My Child Has A Hand Difference
Toni and Hedge have two beautiful daughters, Rebecca and Jessica. During April and May they spent two months in isolation in Melbourne and have experienced both challenges and joy in spending so much time at home together.
The family joined Aussie Hands almost 10 years ago, just after daughter Jessica, was born with a hand difference. After being advised of the option of amniocentesis – testing for genetic or chromosomal abnormalities – or a termination at 20 weeks and deciding on neither, Jessica was born.
Toni explained: ‘Jess was born 2.5 weeks early, a perfect angel. She was born with only half a palm on her left hand, with no fingers but with some nubbins.’ Toni said that surgery was recommended for a double toe transplant to enhance functionality in Jess’ left hand. They struggled with the decision about whether or not to proceed, worrying that they might regret it later.
While on the surgery waitlist, Toni and Hedge joined Aussie Hands and met other members in the same situation. One family from Gippsland with a nine-year-old said that it was the ‘short term pain for long term gain’ that helped them to decide for their child to have the surgery. Jess’ fingers were fully functional after a year of recuperation and she has never looked back. Jess now loves to run, compete at athletics, play footy, soccer, gymnastics and karate and has won two basketball premierships with her team.
‘Being a member of Aussie Hands has really helped us and Jess. The social support has been fabulous, and we enjoy meeting other parents and discussing challenges and how to support our kids,’ added Toni.
Last year, the family spent three months in Canada, America, the Caribbean and New Zealand on holiday together. This amazing experience proved fortuitous. Toni said: ‘Building on the three months we had away together helped with being in isolation and I think we have done reasonably well. We have our challenging times but overall, I feel like it has been wonderful to spend so much time together. Particularly as they are getting to the age where we are not that interesting anymore.’
Adapting to isolation has impacted everyone in some way and it is interesting to see how others coped and managed. Toni continued: ‘A typical day in isolation started at 7am for Hedge and I, the girls get themselves breakfast, watch a little TV, and then start school about 9am. We had lunch together at 12pm and I checked in on them doing their schoolwork a few times a day. And most days there was a session of yoga, play, baking or something else for fun and well-being. We tried to get a 30-minute walk or bike ride in after 4pm and before dinner if possible.
‘The girls played together well, a favourite activity was getting out on the trampoline. We enjoyed doing puzzles, playing board games together and watching movies. We have two cats and they are great company. They also liked contacting their friends. The baking has been great to learn new skills and specialties are banana choc chip muffins, triple choc chip cookies and scones. They have also learnt to sew – beds for their dolls and scrunchies. The girls enjoyed doing yoga together as well as completing two virtual karate lessons a week.
‘We are lucky as the girls are in grade 5 & 6 so they are relatively motivated. The school did an excellent job. There was a welcome video from their teachers each morning and a clear presentation that outlined their work for the day focusing on reading, writing and maths, with a specialist (French, music, art and PE) and wellbeing classes. They complete the tasks and we reviewed any concerns together during the day or after I have finished work.’
Having a routine helped, particularly having two parents working full-time from home with two girls trying to get schoolwork done. There was a definite strain on the internet! Although there has been challenges there have been some fun things that the family have managed to do while in isolation.
Toni shared: ‘We went biking and shooting some hoops at the local basketball court; we had a Harry Potter movie marathon one weekend; defeated all the villains, including Lord Voldemort, when playing the Harry Potter: Battle for Hogwarts game with the seven rounds taking us around 24hrs over two weekends to complete!’
Jess hasn’t needed any additional support for home schooling but had some difficulty with a PE lesson called ‘down-ball’ as she doesn’t have the same coordination in both hands. ‘We received a single hand recorder from Aussie Hands that she has been using for the last two years that has been fabulous but we don’t bother with NDIS funding as we don’t see Jess’s hand difference as a disability and normally answer ‘no’ when we are asked that question. However, just before the pandemic Jess broke her wrist when skating at the local skate park and they had to make two trips to the hospital during isolation – once to get the cast on and then to get the cast off. We had to do temperature checks, hand sanitising and physical distancing to minimise risk for people in the hospital. But no masks were needed,’ added Toni.
As restrictions are easing now, it is interesting to look at the positives that families are gleaning from the isolation experience. Toni said: ‘Even though we always had dinner at the table and were a close family already, we have become more close-knit and understand each other better now.
‘What helps us the most is to find things that everyone is passionate about and enjoy doing those things together,
to find some ‘individual’ or alone time to find your own happiness, get out of the house when you can to get fresh air
and move around and keep in contact virtually so you do not feel like you are alone .’
Although children are returning to school, we will all continue to adapt and adjust to these changing times. It doesn’t define how Aussie Hands kids will grow and face their challenges, but it reminds us that they are unique, individual stars that are loved and make this world a better place.
‘For Aussie Hands kids it is important to continue to meet and interact with others like themselves – so they learn that although they are different, there are others like them and there is community support. I feel we are very lucky. Our family are well, we are well, we are lucky to have kept our jobs and we have a beautiful family!
‘The best advice we have received is that Jess will find her own way. And she has, as Jess is a resilient, determined child. She works through any challenges she has and usually finds an alternate way to do things,’ concluded Toni.
Thanks to Toni, Hedge, Rebecca and Jessica for sharing their Aussie Hands and isolation story. Toni has served as a Board member for Aussie Hands for several years and has been a great support!
Help Aussie Hands continue to help families like Toni, Hedge, Rebecca and Jessica by making a donation.