Parenting Stella after her DIPG diagnosis was hard in the obvious way of being totally heartbreaking as we watched our child slowly die, but in another way it was extremely easy. Fairly soon after her diagnosis, Aimee and I adopted the “Whatever Stella wants, Stella gets” mantra of parenting. I’m sure it’s every 2-year olds dream to demand whatever they want like a mini-dictator and have every adult in hearing distance go running to make every dream come true. I remember once morning at 6:45am, Stella requested cupcakes for breakfast and we were all out. My dad (“Poppa”), heard her and hopped right into his car and drove to the 24-hour supermarket down the street, returning with cupcakes within minutes of her request. That first fall after her diagnosis, we literally watched 13 hours of Dora the Explorer each day. Sitting on the couch, bodies aching, eyes burning from watching the television, we dared not turn off Dora or suggest anything else because this was what Stella wanted. DeeDee bought her every piece of clothing you can imagine that had Dora on it; pants, pyjamas, socks, shirts. When she showed an interest in reading things you could see or feel, GrandPa and Nanny Sandy bought her every single children’s book Indigo carried that had any kind of pop-up, or textured page. In winter when Starbucks came out with a “Holiday Sandwich” Stella liked with stuffing and cranberries in it, Tutu would go to multiple Starbucks in a day trying to find one that still had the seasonal sandwich in stock.
“You want 16 chocolate Timbits, Stella? Sure”.
“You want to sleep in bed with your mommies every night? Absolutely!”
“You want to go to the zoo this morning and then the farm this afternoon? Of course!”
“You don’t want to brush your teeth? Fine”.
“You want to read 2 hours of bedtime stories? Happy to”.
“Ice cream for breakfast? Everyday, my love”.
We just did anything and everything she wanted. Nobody worked. Nobody needed to cook (our friends and family literally fed us for 18 months). Nobody had anything else to do other than play with Stella and give her everything and anything she wanted. She sat on that couch and gave orders like the Royalty she thought she was, and we just followed orders all the while doing funny voices and ridiculous dances. With no need to think of the consequences of what doing everything your 2-year old tells you to do, Aimee and I just enjoyed watching her glow with light and joy.
But parenting Sam and Hugo is different. Sam is older now than the age that Stella was when she was diagnosed (he’s 28 months), and Hugo is 18 months. They test us. They push us. They demand things constantly. And I’m having trouble figuring out how to parent for keeps— how to balance the need we all have to instill discipline and boundaries, while still giving enough to ensure Stella’s lessons of fun and love are our guiding principles.
After you lose a child, you know how quickly a small, beautiful little life can be ripped from your arms. It makes sense to take nothing for granted and to waste no moment. It’s a goal to try to speak calmly to the boys no matter what is going on and to create fun and beautiful memories with them. But at the same time, I can’t just parent with complete indulgence…with a total lack of discipline and no use of the word “no”…but I want to. I want to because parenting Stella became so much more fun and happy when I did that. But we were only going to have her for a short while, so the long-term effects of this extremely permissive parenting, were not an issue. So, I struggle. I give in to the boys a lot. And recently, I’ve noticed that, in some cases, my boys are becoming unruly.
When Sam calls to me at 4am and asks me to lie with him in the bed, I know I shouldn’t. I know it’s better for him and better for my sleep if he learns to just put himself down. But when he wraps his tiny toddler arms around my neck and pulls me in for a cuddle, I want to freeze time. I think about how soon it will be that he’s saying, “Mo-om!” and rolling his eyes and doesn’t want me anywhere near him.
Sometimes my arms ache from carrying Hugo around all the time. He wants to be held constantly. It makes it hard to cook, eat, fold, clean, etc. I should just put him down…I’m spoiling him. But how much longer will he want to be holding on? Soon enough, he’ll be pushing me away.
I want to give them everything they want…cookies…staying up past bedtime to read books in bed…sips of my ginger ale…hooky days from daycare. But I know I shouldn’t, and can’t.
I watched Sam and Hugo this morning, both totally naked, leaping from the couch to the pillows they had thrown on the ground. They were laughing and shouting and climbing. They had never looked more like wild monkey’s to me. I kept saying, “Samson…don’t stand on the couch”, “Hugo, no jumping on Sam”, “Sam and Hugo, please be careful!”. If they heard me at all, they didn’t show it. They threw toys and spilt milk and knocked over the side table and then Sam peed on the floor. They were wild and I couldn’t control them.
I knew the lack of discipline I’ve been giving my boys was serious when I worked a funeral on the weekend (as part of my school program for becoming a licensed Funeral Director), and I was in constant awe of the fact that when I gave people directions at the funeral, they actually listened to me. It had been so long since that happened! I said, “please come to the visitation room if you haven’t paid your final respects” and an entire room full of people got up and went to see their loved one next door. I was actually stunned for a moment that anyone paid attention, and then I felt completely elated.
I had spent 20 minutes that same morning chasing Sam around with a pair of socks, trying to get him to put them on.
Let me tell you…being elated that a group of people at a funeral followed the simple directions of their Funeral Director is not a good sign of my expectations of people.
So, how do you do this? How do you parent a child as though you’re going to get to keep them and send them into adulthood? What is the magic recipe for fun/freedom/self-expression vs. control/safety/discipline?
I have no idea. I’m getting quite used to being clueless when it comes to parenting. It doesn’t scare me too much anymore that I have no idea what I’m doing. Some days it’s just about surviving. Some days it’s about creating memories. Some days it’s easy and some days I just want to pluck my eyebrows out one hair at a time because I think it would be less painful and tedious than parenting. Mostly, I just work hard each day and do the best I can. Some days I kick ass. Some days I get my ass kicked. But everyday, I make sure I tell my kids that I love them. I hope that’s enough to get us all through the rough patches, and I hope they remember that when I have to do and say things that they don’t understand, and don’t like.
Tonight getting ready for bed, both boys sat happily in my lap and pressed their soft cheeks into my neck as I read stories. I inhaled the smell of baby shampoo and watched their eyes dance and widen as the “tickle monster” made an appearance. Tonight the boys didn’t seem to care if I was good or bad at parenting, they just cared that I wrapped them tightly in towels after bath so they didn’t get too cold, cared that I sang a song while they brushed their teeth and cared that I knew exactly where Spot was hiding during story time.
All three of my kids are totally different. They grow, they change, and the way I parent them changes. I change. Stella, Sam and Hugo have all shown me new things to find joy in, and new ways to look at the world.
There is a saying that says, “Children learn what they live”. If this is true, no matter what happens as we continue this great unknown parenting journey, Hugo and Sam will learn three things for sure: love, joy and chocolate timbits.
For today, that’s enough.
A picture perfect family…NOT! (Photo by Heather Pollock):
Even sitting still for a picture is impossible!
Playtime! (Hugo is wearing Stella’s old pyjamas):
Colouring on the paper is optional (Stella’s rule that Sam follows):
Stella, June 2011: