Shopping for a friend’s birthday present this week, I stumbled across a gratitude journal. The idea of the journal is to find and record three things each day that you are grateful for. There have been times over the last five years when finding even one thing to be grateful for would have been difficult, let alone three, but despite all the heartaches we have encountered during this time, there have been many blue skies among the clouds.
Our journey through Aidan’s disease and Anthony’s car accident could have been considerably worse. So today I have put together a list of things I am grateful for in relation to Aidan’s illness (in no particular order).
1. Hearing Aidan say “I love you mum” – I never thought I’d ever hear those words from him and no matter how many times he says it, I never stop loving it.
2. Being able to watch Aidan grow – his progress may have been slow but watching him development is both unexpected and amazing. I know we have been blessed to have him with us this long. Every day with him is another day to be grateful.
3. Learning to be a different kind of parent – parenting a child with a terminal illness means you don’t take anything for granted. Sure there are times when I get stuck in a rut and lose focus on what’s important but knowing I have little time with him makes me stop and be present far more than I would have been. I’m also much more relaxed about letting him be a kid than I would have been.
4. The support of family and friends – it sounds so cliché but we really couldn’t have survived without the emotional and practical support from family and friends. The fact that both our parents are happy to babysit, despite all the medical equipment and medications, is a godsend.
5. A free health system – I can’t even imagine where we would be if we had to pay all of Aidan’s medical expenses.
6. Our medical and nursing teams – I have talked about them many times but it can’t be said enough how lucky we were to stumble on this amazing group of people.
7. The fundraising efforts of friends and charities as well as government assistance – without this financial support I would have to work full-time and have a lot less time to care for Aidan.
8. Bear Cottage – having a respite place to stay means we have been able to enjoy family holidays at one of Sydney’s most beautiful locations while enjoying much needed R&R.
9. Access to once in a lifetime experiences – this has been fantastic not just for Aidan, but for Anthony and I as well.
10. Meeting the most inspiring people – particularly families of other sick children. I’m continually in awe of the resilience of people.
11. The internet – not only do I have a great Facebook support group but it has opened up opportunities to access better equipment from overseas.