Thursday, May 21, 2009

Beacons of hope

Their love for each other was unmistakeable. Neil and Bee. He was in a car accident a few yesars ago, which left him with a host of injuries. He has had to undergo a number of surgeries, and is in mostly good health now. Except that his thinking and memory is affected. I met him in 2005 when he came to volunteer at my work place. It was arranged that he help us out because it would be good for his recovery. In return we were blessed by his friendly and positive personality.

Now I see that he has fallen in love. Bee - She can't really manage to walk without Neil gently supporting her. She is beautiful with well groomed hair, face and dress. I can see her mind is sharp, but she struggles to form words in her mouth. She talks, I try to listen and only understand a little. Neil "translates" for her - he understands everything she says. She too was in an accident and her injuries have taken longer to heal.

Neil still comes to voluteer and this week he had brought Bee with him. I met them on their way our of our building so didn't get long to chat with them. But I was drawn to their warmth and obvious love for each other - so tender.

As I work part time I am not always up to date with everyone's news. So I asked a colleague to update me to Neils relationship with Bee. They have been in a relationship for a while now, in fact that have made promises of love to each other and exchanged rings. They are in some senses married, but they cannot live together as the complications of both their injuries would make it too difficult. They both live with their own families - in two different cities! But they don't let distance undermine their love - they travel regularly to visit each other.

I was so moved by their story - their love is a beacon of hope for me, and for my dreams and contemplations about Matt's future. If you read my blog regularly you will know that my deep prayer for Matt is that he will always be loved. I am not necessarily talking about "marriage love" - but just love: "interaction, understanding, belonging, friendship love". In a world where people so often get distracted by outward appearances, ability, success, and power - Neil and Bee's love tells me that there are people who can see past all the outward stuff and love the person on the inside. That is indeed a beacon of hope.

Shades of grey

On Monday I was sitting in a neurosurgeons office discussing whether or not to operate on Matt's spine. It was so confusing...nothing seemed clear cut at all. Lots of shades of grey.

Many kiddies with RTS have something called a tethered spine. If I understand correctly - it simply means that their spinal chord is attached to the spine at some point - which it is not supposed to be. It can result in neurological problems in legs and badder and cause other things that I can't remember. Matt had an MRI scan when he was 1 years old and the radiologist reported that he had a low lying spinal chord but it was not tethered. Recent posts on our RTS support group have made us realise that a low lying chord could be an indicator that it is tethered, although it may not be obviously so. The neurosurgeon confirmed this but was hesitant to rush into surgery in case it wasn't. So more investigations are required - firstly by a urologist to check how well Matt's urinating is working (not sure what that entails yet) and possibly another MRI to see what his spinal chord is up to now that he is older.

Hopefully with these further investigations the shades of grey will be replaced with more clarity. I just hope the investigations are not too intrusive or uncomfortable for my little man.

Sunday, May 17, 2009

Last week was Mothers Day...

Here is a small portion of the day that I managed to capture on camera...

Matt was very ceremonious as he handed over the gifts that he and Lloyd had got for me. He very happly to relinquish the flowers, but was most unkeen to pass on the chocolates - hhmm I know where he gets that from :)

Thank you to my two men for communicating to me that you love me and that your appreciate all I do as a mother. I love you both.

No limits

She had a shy but radiant smile at first. She was one of those people who, when you met her, were invited into her “real” self immediately. It seemed that she did not want to play the social games of “hide and seek”. I was warmed to her quickly. Her name is Jess.

Last Saturday our physiotherapist had invited us to meet Jess and her mother. I had previously heard inspiring stories about this young lady: how she had been given a “no-hope” diagnosis, and how her parents had been told that she would never be able to read or write. Today she can send text messages and surf the net. She has raised money for her personal needs – like buying plane tickets, a keyboard, air-conditioner, and many more useful items – by making and selling beaded angels.

Her mother had a kind smile and was delightfully interested in Matt. I could see that she had a deep and firm strength to her – most likely built through the years of raising a child with special needs. Yet her strength did not overpower her gentle and inviting manner. I enjoyed hearing her share about being a mother to Jess. I was very encouraged.

Although our visit was short as Matt needed to head home for nap, it was a precious encounter. Jess is a role model for me – a picture of how a young person with special needs can develop into an insightful, humorous, and confident adult. Interacting with her has strengthened my belief that we need to be so careful and so intentional about never putting any limits on Matt’s ability or development.

I hope to see Jess again – I have placed an order for some of her beaded angels so I am sure we will.

Saturday, May 2, 2009

Raindrops keep falling on my head

This week Matt and I were leaving a friends place, walking to our car parked about 30 meters away. I was holding Matt and after walking only 10 meters it started raining - and not just the drizzle that we in Cape Town usually get, no, rather it was big, fat drops of rain that hurt as they landed on your head. So I ran the last 20 meters with Matt cowering from the wet blobs of rain. When I reached the car we were both drenched. I practically threw Matt into his car seat, then jumped into the front passenger seat. The rain now sounding like a heavy metal band on the roof of our car. I turned to see if Matt was ok. He was sitting very still and holding both his hands on his head. He had this shocked expression on his face that could only mean: "What on earth was that???!??? How come water was falling on me!! Isn't it only meant for bath?????"

We sat a while in the car listening to the noisy rain, whilst I tried my best to explain to Matt what rain was and how come it landed on his head and why he got so wet.