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

We have been through a season of processing MANY emotions - last month we had a miscarriage when we were 10 weeks pregnant. We have worked through a lot of our feelings and are in a better place, and thus ready to share our experience.

Here is a poem I wrote as I reflected on it all:

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My little child
I never saw your face
I never felt your physical touch
But through your presence in my life
...through your little heart beating in my belly
You taught me so much
in the little time you were with me

You showed me where I have wounds
Places of pain that I have kept hidden
You helped me to bring them into the light
And to find healing

You showed me where I have dreams
Where I have hope
To have another child
To mother a little person

You showed me where I have fears
Uncertainty about my future
And how I will cope
And how Matt will cope

You showed me where I was holding on too tight
Where I was gripping with fierce control
To things that I cannot hold
Or determine

You inspired me
To face my fears
To choose hope
To choose trust
To release control
To let go and breathe
To give myself to my dreams

You showed me, as did Matt
That the only way to live this life
Is in Gratitude

I thank God for you
and for the 10 weeks you were with us
I will never forget you

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We have done some symbolic acts to help us mourn and also to help us celebrate life. The one was to buy a decorative wall-hanging for our garden. It is made of wire and it spells out the word TRUST. This reminds us that we are not in control of our lives, and we choose to TRUST in God. We trust that no matter what happens, He will be with us and He will provide us with what we need to stand.

Trust in the Lord with all your heart

Lean not on your own understanding

In all your ways acknowledge Him

and He will make your paths straight

Proverbs 3: 5-6

Physio Update

These pictures were taking a couple of weeks ago at Matt's physio session. Just so you can see what he has been up to...

Matt enjoying moving the chicken in and out of the farm door.

Learning to move around corners, and putting "in" and taking "out".

Helping Pam to build a bridge using physio blocks.

Pushing the block forward bit by bit, and building the foundation

More building..including lifting heavy blocks. Fun, but hard work.

Matt makes a game of sliding down on his tummy. He found it hilarious.

Learning to walk up and down slopes. After a little help, Matt tries it on his own.

Learning to step up and down

What would a physio session be without some water and shaving cream. Look at those beautiful hands.

The highlight of my week

Shriek shriek shriek - I could hear Matt was really upset. I had left him upstairs playing in my room whilst I went down to pack things for our next outing. I knew immediatelly that this was a something-is-really-wrong-shriek, as opposed to the i'm-frustrated-because-i-can't-make-this-toy-work-shriek or the i-can't-quite-reach-it-shriek. I dashed upstairs.

There he was standing in my room, sobbing. My mind was racing - what had happened? Whilst calming and cuddling him I looked around the room to see if I could see the cause of his pain. Everything looked safe and nothing out of place.

As he calmed a bit, I asked him "Matt, can you show mom what made you sore?" I wasn't sure if he understood the question, and less certain if he would find a way to answer. Without hesitating Matt showed me the sign for CAT. I was astounded. Then I asked him "Matt can you show mom where you are sore?" And he lifted up his hand, and there on it were fresh whelts and scratches clearly the result of an angry cat.

I cannot describe the joy that I felt. Obviously not happy about the cat's actions, but that my little boy had so clearly communicated to me about his pain. I have long been anxious about the fact that he is not able to tell me when he is sore or where. Something that moms really need to know.

I have had a really tough week (a story for a future blog entry) - and this moment was such a highlight, a real gift! Well done Matt. Now I need to have a chat with the cat about scratching...

And another RTSweetie in South Africa

To meet little Jodie click here. She too is in need of prayers at the moment!

A growing RTS family in South Africa

I have just come back from a lovely morning with two RTS sisters - Nicky and her little cutie Samuel (check out her blog if you haven't already) and the newest to our RTS family Tamsin - her daughter Payton is still in hospital and is not yet two weeks old. Payton has a problem with her heart and they are considering surgery.

We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.

Please pray for God's strength for Tamsin and His protection and healing for Payton.

Before sunrise

On Friday Matt was booked for a MRI scan to check to see if he had a tethered chord. We were unsure how it would work as Matt would be required to lie very still for a long time in the midst of loud noise. Sedation was an option, but usually only really works with young babies - and then the only alternative would to get in an anethetist.

Lloyd had an idea on Thrusday night that if we sedate Matt when he was really tired - then he might just sleep through the MRI. However, the appointment was for 8am - not a time when Matt is usually tired. So my amazing husband woke up at 4 am, and woke Matt too (without waking me - bless him) and entertained him for the early ours of the morning. At 7.30am we gave him the sedation meds at home and drove the the hospital. By the time we got to the MRI room Matt had just fallen asleep - and he stayed that way for the duration of the whole, long, NOISY MRI scan. No anethetist required! Lloyd's sleepiness was all worth it. Poor Matt was very drowsy and almost drunk-like after the scan. But after a good two hour sleep he woke up mostly recovered. We still await the results of the scan.

Conquering Sand

This is the hospital where we have spent the last 10 days. It is in a tiny village called Zithulele. Lloyd and I went to a rural part of our country (Eastern Cape, previous Transkei) to support and serve 4 of our friends who live and work here.

Our friends Ben and Taryn (both doctors at the hospital) have recently done up this cute hut on their property for visitors. We were blessed to be the first occupants.

I took this photo standing outside our hut. You can see the sea in the far distance. All around us the view was the same - rolling green hills and little huts.

Matt got to learn more about roosters, hens and chicks - much better than just reading about it in the books. Although the rooster had a bit of an attitude problem and felt he needed to assert his dominance by attacking other "alpha males" - so poor Lloyd was often the object of his assault. (Fortunately Lloyd manage to run for cover or throw water at the determined fowl - and was spared an actual pecking)

We weren't worked too hard, and on one beautifully sunny day we headed down to a stunning rock structure called The Hole in the Wall - you can see why in the next photo. Matt loved playing on the stones - picking them up and throwing them. Matt had been really unwell for the first 4 days of our stay, fortunately by this time he was starting to recover.

Matt and I enjoyed watching the waves break through the Hole in the Wall. It was quick magical and Matt (who usually is always moving around) sat still - transfixed by the sound and movement.

Ben and Taryn have the BEST trampoline. Matt took a little while to get into it. He preferred it when dad jumped and the sensation of being thrust into the air, as opposed to jumping himself.
By the end of our visit when Matt could easily spend an hour on the trampoline being flung in different directions as others jumped around him - should people rest he would sign MORE MORE. And as soon as the jumping started so would his lively laughing.

Here is a cute pic of Matt and Emma having a laugh - Emma's parents Karl and Sal are also doctors at the hospital. Matt enjoyed being around the other kids although he is definitely in the phase of playing alongside kids, rather than with them.

The Saturday before we left the weather was gorgeous so we headed down to the beach with Ben and Taryn and their kids Joshua, Grace and little Elijah. The beach sand was very firm, the sun hot on our backs and there was a little river of warm water running into the sea. The perfect setting for Matt to overcome his sand-and-beach-hatred. Having other kids around who loved the sand and water thing seemed to really get Matt's attention.

It started with walking on the firm sand and discovering that it was not at all scary.

Next thing we know - Matt is crouching in the water, rubbing his hands in the mud/sand. Thoroughly enjoying it and looking as if he does this every time he goes to the beach.

Remarkable.

Our 12 days in Zithulele where filled with many fun and challenging adventures. (One of which was learning to survive without running water for 3 days as the dam pump had broken. I believe our friends there are still without water. Boy did I appreciate my tap when I got home). In terms of Matt's development that Saturday at the beach was a joyful highlight. I am coming to see that Matt's favourite way of showing us he has learnt something new is by surprising us with his new skill. No indication or forewarning that he is learning, no it just arrives - in its complete form. Makes life with him exciting.

Evaluations – in my perfect world

I received many comments and encouragement after my post on Matt’s evaluation. One of my friends who asked me how things could be done better. So if I could change the therapeutic and educational world for kids with special needs this is what it would look like…

Before I share my thoughts, please hear what I am not saying:
I am not saying evaluations are bad – on the contrary, they can be an amazing tool to help parents who are with the child day in and day out to recognise progress and they can ensure that the child receive the most developmentally appropriate input and services.

I am not saying that the medical and therapeutic world is bad – on the contrary they are a VITAL component to every kid with special needs reaching his or her potential.


In my perfect world there are 2 types of evaluations for our kids. The first is to determine delay in children; and a second evaluation is to track progress and also to determine intervention and service provision.

Determining Delay Evaluation
This evaluation will only be used when there is clarity needed as to if a child is delayed and also by how much. Hence it may only be conducted on a child once or twice in his or her lifetime. Once it has been determined that the child has developmental delay it is understood that there are no longer any benefits to keep measuring how delayed the child is – and the focus moves to helping a child reach his or her potential.

In order to measure the delay it is required that the development of the child in question be compared to the milestones reached by typical children. All professionals will recognise that no matter how emotionally strong and well supported a parent is, that the outcome of this evaluation will be traumatic. Also, it will be recognised that the written report is not a neutral piece of paper with words written on it, but a document loaded with power to destroy carefully guarded reserves of parental energy. Therefore, the parents will receive adequate counselling before the evaluation in order to fully understand the benefits and the purpose of it; as well as preparing them for the possible negative feelings they may experience. Parents will also receive counselling after the evaluation in order to help them process the feedback, so that their motivation and energy levels are not undermined. This is because all the professionals recognise that kids with special needs very vulnerable to their parent’s attitude and motivational level. It is understood that the nurturing environment created by parents is one of the most crucial factors that impacts a child reaching his or her potential. All effort is made to ensure that the evaluation does not add a burden to already burdened parents; and therefore negatively impact the child.

Tracking Progress and Determining Intervention
The second type of evaluation is held regularly to measure a child’s growth and development and to determine what input is required to empower the child to move towards her next milestone. However, the foundation to this evaluation is NOT a comparison to the development of typical children using chronological ages as labels for various milestones. So you will never find a statement such us “Jane’s ball handling skills are that of an 8 month old child”. Rather each milestone is reclassified making it a descriptive terms rather than a number of an age. For example in the book It Takes Two to Talk* they explain the stages of communication development as follows: The Discoverer, The Communicator, The First Word User, The Combiner. These stages follow on from each other in a linear process and are based on typical children’s communication development. Each stage is clearly explained and a checklist is given so one can easily see into which stage a child falls. Not once in the 171 page book do they link these stages to the ages of typical children. So I can work out Matt is the First Word Users stage, and then research what I can do to help him move on to the Combiner stage, without ever having to deal with the torturous experience of labelling his communication as that of a 12 month old.

In my perfect world, a new framework has been developed for gross motor development, fine motor development, speech development and all the other spheres of development so that each stage is labelled by a description, rather than the chronological age of when a typical child is able to reach that milestone.

A parent might receive the following feedback:
- Gross motor skills: Jane is in the First Steps Stage in terms of her walking
- Hand eye coordination: Jane is in the early Ball Catching Stage and can improve her hand eye co-ordination through the following activities.
- Fine motor skills: Jane has successfully mastered the One Piece Puzzle stage and is ready for 3 to 4 piece puzzles, threading and scissor cutting.

Ok my descriptions of the stages might sound a bit amateur, as I just made them up now. But I am convinced that if all the well-motivated therapist put their heads together they could come up with an excellently descriptive timeline of the stages that will be user-friendly, meaningful and motivating to parents and therapists alike.

These evaluations can be done as regularly as one requires them and will successfully and positively allow parents to track their child’s progress and also to learn what new things they can start doing to help their child onto the next milestone.

I would like to live in this world.

...

* "It Takes Two to Talk: A Practical Guide for parents of children with language delays" by Jan Pepper and Elaine Weitzman. The Hanen Program, 2004

Matt woke up to butterflies

Matt loves butterflies so to celebrate his 3rd birthday we decorated our lounge with these beautiful creatures. Unfortunately we didn't have the camera handy when we woke up and found his favourite animals perching on walls, picture frames and light switches.

In the afternoon we had a small party for Matt. We intentionally (but with difficulty) limited invites to the children that Matt knows and sees regularly. That way Matt would feel most comfortable and would not be overwhelemd by a big crowd.

The girls took to colouring in more butterflies for Matt.

Matt loved the food!

Robyn, Bryan, Daniella and Georgia - thrilled you could come

Jono and daughter Anna enjoying the balls. Smiley Grant turned into the "monster" that later chased the kids up and down our house, much to their absolute delight.

And what's a party without presents.

Maurietta had kindly agreed to sing some of Matt's nursery rhymes which she did with great enthusiasm. She captivated the attention of children and parents alike.

Anna drumming on the box!

Mom singing along, Matt enthralled

Ethan and Dad Richard clapping along.

Old Mac Donald had a rabbit...

So so so entertaining!

Matt loved the fact that everyone was singing his favourite songs - he sat there, entranced, grinning, and completely forgot to use his tamborine (which he usually shakes with much gasto!)

Matthew - we celebrate your 3 years!