Where did the years go?
Today is one of “those” anniversaries. You know, the ones you are kind of glad you got to see but you’d have preferred not to have been on the journey to start with. Really. One of the ones you’d like to forget but it’s too important to. *sigh*
There are many positives I’ve discovered having been on this path coloured with more than a few negatives. However, I’m sure I’m a much better person for it. Well that’s my story and I’m sticking to it. You got that? Good.
Ten years ago I first heard the word tumour uttered by a doctor in reference to my, then, six year-old son.
My first experience of dread as my tiny son was wheeled away, the doors hissing as they shut behind him, for his first CT scan without me.
My first trip in an ambulance (as well as my longest one – ever. An hour and a half that felt like eternity…).
The first time I had ever set foot in the Childrens Hospital, let alone a paediatric oncology ward.
My first meeting (even if it was late evening) with the man who would oversee my lad’s treatment… and deal with me for the next 10+ years through some of the worst of times. He needs a medal I’m sure.
The first time I ever really remember feeling true fear.
But this period of time has taught me a lot and those are the thoughts I’ll keep. Here are just a few of them:
1. Be kind. You don’t know another person’s journey and sometimes the smallest gesture can mean the most. Even a hug. Even a hug from a stranger.
2. Be grateful. No matter how bleak it seems, there is always something to appreciate. You just need to find it. It will get easier to recognise though!
3. Don’t judge. I’m not qualified to judge someone else. So I don’t.
4. Acceptance. Take others at face value. You never know where you’ll find a new friend on this path and you can do with all you can find!
5. Be open-minded. You never know when an opportunity will present itself and you need to be open to accepting it when it does! If I hadn’t been ready to listen when I did, would we be in this same position today? I doubt it.
6. Forgiveness. Not everyone else understands everything you are dealing with. That’s not their fault and it’s not necessarily up to me to make sure they do. I’d much prefer others remain oblivious to all we’ve been through, even if their own journey has been similar. Life is too short to feel bitter about any of it.
7. Faith. The hardest lesson I ever learnt. To trust. To have faith. In myself, my son, my daughter, my networks, our support team as well as others we didn’t know. Sometimes it’s all you have. Hang on to it tight.
8. To take time out. Always. With friends or on your own. Get sleep and plenty of it! We deserve it. All of it without guilt. Laugh, love, play and remember these times always.
9. Make memories. Take your child/ren to places and experience things you’ve never done before. There is always a way if you look hard enough. Take photos. Lots. Smile and plan more of the same straight away.
10. Reach out. When you need it. You are never really alone. Sometimes you need to ask for assistance. There’s no shame in that. Help is out there if you know where to look or ask for it. If we don’t try, we’ll never know.
11. Conviction. Stand up for what you believe in. Sometimes if you have nothing to lose you still have lots to gain.
12. Expect the unexpected. Miracles do happen. Often.
I’m not perfect and I sometimes forget what I’ve learnt. I’m still learning every day, if I wasn’t I wouldn’t be still on this trip!
Ultimately it’s been an upward outcome for us to date.
I have a (somewhat obnoxious, independent and thoroughly frustrating) 16 year-old who is very much alive, even after constant warnings and second opinions that the finality of his condition was a “fait accompli” due to many factors. Rarity, lack of knowledge and understanding of the condition as well as the lack of viable treatment plans with any positive outcomes.
But he is alive and healthy. We are still a family – that may have grown somewhat. We still laugh. Most days. We still drive each other bonkers. But that’s okay. We’re blessed to still have that luxury of time, a decade down the track. I just wish everyone else on their own journeys the same.
To all our friends and loved ones, Thank you. We couldn’t have done it without you. xxxooo