Going with the flow

Last Friday I visited Sébastien in the PICU of the Winnipeg Children’s Hospital. Surprise, surprise… I bet you weren’t expecting me to write this on the blog after just telling you Sébastien arrived in Winnipeg… on holidays for five whole weeks. Well, we weren’t expecting to come back from a visit to Saskatoon (my lovely little home-city) to hear that Sébastien had had severe bleeding and a bad infection to boot. Catching up on the details with Jasmina over the phone, I was thinking I could chime in to a refrain of “It’s so unfair”… or something similar. But no, Jasmina would simply say: “We learn to go with the flow…” as though this modern and perfectly manicured mother had just attended the Woodstock Festival in 1969 and decided that hospital visits would be all peace and love.

The strange infection which Sébastien only seems to get here in Winnipeg, is sending him back to Toronto on a mission to resolve the infection and find the source of the bleeding. They’re leaving this week… possibly Thursday. And before then, we actually want to see them. More than once. We’d like to claim “first dibs” on Sébastien… but we have to be patient and wait our turn… and hope that events are in our favor. It also looks like it will be the last time that we’ll see Sébastien in Winnipeg for a long time… Jasmina says that until Sébastien has had his kidney transplant, they’ll stay in Toronto.

For now, Sébastien is discharged and the hospital in Toronto will decide if Sébastien is to take a commercial flight back or be airlifted. As I write, my handsome husband is having Sébastien’s most recent pictures put on CD. So, new pictures of Sébastien will be on Flickr soon. Even though I’m on holidays… (Honestly? Sébastien is too cute not to share!)

Sébastien’s in Winnipeg!

I forgot my camera. In the back of my mind, before I left, I thought about bringing it, but that thought fell out, somewhere between remembering my purse, and fixing my hair. So, my Prince and I went out for an anniversary date. I was well enough for that… even though I’d taken a completely justifiable day off from work to catch up on a bad night of sleep and chase away a menacing cold that attacked me by surprise. And on our way home, or just before, I put on my best fawn eyes, and asked my husband of three years, if we couldn’t “just stop by real quick” at David and Jasmina’s house to see if they’d arrived safetly. He agreed. Mostly because he’s charming and partly because he’s used to my spontaneous and sometimes unreasonable requests. Though he did underline to me that I had a cold. “I know… I’ll stay away from Sébastien, or wear a mask and douse myself with hand sanitizer… and we won’t stay long. And,” I told him, “I want them to know we’re happy they’re home.” I sometimes try to make my case too hard, but the Prince doesn’t mind… though I’ve noticed he can tune out.

So, before going home, we went a little further and dropped in on the two travellers. David opened the door to us, precariously stepping over a stair guard that had been installed to keep the more-mobile-Sébastien from deciding to try something he didn’t have in Toronto… We stayed in the porch. Sébastien looked at us through the holes in the stair guard and put on a performance is if to say: “Jet-lag? What jet-lag?” He’d take his toes and touch his nose, declaring “phew”, always active, moving here and there, pulling at Po (the teletubbie), requesting his train. “It’s a whole new place full of different toys!” Grandma explained as we watched him turn about, asking for “Ma-ma”, pointing at toys, and we wanted to bound up the stairs and tussle his whispy hair, tease the small curls and tickle his neck with kisses. Of course, we didn’t. Instead, he’d tease us, taking his arm, and blowing raspberries into his elbow, seeing if we’d laugh at his joke.

“Sébastien! What does a cow do?” Jasmina asks.
“Moo”
“What does a dog do?”
“Arf”
“What does a cat do?”
“Miao”
“What does… a lion do?”
“Rar” and deciding it wasn’t fierce enough, Sébastien lifts his hands beside his face, curling his fingers like claws and does a much more guttural “Roar”. We laugh and clap and Sébastien smiles, basking in the attention of a new audience.

The stair guard had been removed by now, and I asked Jasmina how Sébastien reacted to the flight. “He loved it!” she answered. They’d prepared him for the airplane, building his anticipation for a month before yesterday. Jasmina took pictures, and the attendants had him visit the cockpit. He looked like the happiest traveller I’d ever seen, sitting by the window, with Dora at his side, smiling up at the camera.

So, yes, they’ve arrived in Winnipeg safe and sound. Hooray for holidays and visits and friends… We’re hoping they have a relaxing stay and no medical surprises!

I give up

I was quite confident that Jasmina and Sébastien were arriving in Winnipeg this Saturday. Perhaps I should have consulted a crystal ball to see that for a fourth time, the date would be changed. Or maybe I should have known that Murphy’s law is particularly strong when it comes to writing predictions on a blog. So I’m not going to tell you when Jasmina and Sébastien are thinking of rescheduling the flight. You’ll have to guess on your own. And I’ll tell you if you’re right once they come. And I’ll take photo evidence of them in the Winnipeg airport.

We only found out last night, coming home in the car from an evening of errands, my husband noticed David riding his bike. Jasmina and Sébastien are at the hospital, after an unexpected bleed. Color me disappointed, like a blush it was hard to hide. After a week of busy evenings, I was planning to call Jasmina tonight to wish her a safe trip, after all, she’d spent the beginning of the week packing medical supplies to last a lengthy stay.  “Jasmina’s over it” David said. I suppose you develop an immunity after awhile. Our answers are sounding a little repetitive… “With Sébastien you have to expect the unexpected.” Or, “Good thing they’re dealing with it over there.” And then something we don’t say aloud… “We’re still hopeful he comes soon!”

Visit home part 3

I know. I told you in secret that Jasmina and Sébastien would be coming around the 19th. Then swollen lymph nodes happened. Then I said they’d be coming Friday, or Sunday. But nurses and medical staff have long weekends too. So now I’m telling you they’re coming to Winnipeg Saturday July 5th. And the only reason I’m a little more confident this time, is because the plane tickets are bought. As the expression goes: “Don’t shoot the piano player; he’s doing the best he can.”

Good news!

Jasmina called later last night to say: “We’re cured!” like a cheer for Sébastien, who was playing with barnyard animals not far from her. The tests came back with good results: no cancer and only some signs of a mild infection that was untraceable. It was perhaps the biggest scare so far, but, if SickKids gives them the “all clear” David, Jasmina and Sébastien are on their way to Winnipeg, as soon as… wait for it… this Friday! We’re excited!

Message…

Coming home from work last night, there is a message on our answering machine…

“Hi J & C, it’s Jasmina, just calling to let you know the preliminary results after today’s looonnng test. So far it looks very good. There’s no kind of concern about cancer stuff, but we’ll know for sure tomorrow with the final results, another ultra-sound and more testing. So thanks for the prayers…”

The whole (short) story

Today, from 10 until 3, Sébastien will be undergoing tests. Forty-five minutes preparation including anesthesia for the PET scan, the CT scan and whatever else comes after… then the wait for a diagnostic. Swollen lymph nodes could mean two things: an infection like EBV (which people who are not immuno-suppressed can easily fight off) or cancer.

The swollen lymph nodes were discovered during an ultra-sound just last week. Sébastien seemed to have been complaining about a sore tummy, and Jasmina was happy SickKids investigated before their trip to Winnipeg.

The Oncology unit seemed optimistic and gave David and Jasmina reason to hope that it might only be an infection. It has to be confirmed, but Jasmina and David are determined to stay positive.

“You’d be amazed to see him,” Jasmina was telling me, “he pulls himself up to sit, and he scoots everywhere… He’s really determined to walk, and yesterday he pulled himself onto his knees!” I didn’t ask if it was to say a prayer…

Change of plans

I overheard my husband talking to David about Jasmina and Sébastien’s visit to Winnipeg: “It’ll be for sure, when Jasmina and Sébastien are on the plane!” I figured it was kind of pessimistic. But, it turned out he was right…

David called yesterday, and said that amoung other things, the tests revealed that Sébastien’s lymph nodes were swollen. Not sure of what it might mean and how serious it might be, Sébastien has been scheduled for further tests… a CAT scan, and an MRI. To stay still, he’ll be put to sleep, and David is returning to Toronto Monday. I still hope that a summer visit will be possible…

Friday’s Inspiration

Every Friday, Place de choix will post the best inspirational quotes, links and videos noticed throughout the week. Have an inspirational link you want featured?  Please leave it in the comments!

First one: The Years Are Short by Gretchen Ruben who started a blog called The Happiness Project.

Second: A quote I love from Jean Vanier

I marvel sometimes when I visit families with a son or a daughter who has a severe handicap. The parents are living each day, and sometimes the whole day, with little help or times of rest. They are not admired or honoured for what they are doing; sometimes they are even criticised for not having aborted their child or put him or her into an institution, outside the general run of society. We in l’Arche have days off; we get help and encouragement from professionals and clergy. We even receive salaries. And often people see us as wonderful and generous people. And yet, isn’t it those families who are living love and truth and humility and abandonment to God in a special way? Isn’t it all those families in the ghettos of large cities struggling to feed their children who are radiating a truth about our humanity? People who have chosen to live in community have much to learn from all those people throughout the world who are living love in a simple hidden way, and who are there welcoming and forgiving.

Jean Vanier, Community and Growth, p. 312

A secret…

I’m going to tell you a little secret… It’s a secret because we’re not 100% sure it’s going to happen… But, if you cross your fingers, and hope for the best, it might. Are you interested? You might have already heard… Jasmina and Sébastien might be coming in a week. For a visit to Winnipeg! And they’ll stay over a month. If all goes well. No infections, or mysterious red spots… Just fun in the sun, and play dates around home.

But sshhhh… it’s a secret. Come back later, and I’ll tell you if it’s for sure, okay?

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About

C'mon, show your smile!

Place de choix is what you get when you mix a very special godchild with an extraordinary medical history. Sébastien started life with gastroschisis in December of 2004. With the constant care of his parents, David and Jasmina, Sébastien lived to have a liver and bowel transplant in August of 2006. He is now waiting for a kidney transplant in Toronto before coming back home to Winnipeg. The author of this blog is mostly his proud godmother Jacinta who tries to shorten the wait for his parents and friends with more or less amusing posts.

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