Monday, December 31, 2012

Tuesday, December 25, 2012

Monday, November 12, 2012

"I lived with her and not above her"

On Saturday evening, my friends Jenn, Stacey and I attended a public celebration of Stella's life. Earlier in the week there was a private funeral for family and friends, but she touched so many people that her family and friends decided to include the public in saying goodbye to her. They did this at an event they called Stella-bration.

It was held in the evening at Riverdale Park in Toronto, right outside the gates to Riverdale Farm, which was Stella's favourite place in the world.

We got there early, and since Jenn has mutual friends of Stella's moms, we were able to meet Mishi and Aimee. We just said a brief hello to each of them. Mishi held my hand so tightly, smiled so brightly, even noticed that my friend Stacey wasn't dressed warmly enough, and my immediate thought was how strong she is. I'm sure she doesn't feel that way, and she probably hates hearing it, but that was my immediate impression. I told her who I was, that I'd written the blog post that she and her sister Heather had read and commented on. She told me that it was incredible, and I replied that I was glad she'd read it because Stella was very special.

Hundreds of people turned out for the Stella-bration. There was so much thought put into every single detail. The paths were lined with lanterns. There was a huge picture of Stella. Wonderful music was playing (we cried when they played I Don't Want to Live On the Moon from Sesame Street while we stood looking at the picture of Stella and reflecting on all we had learned from her.)

It was chilly, cloudy, a bit of dampness in the air. Upon arrival, everyone was given a program, a candle, and a small stone with a star on it, and directed to Stella's tree, where we took a moment to think about Stella, shed some tears, and leave our stones and gifts. Stella's Poppa and a friend played the trumpet to announce the beginning of the ceremony. Several of Stella's family members and friends stood up and told their favourite Stella stories. There were some tears during this part of the ceremony, but much more laughter because Stella was quite a character. I was touched by how she was such a typical toddler, and yet such a remarkable child at the same time.

After the speeches, we had a Timbit Toast. Timbits, for those who don't know, are small, round "donut holes" made by Tim Hortons, an extremely popular coffee and donut chain in Canada. Stella loved chocolate Timbits and her Poppa brought her one every single day. Many people had brought Timbits and Jenn passed our box around to some people who didn't have any. We all said, "Stella, this Timbit is for you," and then we ate them like Cookie Monster.

And then it was time for the candlelight vigil and sing-along. We were right at the front so there was a lantern in front of us, which we used to light our candles. Volunteers started lighting other people's candles, and those with lit candles shared their flames with those around them, so that before long, there was a beautiful sea of candle-lit faces. We sang three songs, Thank You for Being a Friend (the theme song from Golden Girls, because Stella was a big fan of the show), Twinkle Twinkle Little Star, and finally, Happy Birthday. Throughout the songs, it was a bit windy and people's candles were sporadically going out, with other people lighting them back up again, so that, when it came time to sing Happy Birthday, the candles were, for the most part, lit. We sang the song and on the count of three, we were all going to blow out our candles. The MC counted to two and just as we all took a breath and got ready to blow, a big gust of wind came along and all of the candles went out at the exact same moment. It was an incredible moment that I will never forget.

The Stella-bration was one of the most loving, beautiful, even joyful events I've ever attended. A true celebration. Seeing Stella's moms, and the tight circle of family and friends around them, made me realize that they are going to be okay. Their lives will always have an undertone of sadness now, but that doesn't mean they can't be happy. They are choosing to live the fullest lives they can to honour their daughter, and using the lessons they learned from her to be the best parents they can possibly be to their two sons.

In her speech, Mishi said, "The last 16 months with her were the happiest of my life because I lived with her and not above her. We experienced life together." She urged us not to parent our children from above them, and to take that extra moment whenever it's there to read another story, cuddle a minute longer, and take the time to do what your child wants to do and not what you think they should want to do.

She talked about how Stella used to love the orangutans at the zoo. Stella wanted to stay and watch them forever, but Mishi and Aimee would rush their tantruming daughter away from them after a few minutes because they thought she should want to see the elephants or the giraffes. After her diagnosis, they decided to let her watch the orangutans for as long as she wanted. They watched them for 90 minutes, and although they'd seen the orangutans many times, Stella forced them to really watch them, and they noticed things about them that they had never noticed before.

The whole time Mishi was telling this story, I was thinking about a time when Ian was just learning to walk. I'd read somewhere that if you have time, you should go for a walk with your toddler and let your toddler lead the way. That's exactly what I did. Ian and I went on a long walk and I followed him. We were in no rush at all. If he wanted to stop and look at the dog or the fence or the basketball net, that's what we did. He even learned two new words on that walk. It remains one of my favourite memories ever. What I realized while Mishi was talking was that the reason it's one of my favourite memories is because it only happened once. And once is not enough.

Since Stella died, I have thought of her and the lessons I took from her journey every single day. Several times a day, I find myself stopping and asking myself if this moment is worth a fight or not. Sometimes it is; many times it's not. For a week after Halloween, I asked myself if it really mattered if the kids had a sucker or a piece of gum in the morning. Halloween had just happened, the candy was right there where they could see it, and what difference did it make if they had it now or later? So I let them have it when they wanted it. It saved us all the wasted energy and emotion of an argument, and eating a sucker in the morning actually didn't rot their teeth on the spot or ruin their eating habits for life. It only made them happy.

Since Stella died, I have smiled at my kids more and worked hard at making more moments special. An evening walk with Ian and the dog turned into a beautiful experience because Ian wanted to go stand in the middle of the baseball field, and instead of complaining that I was cold and it was dark and we needed to get home because it was almost bedtime, I thought of Stella and said okay. We stood in the middle of the field and we held hands and looked at the stars. There weren't a lot of stars that night, just enough for Ian to pick one out and tell me how he was going to climb a ladder to the sky and bring the star down, words that took my breath away and gave me a much-needed reminder of the magic of childhood, because he believed with everything in him that he could do that.

I have decided to keep the TV off in the mornings. The main reason I came to this decision was because Ian has been very rough with the animals lately. I decided that in order to save the animals from toddler torture, or at least decrease the amount of toddler torture they were receiving, it might help if Ian had some motivation, the motivation being a bedtime TV show if he tried hard to remember during the day that we don't pound the crap out of animals

Our old routine was that when the kids woke up (they wake up really early; if it's 6:30 we feel like we slept in), we would turn the TV on in our room and they would watch a show or two while we snoozed for another half an hour or 40 minutes. During this time, they would get bored and start bugging each other and Kim or I would end up yelling at them that if they didn't stop, the TV would be turned off. At times, we would get so frustrated because we just wanted ten more minutes that we even got mad and told them to leave our room and go play somewhere else for a few minutes until we were ready to get up.

Kim was on overnights the week I decided to change our morning routine, so I was on my own. The first morning was rough. The kids were up just before 6, and I just wanted to turn the TV on and go back to sleep. I can't even explain how badly I wanted to do that. But I thought about all the things we could do if I didn't turn the TV on, so I got up. We all got up, and we took the dog for a walk (it was still dark out!) and I let the kids walk in their pajamas, which resulted in a big round of cheers and giggles. We had breakfast together. I had time to read them a couple of books and help them get a craft going before I had to start on the morning routine of making lunch, packing bags, and getting us all ready and out the door. The whole morning just went at a much nicer, much less frantic pace, and we were all happier for it. So we've continued to do it. What we do with our extra morning time varies. Some days we walk the dog, some days we decide to stay home and walk the dog later. This morning, Ian and I went downstairs in the dark and before he had breakfast, he told me he was cold. I put a shirt over his pajama top but when I went to start breakfast he insisted he was still cold. Normally, I would be in a rush, and I would be cranky and stressed, and I would have told him to go upstairs and get a sweater or a blanket. But today, I wasn't in a rush, so I said, "Oh, do you need a cuddle?" His face lit up and he said yes, and he crawled into my lap and I wrapped him in the biggest, tightest, warmest hug I could and he put his head on my chest and we stayed like that for at least five minutes before he got bored and squirmed away from me. As soon as he got down, Erik came down the stairs and then he crawled into my lap and I wrapped him in the biggest, tightest, warmest hug I could and he put his head on my chest and we stayed like that for at least five minutes.

It turns out that quality time with the kids is way better than sleep.

Every day I'm making an effort to slow down whenever I can, to listen to them, to ask myself several times a day what the importance of this moment is, and what I can turn this moment into. I'm learning to make better choices. I'm not perfect. No one is. There are still and always will be times when I have very little patience. I still get frustrated and yell at times. But I've learned the importance of admitting to them when I'm wrong, and to forgive myself, because I'm human and let's face it, parenting is hard and kids can be frustrating. The important thing is that I appreciate my children. I've always appreciated them, but now, every single day, I take the time to acknowledge that, and not just to myself. I tell them and show them that they are appreciated. That they are loved. That they are the dreams come true that they are to me. Every day now, I remember that it needs to exist outside my own head and heart.

I'd learned the lesson already from reading Stella's blog, but when Mishi said, "I lived with her and not above her", the lesson was solidified into a brief series of words that I can hold close and repeat to myself - and to other people - as we move forward in this wonderful, confusing, and difficult journey of raising children.

You can read more about the Stella-bration in this article from the Toronto Star.

Wednesday, October 24, 2012

Stella Joy

I've written a couple of times before about a little girl named Stella Joy Bruner-Methven, and I wanted to post more about her now because she had such an impact on the lives of so many people, myself included, that I want her story included on my blog for my children to read someday. I want them to know that this story was a big part of why I became the mom that I am becoming. I believe that witnessing Stella's story through the eloquent words of her two moms on their blog has forever changed the way I will live my life, and more importantly, the way I will parent.

Stella was diagnosed with an inoperable brain tumour in June of 2011, and given three months to live. She was two years and two months old. I remember sobbing over a post where one of her moms said she would never see her third birthday. Well, she did see her third birthday, and her 3.5 year birthday. She lived through the births of not one, but two baby brothers, and named them herself (Sam and Hugo.)

But there was never a time when anyone thought she could survive this. It was just a question of how long. On several occasions, she slipped into sleep for a few days and her doctors and parents thought it was the end. And then she would bounce back, the last time even able to eat solid foods again.

Stella slipped into yet another deep sleep this month, but her heart beat strong and her breathing stayed steady for 12 days. Although she could not be roused, her parents say she showed signs that she could hear them, sticking out her tongue to say yes (a trick she'd learned to communicate once the tumour took her ability to speak) when asked if she wanted ice chips rubbed on her lips, and whining when they stopped reading a story.

For 12 days she lay in her parents' bed while her family - moms, brothers, aunts, uncles, cousins, grandparents, friends - came and went around her. She was never left alone once, and there was still joy and laughter surrounding her. On her 3.5 year birthday, they bought cupcakes and sang Happy Birthday to her one last time. The next day, her brother Sam turned one, and again they celebrated around Stella. The day after that, her cousin turned one, and again, she hung on for one more birthday party.

It was the day after that, October 22nd, that she passed away, in the arms of her mothers and surrounded by family. Her mom says her death was peaceful and beautiful.

We often hear stories like this and of course, we are touched by them. But, like so many other strangers, I really got involved with this one. At times I wanted to turn away from my computer screen, I wanted to stop checking in on Stella, it was all too sad, but I couldn't. And I know now that the reason I couldn't was because I wasn't witnessing Stella's death, I was witnessing her life. Her parents, though they were devastated, gave Stella the most beautiful life you could imagine. When she was still well, they took her on trips and playdates and let her eat ice cream for breakfast every day. When those things were no longer possible, they snuggled up on the couch for months because that was what Stella needed. And when Stella wanted to get out in the world again, they went out in the world again. They once again took her places - swimming, music class, zoos, farms, friends' houses, her old daycare. Right up until the end, they gave Stella what she needed and wanted. At every moment, they were following her lead.

And along the way, something beautiful happened. Her moms, too, found joy in life. Even during this devastating time, they found joy at every turn. And seeing Stella live this beautiful, short life, and seeing that her parents could find the joy in it... well, it made hundreds of internet strangers stop, take a deep breath, and learn the most important lessons about life.

Stella taught us what it means to be alive, to be present in the world. Despite everything that happened to her - her tumour took her physical abilities away one by one, eventually leaving her body weaker than a newborn baby's - she loved life. She never stopped smiling. As her mom said, even when she couldn't smile anymore, her eyes smiled. And she was one determined little girl. One of the most touching stories about Stella - the one that will stay with people forever - is how one day, out of the blue, she demanded (in whatever way she could at the time) to go downstairs to paint with her cousin. She hadn't been to the basement playroom in months but her parents happily took her down. She kept biting the paintbrush that her mom was trying to help her paint with, and her mom kept saying, "No, Stella, we don't eat the paintbrush." And then they realized that Stella wasn't trying to eat the paintbrush. She was using her mouth to hold the paintbrush so she could paint! 

I learned another lesson, too. I learned, really learned, finally, how my mom felt when my brother died. I had some knowledge, at the time, how horrible it was for her. And my knowledge of this increased tenfold when I became a mother myself. But I didn't know what to do when he died, and I never really did know what to do afterwards, either. I always thought the goal was to distract her from her grief. But Stella's moms taught me that I've been doing the wrong thing all along. I need to talk to my mom about my brother, and listen when she talks about him without trying to make her happy again. I need to let her cry. I need to stop trying to cheer her up during the difficult times of the year. I will be forever grateful that I learned this lesson.

Now Stella is gone, and the forums on her web site are bursting at the seams with stories of the lessons we've learned from Stella and her moms and the inspiring support network that surrounded them every moment. How so many parents have found a lot more patience with their kids. We hold them tighter, tell them we love them more often, let them eat junk for breakfast sometimes, enjoy our time with them more, and - this was big for me - fear the future less. I have always had a deep fear of the future, of not having any control over what happens to me, my wife or my kids. I still have the fear, but what I've realized is that I truly don't have any control, so I'm wasting time and energy worrying. It's important to enjoy each day. Whether it's a good day or a terrible day, there are moments of joy in each and every one. Stella's moms found joy in the worst time of their lives, and because they could, and because they shared it, I can, too. The lesson I learned is that I don't have to be scared, because it turns out that even on the darkest days, there will always be joy. At times, in all of our lives, those moments may be fleeting and hard to find, but there will always be joy.

None of this changes the fact that Stella is gone, that these two women have to live the rest of their lives without their daughter. The horror of that is still very real, and my heart was heavy the day after Stella died, when the enormity of her parents' loss really hit me. I truly can't imagine what that would feel like. But now, because of Stella's moms, I know what it means to be strong and brave, and it turns out being strong and brave is not at all what you think. Being strong and brave is to be honest, to cry, to scream, to feel and express the anger and grief and unfairness. Being strong and brave is to acknowledge that you have no choice but to walk the road you're on, and to know that you need help because you can't walk it alone, not when, at times, you can't even stand. Being strong and brave is to still think about your future, and to do something about it.

Being strong and brave is being open to learning lessons from all of that. And being strong and brave is sharing those lessons. Because other people need them. I did.

Rest in peace, Stella. Your life meant something. You made a huge difference in the lives and experiences of many parents all over the world, which will have a ripple effect through generations of parents to come. You will never be forgotten.