Monday, November 26, 2018

Definitely a new season

So it's  been a while since I've posted, but now seems like an appropriate time. Praise God we are definitely in a new season. Victoria and I are currently at the School Sports Australia Track and Field Exchange (ie schools national athletics championships) in Melbourne. Victoria has won a bronze medal for the 11 year old girls multi-class discus. As you can see in these photos she is a very excited girl! 

What a journey to get here! There are many people who have helped Victoria get to this place, starting 8 years ago with all the John Hunter Children's Hospital therapists that helped her after she had a stroke during the brain surgery. We are so grateful for the time and care they put into her rehabilitation, along with many other friends and family who came to our home and helped out with blocks of intensive OT and Physio.
January 2011 - Left arm and leg splint - still smiling

March 2011 - Hydrotherapy - still smiling

May 2011 - First AFO (Splint)

May 2011 - Constraint therapy - forcing Victoria to learn how to use her left hand again (no smiling - all concentration!)

Since starting school at Belmont Christian College in 2012 (the year in which we found out the tumour was growing again and Victoria had to start 15 months of weekly chemo), she has been surrounded by teachers and students that have prayed for her and supported her on the 'off days'. We are grateful for her sports teacher, Mr Robins who has continually encourage her in her sporting endeavours since kindergarten. In Victoria's words, he has always challenged her to try new things in sport, taught her how to set goals and keeps reminding her not to give up. 


When we found out that Victoria had qualified at the State competition for the nationals Mr Robins arranged for Victoria to have some more technical coaching from a national age discus champion - Ash Blackstock (and her mum Emily), which was invaluable. And there was plenty of laughing too.




I can't post any of my videos from the events in Melbourne, however click here to see a video of Victoria training, practicing the tips she learnt from Ash and Emily.

We are also extremely grateful for the help of the physios and the OT that regularly work with her to ensure her muscles are doing the right things. 

And of course we know that as well as all the hard work, the power of prayer is essential and we are grateful for those who pray for Victoria and those who continue to provide encouragement verbally, in messages and practically. God is building a great team around her. Thank you for coming on this journey with us - the best is yet to come.


After winning the bronze medal, and we were walking to our seats, Victoria asked me, "Are you proud of me mum?" I'm pretty sure I had said that to her at least three times, but obviously she needed to hear it again, so I said, 

"Yes, I am proud of you for winning a medal, but there are also at least 6 other things I am proud of you for ...

the hard work you have put in over the years to keep your body functioning; 

overcoming the fall down the stadium stairs when you hit your head on the concrete this morning; 

getting through the classification process without falling apart; 

not giving up when you kept throwing fouls today; 

being a friend to other competitors that don't find it easy to make friends; 

continually relying on God to get you through each challenge you face. 

Yes I am very proud of you."

On Sunday Victoria also competed in the 11yr girls multi-class relay, for the ACT/NSW team, as the first runner. She was a little bit nervous as she had never run a relay race competitively before (they only do it at this level for multi-class). Here she is on the tram on the way to stadium trying to settle the nerves.

Again I can't post my video of the relay, but her team came fourth. When Victoria came off the track, the first thing she said to me was, 'I want to do it again!'

Unfortunately we cannot all be here to support Victoria at the this competition, but Ken and my Mum and Dad are doing a great job at home, keeping things going. Marshall, Charlotte and Alexandra are often ringing with messages of support.

The experience of coming to this competition has been wonderful for Victoria, not only from a sporting perspective, but also from a personal perspective. The NSW team has about 150 children in it, of which about 42 are multi-class children, so in this environment she is not 'different' but she is part of a large team of children who have all overcome so much physically and mentally to compete in these track and field events. The value of experience cannot be underestimated. So thank you again to everyone who over the years has helped make this possible. 

And we are ever thankful to our God who has never left us or forsaken us throughout these year. He has carried us many many times, and always provided what was needed. He is faithful.

Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us. Romans 8:37

And now an update on my book ... I've had a couple of copies printed to check out the layout etc before doing a larger print run ....


There are a couple of minor things that need to change and then it is complete! What a journey this project has been too. 

My prayer is that this book will be a blessing to many people, not just those people who find themselves on a similar journey to us, but to anyone who is in a situation where they have no options other than to trust God - and the challenge that presents as we fluctuate from belief to unbelief and back to belief.

As I was asking God what to put in this post about the book He reminded me about the dedication page in the book ...


Just in case you can't read it in the image, it says ...

This book is dedicated to our daughter, Victoria Grace, without whom there would have been no story to write. I love you Victoria. Thank you for showing me how to live in victory despite my circumstances.

As I re-read the dedication I realised that once again over these past few weeks Victoria has shown me how to 'live in victory despite my circumstances.'  

In the past couple of weeks Victoria has had some appointments that have negatively impacted her emotionally - lots of anger and tears. Then as I mentioned briefly above, here in Melbourne on the Saturday morning just before she was to go to the classification appointment she fell down the steps in the stadium and hit her head. 

After being checked out by the first aid people, she slowly and carefully made her way to the classification appointment (which has previously been an experience that also resulted in a lot of negative emotion as her level of physical disability is assessed - it is a bit 'in your face'). Thankfully the classifiers were very child friendly, and there was no emotional outfall. 

Then it was time for the discus competition, she was a little shakey on her feet, and after throwing a couple of fouls she looked to me standing at the fence and indicated for me to pray (as if I wasn't already praying!!!!). She knows Who gives strength in moments like these. She didn't give up, kept focused and eventually won the bronze medal.

So despite the years of heartache, pain, disappointment, fear and emotional depletion, I can see God's hand on her life, and our entire family's lives as the years go on and His purpose unfolds. And I am grateful that He has carried us through, continually building a deeper level of trust in Him - learning how to live in victory despite the circumstanced - In Jesus Name.

So if you are local and interested in purchasing a print copy of my book I am selling them (cash only) for $25 (incl GST) each, or $20 (incl GST) each if you order two or more - perhaps you might like to give one as a gift to someone who is going through a similar journey to us (there is lots of practical information in it too) or to anyone who is needing hope and inspiration to just keep going.

If you are not local, I will very soon have my website ready to accept online orders and payments. I'll let you know when this is ready, along with the availability of ebook and audio book.

Initially the profits will cover the outstanding production costs, and then a portion of the profits will go to the charities that have helped us over the years.

For anyone interested, the book covers the first three years of this journey. The table of contents is listed below ...

Table of Contents
Introduction
Chapter 1 The Diagnosis
Christmas Holidays
Reflection – The importance of a shared faith when the going gets tough
Chapter 2 Family, Fun and Fear
Waiting Days
Reflection – Distractions – there is a battle going on
Chapter 3 Post Op Recovery
Hospital and waiting days
Reflection – The Holy Spirit – our Comforter
Chapter 4 Home and Rehabilitation
Emails 8 Feb to 3 Mar 2011
Reflection – Rehab – Conquering and creativity
Chapter 5 More Therapy
Emails 14 Mar to 18 May 2011
Reflection – Creativity in therapy
Chapter 6 New Things and Events
Emails 16 Jun 2011 to 30 Jan 2012
Reflection – Camp Quality meets our needs
Chapter 7 The News We Didn’t Want
Emails 22 Feb to 18 Jun 2012
Reflection – Dealing with disappointment
Chapter 8 Chemotherapy
Emails 19 Jun to 22 Jul 2012
Reflection – The Carer needs to be cared for
Chapter 9 Wonderful Support
Emails 1 Aug to 14 Sep 2012
Reflection – Community, giving and receiving
Chapter 10 Scans and A Big Scare
Emails 1 Oct to 16 Nov 2012
Reflection – Plan B preparing for the crisis
Chapter 11 The Silly Season
Emails 26 Nov to 28 Dec 2012
Reflection – Mothers
Chapter 12 New Year and a Blog
Emails 6 Jan to 24 Jan 2013
Reflection – Writing as therapy
Chapter 13 School and Another MRI
Blog posts 31 Jan to 15 Feb 2013
Reflection – Fathers
Chapter 14 Normal Life
Blog posts 19 Feb to 29 Mar 2013
Reflection – Siblings are a blessing
Chapter 15 Living From Scan to Scan
Blog posts 9 April to 21 May 2013
Reflection – Thankfulness is key
Chapter 16 High Temperatures and Hospital Again
Blog posts 29 May to 5 Jul 2013
Reflection – Practical tips for the home of a child on chemo
Chapter 17 Precious Family Time
Blog posts 12 Jul to 26 Jul 2013
Reflection – The Bible
Chapter 18 The Wish
Blog posts 3 Aug to 9 Aug 2013
Reflection – Charities
Chapter 19 Reality Hits Fast
Blog posts 11 Aug to 19 Sep 2013
Reflections – Keeping the left leg working
Chapter 20 Living from a Place of Victory
Blog posts 27 Sept to 29 Oct 2013
Final Reflection – Three years of learning
Epilogue
Acknowledgements
About Wendy Robinson
Appendix A Scriptures
Appendix B Victoria’s Medical Diagnoses
Appendix C Occupational Therapy Activities
Appendix D One Hour Occupational Therapy Plan
Appendix E Master List of Lists
Appendix F Emergency Hospital Bag Contents Checklist
Appendix G Homecoming Checklist
Appendix H School Booklet
Appendix I Signs for Displaying at Home
Appendix J Home Medical Kit
Appendix K Charities that have helped our family
Appendix L Maintaining and Improving Leg Function
Notes

My sense is that there is a second book to write, and the story is only just beginning!

Anyway, that is more than enough information for now! Thank you so much for staying the distance with us. Please continue to pray for Victoria as she approaches the teenage years and the challenges they can bring. I am going to finish this long post (sorry that it is so long - but there was so much good news to share!) with one of my favourite scriptures ...

But me, I'm not giving up. I'm sticking around to see what GOD will do. I'm waiting for God to make things right. I'm counting on God to listen to me. Micah 7:7 The Message

I pray that God will bless you and your family and give you the strength to overcome and live in victory, In Jesus Name, Amen.

















Friday, July 13, 2018

A hope and a future

For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope. Jeremiah 29:11 NKJV

On Tuesday this week Victoria had her 25th MRI. Yesterday, 12th July 2018, we received the results. The tumour is stable. There has been no growth for almost 5 years now. We have a faithful and merciful God. We continue to declare the scripture from her dedication 10 years ago ...

Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the LORD forever. Psalm 23:6 NKJV

The oncologist is confident that the tumour will not grow now and has ordered one final scan, in 12 months time. Again, we have a faithful and merciful God. We will continue to pray for full healing in Victoria's body, brain and eyes. Nothing is impossible for our God. 

Thank you for standing with us in these past almost 8 years, believing that our God can do miracles, and supporting us in so many different ways. 

For Victoria the last 12 months have been a period of building greater resilience, both in relation to pre-scan anxiety - of which none was evident for this latest scan, praise God; and also in terms of physical training - being more efficient in all movement.

Victoria is often seeking out ways to connect with other children who have disabilities. This might be at the swimming or athletics competitions, chatting to the other children and then asking for contact details so she can communicate with them between competitions.  

Searching the internet and watching inspiring videos of people who are living life despite their physical challenges, is another activity Victoria finds helpful. One of her favourites is the Yes I can, video, an ad for British 2016 Paralympic team.  

Another resource she found was a series on Netflix called, Alexa and Katie, about a high school student having treatment for cancer. I watched a couple of episodes with her, and there were some very real moments, bringing tears to my eyes, grateful to  a team of people who did not shy back from tackling a difficult subject.

Physically the last 12 months have been a challenge too. June 2017 Victoria started experiencing pain in her left knee which lead to an 8 month break from swimming, running and dancing. Not a happy time for a child who loves to be active. However she did a lot of rehab to make her body stronger, and we now have a little mini gym at home now!





Despite the lack of swimming training for 8 months, the time in the gym building strength paid off, as at the swimming competitions earlier in the year Victoria improved all her PB's, some by 12 seconds.


We are looking at ways to help Victoria further develop her swimming. On Sunday we attended an event facilitated by CPSARA (Cerebral Palsy Sporting and Recreation Association) to connect with paralympians, establishing mentor relationships for the young aspiring athletes and their parents. It was a very informative and fun afternoon. 

We are grateful that Victoria enjoys swimming, and always has, right from the very first session of rehab she did with hydrotherapy when she was only 3 years old! 

As Victoria gets older and is understanding more about how her body functions, she is taking more responsibility for maintaining and improving her strength and movement. For example, the OT recommended that Victoria do some regular stretching up of her left arm to help keep the full range of shoulder movement. So Victoria came up with the plan of putting the dippits that she enjoys as a snack, on a shelf high up in the cupboard. This would then force her to then use her left arm and hand to reach up every time she wants a snack - which is quite frequently!


Earlier this year Victoria had the opportunity to be part of a program trialing carbon fibre AFO's (splint) for children. This different type of splint has greatly improved Victoria's walking, enabling her to walk with a more even pattern, expending less energy, so reducing fatigue.

We are grateful to Cerebral Palsy Alliance and NeuroMuscular Orthotics for giving Victoria the opportunity to be part of this trial.

So there has been a lot going on in the past 6 months, and not only for Victoria, but for our whole family. At last we appear to be moving into a new season, with everyone thriving in different ways. It has been a long time coming and we are grateful for this change. On my blog last month I shared about this sense of changing seasons, here is the link if you are interested in listening to it ... New Day Dawning. I pray it is encouraging to you for whatever you may be facing today.

Another little project that has been going along in the background for the past few years is my book about the first three years of this journey. Currently it is in production getting ready for print and e-book publication, and I am recording it as an audio book. For anyone who is interested the audio recording of the introduction and chapter 1 are available for free here.  Hopefully the three versions of the book will be available for purchase by the end of the year. Along with our story the book has a lot of practical information to help families who find themselves in a similar situation.
 
Thank you again for all the prayers, support and encouragement. I sometimes find it hard to believe that I have been saying those same words for almost 8 years! But they are so necessary as we know this is not a journey we can do alone. Please know that you are part of every victory that we have experienced as a family over these years. Thank you.

Yet even in the midst of all these things, we triumph over them all, for God has made us to more than conquerors, and his demonstrated love is our glorious victory over everything. Romans 8:37 TPT