Before I launch into the myriad of thoughts rushing through my brain, I will give a brief update on Stella, since most people who read this blog are probably much more interested in that than my own muddled thoughts!
Last week, I really thought we were going to lose Stella. For a span of five days she slept. All night and all day with very, very brief periods of being awake. She barely ate or drank anything. Her colouring was grey, her skin clammy. Aimee and I spent the days in silence and the nights crying in our bed, staring at Stella and hardly breathing because our chests were so tight with the realization that we would have to learn to live without her. Our intuition told us this was “it”. We were incredibly sad and scared. But Stella, who continues to confound me even in her journey to death, had other plans. On Tuesday she “woke up” and she has been awake ever since (except for the night…thankfully she leaves that part up to Sam). We take daily walks to our local burger joint. We visit Auntie. We have tea parties on the couch. We feed Sam. We eat. We laugh. We read. We visit. We live.
So…there you go. She is doing so well that we are starting to wonder if she might actually make it to Christmas. It doesn’t seem like such an impossibility anymore. Stella refuses to tell me what her plans are, but I promise to keep everyone updated if she ever does.
Now back to my muddled brain. I was thinking today that one of the things I have gained from this experience thus far is a deeper understanding of some commonly used words, that somewhere along the line have been redefined for me. They might not be dictionary definitions, but they are lived definitions.
Bravery is three teenagers (C, N & T) who, even though they know Stella is dying, choose to be with her and play with her and throw parties and give her gifts and shower her with love and affection. It would be so much easier for anyone, but particularly teenagers, to stay away from us. To not come over or call because it’s easier to put it out of your mind and create distance between our reality and other peoples lives. It hurts less if you don’t see Stella and know how she is being slowly taken away from us. I have adult friends who have abandoned us during this journey stating it is “too hard for them”, but these three incredibly youth continue to come.
Bravery is doing it because it is hard.
Bravery is all the people who push their own fears, anxieties and needs aside and just play with our daughter and son.
Sometimes, bravery is just showing up.
Strength is finding out when you are five months pregnant that the centre of your life, your firstborn, is going to die and still having the ability and fortitude to look after yourself and your unborn child. To push through the unimaginable pain and stress and continue to eat well, sleep as much as possible and remain upright without the crutch of alcohol, meds or physical and mental self-sacrifice.
Strength is smiling and laughing through your own pain.
Strength is carrying your friends and family when they can’t get out of bed.
It’s buying popcorn and Dora clothing and ice cream and Timbits because it makes Stella happy, even though she can’t swallow it or use her hands to pick it up anymore.
Strength is pushing through your own emotions and needs, giving all you have to give and wanting nothing more in return than to take home a pocket kiss from Stella.
Family are the people that you can be silent with. Those who understand the spaces in which you are silent are just as important as those where you are speaking.
Family are the people that come when you call them but don’t get hurt when you don’t.
The ones who bring you food, who sleep at your house, who take your dog, who work hard to make you feel normal even though you don’t recognize who you are anymore.
Family are the people you cry in front of who ask nothing from you.
Family holds your hand when you are drifting into a dark hole. They pull you out and hold you in their arms until you can see clearly again.
Family is warmth, hugs, babies, toast, nailpolish and red curls.
Family knows that you are all messed up inside and out, and love you anyway.
Sadness is a weight that pushes on your lungs and makes the air so thick you feel like choking on it.
Sadness is tears that are shed in silence. They run down your cheeks and pool at the nape of your neck. The tears taste like a mixture of fear and relief.
Sadness is helplessness. It’s jealousy, confusion and loss.
Sadness is an ice cold wave that starts at your toes and moves up to the tips of your hair jumbling up your insides and numbing you completely.
Sadness is a glass that you thought was half full, but keeps leaking everytime you turn your back.
Sadness is a sharp blade that carves out pieces of your heart slowly and deliberately each time you hear about a party your dying child can’t go to, see a 2 1/2 year old running across the playground or walk past the community centre Stella used to swim at.
Honesty is looking in the mirror, looking at the people who surround you, and admitting that you’re not perfect.
It’s breaking down the walls that you spent your entire life building up and exposing your soul to criticism, judgment and pain.
Honesty is sometimes excruciating, sometimes humorous and sometimes it’s so foreign it actually feelsdishonest.
Honesty is hurting the people you love most in the world, but telling them it’s for their own good even if you’re not sure it is or not.
Living life honestly is strangely freeing, yet terrifying all at the same time. It’s coming face-to-face with all the parts of yourself that you try to forget or push away. It’s being scared and vulnerable.
Honesty is your heart breaking more and more each day, while at the same time increasing it’s capacity to love.
Honesty is a mixture of self-loathing and self-loving.
Death is an action verb. It’s confusing because what does it mean “to be dying”? Aren’t we all dying, from the very first moment we are born?
Death is box full of questions that are unanswerable.
It is giving up power, giving up knowledge, giving up the centre of your heart.
Death is a type of freedom for the one who dies, but a type of prison for those left behind.
Death for is a game of snakes and ladders. We slide down, we climb back up, we slide down. One day the game will be over, but no one knows when. And you can’t cheat because the snakes will trip you up no matter what.
Death is not the opposite of life, but it’s partner. They intertwine, they tango, they move in and out of one another with complete ease and beauty. They are as co-dependent as the sun and the stars. Samson means “sun”. Stella means “star”.
Death is mostly looked upon about as something dark, yet people with near-death experiences constantly speak about “the light”, so death must come with extreme clarity.
Death is not an ending, but the beginning of something new and different. I am unable to believe that with death there is no more, because that thought is unbearable to me. I don’t know what comes after, but I know it has to be something.
The definition of love could be extremely long and complex. I’ve lost count of the amount of times I’ve told Stella and Sam that I love them. I kiss Stella’s forehead over and over again in the day and say, “Stella…Mama loves you”.
Three weeks ago, out of curiosity I asked Stella, “Do you know what love is?”. Stella nodded her head sagely. She always says she knows everything you ask her. Two year olds know everything. But I was genuinely curious. Love is one of those endlessly abstract things and I wondered what it meant to toddler who has heard it repeated constantly at various times and places by multiple people.
“What is love?” I asked. She immediately looked directly at me (hard to do since her eyesight is waning), and without hesitation answered.. “‘Tella”
“Love is Stella?” I repeated. She nodded and said with complete conviction, “Yes”. Now each time I ask her that question, she gives me the exact same answer.
It turns out the definition of love is not that complicated after all. Love is Stella.
Scrapbook Page by Heather Seyler