Sunday, 3 September 2017

Two years



It's a second year without you today.

It's not any easier, but that's OK. It shouldn't be. We're spending a quiet day as a family, not saying a lot, just getting through it.

You'd be four. I imagine you'd be quite a handful at that age, given your exuberant personality. I think you'd be running all over the place, getting into trouble, but also making so many friends.

Mom went to a concert the other day. The singer heard of a kid who'd found out his cancer was in remission and gave him his guitar. Everyone cheered, but not all the tears were happy.

I think the hardest part about you not being here is seeing everything you'll miss out on. The smallest things - kids going back to school, finding something in the house you'd played with, or an innocent "do you have any other kids?" - can trigger a flood of pain. Or they can make us smile. We never know how we're going to react.

You did a great job picking out a sister. She reminds us of you but she's not you. Sometimes when she smiles I forget you were ever gone; other times... I miss you so much.

We're still your parents, but instead of potty training or playing catch we're out and about telling your story, raising money for the hospital in your name. I alternately worry we're overextending our efforts or not doing enough:  the online auction is going to have more and better items, but next week's mini golf tournament only has four teams registered - at least half of them are either us or our friends.

What can we do though? I don't blame folks who don't follow your story anymore - as far as most are concerned it ended that day in Orlando when you took your last breath. There are no new photos or videos of you, no updates on your fight against leukemia. Just memories or charity updates.


But that's all we've got. That's your legacy. It's no less important to us now than it was then.

Thursday, 24 August 2017

Cancer parents forever


She's six months old and there is absolutely nothing wrong with our baby girl.

But yes, that's Samantha getting her blood drawn, at the Medicine Hat Regional Hospital this week.

Why? The short answer is paranoia. You should not go out and get your healthy infant poked. Unless, of course, the anxiety of having had a child die from cancer is so great you're in constant fear of it happening again.

Samantha has Dominic's great eyelashes, his heart-melting smile, and those pinch-worthy cheeks. But our oncologist said numerous times there is no scientific reason she'd be more likely to also have leukemia like he did. The chances of one family encountering childhood cancer twice would be infinitesimally low.

Still, the few bug bite-looking spots on her scared the crap out of me. And you know what? They went away; they were bug bites.

Trish took Sam to the hospital for a blood test, making doubly sure there was nothing wrong with her. Actually, this was planned before she was even born, our family doctor agreeing to it more for our sanity than anything else. The doctor understands what we've been through, and we're grateful for that.

I didn't go, instead off on a mission to pick up more items for the #Dominicstrong online auction which happens Sept. 29-Oct. 1 via our Facebook group. More on that later.

Trish remembered how hard a time nurses at the Alberta Children's Hospital had getting Dom's first blood draw (The Blood Whisperer, Sept. 17, 2013). So she called ahead to ensure someone was well-trained enough at our local hospital to deal with a blood draw on a six-month-old.

No problem, they said.

They lied.

It took multiple nurses and multiple pokes before the job was done. "Everyone here is new," was the explanation from staff member after staff member. Trish was a mess. I should have come with her, even with my aversion to needles. She wound up talking at length to a supervisor, and we both wish in retrospect we would have just done the blood testing at the Alberta Children's Hospital instead.

I know some folks wonder why we don't raise money for the local hospital instead of the one our son spent two years at getting treated for his cancer. Wouldn't it make more sense to support a local charity versus one 350 kilometres away? Well, the fact is kids in Medicine Hat and southern Alberta wind up in Calgary if they have anything even remotely severe. That's where the specialists are. That's where they get the best care. The way we see it, we are supporting local kids: The ones who need the most help.

Now is the busiest time for our charity work. We're going somewhere every day, either asking for donations or picking them up. Already the online auction has more than 70 confirmed donations - we raised $10,000 in last year's auction and hope to do even better this time around. If you're interested in donating an item, email donations@dominicstrong.com. If you want to get in on the auction make sure you're not just a member of the Facebook group, but that you're getting notifications of new posts there.

Our team set up outside Five Guys fast food restaurant this past Sunday for our latest charity event, where 20 per cent of sales (only if customers mentioned Extra Life) would be donated to the Alberta Children's Hospital. Between that and cash donations, it looks as though the total will be upwards of $850. Thanks to everyone who spread the word and came down.

Next up is the #Dominicstrong Charity Mini Golf Tournament, Sunday, Sept. 10 from 5-7 p.m. at Hooplas in Medicine Hat. You can sign up as an individual ($18) or as a team of four ($70) at Hooplas' website, or stop by their location. We have some great things planned, like special holes and great prizes for the winners. The entire entry fee gets donated to our Extra Life efforts for the Alberta Children's Hospital thanks to Schwab and Co. chartered accountants.

The next couple weeks will be especially tough, as it'll be two years since Dominic died on Sept. 3. But this is how you parent a child who's gone - you do everything you can to ensure they have an impact still. That their loss means something, not just to us but to our community.

We are cancer parents, now and always.


Wednesday, 26 July 2017

Superhero Night


Superhero Night Saturday at the Medicine Hat Mavericks game was everything we hoped it would be.

But it took a lot of little things to make it come together.

First was the idea for it, which I had nothing to do with. Team owner Greg Morrison came to me in May with the plan to have special jerseys and auction them off with proceeds going to our Extra Life campaign. Needless to say it was an automatic yes, though I'll admit that as sports editor of the paper and in charge of covering the team, I'm still a tiny bit nervous about it. So long as nobody thinks they're getting biased coverage because they did something nice I was involved in, I'm all for it.

Then Greg asked about throwing out the first pitch. Dominic had thrown the first pitch at a game two years ago, but I ended up having to underhand it for him. Then he threw a foam ball 80 million times in the stands. Anyways, I figure I'd done my first pitch: I wanted someone else to do the honour.

There's a group called the 501st Legion that cosplays at charity events as Stormtroopers and other evildoers from the Star Wars universe. One of them attended our 25-hour game day last year and afterwards wanted to put us in contact with another family whose child has cancer. So it was that we learned about Violet's Army. Violet, 9, has acute lymphoblastic leukemia and did an amazing job throwing out the first pitch. "She did better than I would've," said her mom.

Two members of the 501st were able to attend Superhero Night, driving in from Calgary and Swift Current and sweating buckets in their amazing costumes. Kids (and some adults) posed for photos with them, and there were lots of high-fives and thumbs-ups.

Thanks to public address announcer Guy Lanigan there was also appropriate music for the Stormtroopers. He put a playlist together with lots of superhero-related songs and sound effects, which really made for a fun time. I even re-wrote the usual game day script, sprinkling in comic book, movie and TV superhero references throughout. Taylor Van Der Kooy, the general manager, and her staff decorated the park and did an amazing job too.

And then there was Spider-man.

Greg had put out the call to anyone who wanted to cosplay at the game that night, but got no takers. But earlier Saturday, we were downtown for the annual chili cookoff and saw a guy dressed in a Spider-man costume.

Me: "Have you heard about Superhero Night at the Mavs game?"

Spidey: "I've never even been to a baseball game before."

We offered him a free ticket and the Mavs added in some food and beverages. He was game. And now I have Spider-man's phone number. Read it and weep, J. Jonah Jameson!

The game went great, though between organizing things and working the Extra Life table we set up in the concourse, I didn't see much of it. The home side won 8-1, and just before we were about to do a cheque presentation after the eighth inning there was a bench-clearing... fracas? Incident? I don't know if brawl is the right word since I didn't see any punches. Because we were on the staircase waiting to go on the field we didn't actually even see the play at the plate that caused it. Sure was interesting though!

Anyways, the team presented us with a $1,500 cheque which will go to the Alberta Children's Hospital via our #Dominicstrong Extra Life team. And we got $300 in cash donations at the table. And Samantha had a great time dressed as Wonder Woman.

Best of all? Greg said he'd like to make this an annual event. Watch out for Superhero Night 2018!

Up next: Five Guys burgers and fries day, Aug. 20 at their Medicine Hat store only. Mention Extra Life #Dominicstrong at the till and 20 per cent of your purchase will be donated to our Extra Life efforts!

Monday, 17 July 2017

Living the dream


It's the same room, in the same house, and sometimes when I hold my daughter I feel like it's four years ago and our time with Dominic was just a dream.

I wouldn't describe it as a nightmare because so much of the time we had with Dom really was wonderful.

She has his fantastic eyelashes, the ones all the women said only boys ever get. When she smiles it lights up a room, just like him. We spent almost the entire day outside on our deck Friday, at one point cheers-ing our drinks and her bottle.

But his urn with the superhero D and the music notes is here too. And two of the balloons - one of a monkey, one of Cookie Monster - that were part of his memorial service have somehow not deflated a bit. And from the deck we can always see his bench and the playground.

It's good to remember, but it's good to be happy, too.

We visited the Alberta Children's Hospital again recently to see a couple friends whose kids were getting treatment there. In the cancer clinic we recognized fewer faces than last time, something you know will happen but makes you realize it's been two years since Dom stayed there.

One of them came up to me though, looked me straight in the eye and said with the most sincere voice she could find "thank you for bringing her here. Really." We might have said goodbye to him, but many of the staff there deal with so much devastation that it's tremendously valuable to cling to every bit of positivity they can find. Even the sad stories like ours can be filled with joy in the long run. You just have to find it.

I hope there's lots of joy at the July 22 Superhero Night at Athletic Park in Medicine Hat. The special jerseys will be sold off for $100 apiece, proceeds going to the hospital, and we'll be there letting folks know about all the other charity events we have planned for #Dominicstrong this year.

One new one I can announce here: Five Guys, the fast-food chain which opened its first Canadian location in Medicine Hat a few years ago, will be donating 20 per cent of each purchase made at the Hat location on Sunday, Aug. 20 if you say at the till you want to support the Alberta Children's Hospital. We're thrilled to have their support.

And of course we're still busily preparing for the other events: Hooplas mini-golf tournament Sept. 10, Facebook online auction Sept. 29-Oct. 1, 25-hour game day at Beveridge Landmark Events Nov. 4-5.

I was offered to throw out the first pitch at the baseball game next weekend, but I basically did that when Dom got to throw it two years ago. So I found a special little girl from Medicine Hat to do it instead. Violet has been kicking cancer's butt for more than a year and we are so honoured to have her help out. Please come out and support her, us and all of the kids who use that hospital.


Saturday, 10 June 2017

Superheroes among us

You don't need a cape to be a superhero, but it sure makes it more fun.

When we were finalizing our Extra Life fundraising plans for the year, the owner of the local summer collegiate baseball team here in Medicine Hat surprised us with an idea.

Greg Morrison bought the Medicine Hat Mavericks about a decade ago and one of the things he's done is support the community. When Dominic threw out the first pitch at a Mavs game a few years ago, it was for their Plaid for Dad night. Side note, this year's Plaid for Dad is June 18 - those jerseys were just revealed this week as well and look awesome.

Sticking with our Extra Life themes, Greg told me he wanted to do a Superhero Night July 22, with special jerseys that would be sold off and the proceeds going to the Alberta Children's Hospital through our #Dominicstrong Extra Life team.

What you see here is what the jerseys will look like. Thumbs up and #Dominicstrong on one shoulder, the Extra Life logo on the other. We are thrilled with the support and can't wait for game day. Samantha will definitely be wearing a superhero outfit!

That's the first of our announcements today. We're proud to say there are a few!

Online auction

The #Dominicstrong Facebook group's third annual online auction will take place Sept. 29-Oct. 1. We already have a handful of items donated for it but now's the time to contact us if you or your business would like to be a part of it. We've averaged 120 items and $10,000 raised in this auction, making it the biggest fundraiser of the year for us. Email donations@dominicstrong.com with any questions or to tell us what you'd like to donate.

Mini golf tournament

Amber Dewar, owner of Hooplas Family Entertainment Centre, runs a #Dominicstrong fundraiser right around the anniversary of his cancer diagnosis. For year three, she's upping the ante by not just having a fun day of fun and games but an actual mini golf tournament at Hooplas!
The date this year will be Sunday, Sept. 10. Mark it on your calendar and get practising! We'll have some great prizes for the winners - think of it like your standard charity golf tournament, but one you can bring your kids out to.

Extra Life 25-hour marathon

The biggest date on the calendar is always game day, when we play games for a full day as the main thrust of what Extra Life is. We already announced we'll be at Beveridge Landmark Events' The Cellar from 8 a.m.-8 a.m. Nov. 4-5, but what we didn't tell you are some of the amazing partners we've already found to make it even more incredible than in the past.

Big Eatz Little Feetz

When we had Dom's memorial service at the Esplanade, the company Big Eatz Little Feetz supplied the Kraft Dinner, licorice and all the other comfort foods Dom loved so much. Last year, they made special Mario-themed snacks for game day. This year? How about a full breakfast for our 25-hour gamers and more snack trays for overnight!

VR Junkies

A new virtual reality arcade has opened up in town called VR Junkies. When we checked it out we naturally mentioned Extra Life. The response? They're going to bring in a VR system - again, just for our 25-hour gamers, so you'll have to sign up at extra-life.org, join team #Dominicstrong and start raising money - from midnight until 8 a.m. of the game day.

Skinny's Smokehouse

Don't want to hang out for 25 hours but still want to drop by and support the cause? No problem. How about Skinny's Smokehouse barbecue for dinner? Skinny's - which makes the best barbecued meat I've ever tasted - is donating food for up to 75 people, and we will sell separate vouchers for $10 apiece. So you can show up for dinner, play some games, and boom you've helped out the hospital that so many kids from our city use every year.

There's more. One person is chopping her hair and donating it to a wigs for cancer program and I'll be announcing my own stretch goals soon. Let's just say it'll be an eventful 25 hours.

We are so lucky and privileged to have this level of support. Everyone involved in these efforts, from the businesses to those of you who come out to the events to the gamers who choose to help fundraise, you all have capes in our minds. Please help us spread the word about all of these events as they get closer, and hopefully we can match or beat last year's total of US$23,256.


Been busy

 
They say baby girls are tougher to handle than their male counterparts.

While that is certainly true in our experience, that's not the only reason this blog has been silent the past two months.

With Samantha one month old, I left for Orlando and the Extra Life United gaming tournament in late March. Work-wise it was a bad time to go, with hockey playoffs going on among a busy local sports scene in Medicine Hat this spring. For her it was tough too, as she wasn't sleeping well, crying a lot, as babies that age tend to do.

But I had looked forward to Orlando for months, had practised my tail off at the six games I was to play, hoping to win some money for the Alberta Children's Hospital.

It didn't happen. And the blog I wrote on the way home was so negative, I didn't actually post it. I'm going to post it now, just before this one, because it's still accurate. But I do blame myself for not dealing with the stress of the weekend better. You'd think someone who's been through what I have would handle things better, but alas I did not. You live, you learn, right?

A lot of things have calmed down since that crazy March. Samantha included. And we've been busy, getting some plans in the works for our Extra Life fundraising for this year.

In April we attended Calgary Expo and I ran a panel about Extra Life, with 75 people turning up to hear all about it. Ex-Calgary Stampeder Jon Cornish established significant nerd cred talking about World of Warcraft and anime, and hopefully we inspired some people to sign up this year.

We've got a new venue lined up for our gaming marathon this year! On Nov. 4, 2017, the #Dominicstrong team will host a 25-hour event at the Beveridge building (Beveridge Landmark Events) - which has a pub-style lower floor called The Cellar perfect for video and board gaming. You can click here or find the event on our Facebook page to indicate whether you'll be attending.

The theme of our Extra Life fundraising this year is going to be bigger and better. The upgraded game day will be part of that. There will again be an online auction, and an event at Hooplas Family Entertainment Centre (mini golf being the centrepiece). We've surpassed US$90,000 raised in four years doing Extra Life for our hospital, and hope to break the six-figure mark. I suppose in Canadian dollars we already have!

A couple weeks ago we got some special items in the mail. A plaque to recognize the nearly US$25,000 the team raised last year, and individual plaques for Trish and I (we each raised about US$7,000 each). Hopefully we can keep the momentum going for many years to come in Dom's name.

Thanks as always for your support. 

Monday, 27 March 2017

Long weekend

 
Love.

Sadness.

Anger.

Jealously.

Compassion.

Fear.

Hope.

Extra Life United ran the gamut for me these past few days, and I'm not sure what the takeaway is.

I wasn't going to go back. I didn't like the idea of Trish not being there with me, so when we realized Samantha's birth would likely preclude her from the trip, Trish was the one who said "you have to go."

We'd made too many friends for one of us not to go.

Getting there was great. Emergency row seats, extra leg room, the world's friendliest customs area in Winnipeg and a perfect recollection of where to go at the Orlando airport had me at Coronado Springs — the resort where Children's Miracle Network's Momentum conference and our United event takes place — in record time and in a great frame of mind. Making things even better, the sun was just setting as the plane touched down. I thank Dominic for that.

I saved some money by sharing a room with Rick, another participant who also had to leave his wife and kids behind. Everything was looking up.

Right away I ran in to friends from last year. Nick from St. Louis. Nolan from Saskatoon. Reed from... the Internet? He kind of lives there. But he's also got a new baby, a few months older than Samantha, back home.

I had no interest in going to the amusement parks. We'd done that last year. So it was all about the gaming competition and the camaraderie accompanying our Extra Life community. I'd been preparing for the games for months, learning them all and practising, often on the official Extra Life Twitch channel. I wanted to win a bit of money — there was US$150,000 up for grabs in all — to bring home to the Alberta Children's Hospital.

Right from the start it was a mixed bag. I had a wonderful on-stage interview with Extra Life creator Jeromy Adams. Most of the audience knew my story and the surprise that we'd had a baby girl, but few knew about the ceramic heart Trish carries with her — the other one given to Dom when he died. A photo of Samantha with the heart on her brought the two stories together.
 
Then was our chance to interact with some of the champion kids who were there for the Momentum conference. But unlike last year when we were guaranteed to see them all at a pin ceremony, United started a day later this year and so the kids had done their pin ceremony a day earlier, and had been out at the parks all day prior to being invited to play games with us for a few hours.

I'd had special dice made up — a huge shout-out to Chessex who did them for free after hearing our story — with the thumbs-up logo and #Dominicstrong. I wanted to give one to each champion child. Because they were casually filitering in and out, I never got a chance to play any games with the kids because I was so frantically running around trying to find kids I hadn't yet seen and giving them dice. We tried to get a photo of all the Canadian champions and Canadian Extra Lifers, which looks great until you realize how many are missing from the photo itself.
 
As you can see, I was already spinning into negativity, which is not the point of this week. It's about energizing us for the fundraising year to come and being inspired.

Friday was similar to an Extra Life 24-hour marathon, which is to say exhausting. The first three hours was the champions medal ceremony, in which we cheered each champion child. The Canadian champions went first because many of them traveled home afterwards, before the ceremony was even over. My hospital reps won a major award, but it happened the previous night, while I was on a different stage in a different room. I wish I'd been able to cheer them, too.

Then the gaming tournaments began.

Up until dinner time things went great. I won my first game, lost the second to a guy who wound up winning the entire Star Realms tournament (worth $4,000 to his hospital), then advanced with a table win in Splendor, second place at a table of Citadels, second by a narrow three points in a game of Dominion (only first place advanced). After another on-stage interview and a playing of Dominic's miracle story video, I went back and won a table of Ticket to Ride. That meant semifinals yet to come in Splendor, Ticket to Ride and Citadels — guaranteed money if I finished top two in any of them. On my way for a quick bite to eat — I was feeling a bit faint by then — Jeromy had this look of amazement as he said "it's almost like Dominic is helping you." And, while that was a great story, what went through my head was "No. I've worked my butt off to be good at these games. That's why I'm doing well." I was already very tired.

Another fellow from my Ticket to Ride game, Lucas, came with me for dinner. We'd both been given time before starting our next game so we could go. But when we got back to the game area, we had a rude surprise. My table was ready for me, but his had started without him — he'd been disqualified. We had both checked before we left to prevent that from happening.

I was livid. But I could tell the tournament organizer had no clue how to solve the problem. So I did it for him. I proposed that we include Lucas in our four-player table of Small World, as the game has a five-player option. Everyone concurred. Instant karma. And it was the game I felt best about.

He won. I came second. Only the winner advanced. In fact, he even won the whole tournament of it, and US$4,000 for his hospital.
 
I then finished third in Splendor, one point short of second place and moving on to the finals and guaranteed money. I then finished third, never with much of a chance, in Ticket to Ride, unable to draw the cards I needed to win. And Citadels? Well, apparently the stated rules of top two advance were changed without anyone telling me. Only the table winners advanced. So I won nothing.

There were also challenge stations with a total of US$10,000 to be won. Games like Rocket League, FIFA, NBA2K17 and Just Dance. I tried Rocket League six times and lost each one of them. Did Just Dance and lost. A woman came up to me and said she'd intentionally lose at Just Dance so I could win something. She still beat me. It was humiliating.

Don't get me wrong: I still had a great time. We went out to Disney Springs (a shopping and nightlife district, essentially) and hung out, got some cute clothes for Samantha. It was great to see the Enmon family again, their daughter Tori having inspired Jeromy to start Extra Life. A few people gifted things for us, like this amazing canvas print done on an iPhone, and clothes for Sam. And I have dozens of hugs to send back home.

There's no overarching theme this year though. Last year it was hope. This year, it's merely a mixed bag of emotion. I blame my own competitive spirit.

Wednesday, 22 March 2017

United

 
The first trip to Orlando ended in heartbreak.

The second ended with hope.

Today, I head back to reconnect with what'a become a second family to us.

You've seen what we've done through Extra Life in the past. The 24 (or more often, 25) hour gaming marathon takes place annually, with all the money we raise going back to the Alberta Children's Hospital where Dominic spent so much time.

For some Extra Lifers, one day a year is not enough. Many fundraise all year long, and for some that's not enough. For those who want to take their love of the charity to the next level, or those who simply want a once-in-a-lifetime experience, Extra Life United was created.

When it first took place in late 2014, I got an invite because I was among the top fundraisers. But I wasn't about to leave Dom and Trish at the hospital, certainly not when we were on the last gasps of treatment before he was declared terminal.

Those who went said it was a life-changing experience. With a huge prize pot and a group of incredible gamers, the real stars of the show were the champion kids. You see, Extra Life United takes place during Children's Miracle Network's annual Momentum conference. One child from each state and 13 from Canada are flown in, treated as the rock stars they are, representing their home hospitals and inspiring everyone with their courage, joie de vivre and amazing skills as spokespeople.

I thought, one day we'll get to Orlando. Maybe Dom will be picked as a champion child.

We got back to Orlando for his wish trip instead. He decided he'd never leave, crashing the morning after we went to Disney World and dying a couple days later.

We thought we'd never go back to Orlando.

Six months later, we returned for Extra Life United 2016. Children's Miracle Network produced a video about Dominic and our story, which hopes to inspire others to give back to their communities too.

At last year's United, we met so many incredible people. We met champion kids like Derek from Edmonton, and Peyton from Calgary, and their families. We met the Enmon family, whose daughter Tori inspired Jeromy Adams to create Extra Life. And we met more than 100 of the most amazing gamers.

From minute one we all had a connection. It was an instant family. So of course I had to come back.

This year will be much different. It's a reunion, plus there will be brand new champion kids to meet and new gamers who are at ELU for the first time. I'll be thinking of Derek especially - he died this past year. He was so elated to meet some of the celebrity gamers who had flown in last year, not realizing he was the star in their midst, not the other way around.

Trish and Samantha couldn't come because it's too soon after the surgery and the risk of blood clots makes flying a risk for Trish. But they will be FaceTimed in whenever I get a chance, and I know I'll be receiving many hugs on their behalf.

I'll also be hoping to improve on how I did at the competitive gaming last year. Trish and I each made a tournament final, winning a combined US$1,000 or so for the Alberta Children's Hospital. This year they've added challenge stations where you can win a quick $50 at a time, and I'm signed up to play board games Citadels, Ticket to Ride, Splendor, Small World, Dominion and Star Realms. You can watch the action live at www.twitch.tv/extralife4kids all day Friday and Saturday.

And I'd be remiss not to mention I've got my fundraising page already set up at extra-life.org/participant/sean - or donate at extra-life.org/participant/trish too.

It's going to be a jam-packed few days. I can't wait.

Monday, 20 March 2017

Normal is good


She's got his cheeks, his nose, some of his clothes and all of his ability to be cute.

She's also got an oximeter on her foot at night, ready to alert us if anything goes wrong.

The new normal with Samantha is surprisingly similar to how Dominic was, almost to the point of deja vu. But we still look out the back door and there's his bench, on a spring day overloaded with kids at the playground. His urn still sits atop the mantle. His beads are still displayed prominently.

I'd have thought there would be more sadness, or at least fear, tinged in with all of the love for our new child. Maybe that will come, especially at the 11-month mark when he was diagnosed with leukemia or when she has her first illness. I'm not searching for those feelings though. Maybe I'm too tired for any foreboding. Babies don't tend to sleep very well the first few weeks.

Sometimes this feels like Dom reached down from the heavens and said "you get a do-over." I looked into her eyes last night and felt him there, still unable to speak but smiling, glad I was happy in that moment. All he ever wanted was for people to be happy.

Realistically that's not how it works. There will be hurdles ahead, and we'll get through them just like we got through his problems. But I think our experience has allowed us to take greater comfort in the good times, and worry less about the minor troubles. That sense of perspective never goes away, even as it might lessen over time.

On Friday we took her to a local community centre for a baby social time. We'd taken Dom there often, and sure enough the staff remembered us. We'd donated some things to them and I immediately spotted one - a play mat and pillow for tummy time. One mom talked about going to swim lessons and Trish and I just about squeaked we were so giddy with the idea. Not until she's had her first set of vaccinations though.

Then another woman came up and started asking questions.

"Do you have any other children?" Yes, yes we do.

"How old are they?" Well, he died of cancer 18 months ago. He's forever two.

I know Trish feels bad about answering that question, because some people then feel bad for asking it and want to crawl in a hole. But I almost want them to ask it, because even though it's a bit awkward I'd rather they know why I'm holding Samantha extra tight, or glancing at her more than is normal. I'm not going to buy a bumper sticker that says "rainbow baby on board" but find it easier to get the awkwardness out of the way.

Just as important, I try to normalize the conversation after that by not continuing to talk about Dominic. If someone wants to ask about him, fine, but lingering on the subject can make finding middle ground impossible with someone you've just met.

We all have our own stories. This is ours. Dominic is forever part of it, and this new chapter is proving to be just as exciting.

Thursday, 23 February 2017

Samantha

 
Samantha Trish Rooney, we love you.

Born Thursday, Feb. 23, 2017 via Caesarean section at the Medicine Hat Regional Hospital, our little girl is doing well. Meanwhile, we've had to look at each other a few times to say "she's real."

After Dominic we never thought we'd have another child. Certainly not so soon. Just like Dom, once Trish found out she was pregnant she steadfastly refused to believe it until she was born.

Unlike Dom, Samantha has some hair already and is a bit bigger than he was at first. But her face is familiar, those chubby cheeks and cute nose beg to be kissed and she definitely has a healthy set of lungs.

Though still a C-section, hers was quite a different scenario to enter the world. Two of the nurses in the operating room were friends of ours. It wasn't an emergency situation because we knew well in advance she was facing the wrong way for a natural delivery. No 29 hours of labour leading up to it, and nothing to worry about after.

She enters a world of hope where she could grow up to do anything imaginable. There will be challenges, sure, but we will do everything we can to help her navigate them.

And she's got a brother looking down on her, one whom she'll never meet but will learn so much about.
 

Thursday, 16 February 2017

So much to live up to


I'm sorry, baby girl. You've got impossibly high expectations to live up to, and we're scared as hell about you.

You'll never know your brother. But his legend will forever cloud how people think of you, what they expect from you. He was so happy! He slept through the night within a month! He inspired people! Yet your mom and I won't be able to look at you without a little bit of fear creeping in that what happened to him might one day befall you as well.

It's irrational; we know that. But we lived the nightmare, and there's a spot way back in our minds that says it's a mistake to have another child at all. What if our genes are destined to fail you? What if the dragon that took him comes for you too?

You've already managed to be grounded before you're born. By flipping around in mom's belly, you had the doctors thinking C-section one week, natural birth the next, then back to the C-section again. Had it just been a C-section from the get-go, you might have come early enough that mom could've come with me to Orlando in March for the Extra Life United gaming tournament and conference. Mom likes the idea of a vacation, but the doctors don't like the chance of blood clots so they won't let her go so soon after you're born.

It's not fair. You shouldn't be saddled with any of this. But on the other hand we are going to love you just as much as we loved Dominic; we know how precious you are, how we will cherish every moment, no matter how tired we get or what problems may come.

A lot of people are excited to meet you. There was a baby shower the other week and your closet is now full of clothes. Mom cut down her hours at work, and is now on maternity leave. I swear I'm going to install the car seat tomorrow (or maybe the next day).

Mom was talking to a friend yesterday and lamented how you're already causing her issues. They joked how funny it was for a parent to be scolding their unborn child. It also reminds me how stressed out we really are about you, even if we don't say it. Everyone expects us to be so excited about you - and we are - but that's just one side of the coin. It's just not that simple after what we went through. It never will be.

I watch videos of him and it feels like eons ago: It wasn't even two years. It's like looking through a foggy mirror at someone else's life. I had hair! We raised how much money? Is it wrong that I miss so many of the staff at the hospital?

You can never completely move on, and now we're on the precipice of another huge change. I'm looking forward to it - I guess I'm hoping you're going to reach out and drag me forward. It's an unreasonable expectation, but I'm counting on it nonetheless.

It's 4 a.m. and I can't sleep. It's not your fault. I mean, it will be some other time I'm up at 4 a.m., no doubt about it. But for now I'm a mixture of anxiety and sadness and hope and fear and love.

We can deal with whatever's ahead because we got through what happened in the past. That doesn't mean it'll feel like a cakewalk, however, and you're still totally grounded.

Thursday, 26 January 2017

Nesting

 
It's a month away from baby girl's due date and we've finally flipped the switch: It's time to get ready for her.

Sure, we did the room a month ago, but now that Trish has had to cut back her hours at work due to nausea and just generally being exhausted, it's sunk in that this kid is coming soon.

It started with wanting to clean out a closet. Then came a room. Yesterday I went through my closet and threw out bags full of old clothes.

We did some minor repairs to the room, a few final touches. Went to Costco and bought baby wipes. Suddenly I found myself checking camera angles for the baby monitor.

And then it hit me: We're nesting.

This is all perfectly normal, of course. We did the same thing before Dom. Wanted the house nice and clean, because we knew we wouldn't be getting much sleep the first few weeks.

As it turned out that phase didn't last long. He was an amazing sleeper, until everything went awry.

Baby girl might be coming soon, but we're still not entirely sure how that's going to go. She was flipped the wrong way a month back, then a couple weeks later had flipped head down - perfect. Two weeks after that? Back the wrong direction. She's a gymnast, and already isn't listening.

Today there was another ultrasound, but with a twist: the technician had to do a test. Points for limb movement, breathing motions and the like. She had 30 minutes but achieved the target score in about 10. Total all-star.

Trish is not-so-silently hoping she comes the first week of February. The doc said she would need six weeks before he'd allow her to go on a plane. Why would you want to fly? To Orlando, of course. When we went to Extra Life United last year we made so many new friends, and this year's event runs March 23-25. I've already got my ticket booked, but chances are Trish and baby girl won't be able to make it. There's always FaceTime, but of course Trish is holding out hope.

I might as well mention I have set up my Extra Life fundraising page for the Alberta Children's Hospital for 2017. Team #Dominicstrong raised US$23,256.03 last year, and we'll hopefully improve on that this year.

Not sure when the next update here will be. Maybe when there's a baby?

Thursday, 29 December 2016

Room to grow


For more than a year the door remained closed.

His bed, unmade since he slept in it last. A bib in the hamper. A plastic bag labelled chemotherapy on the dresser, with a couple water-filled syringes inside.

We couldn't bring ourselves to do anything with it.

With a baby girl on the way, we knew we'd have to sometime. That sometime was this week, a couple days after Christmas.

Angie has been one of Trish's best friends through all of this. We met her family in hospital when their daughter, around the same age as Dominic, was diagnosed with leukemia. She's doing great now and every once in a while Angie will pay us a visit, driving three hours from Calgary and staying a day.

Those days, we're at our most productive. Art projects get finished. Unused medical supplies get divvied up and sent back to hospital families. And this week, the door to the room is opened.

Angie showed up and within a half hour they were in the room, going through his old clothes to decide what was gender-neutral enough to put in the keep pile, what could be donated and what needed to stay (because you never know...). The first pile turned out to be pretty small, though Angie and I did insist we keep the Darth Vader pajamas. And the light sabre. Duh.

You'd think going through the room would require a couple boxes of Kleenex, but no. It felt good to see the room transform, and thanks to a donation from Rae, a friend in Medicine Hat, it really does feel different now. Her twins had a ladybug-themed room and she gave all of it to us. Combined with the original idea that the top half of the room was blue like the sky and the bottom green like the grass, the resulting motif is nature. Trish wanted me to paint it for a while but - Angie to the rescue again - it got voted down.

It's amazing how much stuff was in there. We've got three bags' worth of clothes and sheets and stuffed animals to give away. That's after we chose plenty to keep. The same sort of thing happened a year ago when Trish and I went through all of the toys. You keep the best stuff knowing you'll inevitably acquire a lot more.

I envision some day out with our baby girl when we recognize an old outfit of Dom's on some other child as we pass. Will it feel odd? Will we smile or cry? Maybe we'll laugh. Maybe all three.

The door is open now. We can see right in to the crib from our bedroom across the hall. The baby monitor is ready, the light is a dim pink, and the bed is made.

She's healthy as can be according to our doctor and the monthly ultrasounds. Sideways, which may require another C-section, but a strong heartbeat and kicking like nobody's business according to mom.


Another couple months. We're ready to meet her.

Sunday, 11 December 2016

To infinity


We only met once or twice. Our time together is measured in minutes, not days, months, or years. But we'll never forget them.

Kids with cancer tend to do that to you.

Zander wasn't even awake when we came to see him and his parents. His brain cancer and the chemotherapy needed to treat it left him wheelchair-bound, and they were staying at a house in Calgary, a four-hour drive from their home in Saskatchewan. He was laying on the couch, zonked out.

You knew everyone was exhausted, because when you're a cancer parent that comes with the territory. Heck, when you're a parent that comes with the territory, but it's amplified when your life is turned upside-down.

We offered what help we could, and continue to be in touch with them to this day. Whenever I saw a picture of Zander with the animal stickers we'd recommended keeping his feeding tube in place, I smiled. He was such a strong kid... maybe I was projecting a bit of Dom onto him too.

Like us they had a long road. The discovery of the tumours despite numerous doctors disagreeing there was anything wrong; the treatment, even the hope after initial remission that somehow persevered after the cancer returned.

Four-year-old Zander, like our two-year-old Dominic, was wise beyond his years.

One night this summer he lingered, looking out at the stars. "I'll be one of those stars someday," he told his mom.

Not bad for a kid who idolized Buzz Lightyear from the movie Toy Story.

We only know that story because it was shared at his eulogy Dec. 10 in Medicine Hat. On the program for the service was Zander and the headline, "To Infinity and Beyond." He's a superhero in our hearts.

Derek, we met when we went to Orlando in February for Extra Life United at the Children's Miracle Network conference. We'd made sure to research all we could about the champion kids coming from Canada, and Derek was the 16-year-old brain cancer survivor from Edmonton's Stollery Children's Hospital.

He even liked video games, so this was destined to go well. As it turned out, he knew many of the celebrities Extra Life had brought in for the tournament. One night we were hanging out with Derek and his family when some of the guys from the gaming group Mindcrack showed up. He thought they were the stars, but the truth was he outshone them all. The smile he had on his face when I took their group photo was priceless.

When it came time for the Extra Life group to share in some game time with the champion kids, the presumption was we'd take it easy and play safe so they'd win. With Derek, that wasn't necessary. He was so good he probably would've won money for his hospital if he'd had the time to participate.

Derek also had wisdom most could only dream of. "If you can make a small difference in someone's life, that's what life is all about," he said. "When you do something nice, people remember it, so you should remember to stay kind."

His dad shared those words on Facebook today. Derek's funeral is Wednesday.

Derek and Zander died within hours of each other Dec. 4.

I'd love to share some greater truth or lesson from all of this, but the fact is all I feel is pain. That'll evolve into something else, but for now, I think of the road ahead for those families. Among the hardest parts of losing a child in this way is that after the eulogies, the donations in kind, the extra hugs and meals from friends is that eventually, it ends and you're left with a broken heart. At this time of year when everyone celebrates being together, knowing someone you love is gone is simply horrifying.

Yes, you can refocus and pour your heart into what you still have. And I am thankful we know Zander and Derek and all the other kids we've met because of Dominic's journey.

But I'd be much happier if I didn't know any of them, or cancer.