The last of the three videos has arrived! Sébastien is getting ready for bed. Jasmina teaches Sébastien to brush his teeth and wash his hands. Enjoy!
Archive for March, 2007
My husband brought in the mail this morning… my Amazon order and a Style at Home magazine amid a collection of flyers. For Jasmina and I, Style at Home is our favorite magazine. We compare what we’ve found striking and set aside articles we particularly like for future project ideas.
I don’t know if it was Style at Home that inspired Jasmina to paint Sébastien’s room a very cheery green color… There is a rocking chair in one corner and in another, a changing table. But rather than the usual diapers and wipes, there are baskets of medical tape, syringes and ostomy bags. The bed stands empty, its colorful blankets neatly spread as though they were waiting… The mirrored closet doors open to reveal clothes on hangers that Sébastien has already outgrown away from home.
I can’t help but feel a tiny sad feeling when I visit his room, like the feeling I have when I visit a house turned into a museum. The way the furniture is arranged, the way things seem to be left half undone… and the strange quiet of everyday articles left unused.
Having a child with a medical dossier as thick as a book must be in a way, the death of a dream and the birth of a whole new adventure. The nursery you imagine and lovingly plan will go unused… The hopes you had of seeing your child grow and evolve at home are replaced by long hospital visits, and the usual milestones that other children meet, have another schedule for your own.
Time gets twisted out of shape with a child who has special needs. Their body, fighting for recovery, seems to mock the ticking of the clock, covering its ears and brushing it away. In its place, you have the timelessness of little everyday achievements. For the schedules you are forced to set aside, you learn patience, for the milestones your child may or may not reach, you come to appreciate the little things that are unique. You trade in the dreams of a regular parent for the extraordinary desire that your child live against the odds.
“Sébastien should know what is going to happen…” Jasmina said.
“For sure!” I agreed.
“Even if a child can’t respond when you talk to them… I find Sébastien is more calm when he knows that he’s going to be poked, or whatever. I always tell him. I don’t want to hide it from him or distract him.”
The conversation we’d had over the phone came back to my mind when I read a quote from the Toronto Sun special edition.
We empower the kids with knowledge about their ailment. Knowledge equals control. They can manage when there are no surprises. (Erin Boyle, child life specialist)
And it is true! Ace Burpee often said to the child he was interviewing, during the Children’s Miracle Radiothon in Winnipeg, “You know too much!” And usually the child would laugh shyly, no doubt proud about the compliment. En passant, the radiothon raised a record 600 000$ this year. The money will help the Children’s Hospital here to pay for two reverse dialysis machines. More on that in another post!
Today begins the 21st annual SickKids Radiothon in Toronto. For those who are able to listen in via their computer, a live interview with Jasmina and Sébastien will be aired around 10:00 am on Thursday. More details here.
David came back last week and gave us the Toronto Star Special Section. Of course, the first impulse of the proud godparents that we are, is to look through and find something about Sébastien. And there was a picture of him… he’s sitting at a table concentrating on an activity to develop his motor skills. The caption under the picture read something to the effect of Sébastien being “two weeks old” and following physiotherapy. It made us laugh. At nearly 20 lbs, Sébastien is pretty big for two weeks and far too precocious!
But that’s not all. Our “poster child” is featured on the Toronto Star website. If you watch the slideshow here, there are three pictures of Sébastien. The cameraman managed to capture Jasmina and Sébastien together, in a precious moment, as they are resting from the session. I was only too delighted to find their pictures and share them with you!
By the way, there are new pictures of Sébastien on Flickr!
On Friday, I finally tuned in to Hot 103 while at work. “Already Friday!” I thought… But, listening in late, must be better than not listening in at all. I didn’t hear Jasmina and David’s phone interview, but heard instead many other stories, just as touching.
“How does it feel to go out and to have to explain to people about your son?” Ace asked a mother. She replied, “We get used to it… I’m expecting a PhD in the mail one of these days!” she laughed.
A father talked about his son’s development with the rare condition he had, commenting “you have books about what a child’s development should be at certain ages and we wonder when is it going to happen? Is it going to happen?” Ace asked in what ways having a son with such a rare condition affected the family. “Sometimes, if he cries in the night, or something, we wonder, ‘Is it a normal baby thing, or a thing because of his condition?’ ” The mother added, “If we worried all the time, we wouldn’t be a family.”
In one day, there were many incredible stories, but perhaps, beyond the conditions that were so varied, what shone through was not the disease, but the resiliance… The patient that learned at such a young age what a bone marrow transplant was, the patient that continued her chemo treatments, the patients who hoped they’d get better, the families that stayed positive…
As Avril Lavigne sang “Keep holding on”, clips of the interviews that had been aired played. Trying to ignore the lump in my throat as the music played, trying not to think, so the tears wouldn’t fall, I noted some of the quotes…
You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
“We would be waking up every morning wondering if Haley was alive.”
And another, with tears in her voice: “This is really difficult, I didn’t think it would be this hard!”
Keep holdin’ on
Cause you know we’ll make it through
We’ll make it through
“The doctor’s didn’t think she’d make it through and she did and she’s our miracle”
Just, stay strong
Cause you know I’m here for you
I’m here for you
“All these things I never knew about until I came to Sick Kids.”
There’s nothing you can say (nothin you can say)
Nothing you can do (nothin you can do)
there’s no other way when it comes to the truth
So, keep holding on
Cause you know we’ll make it through
We’ll make it through
“When you start something, you’ve got to finish it.”
“I literally live in the hospital with her.”
So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend
“You feel like your life is falling apart around you… and it is… but you have to stay positive.”
Keep holdin’ on
Cause you know we’ll make it through
We’ll make it through
Just, stay strong
Cause you know I’m here for you
I’m here for you
“You just don’t go through things like that without the people at the hospital”
We are happy to present to you the second video of three. Ever so gently Sébastien is starting to eat. He tastes, explores textures, gets messy and sometimes he lets things fall, dropping them off the edge of his high chair table with such innocent eyes. The doctor advised Jasmina and David not to discipline him while he eats. Usually transplant patients have an aversion to food and won’t eat. So, Sébastien is encouraged to explore this new world of food in any way he wants. Incidentally, I think his parents enjoy watching him, just as much as he enjoys the new experience.
“… Our son’s life given back to us… thank heaven for that…” Jasmina wrote like an echo to what I had been reading the same day.
Perhaps like most people who are affected by something knew and unknown, the impulse is to search for answers. It’s like walking in the night with a flash light, trying to find where the path will lead, grasping at clues.
Aaron is a little boy from the U.K. who had a liver and bowel transplant very young like Sébastien. He is now ten and is pictured with a snowboard at the British Transplant Games competition.
James is another child from the U.K. who, like Aaron received a life saving liver and bowel transplant and is doing well.
Such stories are like little houses one spots at a distance – all aglow and warm. A glance in their direction reassures for a moment that all will be well.
Eleanor is a little american trooper. Born in April of 2006 with the Short Gut Syndrome, her mother decided to write and share her progress with friends and family, appropriately naming the blog “The Short Gut News”.
Then there is Gus. He is a little boy with a delightful toothy grin and bright eyes who unfortunately died waiting for a liver and bowel transplant. What is extraordinary about his story is his parents’ faith. They live in the US and in an effort to help people who are caring for a medically fragile child, or grieving the loss of a child, they send quilts to children, grief packages, and assure families of their prayerful support on the blog.
On that dark path, it’s nice to meet friends, to spot the footprints of others who’ve gone before.
My curiosity got the better of me. I found Jasmina’s new pager number in my e-mails and left my phone number. When she did call, perhaps an hour later, I was surprised. The new pager really worked!
“I was wondering how Sébastien’s operation went!” I explained. I vaguely guessed that others were curious too, as it had been mentionned earlier.
“It went good. They had to place it higher, closer to his ribs. He had an allergic reaction to the anesthetic. He cried, but he is doing better now.”
“Oh good!” I said, doodling on a post-it note and trying to imagine a tube to the stomac close to the ribs. Had the phone been cordless, I probably would have been walking around in circles, burning ice cream calories.
“Soon, they’ll remove his NG tube. It will be good for him, he won’t have any more acid reflux!”
I laughed. Acid reflux reminded me of commercials. The ones where the soothing pink liquid is pictured making its way to the stomach and extinguishing the pain. And for some reason I always imagined it being an elderly person’s problem. Something that came with age. Wikipedia proves otherwise.
“The doctors were actually surprised! He was sitting up not long after the operation.”
“Wow! That’s great!”
“Yeah! We had a meeting this morning with the doctors and Sébastien might be an outpatient in three weeks!”
“Really?” I exclaimed, already excited at the thought that they were one step closer to coming back home. “So, you would be staying at Ronald McDonald House together?”
“Yeah… we’re getting close to the six month limit for staying there. We’re going to meet them and see if we can get an extension.” My voice betrayed some worry as I wondered where else they could go. “But we’ll deal with it when it comes.” She reassured me. “Today the radio in Winnipeg interviewed us on the phone! We’ll be on the radio at Sick Kids at 10 o’clock on Thursday.”
“The Toronto radio?”
“Yes”
“That’s right, we’re probably able to hear you on the internet…”
And we talked of their possible visit to Winnipeg, the goings on in Toronto, the books we’ve read and home renovations. And somehow, an hour slipped by, and my post-it note ran out of doodling space.
“Oh! We’ll be on tv on Sunday. On CBC newsworld, between 10 and noon.”
Tune in if you have the chance. And check back here soon… we’re putting a surprise together!
When I visit the Sick Kids website, I’m always amazed by the number of fundraising events that are organized. Not least among the upcoming events is the Radiothon for the Toronto Sick Kids Hospital, broadcast live from the Atrium of the hospital March 28th, 29th and 30th. Toronto’s 99.9 Mix FM will be supporting the annual event.
In Winnipeg, the 2007 Children’s Miracle Radiothon will be broadcast live from the Children’s Hospital March 21st-23rd. The event is presented by Hot 103, which last year, helped raise over $500 000. Listen in to hear a telephone interview with Jasmina, David and Sébastien.
I came upon a beautiful and informative website called SavvyMom while looking for inspiration. For mothers and grandmothers out there who like to take child rearing with a sense of humor, babyteasewear has just the thing : cool clothing for cool kids. Take a peek! It’s almost tempting not to want to buy a somthing for Nathalie and Nolan’s baby shower this coming Sunday!
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