How do you see the forest? You are not in it, simple…
But do you need to see the forest? Do we have to always know how our actions fit in the bigger picture? Is it truly possible to know the bigger picture?
Yup heavy post coming your way today friends.
We have been living on a very stormy emotional seas lately. Our little row boat has been picking up water and we don’t seem to be able to dump the water back out to the sea. I started to search for a life raft and referred our family to Canucks Place. We are visiting next week for the very first time. My preconceptions about this place will surely be shattered. I’m trying to imagine seeing families who have won the same “shitty lottery” as us. How do they deal with their load? I’m terrified of my emotions seeing the little light at the nurses’ station ( meaning a child is nearing the very end and calm and quiet atmosphere should be kept). I’m revisiting our final walk with Sara to the door of the surgery. You try to remember everything because,you know this moment will never be repeated, yet everything is so ordinary until you reach the empty room, gather your things, say goodbye to the nurses and leave the hospital in a haze of absolute emptiness. Just to arrive at home with the blanket Sara was sleeping on still on the floor and her purple house coat next to it. I don’t remember the weeks after, I truly don’t. I had trouble even with the simplest tasks, I had no short term memory, I was afraid to drive, because I wasn’t sure if I can concentrate enough. We survived them, only to be handed another sentence, this time not death, but a sentence for life. I remember the strange and awkward call the doctor gave me. She spelled the name of the mutation for me and asked if I’m ok. I said yes, because I really didn’t know what those four letters meant. I googled my first research paper and started to read the summary of my biggest fears. Seizures, no thank you 14 months ago I saw my first one and five days later I was holding my child’s death certificate, so no thank you. Blindness, the most horrific of disabilities in my own opinion. Severe physical and mental disability… really!? There is not much more that you can pile on us, apart from premature death, which is kinda open case, since sudden death in epilepsy is a leading cause of mortality in children with seizures…
All these moments, experiences are our trees, they make up our forest. I find myself actively nurturing certain trees, while almost abandoning a whole part of the forest, because it doesn’t “sparkle joy” being there. I’m not brave enough to actively set fire to those woods just yet. I know that burning would produce fertile ground for new forest, but I’m not good with matches. I’m leaving them out of sight out of mind and see if they sort themselves out. Because the beauty of our forests is that they grow and change with or without our involvement.
Fast forward a week later. We survived our first Canucks Place visit. It gave us hope that we can take “a breather” in the near future. Our social worker had secured respite funding for us for the next 12 months. That is all lovely, but it requires me to plan our year ahead with a skill of a destination wedding planner for a party of 250, where at least ten couples are required to be kept separately at all times and 100 people have “unusual dietary requirements”. I’m just a girl with GED and night school classes under my belt and suddenly I’m a head of booking, HR and CFO in one person. I should also have great interpersonal skills and degree in social sciences to conduct interviews to hire “a bit more than a babysitter” for our son. We also have some attempts for personalized medicine to attend to and three research groups and foundations to contact for possible clinical trials. I could book swimming lessons and spring break classes for our daughter. Every parent can do that within 30 minutes, but I find myself extremely overwhelmed by the demands suddenly placed upon my shoulders.
It feels like I was thrown into a tropical jungle. I’m ok with my temperate forest scene, I know the names of most of the trees, I can find north just by looking at the trees to orient myself. I can imagine what the forest looks like based of my previous experiences stepping out and seeing the horizon. But I’m standing in a jungle now, I’m sweating profusely in the wet heat. I can’t even see where one tree ends and the new one begins and the noise of creatures big and small living here is just overwhelming. How do you find your way in such a foreign place? Right now I’m just standing still, gathering information from my surroundings, petrified to move. One day this unpredictable jungle might feel like home, but it is way too unfamiliar now. Our complex needs life is only 18 months in, but I already shed many of my fears. That gives me hope that with little time I can figure out how to move in this jungle without falling down and hurting myself.
Do I need to know how big my jungle is? Do I need to know how many hills doesn’t it contain? No and no. Knowing I will walk this place 15 years have absolutely no effect on my speed, ability to enjoy or appreciate the jungle. You are either naturally a person who enjoys things or you are not. The whole BS about living your life as if today is the last day… I call BS, you can’t cram more experience into 24 hours, something is gotta give, your sleep, your food or your ability to just enjoy yourself. Anybody who claims otherwise obviously didn’t live through the last day, just like we did. Knowing how many hills you have to climb? Irrelevant because how do you know you don’t end up climbing the same hill ten times before realizing your error?
So knowing the forest doesn’t help you not to crack your head open walking into a tree.
Now excuse me, I think I see a flyer left by previous visitors with photos identifying poisonous insects. Time to get better acquainted with my new forest.
ktojoy 