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Isla has her very own star. Tanya’s colleagues at the Disabilities Services Commission organised the naming of her star with the International Star Registry. The name has been registered with the US Copyright Office in Washington DC and held in the ISR’s vault in Switzerland.
Isla’s star, called Isla Elson Donegan, is easy to locate – while not visible with the naked eye it is just to the left of the lower star (Acrux) in the Crux constellation (the Southern Cross). Its precise coordinates are Right Ascension 12h29m2.82s and Declination -62°54’38.04”.
This amazing gift has given us great comfort. Her star is, in a way, symbolic of the idea that Isla is now part of something far greater than we will ever understand. But when we look up at the night sky she is easy to find.
Two weeks ago friends and family gathered together in the gardens at Pinnaroo Cemetery to celebrate Isla’s life and to say goodbye. The day was beautiful and the service as lovely as we could hope for. Reverend Robert Anderson, who we have known for a number of years, conducted the service. Our friends Ian and Kathleen honoured our daughter by reading for her. At the end of the service the children all released coloured balloons into the sky. Everyone watched for minutes as the balloons ascended, a mesmerising and beautiful sight we will remember for the rest of our lives.
 
Dear friends,
We are so sorry to write to you with sad news. An email is very inadequate, but we hope you will understand.
Isla died early on Friday morning. She went very peacefully and she died in our arms. For the last six months she has been wonderful, healthy and very happy. On Monday morning she was admitted to hospital with pneumonia which came on very suddenly. For a few days it looked like she would be okay, but on Thursday night her little body gave up and she began to let go. We lay with her in bed through the night and told her how much we loved her. And then she passed away, quietly and in peace.
We are so grateful for the love and care that Isla has been surrounded by all throughout her life from so many people, right up to such wonderful and far-reaching support for her sensory garden. We will make a very special memory garden now, and Isla will always live on in our hearts and thoughts.
Please give your children an extra big hug today.
With love,
Tanya and Luke
Isla is four! On Sunday morning her friends came over to celebrate. Each of her friends had prepared a story or a song which they read out or sang for Isla. There was lots of fun, birthday cake and presents. Isla’s friends made her lovely cards with tactile pieces that she could feel, and she received lots of beautiful gifts that she could snuggle and touch and listen to. Isla was relaxed throughout the day and she was full of smiles. The next day, on her birthday proper, Isla’s class at school had another beautiful party for her with presents, streamers, singing, and of course more cake.
We are very proud of our big girl reaching this milestone and we are looking forward to another wonderful year with our girls.
Thanks go to the great David Pascoe for his photos below.
 
Isla was one of almost one hundred very special children from across WA who recently received a Children of Courage award from the Lions Club. Isla was presented with her award and medal by two members of Australian’s Olympic rowing team, in a lovely ceremony organised by the Lions and attended by most of the children who received awards, together with their families. Isla’s school nominated her for the award, which was sponsored by the Manning Lions Club. We’re very proud of our gorgeous girl.
A few weeks ago Isla’s great uncle Nick took some photos of Isla and Sabine and entered them into a competition organised by Therapy Focus. The Symphony of Sunflowers is an event that recognises children with disabilities and encourages people to plant sunflowers in recognition of the inclusion of all children.
Nick called us last week and was very excited to tell us that one of his photos had won the ‘best activity’ category of the competition. You can read about the competition here:
http://www.symphonyofsunflowers.com.au/
At Garden Week Nick was presented with two vouchers, one for $750 of soil conditioners, mulch and soil wetters from Richgro, and the other for $250 of plants from Waldecks. Nick donated these vouchers to Isla. We are currently planning a ‘sensory garden’ for the front of our house which we will fill with scented and textured plants for Isla to enjoy. These vouchers will go towards that project. Uncle Nick’s wonderful gift (and photography skills!) will help us to create Isla’s garden. We’ll keep you posted as it grows.
We are so excited that Isla has started school! She attends kindy two days a week at Carson Street School in East Vic Park. This is a local primary school for children with special needs. It has nurses and therapists on staff and all the equipment needed to support children with communication and mobility difficulties.
Isla has four classmates and four teachers in her room. Her teachers are wonderful at finding ways of including Isla in all the classroom activities so that she gets lots of sensory stimulation. Each morning Isla has a swim in the school’s hydrotherapy pool. This is great for her health and her circulation, and it’s also a lot of fun. On Thursdays she has Phys Ed with Mr P who we think she has a crush on because she always has lots of smiles during that session. Whereas each time the class starts an English lesson, Isla falls asleep.
We are overjoyed with Carson Street. We never thought Isla would have the experience of going to school and being in a class with her peers. Her life has opened up, her horizons broadened in ways unexpected but greatly welcomed.
As Isla has grown heavier and taller it has been getting difficult to lift her in and out of her car seat. Our plan for 2010 was to purchase a modified vehicle that can take a wheelchair. Isla’s OT applied to the Motor Industry Foundation, who have a small number of vehicles which they loan to families with special needs. We are extremely fortunate to have received their generous support, in the form of a large van equipped with a hoist. The van enables Isla to travel in her wheelchair, and have her PEG feeds in transit instead of us having to wait up to an hour for them to finish before making trips. .
The Toyota Hiace Commuter Bus has been with us for a couple of weeks now and has made a huge difference to our lives. We realised that we have only been taking Isla out on essential trips, and rarely more than once a day. Now, getting out with Isla is easy. Sabine has her own seat next to her big sister in ‘Isla’s bus’.
Our deepest thanks go to Colin Rockman and the Motor Industry Foundation, and the amazing family who donated the bus. We are humbled by their kindness.
Sorry it’s been such a long time since our last update. We have taken the opportunity in the meantime to update Isla’s website. Now we can write blog entries from home, so it will no longer be so long between posts.
We’d like to thank Peter Herrington for the amazing work he did setting up Isla’s original website, and David Pascoe for creating the new look and showing us how to use Windows Live Writer. The website not only enables us to let people know how Isla is; it has also put us in contact with other families in similar circumstances, and this has been a great privilege.
Isla has been doing very well lately, lots of smiling and laughing. And there have been a couple of major changes in her life – good ones – which we will tell you about in subsequent posts.
If you’d like to be notified when new updates are posted on Isla’ site, just enter your details at ‘Get Updates By Email’ on the homepage. Posts will then go directly to your inbox when they are published.
Best wishes,
Luke and Tanya, Isla and Sabine
Sabine gives Isla a super hug.
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