The Great Escape

The Great Escape

Yesterday Aimee and I left Stella and Sam with our awesome family and went by ourselves to a hotel in downtown Toronto for a 24-hour “escape”.  We checked into our little boutique hotel, took the elevator to the 26^th floor and opened the door to our “Zen Suite”.  Dropping our bags in the entryway, we immediately flopped down on the bed. We lay in silence for quite awhile holding each other, enjoying the quiet, enjoying the cool air conditioning, enjoying the calm.  We went there to escape.  To escape the couch, to escape the pain, to escape the constant questions of “when, when, when”…”how, how, how”…”why, why, why”.  We had a fun itinerary for our 24-hour escape--- an hour at the spa for a pedicure (Aimee) and facial (Mishi), followed by a nice dinner and (hopefully) a wonderful and luxurious sleep-in.  The longer I lay on the bed in that hotel room, the more exhausted I felt.  I realized that I am drained and there is barely anything left in me. I feel like a deflated balloon lying on the sticky ground, two weeks after the party ended.  So I let myself be exhausted, closed my eyes and rested while Aimee stroked my hair and watched TV.  It was nice.  It was simple.

An hour later, we headed to the hotel spa and changed into plush white robes and slippers.  The spa was beautifully decorated, lots of dark wood, a hot tub, tea, cushions and lounge chairs galore.  This was our escape.  At the spa, I lay on a table covered in a soft white sheet with my eyes closed, and waited for the esthetician to work some life back into my baggy eyes and water-retaining, hormone full, blotchy face.  I was hoping to just lie there and listen to the soothing music but…alas! I had a chatty esthetician.  She started by asking me how pregnant I am (36 weeks) and then if this was my first.  I told her it was my third (purposely omitting the fact Aimee gave birth to Sam in order to avoid more questions…), and then “the conversation” started.  She wanted to know the kids ages, so I told her 3 years and almost 9 months.  Wouldn’t you know it, she has three-year old twin boys---Gabriel and Christian.  So, since we had this wonderful thing in common, she proceeded to go on and on about how much trouble it is to discipline her boys, what a fun age it is to have them running around, the hilarious things they say to her, how much they love playing soccer, the trouble they give her at bedtime, etc. etc.  As I lay there, trapped on the table with creams all over my face and a bright light shining on all my facial imperfections, I felt completely numb.  I mostly answered her with false smiles and “mmmhmmm”’s.  I didn’t want to lie about the reality of life with my three-year old, but I also wasn’t going to reveal the truth to someone I would be done with in 60 minutes or less.  So I just lay there and listened to her and allowed myself to think about how different my life would be if I had a three-year old that was also running around and sassing me and making me laugh with her wit and attitude.  One of the last things she said to me before I left her room was, “But the best thing about your children is, no matter how much trouble they are to raise, you know you will always have them with you forever, because children they don’t really die before their parents very often, so you know you will always have them to love and be proud of the whole rest of your life”.  She really said that.  Truly, those exact words.  I wandered numbly back to the spa and sat with Aimee as her fluorescent pink toes dried and told her what had happened.  She didn’t say much because there isn’t much to be said.  Aimee and I left our house yesterday because we wanted to escape.  But the reality is, there is no such thing as escape.  We can pretend to be two regular, anonymous people enjoying a short get-away, but we can’t escape the reality of our life.   We are part of a secret club of grieving parents wandering around trying to act normal.

The reality is, we went away because we are acutely aware of the fact that Stella is fading.  Day by day she is eating less, smiling less, awake less, moving further away from us and our life.  Everyone around us can feel it.  She is slipping away.  She is so skinny now that you can count her ribs and see her hipbones.  Last week, I forgot to pack a change of clothes for her in the diaper bag, but when I needed to change her I was able to put her in a shirt and shorts that belonged to Sam instead.  She easily fit into 6-month clothing.  Her arms and legs have zero muscle tone now, the limbs are soft and pliable like bread dough.  Her eyes are in a half-open state most of the time, even when she is sleeping.  Her mouth hangs open, dripping drool much of the time.  Even her hair---her beautiful, red hair, has faded somewhat into a lighter red, sometimes even appearing blonde in the sun.  She still wants to see her friends, but there is little we can do to force interaction any longer. The tumor makes it very difficult for her to show emotion now.  We have to guess how she is feeling, what she wants. 

I used to wonder if her death would be sudden & shocking, or slow and drawn out.  Now I know with some certainty that it will be a slow blurring of living and dying, kind of like a watercolour painting that is a mixture of washed-out, flickering brushstrokes whose meaning changes depending on how close you stand to it.

Even though Stella was born in the Spring, it has always been the Fall that reminded me most of her.  I think of the Fall as crisp and clean.  There is a feeling of expectation in the air, a quickness in everyone’s step as they hurry along.  Fall is a time of beginnings- starting school, starting work after summer vacation, starting to plan for the winter season.  Fall is when the world around Ontario explodes in colour as the leaves transform on the trees, little bursts of fiery energy heralding a new season, an escape from the sweltering unrelenting heat of summer.

Even though it is summer now and the scorching sun has turned the grass in our yard brown, and sweat forms on Stella’s nose most of the day and kids on vacation play tag and bike ride on the street long after 9pm because of the long summer nights, I still have a sense of Fall being near. It’s because I can clearly see another similarity between Stella and the Fall--- the image of the leaves on the tree slowly fading and dying.  Beautiful, golden orange leaves that silently glide down to the ground resting on the cold ground, sleeping to the lullaby of the wind.  Battered and bruised, colour fading to brown, but still leaves until a final gust of wind picks them up and leads them to a secret corner where they are returned to the earth in a motion so natural it is almost unseen.  They escape the cold of winter, the blanket of snow. 

There is no escape from the reality of losing our precious girl to this horrible tumor. No hotel, no dinner, no season, nothing will make a difference in the end.  It’s an unbearable reality that we need to learn to bear.

Stella’s impending death is a prison we can’t escape from, but I try to remember that she has made it as easy as she could for us.  She created bars made of sun, walls made of beautiful memories, a door made of laughter and a lock that holds my heart.  She will continue to fade away and one day soon she will be gone from this Earth forever. 

Ironically, it is her who will have escaped and Aimee and I who will remain trapped in a world without our beloved girl. 

Stella visited Riverdale Farm on Friday:

Stella helped Arin celebrate his third birthday on Monday:

This is the tree Stella's friends bought for her and planted outside Riverdale Farm last fall.  Aimee took this picture and we were surprised to see afterwards the butterfly-shaped Rainbow hovering amongst the leaves...so surprisingly beautiful...so Stella!