Driving in the car last week our youngest asked me if there were “different numbers of days in each year”.
“No”; I said… each year has 365 days (choosing to leave out the explanation of a leap year). Gus pondered this answer before asking “why does it feel like this year has less days”?
My heart broke a little bit… you’re not supposed to think the years are going by quickly when you’re only 7 years old.
“Well”; I said… “this year has been really, really busy for our family which makes it feel like it has gone quicker… We’ve lived in 2 different houses and 2 different apartments; we’ve had to set up our old/new house; we’ve helped my parents move states and have been to Lennox Head to stay with them in their new house; Tess has been doing her final year of VCE; we’ve had a new babysitter and helper come into our world; we’ve ridden the roller coaster of having 2 American therapists come and work with Will in our house as well as Will going interstate for the first time to see a new therapist; we’ve been involved with Richmond FC winning their first Grand Final in 37 years and we’ve tried to squeeze in everyday life in the gaps!”
Gus was happy with that response and moved on pretty quickly… but it sat with me for some time.
You see, dealing with an injured or incapacitated family member is bloody busy… it’s time consuming… it’s all consuming!
I’ve been really frustrated with myself this year that I’ve dropped the ball on so many things…updating Will’s community and support network being one of them… staying in contact with friends, getting involved with the kids’ schools, spending time with my little kids and generally just looking after myself. I feel like I am getting no where with anything… nearly 2 years down the track with this injury…that’s not how it’s supposed to be. I’m supposed to be finding my feet - not finding it more difficult, more exhausting, more hectic.
This is no reflection on Will - he’s working hard, he’s social and engaged and continuing to get small gains and changes all of the time…but our routine and our management of our situation… well, I thought it would be getting easier by now.
We’ve been blessed that prior to Will’s accident we’ve never had to deal with chronic illness or injury with any family member. I’ve known many people that have and I’ve always tried to show them great empathy - but I have always assumed that as time goes on they adjust and find a new rhythm and start to make progress.
Now, living it, I’ve discovered it doesn’t quite work like that. As the adrenalin and shock wears off and grief and reality kicks in you get tired… really tired. Despite the supporters around you, you get a sense of isolation… you become overwhelmed and worn out.
This post is not to whinge or to illicit pity - but rather, this post is to shine a light on everyone who is suffering or who is caring for someone who is suffering.
I want people to know that they won’t always tell you how hard it is because they don’t want to be known as “that” person.
They won’t always ask for help because most of the time they don’t even know where to start or they feel like they’ve asked that person one too many times.
They don’t instantly adjust and find a new normal - they just get really good at finding better ways to manage the struggle.
I also want people to know that they won’t view their situation as “all bad” because they’ll have a new perspective and an appreciation for the small things, the good things that they may never have had before.
They “do” love and gratitude and joy pretty darn well… it’s just often blanketed by a layer of weariness!
And above everything else they spend every spare minute praying and wishing for a cure, a miracle healing.
Perhaps I’m making assumptions about others that are not right. Thankfully, I’ve never had any close dealings with cancer, or dementia, aquired brain injury, MND or any one of the myriad of diseases or disabilities that strike people and their families down. But I feel like they would share many of my emotions… and I know, by the sheer number of foundations and charities and events that flood my social media feeds… they are just as desperate for a magic cure as we are.
A presumption again, but if I could guess what they want you to know it’s that they truely wish they didn’t need to ask for help and more then anything they wish they didn't need to rely on the success of scientific research or money raised by a foundation for the future of their family member or friend.
They don’t circulate or promote fundraising activities for any other reason but they are desperate to improve their own situation and to also prevent others from such suffering in the future.
But most importantly, I believe they would want you to know that they don’t expect anything big, anything more than what you can afford to give - for some that’s a positive thought, a prayer, a like, a share… for others it’s loose change and then there’s those in the fortunate position to give significantly more… what they want you to know is every little bit counts.
Whilst Will spends each and everyday focused on recovery through active based rehabilitation - the reality is, repairing his spinal cord with stem cells is the most exciting and promising recovery option for him. Consequently, Will has recently added a new and cutting edge form of therapy to his regime. Will recently went to Newcastle to embark on a program which, according to Neurogenisist Rohan O’Reilly, is a form of “prehab” for stem cell transplant surgery. Stem Cell therapy for SCI is still in trial stages and the research has a long way to go. But, as featured on Catalyst recently, Rohan O’Reilly from Smart Bodies, Smarter Minds is doing some incredible things with the introduction of Virtual Reality and games into an individual’s program with the aim to generate neuroplasticity and plasticity of the emotional and mental systems.
Going interstate for Will was a big milestone in itself - but in his usual way, with a healthy dose of teenage resistance thrown in, Will spent 10 days in Newcastle with some incredibly positive and measurable results.
Who knows if stem cell transplant will one day be a viable option for Will and millions of other SCI sufferers around the world… but if it is, it’s exciting to know that his body will be in the best state possible to recover! It makes us, as a family, feel incredibly fortunate and blessed that all of you have enabled Will to have access to such incredible programs. Fingers crossed the wildly talented, passionate and dedicated researchers led by Australian of the Year 2017, Prof Mackay-Sim, can go on to make the breakthroughs and progress that we’re all praying for.
To support this incredibly important research jump onto the Perry Cross Spinal Research Foundation website to get details of their upcoming event.