When someone you love is in hospice, and an angel finally dares to give you an actual time frame, there is a sensation of simultaneous relief and panic. Without that time frame things can be confusing, angering, uncertain… with that knowledge comes grief and finality. Here are my tips for living the best life you can, while your heart slowly breaks off in pieces.
Live Large- We recently had a party for sickie, which was over the top, ostentatious, probably tacky. And it was loads of fun. As we adult ourselves, living more and more quietly while discarding the our innate childlike glee, we disconnect ourselves form the wonder and complexity that is our life. And that is incredibly sad. When time is of the essence, it feels less crazy to hang over a hundred balloons…
Create Something- Ok, beyond writing a blog that no one reads, I have a variety of outlets for my grief. I make blankets, which are horrible, plan creative play dates, and make fairy houses. It’s kind of the “fake it till you make it” motto, because even though I hurt inside, putting pieces of myself out there and accomplishing something builds me up. It puts little nuggets of esteem in my back pocket that help me face the really bad days.
Take Care of Your Appearance- Basically comb your hair, paint your toes, and use deodorant. I’m not saying you have to get fancy, but if you feel like you are falling apart it can be very socially isolating. It is easier to pick yourself up, dust yourself off, and get out there when your outer appearance doesn’t match your inner chaos.
Set Goals, Commit to Them, and Follow Through- Admittedly, it seems as though time needs to stop until, well… until sickie’s time has stopped. It feels selfish to think of anything else, to make plans, to go on. Yet, without little milestones to meet or upcoming successes to look forward to, I think my spirit would shrivel completely. I would have a deeper sense of despair, and nothing positive to talk about with anyone. So I am participating in an art fair that also benefits charity, I’m looking for new ways to train my horse, and I’ve adapted a healthier eating plan. Because although my heart is breaking, I refuse to break with it.
So, I’ve briefly touched on the fact that someone I love is very ill. And while it is slowly breaking my heart, life actually, maddeningly goes on. And I find myself looking for sparks of inspiration and light in the darkness, a way to reframe everything that is happening and assign meaning rather than blame. So we are holding a birthday party for her, an combo last-blast/swan-song. Except my three year old is helping plan it. So it looks something like this…
There will be a huge bouncy house, and not just a plain non-descript bouncer that pretty much would ensure hours of shenanigans, but a Frozen themed bouncy house. With Frozen party favors, hats, and an ice blue three-tiered cake. And a water table, and a miniature swimming pool. And catered sandwiches, and snacks, and juice, and balloons! Lots of balloons. And plenty of booze as well, for the adults, of course. It is an open house, come as you are, free for all, and friends and family will hopefully surround us.
It sounds strange, but as we proposed the idea to sicky she became extremely excited. Gleeful almost, and this has become a huge event in her life to look forward to. So I got to wondering, why the hell do we play down our birthdays as we get older? Why does it suddenly become gauche to have themed, huge celebrations of our life? Because our journey is short and precious. So we’re going to party like three year olds.
Watching someone you love decline from an incurable disease is one of the most soul sucking experiences unique to the human race. Wild animals are luckier, lacking doctors and medicines to prolong the suffering, both for the patient and their loved ones. If I didn’t have an artistic hobby, the compulsion and the desire to create, I really don’t know how I would deal with what I am seeing. Bad day, bad doctors appointment, make a fairy/gypsy caravan, and imagine running away to travel the world. Achieve a state of flow, and let the fear slide though my fingers. Noticing a mental decline in my loved one, hoping she hasn’t caught on, and glue moss for hours, letting the sadness slide through my fingers. Watching someone struggle for every breath they take, build a fairy sailboat to imagine sailing the seas, and slowly allow grief to slide though my fingers…
There is so much beauty and pain in life, and they inevitably go hand in hand. When my emotions become so insurmountable and overwhelming, miniature beauty creates order out of chaos. I am so very grateful for the outlet.