From the moment you could walk I spent most of my waking hours chasing you around. Never for one minute did you sit in the same place for longer than a few seconds – it just wasn’t your thing. I remember trying to hang on for dear life when you used to hug me, wishing the hug would last just a moment longer and just when I thought it might, you’d twist and wiggle right out of it, giggling all the way. On Saturday mornings, when it was my turn to sleep in, I remember hearing the pitter patter of your little feet tearing around our house. You were making waffles with mama. I always knew that my sleep in was nearing an end when it got quiet all of a sudden as you plotted with mama to wake me up. Once the bedroom door swung open – it was all over. As you climbed up onto the bed, cackling with every move, it was hard for me to pretend to be asleep without smiling. I remember the smell of maple syrup on your face like it was yesterday as you planted a sticky kiss on my cheek. Again, no matter how hard I’d try to hug you or get you to sit on that bed with me, you always managed to escape.
There’s a photo of you and I posted on the bulletin board in my office. We’re walking together in Mexico. Just you and I, side by side. You’re not holding my hand of course but when I look at it, I can feel you walking beside me. Mama was walking behind us when she took that photo, so the image is of us walking away in the distance. Sometimes when I look at that photo, I imagine that we’re there, on that trip, in that moment, frozen in time. That photo is one of my most prized possessions.
I remember when you used to get a cold or fever, secretly loving the fact that you would want to cuddle into my lap. It really was the only time in your life, that you would stay. DIPG changed all of that. As the tumour invaded your brainstem and stole your ability to walk, you finally wanted to be held. You needed to be held and I needed to hold you. There you were on the couch. On my lap. In my arms. Beside me. For a year and a half, I got to hold you. Your mama got to hold you. That is a gift that DIPG slammed on our doorstep as it tried to extinguish you. A gift we would take even though it brought us both moments of joy that were often overshadowed by excruciating pain that debilitated our souls. We held you in our arms as we were forced to do things that parents should never have to do to and for their child. We held you in our arms when our bodies were broken and our hearts couldn’t see past tomorrow. We held you. I remember the feeling of holding you for hours on end. My left arm would fall asleep and my shoulder (that will never be the same) would ache. When I was sure that you were finally asleep, I would slip out from underneath you and sneak away for a long awaited washroom break and a glass of water. I would always find myself back on that couch though, with you right beside me.
We worked so hard to sleep train you as a baby and as a toddler over and over again. All that to one day buy a king sized bed just so that you could spend the rest of your time on earth sleeping right beside us. The big girl bed. That’s what we called it. One of my biggest fears back then was that you would take your last breath in the night without us knowing and that we would wake up to find you gone. I spent most of the the night clutching your tiny bicep while keeping one finger on your chest so that I could feel your heartbeat and your chest rise and fall beside me. Now I sleep with my outstretched arm across your empty spot in the middle.
You see Stella, I never imagined that there would come a time when you weren’t right beside me. Now, memories of you lie neatly packed into a box beside my bed. Shortly after you died, I found myself very possessive over certain things that were yours. I started to collect them and put them in the box so that I always knew where they were – right beside me. The box is bursting at the seams now as your brightly coloured hair bands push open the lid. Your mini book about shapes is in there too along with small pieces of your t-shirts, the green wrist band you loved to wear, the chicken that you used to torture me with that cock-a-doodle-doos and pieces of your perfect curls – each one carefully tied up with a white ribbon. You were unconscious when your mama and I washed your hair for the last time. We brought a tub of warm water onto the bed and carefully washed your beautiful curls as you lay on our arms. It was torture but we had to do it. We knew that this would be the last time we washed our baby girl’s hair and we knew that we needed to keep some of your curls here with us. So we lay there that day and watched your hair dry for hours. We found each curl that we couldn’t be without and carefully cut it. I was determined to make sure that no one could tell that your hair had been cut because I wanted you to look as you always did.
The fact that my first born has been reduced to a box of curls beside my bed devastates me in an unimaginable way that no one, who hasn’t experienced it themselves, can understand but I am so glad to have those curls. I open that box every night before I go to sleep and every time I peek at your shiny red curls, I smile as I remember just how perfectly orange they were and how they managed to catch the light in just the right places. Although my weighted heart aches as I feel your absence with my every being, when I close the lid and roll over to turn out the light, I close my eyes knowing that the pieces of you are right beside me. Where they belong.
Sam and Hugo wearing their new matching “Gwinches” shirts:
Winter is finally coming to an end…Sam and I celebrated by heading to the park!
Hugo’s new haircut. Ready to join the military!
Mama and Sam:
I remember every single pore of Stella’s beautiful face: