Where does all the time go?

Time is a funny thing. There are so many expressions in our vernacular about it that we take for granted. Such as… all the time in the world, high time, killing time, a question of time, father time. Idioms that sneak into our conversations without much thought. A favourite phrase - Where does the time go? Impossible to answer and as such I have no idea where time goes.

The ticking of the clock appears so ordered, so measured and unchanging. The sands of time, patiently passing through the neck of the hourglass. I am a teacher and my life for a long time has been ruled by the bell. Time controlled my day, my work, my responsibilities. It represents segments, alarms, appointments, plans, schedules, timetables. As a result, we end up waiting, delaying, pausing, speeding, rushing. Time should be a constant. Once upon a time, I never gave it much thought.

Once upon a time…. I took time for granted. Then my world started to fall apart and the concept of time started to mess with me. The day my son Thomas went in for neurosurgery to remove his tumour, time stretched out for an eternity. A torturous wait of hope and fear and helplessness. The longest six hours of my life. Ten months later, the hospital allocated an eight-week block of outpatient rehabilitation for therapists to work on Tom’s brain injury. It would not be enough time. 40 rehab days is such a short time to get everything back that he had lost. Weeks of frustration, hard work and tears in a race against time to see those first few steps.

So, time is relative. Time can ‘fly’ or it can be ‘as slow as a wet week’. One thing I am sure of and know with great clarity when I think of time and my Tom – It wasn’t enough. I needed more time. He was only seven. Truthfully though – I was always going to need more time.

When Tom’s brain tumour returned and the doctors handed down his terminal prognosis, of the many questions we asked, this one held special significance: “How long?” How much time? They couldn’t be sure but without treatment we were given weeks. With treatment we were told weeks to months.

Decisions about which treatment options to follow is then handed over to parents. Once the word ‘curative’ leaves the room and ‘palliative’ enters, the doctors defer to you. The question of time becomes more fraught and the weight of making the right decision is crushing. The option of a higher impact chemotherapy would possibly grant us more time. The kicker is, the more toxic the drugs, the worse Tom would feel and the sicker he would be for the remainder of his time left. No guarantees either way but the decision is yours.

How can you bargain for more time with your child, if that time will be coupled with pain and sickness? More medications, more tests, more vomiting, more needles and more time in hospital. So, the concept of time becomes ever more complicated. Buying time. Borrowed time. You try to find balance and hope you made the right call.

Memory making becomes the new focus when time is running out. Every photo, every smile, every adventure. Efforts to cram in a whole childhood of joy. To create a long life of memories which is about to be snatched away. When you are sick, you want to stay in bed. You want to feel better. But is there time to be lying in bed when the days are running out? Is that wasted time?

The next balancing act is to decide on how much energy to expect this little boy to spend on these adventures. Can he enjoy his time surrounded by people, with big plans made to make up for the tragedy of cancer? These plans that are made with the best intentions, but plans which he must endure while he feels so sick? Never has the question of how one will spend their time been so important.

When you are tired, you rest. When you are overwhelmed, you cry. When you are happy you smile and laugh. There were times in those final two months when he was well, when he was excited, and I saw the sparkle in his eyes. The memories of those moments are like gold. There were times when I knew all he wanted was to curl up on the couch and be still. To be honest, the hours we spent cuddling on the couch or tucked up in bed were some of my favourites. I am so grateful for those times also.

Then our days ran out and my Tom was gone. There was no more time left with my son and too much time left without him. How I spent my time would have to change. My routine of caring for him through cancer and rehab was no longer a way to spend my time. My whole life stretched out ahead, but all this time seemed impossible to bear if Tom wasn’t with me.

Generally, I am a productive person. A busy person with a lot of energy in the tank. I found myself losing time after Tom died. A fog of missing hours, of procrastination, of confusion, apathy, and lethargy. Sadness left me drifting, randomly weeping, staring into space, wandering. Days went by without much notice. No list of tasks for each day completed. Where did that time go?  I have no idea.

The old cliché of ‘time heals all wounds’ became one of the most infuriating things I could hear. I hated the passing of time. Each day, I was moving further away from the last time I held him close. Further away from a time when he was on this earth, in our house, right in front of me with a cheeky giggle and a tight hug before bedtime. It made me frantic and I wanted time to stop. To turn back the hands of time. Each day stacked on top of the last as a mountain of moments that weighed on my shoulders. The passing of time didn’t make it easier – it was cruel and compounding. The passing of each anniversary hurt with the same sting and the same tears.

Maybe as the years pass, this cliché will become somewhat more relevant to me. Yes, I function better than I did when he was first gone. Functioning is one thing, I guess. There are more moments of joy finding their way into my days now. I’m becoming more adept at hiding my despair from the world. Maybe functioning with a backdrop of grief is enough and it will get easier. Maybe after years have passed, time will have started to erode the sharper edges.

I am told with grief there is no fixed timeline. I wholeheartedly agree. But I don’t think modern society is on board with this. “Three years. That’s how long it takes. Give her three years and she’ll be okay”. Umm, no. Other bereaved parents say to me… ‘Five months is no time at all. 16 months is no time at all. It’s still with me after 12 years. It’s a long road and you’re on it for as long as it takes’.  That is what the veterans of bereavement tell me.

How marvellous it would be if the social understanding were that no one ever ‘gets over it’. No judgement, no calendar, no expectation for a person to be fixed. No need to hide one’s grief because it is uncomfortable for everyone else to imagine the pain is still there. Even after all this time.

I have a lifetime of living with this grief ahead of me. It sounds ominous and vast and overwhelming. But if I spend my life wishing for it all to be different, crying for what was taken from me, I will waste my life.  I must find other ways to grieve for the sake of the long term.

I firmly believe that the greater the love, the greater the grief. My grief is great and long-lasting, but I need to find a way to live alongside it. To deny it is to deny the love I have for my son. To wallow in it, adds to the sum of all that cancer has taken from me and my family. How do I make the best out of this? Is that even possible?

I still have time with Tom’s brother, Cameron. Precious time. I must spend it wisely. How do I honour both of my boys? All I can come up with is to be the best mum, the best person I can be, to survive and come out the other side with sunshine on my face. Finding ways to cope with the waves that come to drown me. Looking after myself, understanding what I need and finding support where I can. Moving forward with memories of Tom which remain present in our home, our conversations and our future.

So that is how I will spend my time, where my time will go. It might look like crying in the shower or kissing my Tom pendant on the way to work. It might be writing this blog or raising money for cancer charities or talking with other bereaved parents. It will be making important memories and bonds with Cam that will help us both now and down the track. It will be having little chats with Tom in quiet moments I have to myself. It will be reflecting on how to find perspective when sometimes I feel that nothing matters.

Not so ordered, not so measured but still of value and balance. These are all places where my time will go.