Nathan

Tonight my heart is very heavy and sore for a family that I have met over the internet. They live in South Africa in a town near ours. I have been following their journey of raising a child with severe special needs. I have written about him in a previous post. He died yesterday after a fight with pneumonia whilst still recovering from an anti-reflux operation.

His name is Nathan. He was 3 years and 3 days old.

I got to know him this year through his mother’s blog. Although I have not met this brave boy face to face, his life he has taught me some very important things:

All life is sacred and worth fighting for.

Children with challenges can draw out brilliant courage and compassion in their parents and other people.

We should not take any of our luxuries for granted – the simple luxuries of breathing, eating, and sitting up when we want.

We can never control what life throws our way so we should live with grateful hearts for every day that is given to us.

Today I honour Carina – a mother with a deep well of love and a fighting spirit
I pray God comforts her and her family during this season


Today I remember Nathan – a gift from God
I am sad I will never get to see him on this earth, but I rejoice knowing that he has found great freedom in his spiritual body and great joy in the warm arms of His Dad.

Gold Nuggets

These last 3 weeks have been tough. I am not sure what triggered it all off but I have been grieving what Matt isn’t and there have been some really low moments. I feel like for now this season of grieving has come to an end and I have let go of some hopes and dreams and I feel like I can embrace Matt for who he is. I have no doubt that in months and years to come more grieving will be required of me.

I am delighted to discover that I have gained some gold nuggets through this time of trial.

Gold nugget: I have started to be authentic and open about my pain with my broader group of friends.

Gold nugget: Many of my friends have breathed a sigh of relief at my openness rather than feeling awkward and running from me (as I had half expected)

Gold nugget: I realized that many of my friends have been wanting to reach out to me but didn’t know how. In the past I only shared honestly about Matt is people asked directly for fear of inflicting people with sharing they did not want. My holding back meant others held back – we are now finding each other. And it’s good.

Gold nugget: I learnt that if I am putting on a brave face it denies people the opportunity to encourage, love and comfort me. I am learning to recognize my need and to express that need. I have been blown away by people’s genuine care.

With all these gold nuggets I feel RICH and BLESSED.

And ironically, it took a time of deep pain and grieving to discover these gifts.

In raising my children,

I have lost my mind but found my soul.

-Lisa T. Shepherd

Those "ow" moments

I have been thinking a lot about how to manage my interactions with my friends who have kids. Often when I am visiting or chatting with them something will be said that will remind me that Matt is different and cannot do what their kids can do. And that hurts. Up until now I have kept those feelings to myself - I have not been sure how to talk about it without making them feel bad, and usually the feelings are so strong that I am scared that if I do talk about it in that moment I might explode my pain uncontrollably over everyone (not a pretty sight).

I recognise that in each stage of life I am going to have to deal with the fact that Matt's journey is different. So I am sure that those painful feelings are not just going to go away forever. Sometimes I think the easy option is to just withdraw from those friends who have said or done things that hurt me. But I'm sure they won't want that (and then I will have fewer and fewer friends - which I don't want). So I need a strategy that will allow me to be real and genuine about my struggles without blaming or overwhelming my friends. I don't want them to feel like they can't share anything with me or that they can't celebrate their kids milestones with me.

A friend of mine who has been single for many years (but now recently fallen deeply in love) shared with me how she used to cope when her single friends found their Mr Right whilst she was still alone. She recognised that it was a hard situation that could not be escaped. She would take responsibilty for her feelings, but she would chat to her friends if their actions or words were insensitive.

This has given me a strategy to manage those "ow" moments.

ONE I want to chat to my friends and acknowledge that Matt's journey is different (but not less valued) so there will be times when (though it is no-ones fault) I will feel sad. There is no escaping this fact. These will be tough moments that our friendship will need to endure.

TWO I commit myself to taking responsibility for the negative feelings and reactions I have that are due to me being OVERSENSITIVE to what my friends my do or say. God and I will work on those feelings and reactions. I will not make this anyone else's baggage.

THREE I will however share with my friends when I feel they have done or said something that is INSENSITIVE to Matt or his journey. I choose not to withdraw resentfully in silence, but rather gently share with them the impact of their words or deeds. And I will choose to forgive quickly.

This is still very much work in progress. I am yet to take action. But I feel hopeful that being proactive about dealing with the "ow" moments can deepen my friendships and free me from carrying around unnecessary pain and resentment.

I am humbled by Matt

Matthew had physiotherapy this morning. Pam is the name of his physio and her therapy rooms are very open plan and those waiting for their session sit amongst some of those who are having therapy. Pam introduces everyone so that all are comfortable with each other. Matt quite enjoys being able to have therapy amongst others. We usual don't have physio on Wednesdays so we met some new faces, including a 40-something year old man who had some type of disability - I was not sure what. He seemed to have a friendly face, he walked slowly with a limp, and seemed to find it hard to talk.

I was surprised by my reaction to him - I felt awkward and uncertain as to how I should approach him. Here I am a mom who is raising a child with special needs that feels awkward around an adult with special needs. I realised I have a lot more to learn.

At the end our session Matt and I said goodbye to this gentleman - he reached out and shook my hand. Matt was in my arms - he smiled the broadest smile ever and waved goodbye. The man smiled back - a warm beautiful smile - and waved. Matt chuckled. Something special was being communicated between the two of them. My awkwardness dissolved - I felt comfortable being there. Matt showed me how to relax, to smile, to reach out, to just be me and then to connect. Thank you Matt!

Ginger Biscuit

This afternoon as I was settling down to a nice cup of tea with a ginger biscuit, Matt came crawling over. He was showing great interest in my biscuit. I was nervous to let him take it from me as he usually ends up gagging on anything that isn’t pureed. But I also want to let him explore new tastes and textures. Hesitantly I handed him the biscuit and sat waiting anxiously for the inevitable gag and vomit. Matt seemed to like the ginger taste and started chewing with great determination. I watched in amazement as he chewed and chewed. The biscuit got soggy and he chewed some more. He wiped the biscuit on our coffee table, and chewed, smeared the biscuit of the floor, and chewed some more, then dropped it on the couch, picked it up and chewed again. I know most moms would worry about the mess but I didn’t care one bit. I was just thrilled that there he was munching on a biscuit and HE WAS NOT GAGGING.

A Sunny Winters Day in Cape Town

Although Cape Town's winters do not get as cold as other parts of the world, they are very wet. So when a sunny day arrives one has to make the best of it. Two Sundays ago was just such a day so we decided to visit some of our favourite places in Cape Town.

My day of extremes

This morning I read a blog of a parent who has a child with a severe disability. This precious boy has no muscle tone (so he cannot suck, swallow, or lift his head), he can’t see well, is non-verbal, suffers with seizures and frequently aspirates. I was VERY humbled as I read her blog. I was amazed at her strength and courage, even though she sometimes feels that she has neither. I felt that the issues we faced with our Matt were very small in comparison with the challenges that she faced. I was deeply grateful for Matt and that in the light of this other little boy’s story, our lives seem easily manageable.

This afternoon we popped in to visit our good friends who have an 11 month old boy. We had not seen them for a while and I was looking forward to reconnecting. As we walked into their home we were greeted by their precious boy who was boldly walking. I was crushed. The old enemies - hurt, disappointment and sadness ambushed me. It took all my strength to hold it together and greet our friends. I am not jealous of their child, in fact, I was thrilled that he had started walking. Yet it reminded me that Matt is…different, that Matt’s life journey is going to be so different, and that this journey is hard and in some ways is always going to be hard.

I am still trying to make sense of all of this – how I can feel so positive about Matt when I compare my life to one person, and feel so down when I compare our lives to another. I know in my heart that comparing is Bad and Very Unhelpful. Most days I am safely able to interact with others without Comparing, but today I wasn’t.

Grandparents come to visit

During the last week of June Lloyd's folks came to visit. Matt enjoyed bonding with them. Here are some pictures showing the fun that was had:

A shared laugh. Grandpa showing Matt the plants at Kirstenbosch.

Matt taught Granny how to spin a wooden ladybird. Here he is inspecting her technique to ensure she learnt it correctly.

Matt kissing Winnie the Pooh

After lots of fun, its time for bed. Grandpa says Goodnight to cute Matt.

Celebration List

A while ago I felt God reminding me that I am to be a "praise-singer" for Matt, I'm to be his biggest fan, I'm to celebrate his triumphs big and small. This way I will not get caught up in stressing about all the things he can't do (like eating anything that isn't pureed) or I wish he was doing (like walking) or I wonder if he will ever do (like talking).

So I started by sticking up a Celebration List on my kitchen wall. On this list I write down all the things I celebrate. I try to do this every day, but sometimes I forget. Since Matt is turning 21 months tomorrow I thought it would be appropriate to share what I have written on my Celebration List in the last month...

Matt threw a ball for the first time.

Matt fed himself with a spoon for the first time (and then threw the spoon across the room - with much glee).

Matt opened the flaps in his book on his own.

Matt smiles at people and seems curious about them.

Matt ate his first FLING (a baked maize chip that is puffy so it melts easily in your mouth - but this is a HUGE achievement for Matt).

Matt initiated an interaction with a friend (whilst we were at church).

Matt drank 3 sips of thickened liquid from a normal cup.

Matt went shopping with me and wanted to touch and feel everything I put in the trolley.

Matt showed interest in my friends cat (up until then it has seemed like he hasn't noticed that cats exist).

Through Matt we have met many inspiring people that we would not have otherwise met.

Matt has started communicating that he wants more of an activity through body language.

Matt can cruise along the kitchen cupboards

Matt has learnt to wave

Matt has learnt that people wave when they say bye-bye

Matt has started drinking from his sippy cup by himself! (Up until now he has relied on me tipping the sippy cup into his mouth so he could drink from it).

GOOD WORK MATT. I CELEBRATE YOU!

Book Review: So Now What?

So Now What? Winning over depression and loving a boy with special needs. By Celeste Smith

This short but moving book is written by a mother of a boy Mitchy who has Cerebral Palsy and a measure of autism. I was touched by how honest Celeste was about the many struggles that she faced – from battling depression; to dealing with the grief of having a child whose life does not fit into the “normal” category; to managing the practical challenges of helping him develop. She shares thoughtful insights on interesting topics, such as: how to prepare her son to accept his disability; disciplining a disabled child; and the impact having a disabled brother/sister has on the siblings. I found I could glean many helpful hints that will enhance my parenting as well as my coping skills. Through out the book there is a thread of hope (even in the hardest times) and that hope is Jesus. Celeste weaves her faith into all aspects of raising her boy. This hope and faith ensures that the reader finishes the book with a real sense of celebration at the life of Mitchy.

I am sad to conclude this book review with the news that Mitchy died this last month of a drowning accident. I am broken by this news as I feel like to have known Mitchy personally after reading his story. My deepest prayers go out to his parents and siblings in this time.

(This book is published by the author in South Africa, 2008)

I love this face!!

The things Matt gets up to

Here are some fun Matt moments that we managed to capture on camera. These show that raising a kid with special needs isn't always a tough, uphill battle. Don't get me wrong, we still have our challenges and there are tough days. But as we learn to not to take life too seriously, and to enjoy each day for what it brings, then we find there are actually lots of FUN moments to be had...

There are books to be read and flaps to be lifted!

There is toilet paper to be pulled and torn and scrunched up in a deliciously fun way!

There are trucks to ride, well we are not riding them on our own yet so mom has to push.

But it is just the most fun to be pushed!!!

Book Review: You are Special

You are Special. By Max Lucado

Max Lucado has created a world of Wemmicks (little wooden people) and this story is about a character called Punchinello. Wemmicks give one another stars if they have done something good or are something good (like being pretty). If they do something that they consider bad (like being clumsy or having chipped paint) then they give each other grey dots. Poor Punchinello was always getting grey dots because he wasn’t seen as good enough by the other Wemmicks. This story really connects with me because I often care too much about what others think and I fear for Matt that he will grow up feeling not good enough because he is not the same as “normal” children. I cry every time I read how Punchinello’s understanding of himself changes when he meets the carpenter who made him – Eli. He tells Punchinello: “All that matters is what I think. And I think you are pretty special…because you are mine.” He also tells Punchinello why the Wemmicks’ stickers don’t stick on another character called Lucia, Eli explains “Because she has decided that what I think is more important than what others think. The stickers only stick if you let them.” What an invitation by My Maker for me to take more seriously what He thinks about Matt, than what others may think. I find this book ministers to me every time I read it to Matt. Highly recommended for every child (and adult).

To see the Amazon webpage for this book click here

Prayer Party

Last week Saturday we had our first PRAYER PARTY for Matt. And what is a prayer party? – it is a fun way of bringing friends and family together to pray for Matt. This one was at breakfast time so the prayer was accompanied by muffins and a good cup of tea or coffee. The next one may be an afternoon prayer party with cakes and biscuits. Or an evening cheese and wine.

There are 2 main purposes for these Prayer Parties. Firstly we have been feeling that we need to be more intentional about praying for Matt, and to get prayer for ourselves. We must be honest and admit that we still have some questions about prayer – why pray if God really knows our needs? How does prayer work…does it change God’s mind? And surely God is committed to Matt’s best anyway so why does He need us to ask for Matt’s best? Even though we have these uncertainties we know that Jesus prayed and we are keen to follow His example. We trust that He will teach us more about prayer as we journey down this road.

Secondly we felt that we needed to allow our friends and family to support us – to hear our struggles; but also to share in our celebrations in terms of raising Matt. We realize that sometimes we may come across as though we are doing fine and coping all the time. We don’t always find it easy to share our challenges – especially when we are in social settings it is sometimes a bit awkward to talk about serious (often tear-producing) life issues. So the Prayer Parties give us the space to be real about the good and the hard things we face when raising Matt.

This first Prayer Party was so refreshing and comforting for us. The actual prayer time
was a bit chaotic because there were also 3 exuberant toddlers and a cute new-born joining in the party. But in the midst of the muffins being thrown on the floor, the toys being fought over, the cats being chased – not to mention the havoc the 3 toddlers also caused :) - we felt God’s rich blessing and presence.

Red shoes

This last month we bought Matt some shoes that will help him to stand and soon to walk. Our physiotherapist recommended them. They are bright red with cute yellow laces - very funky. The shoes support his ankles well so he feel more stable. After a day or so of being unsure as to what were on his feet, he has really taken to them. He even sits still for me to put them on his feet. I think he enjoys wearing them because they certainly have helped him feel more confident in standing.

The greatest of humanity’s riches does not consist in money or possessions but in loving and united hearts, the strong supporting the weak while the weak call forth the true humanity of the strong as they help them discover their hearts and their compassion.

-Jean Vanier, Our Journey Home, p. 200

Blessed be His name

On thursday night my work colleague and friend lost his child, Anele. Anele suffered a very severe asthma attack and died as his parents tried to race him to the hospital. No parent is made to endure this. My heart aches for them. In times like these I am drawn to the words of the following song - where the fullness of life and the sorrows of this world are acknowledged. There is hope that God is still God...in the good AND in the heartbeaking times. I have sung this song many times in my dark moments, today I sing it for my friend and his wife and their children.

Blessed be Your name
In the land that is plentiful
Where your streams of abundance flow
Blessed be Your name

Blessed be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord,
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun’s shining down on me
When the world’s all as it should be
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord,
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

(Beth Redman and Matt Redman)

Learnings

We have recently joined an internet based chat site that functions as a support group for parents of children with RTS. I have found the topics of discussion interesting and the archives of previous topics very helpful.

Last week I posted my first question to the group. I wanted to know about other people’s experience of how RTS kids learn new things (like learning to drink from a sippy cup or getting used to new food textures) - either through the parent using repetition on an ongoing basis or through the parent waiting until the child seems ready and then introducing the new thing. I was so blessed by the response that I got. Over twelve people responded – most giving very detailed replies. In addition to sharing their thoughts on how their kids learn, they also gave many hints and tips regarding sippy cups and food textures. All are parents of one or more kids - which is time consuming enough. Yet they found time to share about their own learnings and experiences. I am thrilled to be part of such a supportive and generous group.

This is what I have learnt from their responses:

• Each RTS kid is an individual so what works for one may not work for another.
• RTS kids do need LOADS and LOADS of repetitions to learn a new thing.
• Trial and error is a good tool in terms of finding out what works best with your child e.g. finding the best sippy cup.
• As a parent you may feel that your child will never get there but they WILL – in their own time.
• Your child will not learn when upset or stressed out so keep learning experiences fun.
• Don’t force him to do something if he shows that doesn’t want to.
• Be inventive – find different ways of creating learning experiences.
• Acknowledge that transitions (e.g. from bottle to sippy cup) are hard for your child.
• Learning is not always a steady upward curve there will be seasons of plateau but then your child will all of a sudden move up a skill level.
• It is a challenge to find the balance between overestimating and underestimating your child. That is OK, keep going.
• A parent needs to know what she can do and what she can’t do. She needs to know when to bring in help from a therapist or someone else.

Strange to think I have never met these fellow travelers on the RTS road, yet I feel so close to them.

Wakey wakey

During the last week our winter weather has arrived. Matt seems unable to sleep with his blanket on him at night, so to keep him warm I put on a nice warm fleecy baby-grow over his usual pyjamas. The last few mornings Matt wakes up and calls me (by crying) into his room and this is the adorable sight that greets me.

Matt learns to climb the staircase

The washing machine

The Washing Machine is to Matt what Big Sceen Movies are to us adults

9th April 2008

Dear Speech Therapist

Thank you for the assessment report that you and your students carried out on our little Matthew. We so appreciate the time and the effort that was given at no charge and we really do look forward to ongoing partnership with you. I recognize your (and your students) deep commitment to helping children reach their full potential in communication.

I want to share with you a little bit of my experience of being a mother of a child who has speech delay. In so doing I will also comment on my experience of the assessment report which may be of value to you as you seek to empower the parents of the children with whom you work.

Having a child with delay can be a very hurtful experience whilst also being an enormous privilege. When I was first told that Matt had a syndrome and would be delayed, I did not know what that meant. I feared the worst – that he would never be able to do anything, never be able to connect with me, never be able to feel love or express love. As he has grown and developed, each milestone is like the BIGGEST gift and each is a REASON TO REJOICE. This is the privilege – to watch the miracle unfold, to see him become all he can be.

When I am with him, alone, we have so much fun. I don’t see him as delayed or different. He is my Matt and I am helping him to discover the next step in life – whatever that may be…to crawl, to taste something new, or to learn what ‘clap’ means. I don’t feel sad or discouraged when it is just him and me.

Your assessment report was positive in that it helped me recognize that certain of his behaviours do indicate that he is moving towards communication. This was encouraging. I also found that the recommendations empowered me with information about what I can do to help him reach his potential.

The hurtful part of raising a child who has delay happens when we are around other children of similar age to Matt. There the delay becomes so apparent. No one can deny that he is different, that he is not the same. My heart breaks when I see what other children his age can do. I have to fight back tears. I have to muster all my energy to counter the discouraging thoughts that tell me “Matt is not good enough, Matt is a failure, Matt is so far behind and is therefore worth less”.

My only weapon against this discouragement is to not compare Matt. I have to choose, every time I see another baby or toddler, to not compare. I actively speak to myself saying “Matt is doing fine. There is no point in comparing my Matt who has part of one of his chromosomes missing, with a child who has all his chromosomes. If I make this comparison then I may as well compare a child who has an amputated leg with one who has full use of his leg and expect them to run the same distance.” This is what I tell myself – often, if not everyday.

In the light of my ongoing, daily battle to NOT COMPARE Matt, you can imagine the discouragement I felt when I read the following in your assessment report:

“Mathew was placed in the 3-6 month age group in terms of communicative ability. He is emerging at a 6-9 month level.”

I fully recognized that your report was not intended to discourage me, but I found the comparison with normal unhelpful and disheartening. I am aware of his delay, but I am equally aware of how helpless I am in terms of fixing him and somehow making him “normal”. So even though it is standard practice in the medical world, I would rather we don’t even compare him to “normal”. I recognize that as a speech therapist the age related milestones provide you with a bench mark. My recommendation to all therapists would be that they note this in their own files, but omit it when reporting to parents.

I was so encouraged reading that book you recommended “It takes two to talk” (Pepper and Weitzman) because the authors were able to outline the stages of communication development (Discovers, Communicators, First Word Users, Combiners - see page 4) without linking it to age. I was able to plot which stage Matt was in and then get input on what I could do to help him move on to the next stage. That was empowering and encouraging.

I am certain that, similar to my profession of social work, speech therapists do not work with a child in isolation but spend time and effort in engaging the parent and building partnership with the parent. I am hoping that my perspective expressed in this letter can be used to help you and your speech therapy students to have a deeper understanding of the impact of assessments, and to word assessments in such a way that harnesses hope and action from the parent, rather than unintentionally inflicting discouragement and despair. I use the word unintentionally with great sincerity because I have NO DOUBT that you and your student’s motives were only to encourage and empower us as parents.

I really look forward to your response to this letter and to our ongoing working relationship.

Kind regards,

Jacqui

Small steps versus mini-steps

About 2 weeks ago we met with Matt’s speech therapist who has experience with children who have feeding difficulties. It was a helpful session where she was able to point out what we need to do to get Matt to tolerate texture and to learn to chew. First: use a baby tooth brush (it looks more like a small stick with a textured rubber top) to rub Matt’s gums. Second: use the Lateral Feeding Technique of popping a small bit of very chewable food into Matt’s cheek between his gums thereby helping Matt to learn how to chew whilst avoiding the gag sensitive middle and back part of the mouth. “Easy!” I thought – “I can do this”.

Armed with these steps I returned home to put them into action immediately. I bought a baby tooth brush and tried to rub Matt’s gums – NOT A CHANCE. He wriggled out of my reach, pushed the brush away whilst vigorously turning his face from me. He would not let me near his mouth regardless of how much I begged, pleaded, forced, or cajoled.
Later we tried the Lateral Feeding Technique – as soon as my finger slid in along Matt’s gums he GAGGED and proceeded to VOMIT all food that he had consumed in the previous 5 hours.

I am learning that what seems like a small step is actually a big step. I have to find the tiny mini-steps between where Matt is now and that “small step”. So our first mini step was to make friends with the toothbrush and play with it. The second mini step was to let Matt put it in his mouth. He was a lot more welcoming of the toothbrush when it was on his terms. Third is to dip this toothbrush in his favourite pureed fruit and offer it to him as if it were a spoon. Then he is very eager to endure it in his mouth, once even allowing me to slide it along the side of his gum. As for the Lateral Feeding, I’ve put that on hold until he can better tolerate foreign objects in his mouth. I’m hoping the toothbrush process will help with that.

We are returning to the Speech Therapist on Monday where she is eager to help me work out other potential mini-steps that will slowly move us towards that first small step.

Being who God made him to be

On Sunday Matt and I went to church without Lloyd as he was working at the hospital. Our church is very relaxed and most of us with toddlers sit at the back of the church on the floor where the kids can roam and play without disturbing the rest of the congregation too much.

We were joined by a lady with whom I am in the very early stages of friendship. She is in her late 20s, walks with crutches and has a severe chronic illness. She has a gentle spirit and loves children. She sat down next to me and started to interact with Matt. I noticed how stressed she was looking but couldn’t really ask her about it as the service had started. Although Matt does not know her well, he warmed to her immediately. His warm smile encouraged her to start playing with him. Soon she was lying on her back, Matt sitting on her tummy staring intently into her face. Every time she lifted him in the air he would giggle with delight. I left them to play and focused on the worship. About 10 minutes later she and Matt had finished playing, and Matt made his way back to me. I looked up at my friend and I was surprised to see how calm and serene she was looking. No more strain in her facial muscles, only peace. As Matt crawled towards me I realized that his interaction with her had been more than play. Matt had been ministering to her – by him just being who God had made him to be. In that moment I felt so privileged to by Matt’s mother.

"Yet it did not fall"

It is not that I have become a pessimist, it is just that I am realizing more and more that there are going to be serious times of struggle and challenges in EVERY PERSON’S LIFE.

In the last 2 weeks a friend of ours was diagnosed with cancer and other friends lost their 11 day old child. And that is just in my little friendship circle. All around the world people are facing SERIOUS trials.

The crazy thing is, is that the world we live in doesn’t seem to recognize this. All the adverts and media tell us that we should focus on getting more stuff, on looking better on the outside and on saving money for ourselves and our future. But what about building a good inner CHARACTER that can weather the storms of life? What about digging deep roots into our Loving God who will never give way and never change and never leave? That is what we all should be doing so that when that day of trouble arrives, we don’t break down, we don’t lose it, we don’t fall apart. Rather we endure the pain, disappointment, and loss with healthy grieving, strength and dignity. That instead of being crushed by those incidents we become stronger, more compassionate and more grateful for the good we have in the midst of the trials we face.

Jesus: "Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.” Matthew 7: 24-25

He understands me

Two weeks ago Matt had his first assessment by a Speech Therapist. (Actually it was by 3 final year Speech Therapy students in one of those observation rooms with one-way mirrors. They were being supervised by a well respected Speech Therapist – in case you start wondering what we are exposing our little Matt to.) The students were helpful, but they did ask us quite a few questions about Matt’s understanding and his ability to express himself. It got me thinking. I was not really, really sure that Matt understood me. Sometimes when you asked him “Where is dad?” would he turn to Lloyd, but not always. Sometimes he would crawl towards me when I said “Come Matt”, but not always. So I thought he might understand me, but was not 100% convinced. I longed for the day when I would know for sure that he understood something I said.

We have been trying to teach Matt to clap. Whenever we clap he puts his hands over our hands and enjoys us doing the clapping, rather than him mimicking us by clapping on his own. This last week I was playing with Matt on our bed. He was lying on his back and I leaning over him, tickling and kissing him. I started clapping my hands and instead of putting his hands on mine, he clapped on his own! I was so excited I said “Matt more clap” and then he clapped again. I wondered – does he understand what I am saying? So I said again “Matt more clap” and he clapped again! I thought – this is could be coincidence let me ask one more time to see if he really understands. Now at this point he was getting a bit bored so he was turning onto his tummy getting ready to crawl away. But I needed to see if he understood me so I said for a 3rd time “Matt more clap” and he turned around, faced me, looked me in the eyes and clapped!!!!!!! I squealed with delight. Tears streaming down my face I hugged him. He understands me.

Like water in a desert place

I didn’t even realize how alone I had been feeling. I had not recognized that there was a deep sense of isolation in my soul – I know that my life changed when Matt was born. I know that my path has been different to those of my friends who also became mothers. I know that my joys and sorrows are not all the same as theirs. I know all that, but I did not realize how much it was chipping away at me, at my sense of being, at my sense of belonging.

But God knew. And I believe that it was by His leading that I came across the blog sites of 4 mothers who have children with RTS. I have looked at the RTS websites in the past and seen that others are also travelling along our road, however it does not compare to reading a blog where a person shares the every day, as well as the profound thoughts and experiences of parenting a child with RTS. I spent a few days reading each blog from the beginning to the end. I wept as I connected with their pain and their joy. It was in those moments that I found sameness and belonging – even though continents separate us. Their stories were like sweet water to my lonely, dry, and thirsty soul. I thank God for bringing me upon their path. I thank God for technology like internet and blogs. I thank God for revealing my loneliness but in the same breath blessing me with belonging.

My prayer is to find a way to connect with those in South Africa who have children with RTS. Statistically they must exist. I look forward to meeting them one day.

The cousins

In February we spent two weeks in Pietermartizburg on holiday. Matt and his cousins - Jonanthan and Christopher - got to meet each other for the first time. They really seemed to enjoy getting to know one another.

I know my folks want me to eat more, but this is ridiculous!