June 22, 2015

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. Continue reading “June 22, 2015”

The Turning of the Tide

“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. Continue reading “The Turning of the Tide”

Hip, hip, hooray!

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. Continue reading “Hip, hip, hooray!”

In Sickness and in Health

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. Continue reading “In Sickness and in Health”

Ultrasound

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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 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.

Big Brother

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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.

Skye

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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.

Six

IMG_8041 IMG_8042 IMG_80456 years ago today, my wonderful son entered the world and changed my life forever. Today we celebrate all that he is and all that he has overcome in his few short years on Earth. Despite the seemingly endless challenges he’s had to face, he remains an (almost) normal 6 year old. He’s active, unbearably sweet, stubborn and prone to tears. He loves LEGO and Star Wars and art and hockey. He’s immensely curious about the world around him and loves to learn and explore. He  lives in the vast universe of his imagination, playing roles and creating stories.

As much as I wish it weren’t so, in many other ways he isn’t that normal little boy. He is set apart by illness, and hospital and knowing too much and experiencing too much for one small child. Earlier this morning we had a discussion about the price point of generic vs. brand-name ondansetron.

Today he is celebrating his birthday lying down on the couch and trying to avoid a trip to the ER. His only birthday cake today will be the little Play-Doh one he made this morning. He is putting a brave face on it, smiling for the camera, but he is heart-broken that his birthday must be spent this way, and that he’s missed not only the first but second day of school also.

He was so, so excited to start Grade 1 yesterday. Too excited. I knew, dropping him off, that the chances were good he wouldn’t last long. He’d already had 3 days of headaches and vomiting at the cottage – but managed to enjoy his family birthday celebration all the same. He liked helping to frost his cake but couldn’t eat it. We returned home early from our annual Labour Day celebration in order for him to get enough rest for the first day of school. He set his new Yoda alarm clock so that he wouldn’t sleep in.

Yesterday, he clutched my hand as he streamed into the school with the big kids for the first time. He high-fived his teacher with confidence, and I left, hopeful. Sunny late summer days seem full of promise, and I ran a few errands on Roncy, revelling in being alone for the first time in ages. I happened to glance at my phone as I set off to retrieve a couple of Bean’s birthday presents, and noticed sadly the missed call, voicemail, and texts. Sighing, I jumped in the car and headed straight to the school, getting there in time to hold the bin for Gavin to vomit into. It had been 45 minutes.

Upon arriving home, he proceeded to barf 12 more times throughout the day. His meds had no effect and hydration seemed impossible. I debated with myself whether to just pack him in the car and go, but he wasn’t as poorly off as he has been in the past, and by evening managed to hold a small amount of liquid and slept.

He has continued unwell all day but seems to be making moves in the right direction. Which means I won’t have to get him an IV for his birthday. And he may be able to attend school tomorrow. He is just dying to get some homework!

Still, I am worriedly musing about how to tackle this next. Last week we had some news – not unexpected, but upsetting all the same. Gav had his annual-ish kidney ultrasound and meeting with nephrology. In the grand scheme of kidney disease, we (as in the doctor and me) aren’t too worried. The doctor who examined him explained that, by the parameters that they judge kidney health, Gavin’s is generally good – or at the very least, acceptable. We have known for some time that the chemo he received damaged his kidneys – but we were happy that his hypertension has resolved without the need for further medication. However, on the ultrasound last week, his kidneys did not appear “normal.” They look like kidneys that have taken too many hits. The issue being that every time he has a vomiting episode, he becomes severely dehydrated and his kidneys take another knock. The only ways to protect them are to: keep him hydrated, and avoid medications which are toxic to his kidneys. Unfortunately, I hadn’t realized how hard ibuprofen is on kidney health, or if I had, I’d forgotten it. We have been giving Gavin Advil fairly frequently for headaches of late, but will no longer be doing so.

The hydration is a more difficult issue. He’s now having episodes every 7 days to 2 weeks. He doesn’t become severely dehydrated every time, but there is a certain general depletion that goes along with vomiting so frequently. So… what to do next?

It sometimes seems that there is not much we can do, but I’m still relentlessly researching, adding in new supplements, trying new medications, routines and any kind of snake oil I read about on the Internet.

The birthday boy is now putting together a new LEGO set from his Uncle Ryan. He still has a birthday party with his buddies to look forward to on the weekend, and judging by the fact that he is so poorly today, he should be fine by then. Silver linings. We have to celebrate everything in stages, knowing that if we take several goes at it, we’ll hit the target sooner or later.

Perhaps he’ll even enjoy a piece of cake!

Summertime

I have very foggy recollections of the summers of my childhood. They stretched out forever, endless days of lazy, unscheduled lovely boredom. There was usually an un-airconditioned road-trip from our home in New York to Toronto, which meant a stay at my grandmother’s house, play with my cousins, and a camping holiday in the wilds of southern Ontario. There were weeks spent at some sort of sub-par day-camp and random tennis lessons here and there. Taken as a whole, those memories are good. There is beach, ice-cream and the smell of pines at campgrounds. There is play and bike-rides and swimming.

I can tell you, with total certainty, what I was not doing. I was not spending my days vomiting, headache-ridden, coming home early from activities, lying in a darkened room and visiting the emergency department. I went to the ER once in my entire childhood, and that was enough.

Summertime seems to me now like this fleeting epoch in which all the fun of warm weather must be jammed into a few short weeks, and if you can’t tick all the boxes by Labour Day, well, there’s always next year. I feel this way because last summer was such a write-off for us, in which I spent more days huddled indoors with Gavin than doing anything else. This past spring I determined that the Summer of 2014 was going to be Different. We were going to have the funnest fun! Gavin was going to be well and enjoy his summer holiday the way a little boy should.

Of course, today we spent the day in the ER getting some much-needed hydration on board. Tonight, Gavin and his Daddy are sleeping at the HSC. Peering out from under these dark clouds, it’s hard to see the sun shining.

I keep a detailed health diary for Gav, documenting his daily health and ups and downs, in the relentless search for patterns in how he feels. It’s a spreadsheet that reads, Good, Good, Good, Headache, Vomiting, Headache, etc. In July there were an unprecedented 11 days that read Good. He hasn’t had a run like that since last October. Making it through one week without an episode is an achievement.

Despite how grim that sounds, we have managed to stay out of the ER since March. That is a very long stretch for us. I’ve controlled his vomiting and kept it to a minimum with timely use of meds and strict measures around rest and eating. There are still a lot of questions and no great answers. I’ve tackled this issue from so many angles, and been on the receiving end of reams of well-meant, but ultimately useless advice.

At the beginning of July, Gav and I wrote down on little strips of paper all the things that he wanted to do this summer. They were things like Go Strawberry Picking and Visit the CN Tower. Strawberry Picking was interrupted by headache and vomiting, which meant a two-hour nap on the ground at the strawberry patch, enduring the stares of passersby as Craig and I idled with our phones until he woke up. We’d planned to visit the CN Tower this past Friday night, followed by a Blue Jays game on Saturday. Both events did not come to be. Which brings us to today, Sunday, which we spent at emerge rather than attending a family party together in honour of Gav’s new little cousin, Olivia.

Obviously, the loss of these fun times is disappointing. It was heart-breaking to have to collect him from a camp he attended at High Park, almost every day for the week he was there, when he had been looking forward to it since March. Our life is unpredictable in the extreme, with no way of knowing how things will go from one day to the next.

The only way to handle all of this is to Do It Now. There is no putting anything off until tomorrow, because tomorrow might be a total disaster.

I’ve learned that we have to carpe the crap out of this diem if we ever want to get anything done.

And with that as the family motto, this summer, so far, there has been THIS:

Feeding Ducks

and this:

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He has learned to ride a bike. He has been learning to swim. He’s had wonderful play with friends and long solo hours with his beloved Lego. He can now whistle and snap his fingers and play chess. He is doing all the things I always dreamt he would.

The one thing I want for him that still eludes us is health. I want him to never worry again that his trip to the zoo will be cancelled or ever shed another tear because he missed the Blue Jays game. I want for him to wake up every day and just feel good. And if he feels sick, I want it to be for a normal reason, that like a normal child he’s caught some sort of virus, but it will soon be over without a trip to the hospital.

If you live YOUR life in good health, please never take it for granted. Love your body for being so kind to you and carrying you through life with grace and ease and the occasional bout of food poisoning. Cherish the fact that you can make it through each day without having to lie down or throw up, and sleep soundly at night with the knowledge that your internal organs are doing right by you.

The Great Leap – Part II

An early-morning conversation with Gavin:

G: Why do you wear this golden ring? (pointing to a plain gold band on the ring finger of my right hand.)

Me: It was Bubby’s wedding ring. She gave it to me for good luck when you were sick.

G: Did you have good luck?

Me: Yes, because you got better.

G: Does it still give you good luck?

Me: Yes. I get to snuggle with you every day.

G: If I were you, I would say that you have different good luck.

Me: What do you mean?

G: You have good luck because you have a baby in your tummy.

I am not religious. I don’t go to church and do not believe in God as presented by the major world religions. I do believe in universal energy. I believe in the power of prayer and good intention. I believe in the human spirit.

The road I’ve walked with Gavin has made me kooky-superstitious and an observer of signs.

I do believe that it is my fate to be mother to this child, and during the four years since diagnosis, I’ve been waiting for baby to arrive and complete the circle of my family, like a train holding at the station until the last passenger boards.

This pregnancy could only happen when I was willing to let what will be, will be. I had to stop trying to control the outcome with IVF and planning. That route only led to disappointment. When I opened myself up to the grand possibility  of great joy and great pain, then and only then could this come to be.

Let’s rewind to last February. Every woman who has tried for a pregnancy knows the heady thrill of those few days of uncertainty before finding out which way things have gone. And then, either the disappointment as you realize that another cycle has passed you by, or the ecstatic, buzzy high of, “I can’t believe I’m pregnant!!”

On February the 22nd, Craig, Bean and I were at the cottage. That day was the 13th anniversary of our meeting in London in what now seems somebody else’s life. The number 22 has always been meaningful to us, it is the date of both Craig and his father’s birthdays, and it is our aforementioned anniversary. It is a “lucky” number that follows us around in the form of hotel room numbers and show tickets and street addresses. June 22nd, 2010 was not only my father-in-law’s birthday but also the day the beast was removed from my son’s head. It feels right and fitting that our genetic mutation is found on chromosome 22. And it also felt right that it was the day I knew I was pregnant with our daughter. Today, Friday the 27th of June marks the 22nd week of this pregnancy, with baby doing flips in my belly.

We have all probably known first or second-hand a woman who “didn’t know” she was pregnant until she went to the hospital with abdominal pain, only to be told, “You’re in labour!” I’ve always viewed these tales with a high degree of skepticism, because in both of my pregnancies I knew I was pregnant from day one and have never been able to comprehend how disconnected one would have to be from one’s body to not know it. So on February 22nd I woke up feeling absolutely, 100% certain that I was pregnant. I told my ever-dubious husband, but he insisted on the scientific validity of a stick test to confirm. The next day we had hard proof. The plus sign in the window showed that I was certainly, definitely pregnant.

At home I calculated my due date, and laughed at the results. And did it again just to make sure. My due date is my birthday, October 31st.

In the normal course of events, I would be the woman crowing the good news from the rooftops, as I’d done with Gavin’s pregnancy. This time, with what seemed like endless bad luck behind me, we decided to wait. Wait until the first trimester was over and everything was “safe.” Wait for the results of preliminary testing. Wait for the results of chorionic villus sampling. Yes, we had decided to pursue early testing to discover whether or not baby was a carrier of the mutation.

Prior to getting pregnant, testing seemed like an easy thing to do. Test, and then… decide? Decide what? To terminate the pregnancy if the news wasn’t “good”? Talking about termination cerebrally is one thing. Actually absorbing the emotional trauma of doing it is entirely different.  I cannot conceive of the woman who would undertake that decision lightly. And as the weeks passed I realized that it was a complete impossibility for me.

For me to end my pregnancy because my baby “might” get cancer? To not take the chance of all the love, light, joy, and wonder that my child will bring to this world? It seemed inconceivable. And yet, I went for testing anyway. Of course, it was a horrendous experience, and due to holidays and lab bungling it took a full four weeks to get the final results instead of the promised two.

The initial results came in one day while I was in a Queen Street baby store shopping for my new niece Olivia, who had yet to arrive in the world. I told the owner that my sister was about to have her baby, and she said, “Congratulations!” It was impossible not to take those congrats for myself, as I unfolded tiny, dreamy, organic cotton onesies and girly patterned leggings. At that moment, amongst the natural rubber soothers and Sophie the giraffes, my phone rang.

Ringing phones are not good for my nerves. I am always on high alert for bad news. My heart pounded when I heard the voice of the genetic counsellor at Mt. Sinai. I relaxed somewhat at her cheery tone, and listened as she told me that they had the first results back, which revealed no chromosomal abnormalities in the baby. So in other words, the baby was “healthy.” She asked me if I wanted to know the sex of the baby and I said, “Yes!”

“It’s a little girl,” she said. Of course she is, said my heart.

The wise voice of my mama’s intuition knew that. And sadly, in that moment, it also said, this baby is a carrier. I cannot say how I knew, but I have learned to trust that voice when it speaks to me. I cannot tell you how it feels to be SO happy and SO sad at the same moment. Happy because finally you are here. Sad because oh I didn’t want to worry about you too.

The final, final results didn’t come in until later. It was a busy Friday evening and I’d given up on getting the results for the weekend. My parents had given me opera tickets and I was rushing to meet my friend Rachael who was joining me. In the shower, shampoo in hair, I heard the phone ringing and called to Gavin to bring it to me. Dripping, I heard the voice of a Mt. Sinai doctor asking if this was a good time. Is it ever a good time to hear bad news? I knew from her flat, sympathetic tone what she was going to say. So she told me. Yes, my baby carries the same genetic change that Gavin does and that I do. With that done, what else was there to say? I hung up and finished washing my hair, did the Gavin hand-off when Craig arrived home and headed out. We are very used to carrying on in the face of implosions.

I found Rachael outside of the opera house. She is about 8 weeks ahead of me in her pregnancy. With sadness, we discussed what this means and what the future may hold for me and my baby. But our talk was cut short as we realized it was time to go in. Wiping tears from our eyes, we handed our tickets to the young woman at the door, and her name-tag caught my eye. I was shocked to see the name that I would like to give my daughter. It is not a very common name and so seemed much more significant than seeing, I don’t know, “Mary” blazoned on her lapel.

In the time since, I’ve been trying to process what this means. According to geneticists, this means that for my baby, the possibility of having a brain tumour is much higher than it would be for another child. How much higher? No one can say. And yet, there is no explanation for those kids who just get brain tumours and don’t have any faulty genetic mechanism to blame. So I suppose, scientifically, I’m meant to be a realist and just accept that this is going to happen.

Fuck that.

I’m going forward with the firm belief that this little baby will never, ever have a brain tumour. She will come into this world a healthy little being and she will continue to be so. I need to believe that just as I believe that her big brother will never have a tumour again. I can’t know or predict all of the painful and difficult things that will happen to her in her lifetime. Pain and difficulty come to all of us. If they haven’t? Just wait awhile.

There are 5 of us carriers in our family who have yet to sprout undesirable growths in our heads. I’ve decided that none of us ever will, and my baby will be 6.