Christmas has come and gone. It was a whirlwind of food, bright wrapping paper, music, children chasing each other in circles and laughter. Even though she wasn’t here physically, Stella was everywhere. There were stars all over our Christmas tree, representing our little girl. We set a place for her at the table for each Holiday meal, a plate with her photo and a lit candle. Her stocking hung with the other kids on the mantle and we decorated her tree at Riverdale Farm. Like most other days, there were moments of laughter and fun and moments, when the kids were ripping into their gifts, that instead of feeling happiness I felt a raw ache in my chest as I looked vainly for red curls in the crowd. We lived in the present, we remembered the past, and we mourned both. There were nights when Aimee and I sat on the couch together and cried quiet tears of pure heartbreak. There were other times when we laughed wholeheartedly at the antics of the boys, or each other. As expected, it was a mixture of happy and sad flashes woven tightly together in one big blanket of moments.
As we muddled through the holidays, I was especially grateful for all the people who thought to text or send a card or an email saying they were thinking of Stella and us. On the DIPG website that I belong to (www.dipg.net), some bereaved parents talked about how no one acknowledged their children at all over the holidays’, and how much it hurt. I am so grateful to have a group of family and friends (including blog followers!) who keep us—all of us— in their thoughts and reached out to let us know they were thinking of our family and the missing red-headed girl whose laugh still rings in my ears. It’s funny because there are so few people who read this blog anymore, yet those that continue to follow are faithful and loving and generous with their comments and support. Most of our family and friends don’t even read it, but those who do mean a lot to us because you understand that this journey is far from over. Stella is gone, but we are just beginning to figure out how to do this life without her. The story of Stella, her life and death, is far from over.
It occurred to me over the last few days how many strange decisions that bereaved parents need to make around the Holidays. For example, when we get our annual “personalized” Christmas ornament with family names on it…do we include Stella, or not? When we sign gifts we are giving to people, do we put “Love, Aimee, Mishi, Sam and Hugo”, or “Aimee, Mishi, Stella, Sam and Hugo?”. It feels so wrong to not put her name on things, yet she is gone forever and we need to somehow acknowledge that as well. Do we put anything in her stocking? What about toys and books? As the boys brought home presents from their respective grand-parents home, we realized we needed to thin out some of the things they don’t play with anymore. Some of Stella’s toys that they have outgrown. What do we do with them? It hurts to give them away— to give away objects that she once touched, and that we have memories of her playing with, but we can’t keep everything. And photos. Stella’s face is plastered on every wall and surface in our house. But we also have photos of the boys now, more and more of them, that need a spot as well. And though we want, and need, Sam and Hugo to know their sister through us, we are also conscious of the fact that we need to celebrate their accomplishments and personalities separately from her— not just compare them to Stella. Because we miss her, we are constantly trying to find little pieces of her in Sam and Hugo. A certain look, a certain way they say a word, a certain dance move. We delight in saying, “Oh my gosh, remember when Stella did that”…”Wow, when he makes that face he looks SO much like Stella”…”Stella never would have let us put that sweater on her…” etc. etc. But at some point, they will move out from under her shadow. They will move past the stages she was in and he comparisons will not happen anymore. Both because they can’t and they shouldn’t. I wonder if we will lose a little bit more of her when that happens. Already Sam is almost the exact same age Stella was at diagnosis. She was 26 months, 6 days old when DIPG became part of our vocabulary. Today, Sam is 26 months, 7 days old. From here on in, we are like new parents, exploring and watching what it’s like to have a “normal” 26 month old, not one saddled with a fatal diagnosis.
There is both sadness and joy in having Sam reach this milestone— the age Stella was when her future was snatched from underneath her. Often when I see Sam and Gracie playing together, I wonder how different things would be if Stella were still there. Would it be Stella and Gracie teaming up against Sam? Now Sam and Gracie play together and laugh and chase each other, with little Hugo always bringing up the rear and trying to catch up. I wonder if Sam would look at Gracie with the same complete adoration, and if Gracie would have as much time and energy and love for her little cousins if Stella were still here, her partner in crime for everything. I wonder how we could ever live without our sweet little Hugo, smiling his way through life with his easygoing personality and love of books and hugs. I wonder what this next stretch of our life will be like— where (we hope), we will get to the stages we just missed with Stella. Soccer and ice skating and first day of school. I wonder what it will be like to parent through these next stages.
Even now, so many months after Stella’s diagnosis we are still not sure what we are doing. Every day brings a new challenge, a new emotion, a new thing for us to puzzle through and figure out. But we will. One day at a time.
(Poem that preceeds most AA meetings in Toronto)
There are two days in every week about which we should not worry, two days which should be kept free from fear and apprehension.
One of these days is Yesterday, with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed beyond our control.
All the money in the world cannot bring back yesterday. We cannot undo a single act we performed; we cannot erase a single word we said
Yesterday is gone.
The other day we should not worry about is tomorrow, with its possible adversaries, its burdens, its large promise and poor performance. Tomorrow is also beyond immediate control.
Tomorrow’s sun will rise, either in splendor or behind a mask of clouds, but it will rise. Until it does, we have no stake in tomorrow for it is as yet unborn.
This leaves only one day today. Any man can fight the battle of just one day. It is only when you and I add the burdens of those two awful eternities.
Yesterday and tomorrow, that we break down. It is not the experience of today that drives men mad.
It is the remorse or bitterness for something which happened yesterday and the dread of what tomorrow will bring.
Let us therefore live but one day at a time!
Stella’s Tree at Riverdale Farm, all dressed up for the Holiday’s:
Energetic boys! (Sam, Xavier, Hugo):