A Bean’s Life

My son is currently in Australia without me.

He’s with his Dad, of course, visiting our family, but it feels slightly surreal that I feel safe enough for him to be 15,558 kilometres away from me.

Over the past couple of years, the Bean has grown so much in independence and maturity. He is learning to navigate the world on his own, which is just as it should be for a 10-almost-11-year-old boy.

I’m quite conscious of how fast time passes, and that soon he’ll be leaving his childhood years behind. It’s a strange feeling, a keen ache, knowing that our children will grow up, and no longer need their parents on a daily basis. They will have their own lives to live, mistakes to make, and world to discover.

That feeling is intensified when it comes to Gavin, because his existence feels like a gift. I would love to press pause on this season of our lives, when he is at this kind-of perfect age, reasonable and self-sufficient, yet still child enough to want to hold his mum’s hand.

I’m also happy though, to see him thrive, and grow, and become. This year has been a good one. His health continues stable. Skye’s health continues stable. For the most part, that’s all I ask for. The rest of it – life, I mean – is a work in progress, and we manage to figure it out, together.

It always stuns me, slightly, to return to this blog and see how much time has passed since I last posted. If I’m not posting here, it’s generally because life is busy, rushing past at the speed of light, and I’m hard put to find the time to breathe, let alone blog.

June is always very full. It marks the end of each school year, as we stand on the cusp of all of our summer adventures, with short weeks of glorious hot weather ahead of us, complete with lake swims and ice cream. We’ve got outdoor birthday parties and long, light nights for soccer games. We’re back on our bikes, waiting for Toronto’s pools to open, and gearing up for summer camp.

But I’m always thoughtful in June too, and a little sad, and a little wistful. Because today is D-day, and when June 20th rolls around, I think back to that horrendous day that still feels like a black blot on my brain, 8 long years later. It was the day that we took Gavin to emerge at Sick Kids. It was the day that we finally did a CT scan. It was the day that we found out he had a brain tumour. It was Father’s Day.

This year, in 2018, Father’s Day didn’t fall on the 20th, which is great for us.

8 years! We had no idea, then, what the future would hold. It was a time of great fear, and also of great joy. On June 22, 2010,  the Bean’s tumour was removed through epic surgical feats. So for me, June 20th and June 22nd are always those days.

Although today is Wednesday. Today is dropping the kids off at school and programs, and having a nice coffee with a friend. Today is getting stuff done, and not worrying and not fear-ing. And the 22nd is Friday, and it will be going on a field trip with my son’s grade 4 class, and attending an evening soccer game in the park, with all the other normal families and kids, and we will blend in and look like them, although I sometimes feel that there is a huge, blaring, neon arrow above our heads, flashing, CANCER!!

Because, what we’ve seen has shaped us, and the fears of what will be shape us too. But the past is behind us, and the future is not known, so I do my very best to live in the moment, and to live a most ordinary and magical life.

And my life is absolutely both of those things. I attempt to approach each day with gratitude, deep gratitude for another year, and deep gratitude, that, scan by scan, Skye still shows no signs.

So the days whiz past, in a blur of the usual hectic family life, swim lessons and piano recitals and trying to figure out where all the time goes. Some of those days still have to be spent at the hospital, and in appointments, and last month, the Bean had a few nights’ stay at the HSC, due to a particularly bad episode of CVS. These days, whilst upsetting and difficult, are becoming rarer.

Gavin’s last scans were in January of this year, and all was well. Skye had hers then too, with the next round coming up next month, in July. She is such a beautiful, happy and active 3-year old that I can’t bear to entertain the possibility that something dreadful is brewing. I tend not to think about or focus on her scans until the day is upon us, as otherwise the anxiety is too much to live with.

So, to bring my focus around to the good. 2017 was a huge year in our lives, with lots of travel – Hong Kong, Europe and Australia, yes!! – and a big home reno project that went on for far too long, as they so often do, but resulted in some great changes on the home front.

2018 has brought more stability and exciting new changes: Gav will go to sleep-over camp for the first time this summer. (Two weeks!) Skye will begin school in junior kindergarten in the fall. These are the kind of changes I welcome.

When I blow out birthday candles, break a wishbone, throw coins in fountains, or see the first star of the evening, like a child, I close my eyes and make a wish. My wishes are always the same. Of course.

So with a heart full of the most immense gratitude, I can declare that my wishes have all come true, again. Heaving a great sigh, and pulling myself together, I move on with no more worries to beset me. For the next six months, at least.

The wishes of a child are a completely different matter. Make a wish, we tell them on their birthdays, and they close their eyes and wish for fantastical and fabulous and very ordinary things.

If someone offered you a trip, almost anywhere in the world, where would you go? You, being an adult, would probably overthink it, and try to balance your desires with practicality. A child’s heart is most eminently impractical. So when asked this question, by the Children’s Wish Foundation, my son said, without wavering, “I want to go to China.” That’s how our recent trip to Hong Kong came to be.

Our thoughts on what this trip would be took shape over the last six months, as we prepared him for a strange new world. We ate dim sum, and tried to teach him to use chop sticks, (without much success) and read Hong Kong travel books. I forced him to listen to Cantonese phrases over breakfast. And then we all concluded that learning Chinese might just be beyond us, though it pains me to admit it.

The day came – January 1st – and there wasn’t anything to prevent us from boarding the plane, and finally, after being given this wish trip six years ago, we went! It felt right, starting 2017 off on with an epic adventure.

Of course, a week is, practically speaking, too short to fly 15 hours with a 13-hour time shift. Particularly with two young children. (For more on how the little one fared, click here.) We’re not really on speaking terms with being practical though, and despite pretty crazy jet-lag, had an amazing family holiday.

Hong Kong Disneyland

We let Gavin set the schedule and decide on what we were doing every day. We had to rethink certain things that we thought we’d do, like a harbour cruise, in favour of Gavin’s choices, in that instance: a double-decker bus tour. The Bean loved having his own camera and Octopus card in his pocket, and money in his wallet to spend on souvenirs.

Po Lin Monastery on the island of Lantau

The Big Buddha

The streets of Central

The Force is strong with this one

This kid.

We all want to express how grateful we are to Children’s Wish for making his dreams come true. It is really an amazing and fulfilling thing, being part of a wish becoming a reality.

I also want to personally thank all of the absolutely wonderful people I am blessed to count amongst my friends and family – you all are an amazing crowd of cheerleaders who have never let me down, in all these years. The power of your positivity has made many things possible. Sending much love to all!

Tomorrow marks the Chinese New Year, so wishing all a very happy new year and Gung Hay Fat Choy!!

I’m doing busywork today. Organizing old papers. Vacuuming. Fixing a picture-frame. Anything, really, that might distract me from the thought of Skye’s MRI on Thursday, July 21st.  This will be her very first one, and I’m dreading it.

Contemplating Thursday morning has my abdomen tied up in knots. Do I have reason to believe that the scan will be anything but clear? No. And yes. Well, realistically, no. But the fear that accompanies each scan for my children is all-encompassing, and subsumes logic and rational thought.

Skye has only had, so far, the one cranial ultrasound, which didn’t reveal anything frightening, but took place more than a year ago. She is now almost 21 months. The age at which Gavin was diagnosed. On the recommendation of Gavin’s neuro-oncology team, we’ve now decided to begin surveillance MRIs, in the hopes of catching the beast early, or better yet, not at all.

Over the past couple of months, a few things have happened which are worrisome but not exactly telling. One day during lunch, Skye blanked out for several long seconds. It looked to me like an absence seizure. I already had an appointment lined up with a paediatric neurologist, just to keep an extra set of eyes on her, and coincidentally they were able to give me an appointment for the next day. My meeting with him was somewhat reassuring, although Skye wailed the whole time, making it difficult to chat. He was fairly certain that a brain tumour wouldn’t cause that type of seizure, but to check whether it was indeed seizure activity, he referred us to Sick Kids for an EEG.

I’m now in a place where a seizure disorder doesn’t worry me all that much. If that is Skye’s fate, it’s a condition we can live with. Brain tumours are not livable. My worry is always, always that. Every unusual head tilt or slight shift of balance, or unwell feeling stirs up powerful, sad memories.

The other issue which has cropped up and become more obvious over the past few weeks is Skye’s tendency to in-toe when she walks. (AKA walking pigeon-toed.) This little habit has become worse and worse, so that she very often trips over her own feet and falls. The number of falls she has daily is alarming. It wouldn’t be alarming to any other parent. He/she would probably just think, “Oh, my poor, clumsy, child.”

I can’t help but think back to the number of falls that Gavin took as a toddler. I had begun to wonder if there was something more at play several months before his diagnosis. However, I don’t know, and I will never know, if his tumour was actually there at that time, or if he just suffers from poor balance – as I do – and those tumbles were completely unrelated.

Of course, as time went on with him, he became ill. Lethargic, unhappy and unable to walk, every step resulting in a fall as his vestibular system was completely compromised.

Skye is not lethargic. Nor is she unhappy. She was ill last weekend, with a fever for 48 hours, and a slightly poky appetite. I would say that she’s still not over that entirely, but her spirits are, as always, wonderful. She’s my sweet, fun-loving happy girl, who gets up in the morning and demands to be dressed in a bathing-suit, just in case we make it to the pool.

Last week I took her to the physiotherapist, to try to begin to correct this in-toeing problem. The physio felt that the issue is due to her ongoing hip problems. She displays the classic symptoms: preferring to sit in a “W”, walking with feet turned in, and tripping and falling frequently. So that also is reassuring, an explanation for all these falls that is not the brain tumour explanation. My head knows that.

Unfortunately, I’m leading with the heart this week. And my heart says I can’t stand this. I can’t bear the thought of her diagnosis. My heart says, What will we do? How will we go on? Can we survive this again?

So I’m projecting to Friday, which is, of course, Craig’s birthday. I’m hoping for fast results. I’m hoping, praying, believing in clear. That’s all I can do.

Gavin, Skye and I spent the morning in the neuro-oncology clinic to go over the results of Gavin’s most recent MRI. Once again, I’m overjoyed to report that Gav’s scans were clear. This means that we have another 6 months to go until the next one, at which point they will become annual.

SIX. YEARS.

Hard to believe that this silly, bright, fun-loving, goofy, stubborn boy is going to be 8 in a couple of short months.

Yesterday, Gavin was having a low day. Just one of those days where a few things happened that made him feel a little bit teary and down. As he and I talked it over in the evening he said,

“I don’t want to be different. I wish I was like everybody else.”

And I told him, “Buddy, everyone wants to be just like everybody else. But nobody is.”

Are there more grown-ups or kids in the world? – Bean

My son asked me that a few days ago, and I spent a couple of minutes explaining that there are more grown-ups in the world, simply because we all spend far more of our lives being adults than we do being children. Plus, we’re all living longer than we used to, say, 100 years ago. I guess that made sense to him, because he left it there, and moved on to other things.

It brought home to me though, how very fleeting childhood is. In our society, we are considered “children” until the age of 18. The true end of kidhood though, seems to hover somewhere around the age of 12, with most teens hurtling out of adolescence as quickly as they can, ready to brush off the pixie dust and pick up the reins of their adult lives.

Now that Gavin is 7, I’m becoming more and more aware that the days in which he will continue to be a child are not many. It’s also been, somewhat sadly, brought home to me that I, myself, am contributing to the end of his little-kid days with my curmudgeonly behaviour.

Back in early December, we went to a family Christmas brunch that we attend every year. There is a Santa photo-op, and each child receives a gift from The Man in Red. Bean has always viewed Santa Claus with an awe close to reverence. At some Santa visits in the past, he’s been so nervous he could barely speak, like a fan-girl getting to meet her favourite celebrity. On this occasion, I urged him forward, and encouraged him to tell Santa what he wanted for Christmas. To my surprise, with a tight-lipped grin, he didn’t say anything. Again, I asked him if he wanted to tell Santa, but he just shook his head. I thought he was feeling shy, so I dropped it, and we snapped a few pictures with the jolly old elf before moving on to our bacon and eggs.

The following week, on our walk to school, he was talking about Christmas and what he wanted as gifts. I was only half paying attention, lazily complacent, as he’d already told me what he’d set his heart on, a beautiful art kit in a carrying case, which I intended to get him as his Santa gift. Then he said something that caught my attention,

But there’s one other thing I want Santa to bring me, but I didn’t ask him for it when I saw him.

“Oh, that’s right,” I said. “What is the other thing that you want?”

I’m not telling YOU he responded. Santa knows what I want and you’ll find out on Christmas morning when he brings it to me!

Wow. A shot of amusement-tinged panic went through me.

I reiterated that he had to tell Santa what it was that he wanted though, and he hadn’t told him at the family brunch. Pushing further, I wondered out loud why he hadn’t wanted to tell him. He skirted the issue for a few minutes, before it all finally came tumbling out. He hadn’t told Santa what he wanted because I was there, and he felt sure that his mum would be the epic killjoy that quashed his Christmas dreams, by telling Santa not to bring him what he wanted. Because he knew that I didn’t want him to receive the thing he hankered for.

What, you ask, was this longed-for item?

Why, LEGO, of course.

LEGO, the joy of children everywhere and the bane of a parent’s existence. LEGO underfoot in teensy bits. LEGO to be organized. LEGO getting dusty on every surface of your child’s room. Whole swathes of Pinterest dedicated to ways of keeping it orderly. Ever newer and grander sets required to keep upping the ante each year.

Let me just state for the record, that Bean has a fairly insane amount of LEGO, as many members of our family have been very generous to him. My efforts to keep it contained to one area of the house – his room – have been largely successful. I have spent hours sorting bricks and putting mini-figures into little plastic hardware boxes, each with a head and legs, if not their original head or legs. I have also, happily! spent hours putting together sets with him and playing the LEGO role-playing games dear to his heart.

And apparently, I have also complained, ad naseum, about how much LEGO he has, and avowed that NO MORE LEGO will be coming into this house, ever. Ever. I have threatened to “clean up” his LEGO while he’s at school if he doesn’t put it away himself. I have said things like, “Do you really need more LEGO, buddy?” when he’s expressed a yearning for a particular Minecraft set.

You can see why he didn’t want to tell Santa that he wanted LEGO in front of his dear old mummy.

I felt like an evil shrew trying to vacuum up my son’s pixie dust.

With a bit of fast talking, I convinced him to share with me the type of LEGO set he was after, and then made sure that he told Santa at our official Santa-session just before Christmas. On the day, he was overjoyed to receive a set from Santa, along with a couple of other sets from family members, including me.

I had come to the sudden, belated realization, that the years in which he’ll be asking for LEGO are short. At the age of 7, he’s still fully on board with both the parent-perpetuated myth of Santa and the magic of Christmas. I want him to go on believing in its magic for as long as he possibly can. Especially, as so many days of his childhood have been decidedly un-magical. Days of hospital, and drugs, and vomit, and pain, and procedures.

Some day, not too long from now, as a teen or young adult, he’ll decide what to do with the several tonnes of LEGO amassed in our house. For now, though, our home still resounds with Star Wars laser-blasts and the clink, clink, clink of bricks being sorted and assessed. Although all these little plastic bits set off my OCD, I’m okay with that.

I’m more than okay with that. I’m holding on to the magic. Holding on tight with both hands.

It’s Skye’s first birthday!

365 days have passed since she made her official debut. In all of those days she has brought me joy, laughter, comfort, and love. She is truly a gift to us and despite the frustrations that babyhood can bring, every day I try to enjoy her and not worry about the future.

Not worrying is my life’s work.

It’s especially so when she feels unwell, which she has many times in her first year. This week has been difficult, and I wish I could report that she feels 100% well on her birthday, but the unfortunate truth is that she has been very sick this week, with a terrible cold and raging fever that kept me up all night with her, two nights running. Finally, yesterday evening, I noticed an infected ear, and quickly packed her off to the walk-in for some antibiotics, where I discovered that both ears are infected.

So. Quite normal stuff for babies. Colds, ear infections, viral infections. For me, though, and all brain tumour parents, the question whatifwhatifwhatif  is always lurking, ready to pounce. A pleasant afternoon is shattered by a strange tilt of the head or a distant stare or a sudden stumble. When symptoms drag on, and on, for days, it’s a huge task to will positive belief to the surface. To not start thinking about the hospital, and the whatifs, and all the painful things that still haunt me about Gavin’s experiences as a baby.

This hasn’t been the first birthday I imagined for my sweet Skye, so we will postpone cake and balloons until Halloween, which is also my 40th birthday. And have one, big, festive, costumed extravaganza, knowing that we specialize in 11th-hour turnarounds, and last-minute triumphs.

My birthday gift to her – and to myself – is to focus a laser-like sense of gratitude on how much light she has brought to our world. Her beaming, toothy grin makes friends wherever we go, and her noisy exuberance has prompted many comments of “nice pipes.” When she wants something she tells us, using signs, words or screams if the other two don’t work. She loves music and points at the stereo, dancing, to show us she wants it turned on. She is curious and funny and playful – just the way a 1-year-old should be. She adores her brother and grins when he comes over to squeeze her chubby legs.

At 1 there is no knowing what the long years of a person’s life will bring. Who will she be? Will she do well in school, excel at sports, be artistically talented? Will she be shy or make friends easily? Will she get married and have children of her own? Will she have a distinguished career in politics or become an internationally-known pop star?

Her future remains a mystery, with all that is yet to come. Now, though, I’ll make these birthday wishes for her: I wish for her to always know how loved she is. I wish for her to find friends to support her at all times. I wish that whatever she chooses to be, she finds peace and happiness.

And I wish for her health. I always, always wish for her good health, from every cell in my body to every cell in her body. I wish for that good INI1 gene to just do its thing, and for that changed one to just sit quiet.

Sweet 1! An age of wonder.

Poof!  Just like that, we are into week 2 of school, with the golden gates of summer slammed shut behind us. It’s always a bittersweet time of year, with the swimming and ice-cream-eating over, and everyone bustling, busy and getting back to school and work properly. To-do lists are long and intentions are good. We are going to be ON TIME for school everyday, no morning chaos and shouting this year!

Our July trip to Australia already seems like a distant memory. So distant, in fact, that when people ask Gavin what we did this summer, he’s like, “Oh, you know, camping, and going to the cottage and stuff.” Yeah, buddy, and also AUSTRALIA! To which he responds, “Oh yeah, right, we went to Australia too.”

The summer of 2015 has treated us well. It was the first summer in 3 years that was not marred by endless illness. We kicked it off with a 3-week trip Down Under. Flights were good, and Skye was a gem, apart from an unfortunate dislike to her Australian carseat which resulted in mucho crying on long drives. Craig and I almost got divorced on the side of the highway linking Sydney and Canberra, but these were small bumps in an otherwise smooth road.

On our return, my jet-lagged baby kept me up all night for a week but then settled back in, while Gav was off to camp at the High Park Nature Centre with one of his best buddies, E. Unlike last year, he was able to attend all week, without having to be picked  up or lie down and rest.

Gavin has continued to feel and be well. We have had a few very short episodes of headaches and vomiting, but all lasting less than 24 hours. Usually a little lie-down and something to eat or drink solves the problem quickly. A couple of times he’s had to go to bed early, but then has felt well on the following day. It all feels very miraculous and not-quite-real. I think we are still asking ourselves, Is this really our life?

The rest of our summer flew with cottage trips and a fun camp cabin weekend in Bon Echo Provincial Park. I felt blessed to get to spend some quality time with my sister and my niece, who were visiting from Vancouver.

As always, we wrapped the summer up with a birthday celebration extravaganza to ring in the 7th year of the Bean’s life. This year, Gav’s Uncle Ryan came to visit from New York, and we ended up having 3 separate parties for the birthday boy. What can I say, this kid is the best thing that’s ever happened to us, and he knows it!

Today is Gavin’s grandfather’s birthday. Happy birthday, Poppy!

Today is also the anniversary of Gavin’s surgery. 5 years ago, on Sunday the 20th, Father’s Day, we took Gavin to the hospital. On June 22nd, he emerged from the OR triumphant.

5 years that have been long and gone so fast. 5 years since my wee little man was found to have a giant tumour in his head. 5 years of sadness, grief and recovery. 5 years of joy, of time! Time together and apart, time to watch Bean grow and get older. Time in which I have gained so much, and learned so much. More than in all the other years of my life. These years have brought me the great gift of continued parenthood and love for my boy, and the sweet, sweet presence that is my Skye. (more…)

“Fortune changes when the time comes.”

Last Saturday, Gav and I were hanging around the kids’ discovery area of the ROM, our local museum, when I noticed this inscription written in Chinese on a large piece of serpentine. The placard advised us to run our fingers over the engraving, as it may bring us good luck. I reflected on those words as my fingertips traced the characters on the stone. (more…)