Friday, September 26, 2008

Wake up, you are 2 years old today!

Matt was woken up early on his birthday morning because his dad wanted to be part of the present-giving before he went to work. Matt was initially dozy , but he soon perked up as he realized that something fun was happening.

Can I go back to sleep please??

Hey what is under here?

Wow! WOW! I can't believe my eyes!

What is this thing?

How does it work?

Hey look, I can push it and it rolls forward!

Oh is this how it works, I should sit on it?

This is fun! I like it when dad pushes me, I'm gonna have to learn how to push myself. Hhmm I like birthday presents.

Thursday, September 25, 2008

Hope, love and happiness can change the brain

In a study to be published this month in Neuron, Dr. Eric Kandel, a Nobel laureate and neuroscience professor at Columbia University, found that positive emotions -- safety and security -- affect learning capabilities of mice."Behaviors and thoughts that relate to hope, love and happiness can change the brain -- just as fear, stress and anxiety can change it," Kandel says. "It's completely symmetrical." (Quote from Los Angeles Times, 1 September 2008 )

CHANGE the brain!!!!

Change THE brain!!!!

Change the BRAIN!!!!

When I read the above passage I was blown away by the implications of it. If I raise my Matt in a family and home that is hopeful, full of love and joy his brain will be different than if I raise him in an environment where I give into my fears, depression and stress related to his syndrome.

That is HUGE!!!!

This information brings such hope because it means that there is so much that Lloyd and I can do to make Matt’s life – and even brain – develop more positively.

Yet, this information comes with a huge weight of responsibility for us to truly let go of the negative emotions (fear, stress, and anxiety) that many of us raising a kid with special needs battle against.

I am deeply thankful that I do not need to pull this off in my own strength. The God that I serve is the God of love, in fact He Is Love. He tells me to cast all my cares on Him. He promises - in the face of anxiety - a Peace that passes understanding as we turn to Him in prayer. The gifts of His Holy Spirit are Love, Peace, Joy (amongst many other cool things).

May Lloyd and I always snuggle close to Jesus so that He can pour His goodness through us into our home and into Matt’s life.

Monday, September 22, 2008

Look at all the things I did today!

Today I finally remembered to take my camera with me to Matt's physiotherapy session. I am glad I had the camera because it was a full session with Matt engaging in many varied activities... Check it out

Yes, that was just in one session. Matt was tired at the end but very content and rather proud of himself. Thanks Pam for your wisdom, skill, enthusiasm and energy

Tuesday, September 16, 2008

Free from fear

I have learnt an important lesson about how my faith can influence my parenting. For a week or so Matt has been slowly been trying find his confidence after his fall. We have been trying to help Matt build his self confidence by focusing his attention on tasks that he has mastery over, rather than introducing new challenges. Despite this Matt still appeared to be very fearful of trying to stand or walk.

On Friday I was leading a bible study which focused on fear. We learnt that fear is not from God, in fact God tells us not to fear. We learnt Jesus can truly break the power of fear in our lives, and how instead we can live with faith, courage, strength and boldness despite our circumstances. That evening when I was putting Matt to sleep I felt the Holy Spirit nudge me – “Matt is living in fear, and fear is not God’s plan for him. Pray for him – just as you prayed for yourself this morning”. And I did just that – I prayed that Jesus would set Matt free from fear, and instead fill him with courage and boldness knowing that Jesus was holding his hand. It was a most special moment where I truly experienced the presence of God.

Over the weekend we noticed that Matt was more willing to try to stand. He even enjoyed some “fall walking” – this is when Lloyd and I sit a meter apart and Matt walks from one to the other, however his walking is more like falling forward with feet moving quickly to catch up with is body. “Fall walking” requires fearlessness as one must feel out of control. At his physiotherapy session on Monday he was boldly trying new activities and enjoying more challenging tasks.

I am thrilled to see Matt embracing challenges with courage. I am glad he has found his self confidence. I am also humbled and joyful that God can be such a source of support for us in our parenting. I am inspired to be more intentional about praying for Matt so that he can become all the person that God has created him to be.

Here are some pics of Matt bravely standing and then "fall walking" to his dad.
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: 13

Thursday, September 11, 2008

Where in the world?

It has been just over a year since we started Matthew’s blog. What initially started as a therapeutic canvas on which to process our thoughts and feelings has become so much more. Friends and family can keep up to date with the latest in Matthew’s life and our journey with him. And we have made many blog-buddies: families who also have children with RTS – who share the same struggles and fears and joys and above all just understand. I am really proud of Jacqui – the main contributor– who has blossomed in her writing skills and I know her words and wisdom and wit have touched many.

Below is the map of the visitors to the blog for the first year – as someone who loves maps, I am intrigued and surprised by the distribution of the dots and would love for some of the people who visit to let us know who they are, and how they stumbled across our site hosted down here on the tip of Africa.
Posted by Lloyd.

Monday, September 8, 2008

Humpty Dumpty had a great fall

Matt was being really brave and stood all by himself. He literally was all by himself because I was on the other side of the lounge. (Up until then he would only stand when he was safely within my reach as he has not learnt how to sit down once standing) I turned to see him standing proudly and then slowly fall backwards - bashing his head on the TV cabinet and front teeth going into his lips. Tears, screams, blood, hugs! We were both quite traumatised by this event - last week Thursday.
Since then he has not tried to stand again, even when mom or dad are around.
His confidence is gone!
What a big role self confidence plays. I know that Matt can stand, he's already succeeded. His body - his muscles, his bones, his balance - is all there, ready to stand. Yet this thing of confidence in self is so key. You hear people talking about "building up young people's self confidence" and now I truly get why it is so vital. One can have all the resources in the world, but if one doesn't have self confidence one may as well have nothing.
My prayer is that we as parents would always be more passionate to help Matt see his strengths rather than focus on his challenges.

Wednesday, September 3, 2008

Hope for the future

A couple of nights ago we listened to a CD that my brother had given me months back. He had heard this talk on our local Christian radio station and had ordered it for me. It was entitled VICTORIOUS LIVING. Now I was expecting a well-known Christian leader to give us the “5 steps to victory” or something similar (yawn – I don’t do steps, but that’s another story). I was completely blown away when the hosts introduced the speaker as some one who had cerebral palsy. His name is David Ring. As he started talking I struggled to follow because he is not able to fully pronounce all his words, but soon my ears adapted. He shared his life story – filled with tragedy of losing both his parents and experiencing much rejection. Yet as a teenager he discovered that God really loved him despite everything – and this changed his whole life. It’s didn’t take away his cerebral palsy but it meant that the cerebral palsy was not going to limit him. Today he is an evangelist – he has spoken at thousands of gatherings, encouraging and challenging people to live their lives to the full.

I was blown away.

I was blown away that God could truly use David, with cerebral palsy, in such a dramatic way. This is something that I have wanted to believe in for Matt. Not that he necessarily becomes an evangelist travelling the continent, but that God has plans and purposes for his life, regardless of his medical diagnosis. Now I am convinced of this in the deepest part of my soul.

I was blown away by how God provided for David even when his mother died. This is my greatest fear – that I would die and no-one will love Matt the way that I can. But the truth is that God loves Matt more than I do and He will provide. That fear in me was quenched as I listened to David share about God’s faithfulness to him.

I was blown away by how God did for David more than any one could think of imagine. In fact his family had told him that he mustn’t even think of marriage because no-one will want to marry him. Today David is happily married with 4 children! I felt a deep challenge that my love for Matt must never become a cage (even though I want to protect him), but rather my love should be a springboard – launching him into all that God has for him, and all that God has created him to be.

I was blown away by the hope for the future that God has restored in my heart. Up until hearing David talk I have been dealing with my fear of the future by avoiding it. You must understand that when you have a child with special needs the future is a Very Scary Place. In my mind I imagined a big iron door between me and the future – I refused to contemplate it, telling myself that “I will deal with it when I get there”. That is how I coped, that is how I managed to maintain joy in the present. To some degree that was helpful, but avoiding the fear is not truly being free from it. Through David’s testimony I felt God lift up that iron door and invite me to look to the future with hope. I was still to remain in the present, but no longer hide from the future and the fears that lurk there. I feel remarkably freed by this – my fear has been replaced by hope.

After the talk finished I googled David Ring – you can check out his website by clicking here. I see he has published a book called Just As I Am. I’m going to try get myself a copy, I suspect it will make an excellent read.

Monday, September 1, 2008

He stands

Yesterday Matt stood on his own, without holding onto anyone, not supported AT ALL - for just over 30 seconds.

We CELEBRATE this milestone!!!

Matt looked so impressed with himself, smiling and then a cute giggle as he eventually fell over.

Matt has been wanting to stand for a while and up until yesterday has not managed it for more than a couple of seconds. Yesterday everything came together for him to achieve his goal. Well done Matt!!!

We will post pictures soon. We did try take some yesterday but they are not that good - I think mom and dad were shaking with joy so nothing much came out in focus.