrilled he could say that word that we wanted to practice it as much as possible in case he forgot how to do it.

The last two days he has used it appropriately to describe me, get my attention and announce my entrance into a room.

Hence the squishy state of my heart.

Compare

compare

transitive verb

• to regard as similar, to liken
• to examine in order to observe or discover similarities or differences

intransitive verb

• to be worthy of comparison with
• to be regarded as similar or equal
• to make comparisons
• to stand in comparison; measure up

etymology: Latin comparare com- with parare- to make equal

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Often it can be very helpful to compare. It is a useful skill that has resulted in improvements, invetions and advancements in all fields of life throughout history. When we arrive in a new situation we compare it to what we know already in order to decide how best to deal with the unknown. Comparisons allow us to get the best deals and make the better choices. We can learn much when we compare one thing to another.

As long as comparison is limited to inanimate objects it is safe and helpful; but as soon as you start comparing human beings then it becomes more complicated. Comparison has inspired and motivated discoverers to explore new lands, sports people to push performance boundaries; academics to excell, and innovators to invent. yet it is a double edged sword - there is always one person who walks away feeling motivated and superior, whilst the other is left defeated, demotivated and inferior. And the darker side of comparison is what drives much of our materialistic economy - the desire to be better than one's neighbour - to have the better clothers, car, house, watches, cell phones, body, hair, appearance etc. is all rooted in me comparing myself to you.

Comparing children, is not however, a complicated matter. It is never helpful, useful or beneficial. It should be avoided at all costs. Yet so many of us fall into this trap, including myself. When I slip into measuring Matt up to another child, he and I inevitably end up feeling defeated, demotivated and inferior. I start focusing on all the things he can't do, rather than celebrating all the things that he can, and all the things that he is. Yet that is not really how I view Matt, nor do I wish him to view himself in this light.

Given how prevalent comparison is in our lives and society, I have decided that the only way to prevent myself from falling in its trap is to be ruthless about eliminating comparison from my life.

I am committing myself to being intentional about celebrating each child for who she is, for the unique gifts and personality he may have and for the personal achievements she has reached. I want to actively war against comparision by speaking blessing and encouragement over Matt and also over every child of my friends, seeking out the special think that God is doing in them.

Will you join me in finding the good and unique thing in every child?

Excitement

There has been plenty of excitement in the Tooke household recently. We were thrilled to find out that we were pregnant again, and then completely blown away when we went for our 7 week scan to check that all was progressing well. I was just hoping to see a heartbeat, and nothing could have prepared me for us finding 2 heartbeats, within 2 beautiful little beans. Our gynaecologist told us not to get our hopes us as often the one doesn't make it. She said if they were both still there at our 9 week scan then there was an excellent chance that we will have twins!!!!

At first we were quite overwhelmed and fearful, but soon filled with peace and excitement. We realised that Matt has taught us a good few life lessons that has built resilience in us and will equip us to handle the challenges that twins might bring.

Lesson One: We have learnt to ask for help. We have no pride when it comes to saying we need a hand.

Lesson Two: We have learnt to take it one day at a time, and not let tomorrow, next month or next year stress us out today. We have learnt that God provides all we need in the present.

Lesson Three: We have learnt there are seasons. There are hard times and there are good times. Each season comes to an end, which is good news when times are challenging.

We also looked back on the first year of his life...Matt taking an hour to feed, then I would express for another 20 min, giving me less than 1hour 40min sleep at a time during the first 6 months. And Matt would vomit and vomit. Not to mention the emotional stress of coming to terms with having a kids with special needs. And the reflux, constipation, pneumonia and lots of medical appointments. Surely having twins will not be worse, might even be easier?

After a long two weeks of waiting. We finally had our 9 week scan, and they are still there!!! Both have heart beats. Both have grown well. Our gynae is happy with their progress. Of course getting to 12 weeks will bring much relief, but we were told we were over the biggest hurdle.

Already I can feel my heart has grown. I have such love for the two little beans, and this love hasn't in anyway lessened my love for Matt. It would seem I have somehow been given a bigger capacity to love.

So Matt is going to be an older brother. How exciting is that?

What a mighty God we serve!

A signing party

For my birthday party this year we decided to have a SIGNING PARTY. After a lovely braai (barbecue), Lloyd and I ran a mini workship teaching our friends Matt's signs. We shared over 50 signs with them, and then we played a few word games with the signs to ensure everyone remembered them. In between the laughter and fun, our friends did so well. We were impressed with the speed at which they learnt the signs. We were so blessed they were enthusiastic about this, because we know Matt is just going to love having loads more people who understand him. It will also re-inforce the signs so he learns more. So we were just so thankful that the evening was such a success.

Too cute not to share

Matt loves swinging, and he thinks his dad's fake sneeze is the best.

Makes a good recipe for belly laughter.

Look how far we have come

In November 2007 we spent a week in a small holiday village called Hermanus. This weekend we were invited there again by two good friends. It was a wonderfully relaxed time filled with beach, sand, sun, good conversations, great food, ice creams, games, play and sleep. You can see from the photos below Matt enjoying the beach (which if you follow this blog know has been a long journey of Matt coming to terms with the sensory experience - texture of sand and the loudness of waves).

One of the highlights of this summer has been Matt's growing enjoyment of swimming in pools. From being so fearful of the water a few weeks ago, he is now at a stage where he can't get enough. I managed to capture some of Matt's delight on video. (Also check out his signing -at one point refers to the "swing" behind him, but then he asks for "jumps", and he also signs "good")

On Saturday afternoon Lloyd and I took Matt for a stroll along the beach front and walked back to the accomodation we staying in 2 and a bit years ago. Memories came flooding back from that visit - Matt wasn't crawling yet, he was waking so many times during the night that we had forgotten what a good night sleep was, he was vomiting frequently during the day, he was on many different medications, and Matt was about to have a big operation on his thumbs. Life has changed SO much since then. We have overcome many challenges. Matt has conquored more than I could have imagined. As we were walking along in the cool afternoon breeze, the sun starting to set, and the sea all around us - I was filled with so much joy and gratitude as I realised how far we have come. I feel like that season is now past, and a new one is about to begin.

Matt goes to the park

Matt's confidence at the park has increase a lot over these summer months. Take a look at out brave explorer.

Eternity

The reality of eternity was brought home to me when a close friend of mine passed away recently. My faith teaches me that there is life after death and the choices we make during this life time does have an impact on what comes next. Though I do believe this, I don't think it has fully impacted my life.

My friend, who lived with an aggressive form of cancer for 18 months, came to a place of knowing that God would not heal him. And that he would die, leaving behind his wife and two small daughters. His sorrow was great, knowing that his girls would have to live on without him. But - and this is what really moved me and many others - he really seemed to look forward to Eternity, to being with his Father. Really. Until the end, peace and joy surrounded him. Really.

His memorial service was filled with stories of people being impacted by this hope that he had. Even his pastor admitted that he thought for a while our friend might be in denial and that the harsh reality of his situation would hit and then deep anger or depression would explode. But it never did. Our friend was at peace.

Really.

My friend had fully immersed himself in the fact that there was life after death and that as Jesus was going to be there, it could only be amazing. The bible (1Corinthians 13) explains how we only see in part now, as if we are seeing in a fog. You don't see a whole lot when you are walking in a fog. So if I look at Matt's life, I need to remember that I am only seeing things through a fog. I do not see him as God sees him. I do not yet see all of God's plans and purposes for his young life. I look forward to the day when the Sun melts away the fog and we all see Matt as God does.

It will blow our minds.

The bible also warns us not to hold onto the temporary things too tightly, but urges us to fight for that which has eternal value. This year I am asking God to show me where I am clinging to these - where I am wasting time and energy stressing about issues which may seem huge now but are of no eternal value. It reminds me a bit about camping. Because I know that a camping trip is short term, I don't stress about sleeping on a lumpy mattress, or not having running water, or the many other hosts of inconveniences. I can enjoy the important things of the experience - the nature, the friendships, the relaxation without it being undermined by stressing about temporary discomforts.

I am also asking God to show me that eternal things and moments in my life. That which I am to pursue. I have a suspicion that these are not massive, public moments that one might expect; rather they are the unseen moments of...

choosing love when I could easily use tiredness as an excuse for being abrupt;

choosing patience when I could easily succoumb to the hustle and bustle of life;

choosing gratitude when I feel I have every reason to complain;

or of choosing friendship and relationship over productivity and the need to get stuff done.

Many of my interactions with Matt are potential eternal moments.

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We don't see things clearly. We're squinting in a fog, peering through a mist. But it won't be long before the weather clears and sun shines bright! We'll see it all then, see it all as clearly as God sees us, knowing Him directly just as he knows us! But for right now, until that completeness, we have three things to do to lead us toward that consummation:

Trust steadily in God

Hope Unswervingly

Love Extravagantly

And the best of the three is love.

1 Corinthians 13: 9-13 The Message

Matt got up to lots of things this Christmas