We've compared this journey through childhood brain cancer to a roller-coaster several times, and it does seem to be an apt analogy. It describes some of the emotional aspects of this journey well, however I sometimes wonder if it is the best analogy over all. A roller coaster, with all of its ups and downs and twists and turns, is a known entity - at least to the track designer and to the operators. Once on the ride, no one can get off, and the ride will follow the preset path until it's over. Nothing, no one can change the ride once it's built. Imagine a roller coaster in a dark room - like one of the ones at Disneyland. The riders know that there will be surprises along the way, but have no clue what they will be. The cars may start going up, and continue going up, and up. They know that at some point, the track will take them back down, but they have no idea if that will happen immediately, or if the ascent will last for 60 more seconds. When the cars do start to descend, will it be a steep descent, or a gradual one, with twists and turns along the way? A roller coaster has a set plan, with twists, turns, ups and downs that are a surprise to the riders, and those on the coaster have no way of altering the course, or of getting off. The only thing they can control is their own attitude. They can choose to enjoy it, to stick it out and make the best of it even if they don't love it, or choose to hate it, and wish that they had never gotten on. Maybe some of us do all of those things at different points along the way. A roller coaster has a specific course course, and a definite ending. When it is over, so is the turmoil and you can choose to ride it again or not.
Another possible analogy is that of a boat on the sea. We were traveling over relatively calm and beautiful waters. We had our dreams, our maps all laid out before us, like pages of a book yet to be written, with our hopes, dreams, and our imagined future. A future where we would watch our children grow up, make new friends, learn about the world, make a difference in their corners, graduate from high school, get married, have children, (hopefully in that order) find fulfilling jobs, and, we pray, serve and glorify God in all that they did. That changed in just a few hours. No one expects life-threatening illness. No one expects to come face to face with the possibility of losing a child. But we did face that reality. Our storm hit. We didn't choose the turbulence, it came, the reason why doesn't really matter. We sailed into a storm. But, unlike on a roller coaster, we can alter our path when we sail into turbulence on our boat. We can't get off the boat, but we can choose how we respond to the storm, and those choices help determine the direction that the boat will take.
Some of the dreams that we had, that we had imagined, will never be. The things we took for granted, that we just assumed would happen may never occur. It is all uncertain now. I know there are never any promises and that any one of us could die tomorrow, but we do come to expect certain things out of our lives, things that we all take for granted. We can't take our future for granted any longer. We have to grieve for the loss of the future that we thought we had. We have to grieve for the loss of the child we had before cancer changed his life, and our lives, forever; before chemo drugs and radiation treatments forever altered Kolbjorn's body, causing untold side-effects and damage to that tiny, trusting boy's body; before we were forced to make decisions no parent should ever have to make; before the certainty of brain damage, memory concerns, more surgeries, vision problems and learning disabilities; before the possibility of stunted growth, late side effects, secondary cancers; before we began to live with the constant knowledge that the tumour could very quickly come back at any time. Our boat sailed into a storm and tossed us all around and at times it felt like we would drown. We have dreams that will not come true, and stories that won't be written. We need to validate that pain. It is a different kind of pain than when we lose a loved one, but it is still a loss. We needed to grieve for that lost future - and still do.
We've seen and met so many people in the last few months who are in pain. Some who have lost their marriages, homes, families as a result of a child's cancer. We've seen children who've died, who have lost parents. We've seen people with chronic illness whose suffering goes unnoticed, because everyone else is too busy to pay attention. These are obvious hurts - easy to see, and painful. But what about those who are hurting in silence? One thing that Kolbjorn's illness has shown us is that we are not the only ones hurting - we all have pain to deal with - our own struggles, worries, illnesses, relationship problems. Some are suffering much more than we are, and others are suffering less. Everyone's hurts are just as valid as ours.
When my dad died, I sometimes wondered if it would have been better to lose him quickly - like in a car crash, or from a heart attack. Alzheimer's took him from us slowly - one piece at a time, over 17 years. It felt like we were constantly grieving the loss of another aspect of him. His memories, his confidence, his insight, his skill with numbers, his abilities, his personality. By the time his body died, there was very little, if any, of the man I remembered from my childhood remaining - except the shell, his body was still my dad's. The person, the personality that I loved, was gone. In some ways, the funeral felt like just a formality - a validation of the loss we had been experiencing for years. Now it was socially acceptable to grieve, because finally the body was gone - but I had already done my grieving, in silence. I realize now that a sudden death wouldn't have been easier. It would just have been different. The regrets would have been different, but it would still have been painful. A loss is a loss.
Society tells us that grief is wrong. That we should be strong, and get on with our lives, to let it go, to put the past in the past, and move on to our future. To go back to work, be productive. Grief is a negative emotion, and we are told that we should focus on the positive. So we bury our pain. But the positives have much less meaning when we have not experienced pain. We take the positive for granted. Like an addict, we need more and more pleasure for it to have meaning. When we're grieving, our bodies are telling us to slow down, to rest, to be introspective - to nurture ourselves. When we nurture ourselves, we take the time to enjoy the small things - the things that we don't even see when we're trying to stay busy to avoid feeling pain. To mourn. To say that yes, this hurts, I hurt. There is always someone out there who is facing a greater tragedy, and it feels that by admitting that I am grieving, I am saying that my pain is more important than theirs. This is so wrong. There is an epidemic of depression in our corner of the world. Maybe, just maybe, it's because we don't allow ourselves to hurt, and as a result we are missing out on the joy that can be found in the mundane. The joy in holding our children's hands, watching them sleep, seeing them smile, hugging them, rocking them to sleep, hearing their hopes and dreams for their future.
When the chaos of the storm hit, fear came too - fear of losing our child, fear of serious side effects, fear for his future and ours. Fear. Society tells us that grief is wrong, yet the negative emotion of fear is encouraged. We are surrounded by messages of fear. We're told to fear terrorists, child molesters, kidnappers, the man next to us on the airplane, Muslims, teenage boys. We should be afraid of genetically modified organisms, sugar, chemicals in our food, of potential oil shortages, food shortages, power outages. Grief doesn't sell. Fear does. Fear in the short term is good. It reminds us we're alive, and encourages us to fight or run if we need to. But God tells us not to be afraid. It proves we're not following Him. Fear also robs us of the joy that can be had today.
My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
So do not fear, for I am with you; do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand.
Surely he will save you from the fowler's snare and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.
You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.
I like the analogy of the boat, because we weren't helpless when the storm came. We weren't at the mercy of course designers. We had choices. We could, and did, cling to God, knowing he would keep us on the course that is uniquely ours. We don't know when the tossing will end. I do know that we don't need to be afraid, however, because I choose to let God be in control. We didn't lose our son, and for that we'll be forever grateful. We still have today. We still have time to create memories together, and we're doing just that. We have new stories to write.
Kol said today that this will be the year of change. That is what I pray for. Good changes.