A Bean’s Life

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…)

Skye and I spent the majority of the day today at Sick Kids. We went to have her orthopaedic hip harness installed. I’d managed to shove the fact that she had to get this thing far into a dark corner of my mind for a couple of weeks, but finally had to face facts today that this was happening.

After registering for ultrasound, I began chatting with another mother in the waiting area. Her daughter is 4 months old and they were there for Ortho clinic. Turns out her baby also needed this harness and was currently wearing it. Of course I began grilling her about what it’s been like and what difficulties it has posed. (more…)

At the beginning of 2015 I resolved to try to unhitch our lives from the constant round of medical appointments and hospital visits that has been our fate for the last five years.

We visit Sick Kids on an almost weekly basis, and have other various appointments to attend. Between the two kids, I try to keep only two per week on the schedule, and book them outside of school hours for Gavin. He’s missed a total of 20 days of school this year, and cannot afford to miss one more. But sometimes it can’t be helped.

Recently I took Skye for an appointment with her paediatrician. While sitting in the waiting room, I overheard another family say to the assistant as they left, “Okay, see you in six months!” SIX MONTHS. The words wildest and dreams sprang to mind. (more…)

Today Skye had an ultrasound of her head.

Over the past several months, Craig and I have debated about doing this. We didn’t want to rely on imaging to be sure of her health, the way that we have for the past five years with Gavin. But then something would happen, so we decided to do it. Then decided not to. Then decided to. Then not. And so on.

Finally, her paediatrician decided for us, by suggesting that it might be beneficial for everyone’s peace of mind.

Peace of mind is something I lack. I have great days. And then I have hard days of nail-biting anxiety.

Although I can’t imagine that anyone exists today who hasn’t experienced some form of anxiety in their time – for the happy-go definitely lucky, let me define anxiety for you: The feeling that there is something terribly, terribly wrong, although all signs point to everything actually being alright. This feeling crushes out breath, induces headaches, and creates a constant din of chattery negative thoughts. Tears leak out easily, and small things, like sudden loud noises, send the anxious beetling into a corner to wait until their hearts stop pounding.

The problem with fearing that your child has a brain tumour is that everything can be indicative of a brain tumour. Babies are just neurologically unstable, not to mention unable to communicate.  So that weird motion, or expression, or sound, that long sleep, or long crying jag, or strange spit-up – yes, they could all be completely benign. Normal baby stuff. Nothing to worry about. Or something to worry about.

So the flip-flop of It’s nothing/What is it? exhausts me. I am trying every day to have faith, and have strong, wonderful people around me encouraging me to do so.

And Skye beams sunshine and charms the pants off of everyone and gives me a look that says, Stop worrying, Mama! I’m well. I’m so very healthy and well.

When I returned home this afternoon after collecting Gavin from school, the home phone blinked with a new message. Hardly anyone calls the home phone, except for my mother, so I went into panic mode as I pressed play and listened to the subdued voice of the  paediatrician’s assistant telling me to call regarding Skye’s ultrasound. From completion to results in less than three hours? Canadian healthcare does not work this way, so I called her with my heart pounding and pounding.

She said, “The ultrasound report says that everything appears to be normal. But it is not a very comprehensive look.”

Normal is all I need. I’ll take it!

I’m saddened that we needed to probe her little head to find this out. It was painful and traumatic for her, and I hated putting her through that. I hate that I needed the satisfaction of scans to believe in her – and already in her wee life she has been to the hospital half a dozen times.

It’s behind us. Results are normal.

She is well and ready to go to bed. Sweet dreams.

My brother was 2 years old when I was born. So he existed in a time without me, but I never existed in a time without him. As a result, my very earliest memories are of my brother’s rascally face peering over the edge of my crib. Of being liberated from said crib in the early morning to go downstairs and watch Spider-Man together. Of using my mother’s hideous 70’s terry-cloth aprons as Batman and Robin capes. Of riding Big Wheels around the block.

I was 5 years old when my sister was born. I was so pleased that she was a girl, not a boy. I remember looking down at her cute chubby legs and asking my mother if I could squeeze them. She and I shared a room for over 10 years of our childhood, which of course meant we were conflicted confidantes. I tried to rule the roost when it came to our games, but my young disciple was oftentimes less than willing.

In all the long years since then, our sibling connections have waxed, waned, evolved and changed. Siblings are the ones who’ve witnessed your whole metamorphosis from child to  gawky teenager to card-carrying adult. The ones who remember things about you that you are sure are false. The ones who remember things about you you wish they would just forget. That terrible hairstyle. The chubby phase. That time you made an ass of yourself.

I am blessed in my brother and sister. Our lives have taken us in different directions, but we share a mutual love that many siblings lose along the way – as life gets too busy and priorities alter.

I’m very thoughtful about all of this as I watch Gavin adjust to life as a big brother. In some ways, it helps that he is 6 years old. In other ways, it makes it all the more difficult for him to find steady ground. When you’re a toddler and a baby bomb enters your life, you may be angry and feel that your world has been inverted on its axis, but your explosions are expected. As a kid in the first grade, you’re meant to keep it together a bit.

Needless to say, emotions have been running high around here. Gavin has lived a very singular childhood so far. His traumas have deeply affected him, and he is used to being the absolute centre of attention in an extended family with no other kids to push him off his perch. In our little family unit, there has never been a “parents vs. kids” dynamic. We’ve been a trio, and Gav feels his voice is an equal in any discussion – although mostly it isn’t. As all parents are aware, sometimes mum and dad have to be the dictatorial decision-makers, and close negotiations with no further parley.

As a mature 6 year old, Gav is able to be my Man Friday, fetching things and being helpful. One day I entered the room to find him changing Skye’s diaper of his own accord. I was so proud of him.

As a little boy who has just had his place in the world usurped by a squawking, roly-poly, helpless being, he is struggling with the realities of life with a new baby. When I accompanied his class on a field trip, he asked me if I was bringing the baby with us. And suggested I find a babysitter when I said “yes.” She was 3 weeks old! He has taken to posing questions like, “Who do you love more, me or Skye?”

He adores his little sister, but is desperate for Mummy’s attention. I am meeting him somewhere in the middle – I hope. Skye is snuggled under my coat during Gav’s ski lessons and gets carted along to karate. I am trying (key word) to find a moment for Bean and I  to spend some quality time together – but stories get interrupted by demands for breast-milk and LEGO play is derailed by diaper explosions. It can all be a bit much for a little man.

So yes, a few rocks in the road for the first few miles of siblingdom. But here’s how I see it playing out past all those bends in the path ahead.

One day not so long from now, she’ll start to be able to play some little games with him. She’ll worship him and do everything he asks. Then one other day, she’ll turn defiant and shout NO! in his face.

She’ll probably break something that’s really important to him, and he’ll be really angry at her and ban her from his room.

Down the road a little further big brother will defend her from some kid who’s being mean in the playground – and she will think he’s the best.

He will know Santa doesn’t exist but he will pretend he does for her benefit.

And one day they’ll have a big fight and scream I hate you! and really think they mean it. But they’ll be friends again the next day. They’ll argue over what to watch on TV, or okay, Netflix, and they’ll borrow each other’s things without asking and come to me in high dudgeon to referee an argument.

And she’ll have a secret crush on one of his cute friends, even though she’ll be waaaaay too young for him.(or her)

And they’ll unite in their view of how totally uncool their parents are.

In school she’ll have a teacher who says Skye Pardey. Pardey. Do you have an older brother named Gavin? And that teacher will not like her because Gavin’s behaviour left something to be desired.

She will miss him when he goes off to university, or travelling, and she’s stuck alone with mum and dad.

And as quite young adults they’ll drink too much and get misty and nostalgic about the halcyon days of their childhood.

And they’ll clap at each other’s graduations and dance at each other’s weddings. And one day, because it can’t be helped, they’ll have to go to the funeral of a person they love and they will cry together.

And they’ll have long periods of time that they don’t talk. So one of them will pick up the phone (or whatever device they are using in the year 2040) and reach out. And he will say It’s so good to talk to you! And she will say It is.

Just now things aren’t that easy for my kid. I wish I could show him all these years ahead and say See? Things might be a bit hard just at the mo, but look at everything that’s yet to come. So much fun. So many laughs. So many memories yet to be made.

Ah, sigh. One day he’ll know.

Dedicated to TDS and LES. Spencers rule.

Here’s an overdue announcement: On October 29th, 2014, this wondrous little person entered the world. Her name is Skye Florence. She is beautiful, calm and sweet. She is a patient darling, but doesn’t hesitate to let us know she’s unhappy if she needs to. I am glad that already she knows how to speak her mind.

Only six weeks ago, she was still floating in the private universe of mum and babe, and now is here, our long-awaited little sister. When you’ve been waiting for something for many years, it’s almost surreal when the day finally comes.

As with any momentous life event, the six weeks of her life so far have been a period of challenge and change. Skye is a night owlet who likes to keep Mummy up for hours on end in the wee smalls. I haven’t yet figured out how to convince her that sleeping at night is a good idea, but I’m sure she’ll learn soon that dark means rest. At the moment, we are having lots of good chats at 4 am every night, when she is wide-eyed and ready to party.

We have all been trying our best to keep things as “normal” as possible around here – trying to get Gavin to school on time, and figuring out the logistics of little sister tagging along to activities like swim lessons and ball hockey. It’s all definitely a work in progress, but she doesn’t complain much.

Skye is a healthy little babe, but has already had her fair share of appointments in her time on Earth. Because she was a breech baby, there are a few issues that we are following, most importantly that one of her hips may be slightly dislocated. This is simple to follow with ultrasound and will (I’m sure) resolve itself soon.

So she has been subjected to ultrasounds and some poking and prodding. But we have decided as a family not to pursue ultrasound or imaging of her head. My original intention was to do regular cranial ultrasounds while she is still little, but I now believe that going on the hunt for tumours cannot help us in any way. We hope with all the hope we have that our Skye will not have to suffer as Gavin has done. And so, we choose to believe that she is well and will continue so through the long years of her life. Holding on to faith and rejecting fear. This is the hard work I have to do every day, for both of my children, and trust me, there have been some moments at 4 in the morning when it’s hard to hold on.

She’s making it easy to believe in her. I had forgotten how amazing newborns are. How strong and resilient and yet how incredibly needy.

Skye is sleeping the day away, gearing up for another night’s festivities. As she sleeps, I watch her dreams march across her beautiful face. She smiles and laughs, obviously dreaming of something sweet.

I don’t know how I chose the name Skye for her – it just came to me one day, many months ago. But I know why it is the perfect name for her. Because I always want her to know how limitless her life is. How beautiful and ever-changing and yes, sometimes stormy. She’s inherited her middle name Florence from me and from my mother, and I give it to her as a good-luck talisman from her Mummy and her Bubby, in hopes that the fortune we have enjoyed will also be hers. I believe it will.