Sunday, December 22, 2013

22nd December 2013

In the crazy lead up time to Christmas, we have been blessed to have a week's time out at the Ronald McDonald Family Retreat at Forster. These cottages, on the riverside, are just beautiful and were made possible by the very generous people and businesses in Forster and surrounding areas. 

We are so very grateful to everyone who has contributed to the establishment and on-going upkeep of this retreat. It has indeed been a place of respite for our family. This break away has been another crucial part in the restoration our family has been experiencing in these past two and a half months since Victoria stopped having treatment. 

One simple example relates to this boat, our Walker Bay dinghy. We have not used this dinghy since the week before Victoria was diagnosed, almost three years ago.

Life has been so hectic and unpredictable in the last three years and neither Ken nor I had the energy or desire to launch and use this boat. Yet now things are so different. We all had a great time using it this week at Smiths Lake, south of Forster. Marshall and Charlotte improved their rowing skills in this magnificent location.

The children have enjoyed hanging out together (well most of the time), without the interruptions of hospital visits for treatment.

Marshall has loved exploring on his Christmas bike, taking time on to reflect on whatever 10 year olds reflect on!

This time off treatment has given Victoria an opportunity to enjoy aspects of her life without being so worn out by the hospital routine, and so physically tired due to low immunity. You can see the difference in her face. Here is a school photo taken in March this year.

And here is a photo taken a couple of week's ago.

And check out the back of her hair!

Now a full head of hair once again. Praise God!

Personally I have used this time to evaluate how I am travelling along this journey. Having made it this far, I felt it was time for some reflection and also some consolidation and preparation regarding the future. 

In terms of reflection, living in survival mode for so long takes a toll on some relationships. Expectations are unmet, often because they are unrealistic! Words are said in moments of high stress, words that never should have been said at any time. Understanding of and empathy for other peoples' worlds is limited as you try to navigate through your own circumstance. Relationships can definitely be a casualty of a crisis. I took the opportunity whilst a way this week to reflect on my relationship with my Dad and how it has been restored over the past couple of months. I wrote down my thoughts and submitted it to ABC Open. If you are interested in reading a story of restoration, please click here.

In terms of preparation for the future, I attended a Carer's workshop last month. The workshop focused on how to look after yourself when you are caring for someone. It split life into 4 areas, spiritual, physical, emotional and social. It looked at ways of building support and resilience in each of these areas. For myself it confirmed that the spiritual aspect of my life had been the key to getting through these last three years. The inner strength I gained from personal devotional time with God each morning. The wisdom God had given me in determining what steps we needed to take as a family each day. The peace and assurance God had given me on the not so bright days. The knowledge that God would provide all that we needed whether that was practical help, emotional support, finance or a holiday! God has definitely been the center of this journey, my Rock, and my refuge. His grace has certainly been sufficient on the days when I forgot that He had it all under control! He has taught me how to be thankful in all circumstances. Hebrews 13:15 sums it up ..

Through Him, therefore let us constantly and at all times offer up to God a sacrifice of praise, which is the fruit of lips that thankfully acknowledge and confess and glorify His name.

This course also reminded me that the physical and social aspects of my life had received very little attention during these past years. So now I am more than making up for that, especially on the social front!

Thank you again to everyone who has helped us in so many different ways during the past year. We are so absolutely grateful to you all and so blessed to have you in our lives. The victory we are witnessing is your victory too. Let us all offer up a prayer of thanks this Christmas to God and His faithfulness. Merry Christmas from the Robinsons.

And the Word (Christ) became flesh (human, incarnate) and tabernacled (fixed His tent of flesh, lived awhile) among us; and we [actually] saw His glory (His honour, His majesty), such glory as an only begotten son receives from his father, full of grace (favour, loving-kindness) and truth. John 1v14 (AMP)

Monday, December 2, 2013

2nd December 2013

Praise God for the very different Christmas experience we are having in 2013. This very day last year, 2012, Victoria was in hospital with a high temperature and we were utterly exhausted in so many ways!

This year we are still utterly exhausted, but for very different reasons! For reasons of celebrating and enjoying life in so many wonderful ways! God is so faithful.

Victoria had the opportunity to help out with the training of some hippotherapists a couple of weekends ago. She couldn't wait to get out there on the horses.

This time she was riding Susy, quite a bit bigger horse than Wedge and Sprinkles. I still marvel at this program and how it makes the exercises so much fun for the children.

Riding in the outdoors arena is always a great experience, especially when are facing backwards! As one of the therapists said to me, this girl is full of spunk!

I sat and watched, and of course cried again, at the kindness and generosity of these people.

And if you are wondering about the physical value of this therapy, well here is a tiny insight into what it can do. Before getting on the horse, the distance from the floor to the Victoria's finger tips when she bent over with her legs straight was 30 centimeters. After the therapy session on the horse, the distance reduced to 20 centimeters!

During this weekend we also celebrated Alexandra's 4th birthday. God reminded me of what a blessing she has been to Victoria. A lot of time in the last three years of Alexandra's 4 years of life have been spent accompany Victoria to therapy sessions, chemo treatments, and many different doctors appointments. She has been an absolute blessing, being the best playmate to help Victoria pass the time. Only a handful of times in those 3 years has she lost patience with the attention Victoria has been receiving, a testament to all the wonderful medical staff we have come into contact with who have included Alexandra where possible, and to Alexandra's maturity well beyond her years. We love you Alexandra Fay!

Last week we had the opportunity to be at Sydney at 7am (yes, left home at 4.15am) to participate in the Starlight Foundation's Christmas party. The early arrival meant the children had the added bonus of being on the Sunrise TV program.  

There were a couple of other families from the Hunter region there too. So the children all had fun hanging out together, racing from ride to ride.

To see the joy on the children's faces, made the early morning start well worth it!

Last night we had the privilege of attending the opening of the Special Olympics in Newcastle. It was again an amazing night, seeing the joy in the athletes faces as they were being celebrated!  Another event to broaden our children's appreciation that we are all different, and we are all God's children, loved unconditionally by Him.

In amongst all these activities too we have attended the Camp Quality Christmas Party. I have said it before and will say it again, I do so love this organisation. Through Camp Quality Marshall and Charlotte have had the opportunity to start building another set of friendships with children they share a unique bond. These children understand the impacts of living with a child having chemotherapy. They understand the impacts of having one parent and their sibling in hospital for nights at a time. They understand the chaos and stress it brings into the family. They also understand the need to make the most of these wonderful opportunities to escape and have fun. Without Camp Quality Marshall and Charlotte would not have had the time and  place to build such an important support network.

So we are definitely making the most of this time with Victoria not having treatment, and a believing for it to be a long time! Last week, God drew me to this scripture, Psalm 91 v 14 and 16. At the weekend, one of my amazing Christian friends encouraged me at the weekend to claim this scripture specifically over Victoria's life, by inserting her name into the scripture. Please stand with us and claim it over Victoria's life as she lives out each day in victory in Jesus Name.

Because Victoria loves me, says the Lord, I will rescue Victoria. I will protect Victoria, for Victoria acknowledges My name. Victoria will call upon Me and I will answer Victoria. I will be with Victoria in trouble. I will deliver Victoria and honour Victoria with long life. I will satisfy Victoria and show Victoria my salvation.

Thank you for standing with us and upholding us in prayer.