I’ve written before about how one of the frustrating things to me when Stella was alive was reading other people’s DIPG blogs and then having them suddenly end just days or weeks after their child died. As a parent standing on the edge of an abyss of darkness, I wanted to…NEEDED to…read about others journey’s. I needed the reassurance that someday it would all be okay. So even though I don’t feel like I have much to write nowadays, and even though there are few people who still follow this blog, I continue to write when I can because I keep thinking of all the “new” DIPG parents out there who may be trolling the Internet in the middle of the night, looking for assurances that they will survive their personal nightmare.
So… in case you were wondering, we are still standing.
Stella’s youngest brother, Hugo, turned two on August 2nd. He is such a little character. Built just like Stella, same mischievous grin and same bright blue eyes. But he is so very different as well. As we sang happy birthday to him, both Aimee and I blinked back tears remembering Stella’s 2nd birthday. It was our last few weeks of innocence, but we had no idea back then what was about to happen to our lives. In may ways, Hugo saved me. I was in such a dark place and when I got pregnant with him I had to care again. Having this little life inside me forced me to start looking after myself. I felt so betrayed by the world when I realized my daughter was going to be taken from me— not just taken, but slowly eradicated— and I lost all the confidence I had that there was any point in trying to protect your children. When Sam was born I was terrified for the first little while, and I got pregnant with Hugo when Sam was still a newborn himself. What a crazy time. But having a baby growing inside me meant I had to eat and sleep and look after myself. Hugo has helped lessen the sting from the loss of Stella. Though nothing can ever make up for the death of our curly-haired, energetic daughter, Sam and Hugo together have given us so much joy. They gave Aimee and I back our lives—both literally and figuratively.
There are some days now that I don’t feel sad at all, and others when the tears won’t stop flowing. And I find that sometimes, it’s at funny and unexpected times that grief will hit. I was looking at photos of the kids that we put up at the cottage last year and thinking about how we need to update them since the Sam, Hugo, Gracie and Xavier are so much bigger now. Then I realized that the ones of Stella on that same wall will never be updated. There are no more new photos of her. She is forever 3 1/2. When I thought about that, my heart hurt so much I thought it would burst out of my chest in a cascade of salty tears. Sadness weighed me down in that moment. I tried to imagine what she would look like had she lived. We probably never would have cut her curls so they would likely have been cascading down her back by now. She may have been longer and leaner too. I pictured her with green nail polish and a brightly coloured bathing suit. I wondered if she would have chosen the bathing suit with Dora on it, or the one with flowers or hearts. Pink or purple crocs? Maybe neither. The first pair of crocs she insisted on when she was 15 months old were plain shit brown and there was nothing we could do to convince her the other colours were nicer. Now Sam wears pink Dora crocs and Hugo likes his blue Thomas the Train. I wondered if Stella and Gracie would have ganged up on Sam. He would have had no Hugo to chum around with, so I wonder what that dynamic would have been like. Probably freckles would have started appearing on her chubby cheeks. Perfect white chicklet teeth, bright blue eyes, bubbling giggle. My head can picture it so clearly if I try, but it hurts to think too hard about it, so I didn’t let myself sit and wonder for too long. It’s healthier for me to stay in the here and now. So I stopped that train of thinking and allows the “now” moment to seep into me. Using all my senses, I watches the boys play with Gracie, felt the sun on my arms, listened to the rustle of the trees as a light summer breeze passed by, smelt the mixture of sunscreen/sweat that heralds summer fun and tasted the grape freezee, a familiar manufactured flavour that is unchanged from my own childhood, 30 years ago.
Staying in the here and now is also how I’m getting through this extremely challenging Funeral Director internship year. The hours are long, working weekends and holiday’s is hard on my family. I’m struggling. A lot of it is the driving. I only got my license (for the first time in my life!) this past May, so I’ve been driving for less than 3 months. Driving in Toronto traffic is extremely stressful for me. For anyone else who works at the funeral home, if they are given a simple task such as, “go to Toronto General Hospital and pick up a body from the morgue”, they grab the keys and whistle Dixie right out the door. Not me. As soon as I’m told to drive somewhere, the knot in my stomach starts to tighten and the blood rushes to my head. Immediately, my brain goes into overdrive about how many times I’m going to have to change lanes, what time it is so I can gage traffic, how many left turns there might be, if I may need to back up somewhere, etc. etc. My hands shake as I grab the keys and feel like I’m going to vomit the entire drive there and back. There is ALOT of driving when you are a Funeral Director intern. Drop off flowers, pick up Clergy, drop off body at the crematorium, pick up cleaning supplies, drop off body at the airport, pick up body at the morgue, etc. etc. etc. I can’t back the Coach (aka hearse) up into the garage and I can’t park the lead car completely straight under the carport. I feel embarrassed. I know I have so much to offer, but the driving is not showing anyone what I’ve got, but rather just points out my weaknesses. Aimee holds me at night when I come home crying and says, “You can DO this! You’ve done harder things”. But that’s the point, I tell her, I don’t want to do hard things anymore. I’m tired of doing hard things, I want something to be easy and fun and enjoyable. I want so desperately to do this, and to be good at my new career, but each time a situation occurs that necessitates me driving, or doing something unfamiliar and stressful, my stomach knots up and that voice inside my head gets louder and louder, “You can’t do this. It’s too hard. Quit”. Some days I don’t know how I’ll make it. Other days, something almost magical happens and I get a moment of pride and accomplishment that spurs me on to the next day. At one point last week I had a particularly trying day where another Funeral Director reamed me out for multiple things, and I was a mess of nerves, my spirit broken. 15 minutes before the end of my shift, a young couple came in to pick up the cremated remains of their stillborn baby. As they sat on the couch waiting for the impersonal cardboard box that contained their broken dreams and hopes in it, I recognized their name and remembered that it was I who had looked after their baby. After talking myself out of it half a dozen times, I went up to them and introduced myself. “Hello,” I said, “my name is Mishi. I see you’re here to pick up Baby C. I just wanted to let you know that I was one of the people who looked after her. I wrapped her in a hand-knit yellow blanket with a matching little hat that had a pink ribbon on it. I held her and took good care of her for you”. When I saw the look of relief come over their faces and the tears roll down their cheeks, I felt like it was the right thing to do. I wanted to know that Stella was looked after once I handed her over to the Funeral Home, and I think that these parents needed to hear that as well. I felt good about it. Even though the situations are totally different, sometimes plodding through this new career stuff feels much like navigating Stella’s illness. It’s all a big unknown, a leap of faith. A long, exhausting journey that has lessons around each corner…some welcome, some not so much. It’s a reminder about the extraordinary things human beings can do, but also about the fact that we all have our limits.
My life is, ultimately, a love letter to my daughter. A promise to live life the way she did—- honestly, fully, defiantly. So, whether I am mulling over Hugo’s birthday, Gracie’s latest growth spurt, traffic jams or what ice cream flavour to choose, I am taking it all in.
I am loving what I have. And on the hardest days, I have a great big bowl of ice cream for breakfast.
These boys mean everything to us. Sam wishes Hugo a happy 2nd birthday!
Family pic at the cottage:
Gracie and her cousins go shopping:
Stella, 8 weeks before she died, giving Hugo cuddles: