Sunday, June 21, 2015

Living life to the full

Here is Victoria up at the John Hunter Hospital waiting for her monthly port-a-cath flush. We don't like to waste a minute so she is working on her maths homework while waiting. As you can see she is still not phased by the hospital environment, partly due to the wonderful doctors and nurses who are so caring and supportive.

Victoria is continuing to do well in her every day life. Physically she is doing her daily stretches and improving her fine motor skills through the ipad typing. We are focusing on improving bi-lateral movement with arms, and it so happens that cooking is an excellent activity for involving two arms and hands. The bonus is that Victoria enjoys cooking, so there are no complaints about doing that therapy.

Riding for the Disabled is also continuing on Monday mornings. The Regional Mounted Games are on 1st August and this year Victoria will compete 'off lead', which means she will be doing all the steering and horse instruction herself. It is such a fantastic activity for building the core strength, leg, arm and hand muscles. Victoria now has enough strength to give Sprinkles a good 'kick' to tell him to 'walk on'. She is an absolute joy to watch on the horse.

In May we helped out Camp Quality with some marketing for their Dine at Mine national fundraising campaign, coming up in August / September. If you are interested in finding out more about this event or participating in this event, click here . The programs Camp Quality run have made a significant impact on each member of our family, providing much needed family fun and the opportunity through various activities to re-build confidence. Camp Quality activities have also enabled us to connect with other families in similar situations, outside of the hospital environment. We will be hosting one at our home, and our children are also going to host some meals for their friends. 

During this term Marshall, Charlotte and I have been attending a group called 'Sibsrule'. This group 'focuses on building resilient family units that have strong capacity to advocate for the needs of a member of that family relating to disability. We do this by developing skills of functional self awareness, and optimistic communication.'  It focuses particularly on the needs of siblings with a sibling who has a disability. Two out of the three of us were very reluctant to attend the group! However as the weeks passed it became evident that attendance at the group was very necessary, as it provided an opportunity to let more grief surface for each of us - 4.5 years on from Victoria's diagnosis. It has been a very emotional time, yet I believe we are all much more emotionally healthy from our participation, no matter how difficult it has been. The group finishes this week with a game at Laser Tag. I don't think there will be any problems getting them to the group this week.

Talking about resilient family units, here are the children  when we went down to see the VIVID light festival in Sydney. We are so proud of each of them and the resilience they have all developed and the courage they have each shown in their own way. We love to see the strong bonds of love between each of them (of course it isn't evident all the time!). We are grateful to God for His grace in each of our lives and that He is always with us, wherever we go. We know that truth in our hearts.

Have not I commanded you? Be strong, vigorous, and very courageous. Be not afraid, neither be dismayed, for the Lord you God is with you wherever you go. Joshua 1:9 AMP

On Mothers' Day I was given the opportunity to share at church, along with two other amazing mums, some of our journey of having a child with cancer. The theme I was given was - what to do when things don't go to plan. If you are interested in listening to what I shared, please click on this link, and it will take you to the podcast - Mother's Day - Live on the lounge - 10 May.

Victoria's next scan is four week's away, on 22nd July. My mind has started to travel down those dark paths, so it is a moment by moment decision to pull them back on the path of faith and hope. 

We use our powerful God-tools for smashing warped philosophies, tearing down barriers erected against the truth of God, fitting every loose thought and emotion and impulse into the structure of life shaped by Christ. 2 Corinthians 10:5 The Message

I am thinking I will declare this verse every day (and hour if necessary) for the next four weeks! Victoria is blissfully unaware of the upcoming scan, and with three weeks of holidays prior to it, hopefully the anxiety will stay at bay for her. 

Thank you for continuing to pray for Victoria and our family. Specific prayer points at this time include:
1. Peace for each of us, particularly Victoria, as the scan approaches.
2. Victoria to know that God loves her and is always there for her.
3. Complete healing and restoration throughout Victoria's body.
4. Continual emotionally healthy processing of grief for every member of our family.

Ken, Wendy, Marshall, Charlotte, Victoria and Alexandra

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