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.