A birthday party invitation…

Hello my friends,

On December 12 I will turn 3 and we monkeys would like to invite you to celebrate with us on Saturday December 8 at 4:30 p.m. in the FOREST JUNGEL at the Bear Theater of the Sick Kids hospital….. Bananas and Snacks are provided hahahahah…. and looooooooooooooots of fun to celebrate my big 3 yeahhh…

your little monkey Sebastien xoxox

P.S.: Please drop me a line if you can come or not and there is also a Mass celebrated on Thursday December 6th at Noon mass at St. Patrick ’s Church in Toronto for Sebastien’s Donor and our little monkey…..

Nuts and bolts

Jasmina and I have started a tradition… a regular weekly call that is the highlight of my evening, a simple pleasure and a regular rendez-vous. It always includes a debrief of Sébastien’s past week. Christmas is in the air… I rush about hoping to find the perfect Christmas cards (or make them!) amid bathroom renovations we spontaneously decided to begin, but a phone call to Jasmina and I find her keeping track of Sébastien’s various tests, and happy in the little appartment that has become a cozy second home.

“Sébastien did well in his audiology test.”
“Audiology?”
“Yes, it’s a hearing test. He has an E.C.G. test on the 17th and he had his hematology test as well.”

So many terms are second nature now… “Sébastien went to the dentist!” Jasmina tells me. “He needs eight caps! Guess how much that would cost…” she asks me. Since Jasmina recently went to the doctor, also needing a few caps, I try to multiply an imaginary number and don’t even come close, venturing:
“Eight hundred?”
“Two thousand!”
“Oh my gosh!”
“He needs them because he grinds his teeth.” It’s Sébastien’s reaction to stress. Apparently the medical team following Sébastien’s case would have to decide whether his teeth take precedence over his kidneys or vice versa, as capping his teeth would mean an operation and general anaesthesia.

“Does he still have his infection?” I ask… It had started during their visit in October and had manifested itself in red circles on his skin. The infection is perhaps the only thing that is delaying Sébastien from getting onto the kidney transplant list. “They stopped the antibiotics. But Sébastien started having spots again and he wasn’t feeling too well for a few days.” Jasmina explains.

But, little inconveniences haven’t stopped Sébastien and Jasmina from getting out and advocating organ donation. Last Wednesday evening, Jasmina and Sébastien were special guests at a talk Linda Rumble was giving at the Ryerson University. “This Friday, we’re recruiting nurses!” Jasmina tells me. She’s already told me that her wish is to give talks to encourage organ donation… It’s just as equally moving for the audience to see Sébastien, alive after a liver and bowel transplant, as it is for Jasmina to show that with perseverance and determination, it is possible to extend a child’s life that – in another time, or in another country, would have been in peril of being too short.

On another note… Sébastien’s birthday is coming up quickly… We could all pitch in to pay him a set of caps… or, joking aside, we could adopt a creative project if you have some suggestions in mind to send me: jpalud at gmail dot com – I’m open to anything! Last year, we sent him an album of wishes with pictures from nearly everyone who knew him in Winnipeg. This year, he’s turning three and I hear that his Mama has a jungle themed birthday planned for her Monkey!

UPDATE: Sébastien is scheduled to go to the O.R. on Friday at noon to receive his eight caps. Have a thought for him!

Message from Sébastien…

Hello my friends,
 
I would like to invite you to come and support the fundraiser at any
Burger King Location in Manitoba as I am featured as the patient of the
Year of Manitoba to support the Sick kids hospital…. please check it
out My profile and picture is featured at any Burger King Location and
people can purchase a Toonie Bear to support this great hospital that
has been my home and my saving place…..
 
 
Thank you sooooooo much……
 
 
Your little monkey Sebastien xooxoxxoxo

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Dear Jasmina

Sunday was actually a dreadful day here in Winnipeg, weatherwise. I was under house arrest, due to a passing cold front that has blown snow everywhere. Our car is absolutely dreadful in this weather. I had plans… I was supposed to go to a baby shower in Sainte-Agathe. Being a bit last minute, I went to Chapters just as the snow started. I picked up a few gifts and a Chai Tea Latte at the Starbucks and headed home. It only took until the third light to finally get onto Saint-Mary’s from Meadowood, and I turned slowly. But as our car is infinitely more stubborn than its french-irish driver, it decided not to complete the turn, and instead head straight for the curb, making a soft “clunk” sound. Of course, traffic had to stop, allowing me to slowly back out of my predicament, hastily roll down the window, and wave thankfully for their understanding, before proceeding at a snail’s pace, to make it home only slightly upset. Since my lovely husband with many more years of experience on winter roads was up to his head in report cards, I was forced to forgo a trip to Sainte-Agathe for the shower.

But, that is not the reason I’m writing… forgive my rambling… I just thought you’d appreciate not being here right now. You must admit, there are some perks to being in Toronto without a car!

I thought I’d tell you how well the “What a Girl Wants Gala” went. David will be bringing you the swag bag they distributed. I hope it doesn’t get too crushed! The Gala was held at the Fairmont Hotel, in a large room at the top of the escalator. Stephanie and I arrived early to make sure the presentation worked well. The traffic was something else, as the evening coincided with the Santa Clause parade and all traffic was diverged from Portage and Main to the side streets. The evening began with cocktails at six o’clock. At seven, Susan Tymofichuk – Winnipeg’s CTV News anchor, welcomed the guests… mostly all ladies, elegantly dressed, appreciators of wine and designer handbags. Kerri-Irvin Ross, Minister of Healthy Living also addressed a warm welcome to everyone present. She was seated at the same table as Stephanie and I and asked about Sébastien, later commenting that after hearing a story like his, our complaints seem so small.

The dinner was a delicious three course meal… including a salad with maple raspberry vinaigrette, a main course of chicken breast with a wild mushroom and red wine cheddar stuffing, caramelized onion mashed potato and seasonal vegetables (slivers of orange, yellow and light green, a piece of red pepper on top and two green beans on the side), the whole with a dark brown sauce of pan juices. The desert (my favorite part!) was described as a lemon and blueberry teardrop with a chocolate tuile purse, fresh seasonal berries, two sauces and crisp sugar chards. Really, what it was, was a piece of cake, shaped like a teardrop, with elegant chocolate polka dots along the side. Stephanie and I puzzled over how they possibly could have made such perfect polka dots… The second layer was a kind of lemon flavored mousse, or custard, topped with a glaze and a dollop of whipped cream, a few blueberries and a slice of strawberry. And the “tuile purse” was like a thin cookie, shaped like purse, the bottom part, of chocolate.

After diner, there was a raffle. Stephanie and I purchased many tickets, hoping one would be a winner… but unfortunately, neither of us won. We did however win the lamp that was the table centerpiece – a unique and charming idea. You’ll probably see it when you go home, I think David put it in your bedroom.

When it was time for telling Sébastien’s story, everyone listened, no doubt captured by his beautiful face on the screen… the one with him in his carrying seat in the summer of 2005. As I explained how his liver had been affected by the TPN, you could have heard a pin drop. As Stephanie and I were leaving two ladies stopped us and admitted being touched by his story.

So many people thought of you… I know that in return, you are simply happy that Sébastien’s story is what it is today. Today, he is happy and smiling, delighted to be at “home” in your little appartment with its hardwood floors, and occasional cockroaches!

Miss you!
Take care,
Jacinta

Magical surprises

Jasmina describes the Bay in Toronto as though it is a magical place, and perhaps, amidst the Christmas decorations that could make the shopper believe he’d landed at the North Pole, there is something that kindles the heart…

A few months ago, a man working in the toy department spied David, Jasmina and Sébastien in the store, admiring the many toys that entice and beg “play with me”. Noticing Sébastien trying out a toy car, the man approached the family and asked about Sébastien. It so happened that he was the uncle of a little girl who lived in the Philippines. She was suffering from liver disease, and the family had organised a fundraiser to have her come to Canada, in the hope of receiving a transplant. Jasmina asked: “How old is your niece?” The man teared up, saying that she had died in the Philippines, waiting for enough money to bring her to Canada. She was three years old. “I’m so sorry!” Jasmina tried to console him. “Sébastien is so lucky!” he’d replied.

As they were walking away, he ran after them to give them the car Sébastien had been playing on. Jasmina suggested he give it to the hospital, but he insisted they should receive it, perhaps with the unmentioned desire that they remember his niece, and how fortunate they were.

“It’s a beautiful car!” Jasmina told me… “We wouldn’t have been able to buy it, but he wanted so much to give it to us!”

Talking with Jasmina on the phone, she mentioned that she’d returned to the Bay to admire the Christmas decorations with Sébastien, and to give that man a picture. He was happy to see them again and introduced Sébastien to his co-workers and his manager. The manager, shaking hands with Jasmina and Sébastien said: “Come Sunday! Santa Clause will be here, and we’ll have him give Sébastien a gift!”

“Another gift!” Jasmina said to me… “We don’t even ask for it! People are so generous.” Finding themselves in a new apartment, with the occasional cockroaches, Jasmina is nonetheless touched by how often people offer things for Sébastien without asking anything in return. “One of the lady volunteers at the hospital asked if we had a toaster. I offered to pay her something for one, and she refused to hear of it, saying that we’d also have a Christmas tree for the holidays. She told me: ‘You don’t know how much Sébastien means to us.’ “

I think Jasmina would agree; this quote pretty much sums it up: “There is no surprise more magical than the surprise of being loved: It is God’s finger on man’s shoulder” Charles Morgan

Handmade ideas

For those of you who may not know, Jasmina is a very creative and crafty person. While I’d visited in Toronto, she’d started smocking little gowns for infants resembling something like this, for sale at the Sick Kids Hospital gift shop. The reason I mention this, before leaving you with a note from Jasmina, is that I’ve added a badge to the blog encouraging people to buy handmade this holiday season. Here are five good reasons taken from the website that has over 4 400 supporters:

1. Handmade supports individuality
2. It’s thoughtful, unique and meaningful
3. “Everytime you buy handmade, a warm fuzzie is born”
4. It beats store lines
5. It won’t be recalled from China

Here are some ideas:

1. Ten Thousand Villages supporting fair trade
2. Etsy the biggest online resource for all things handmade
3. Botanical Paperworks here in Winnipeg! Plantable paper!
4. Baking, crafts, decor… Martha Stewart can inspire anything!

And, to end the week, a thank-you note from Jasmina.

Hello friends,

It has been such a wonderful time being able to go to Winnipeg and be home with our beloved David and all of you… It was a very emotional time to embrace all the bad memories we had at our house of Sebastien being soooo sick and this visit gave us the opportunity to embrace those bad memories and transform them and create new wonderful memories… and there is no place like home… being able to eat a home cooked meal or even just being able to sleep in our own bed… ahhhhhhhhhhhhhhhh it was soooo nice, seeing all of you and just feeling like a normal family to welcome home David after his long day at work just meant a loooooooooooooot… it meant soooooooooooooo much to Sebastien and me… thank you from the bottom of our heart… it was very difficult to leave our home but we are challenging and embracing Sebastien’s journey for a kidney transplant and all the work up for it… sooo we had to move into a one bed room apartment close to the hospital as Sebastien goes every day for his treatments there… I would like to really thank all of you for having made our home visit such a wonderful time and it really really gave us more strength to continue to support our sweet son Sebastien on his journey towards his future kidney transplant…

Well, thank you all for having welcomed us home and a big thank you to you David that really tried sooo hard to get us home for this home visit and organized with the Toronto Team and Winnipeg Team everything and the wonderful Suprise Party… it was amazing…

Sebastien goes Monday, Wednesday, Friday, & Saturday to Dialysis in the morning hours. The other days he goes to Physio or OT (Occupational Therapy) and usually Sunday is our day off… Soooo usually after Sebastien is gone to bed at 9:00 p.m. things are more quiet.He also is getting a antibiotic treatment every 8 hours – at 11:00 a.m., 7:00 p.m., and 3:00 a.m., which is via IV and takes me about 1 hour from start to finish……

Other than that Sebastien is just blooming in his developement and he is even eating again some ice cream and sweet potatoes… thanks to David’s exellent effort… and he is nearly getting himself into sitting position from lying down all by himself… yeahhh thanks to David’s hard work on Physio with him….

Thanks also to eveyone helping us with the move to the apartment and to everyone donating items for this too… xooxooxooxoooxoxoxooxooxx

Take care and God bless
With Love xoxooxoxooxoxxooxxoxo
little monkey Sebastien xoxoxo & David & Jasmina xooxox

Back in Toronto

Jasmina, David and Sébastien have officially moved to a new apartment, not far from the Ronald McDonald House. Their apartment on the seventh floor has clean laminate floors as Jasmina was delighted to tell me, appreciating the cleanliness… although a neighbor, passing them in the hallway asked “Have you got cockroaches?” “If we get cockroaches, I’m leaving!” Jasmina laughed. I think we both have the same kind of fear of bugs… It’s one thing that makes me scream like a little girl.

David had courageously decided to do the first few trips by walking before deciding to rent a car. Sébastien has a surprising amount of toys, the majority are gifts, including one life-size teddy bear that could almost serve as a babysitter. Their apartment is furnished with second-hand furniture, collected and passed on to David and Jasmina for the duration of their stay, through the generosity of a transplant advocate named Linda Rumble.

If you want to send them a Christmas card, or a birthday card for Sébastien (December 12th!) their new address is:

40 Gerrard Street East, Apt. 702
Toronto, ON M5B 2E8

Upon arrival in Toronto, Sébastien was admitted for treatment of his blood infection. Jasmina quickly learned how to administer the medication and now doesn’t hesitate to wake up at 3 o’clock in the morning to administer it to the sleepy boy, who was dressed as Tigger for Halloween, by the way. He is now discharged and enjoys driving his bicycle around the apartment.

Little Finton who passed away while David, Jasmina and Sébastien were in Winnipeg, had his funeral October 31st. The father, later meeting Jasmina hugged her saying: “Hold your son close because you never know how long you have them.”

UPDATE: Jasmina would especially like to thank Gina from the Liver Foundation and all the people that donated furniture  or helped David and Jasmina move to their new apartment. Many, many thanks!

Passing the prayers on…

A classmate of David’s from St. Malo, has become a close family friend since Sébastien’s birth and has helped David and Jasmina during the ups and downs of Sébastien’s adventure. Her name is Roxanne. She too has a little boy, named Riley who is four. Last week, David, Jasmina and Sébastien received tickets to a Moose Game but as Sébastien’s sepsis made him more irritable, they decided to give the tickets to Roxanne. As you’ll see, the outcome was a lovely surprise:

Tell them…”I’ll pray for them….”

Amazing words that struck me.

I thought tonight would be one of those nights… you know, do the laundry, tidy the house and get ready for the weekend. I knew Dave and Jasmina would be getting ready to leave next week to return to Toronto with Sébastien to get ready for the next step of Sébastien’s journey. I wanted them to come over again before they left since I wasn’t sure when we’d see them again. I checked my phone and saw that Dave had tried to call. I called back. After spending the whole day in the hospital, Dave, Jasmina and especially Sébastien were exhausted. Sébastien had a sore belly and a headache Jasmina explained. “Sébastien, do you have a headache?” she asked. “Yep” Sébastien answered. Dave explained that they had been offered tickets to the Manitoba Moose game for tonight. Drew MacIntyre, the goalie from the Moose had graciously bought tickets for kids from Children’s Hospital here in Winnipeg and that after the game, we would get a chance to meet him. Of course we’ll go I said and so we stopped by and picked up the information and gave our hugs and away we went.

Riley, my son was so excited. He kept saying that he was going to see on Hockey Night in Canada. “Sort of.” I explained. I called up a good friend of mine, Myranda to see if she wanted to bring her son Carter and accompany me to the hockey game. It just so happened that it was Carter’s birthday.

Riley and I grabbed a few things and raced to the MTS Centre just in time to see the first puck drop. A goal here and a goal there and all of a sudden the game was over and the Moose had won the game. Both 4 year old boys could barely hold their little Moose flags up in the air. Both dragged their flags up to the Guest Services booth where we were met by Kelly McArthur. Kelly is the Director of Community Partnerships & Manitoba Moose Yearling Foundation. She explained that part of Drew’s wish was to get the kids to the games but also meet the kids that he was inviting. She told our boys just how lucky they were to be going past the doors we were going through. “Not too many people get to come back here boys” she said. Along our journey to the locker room, Kelly and I discussed Sébastien and how I had ended up representing the family at tonight’s game.

We stood on a platform in front of two big doors with a Manitoba Moose decal. A few moments later, a player walked out. It was Drew. He was still glowing from winning the game. I explained the victorious journey Sébastien had made so far and where his next steps would take him and his family. My son presented him with one of the Hope for Sébastien T-Shirts. Jasmina had wanted so much that we offer him this gift to thank him for the wonderful gift he was making not only to Sébastien but for all future kids from the Children’s Hospital. He thanked us for the t-shirt. Then to all our surprise, he took my son’s hand and his friend’s hand and walked them into the Moose locker room. My girlfriend and I could only look at each other as we waited for our boys to come back out with grins from ear to ear. Out came the boys with a poster. After a brief autograph on both the posters and the flags, we thanked him and shook hands. He briefly looked back at his T-shirt with Sébastien’s picture on the front. “Tell them I’ll pray for them.” He said. Here I was holding my son by the hand standing in front of a man who had just played an amazing hockey game who was taking the time to meet with us. Tears filled the corner of my eyes. I wish Sébastien could have been there. I could feel Jasmina with me and I could feel her say the words that came out of my mouth…. “thank you, I’ll pass that on.” Away he went. As we turned to go, Riley spotted the two Zambonies parked about 50 feet away from us. Being a Zamboni fanatic, he begged me to go closer. Kelly advised that this would be OK but we needed to stand back since the operators were not near the machines. Then out of the sidelines came one of the operators. After a brief introduction, he offered to back up the Zamboni for us to take pictures. Back it came and then the kids got to sit on it. “Hey moms, can I take them out for a ride?” asked the operator. With two sets of pleading eyes, there was not way we could say no.

Off they went each their turns for a spin around the ice rink on a Zamboni, honking the horn and dumping the snow upon returning the monstrous machine to its parking spot. As I took a short video with my camera, tears streamed down my checks. In the span of a minute, I saw a million images flash before me; how did I get here, right now… I saw Sébastien in intensive care, clinging to life over a year ago as we sang lullabies through the night, having a Thai dinner in Sébastien’s hospital room at Children’s, the call I got from Dave the day they got the call for the life saving transplant, the day Riley stepped on a jumbo jet for the first time to fly to Toronto to see his friend Sébastien for the first time after the transplant, the friendship made with Jasmina and Dave and a friend my son made to Sébastien who he still thinks is an angel, and here I was tonight.

I had received the gift of my 4 year old’s smile that I could not have created without the tremendous generosity of Dave and Jasmina. Without the tremendous generosity of perfect strangers, Drew and Kelly and the MB Moose. How can I ever thank all the people involved in this short video of happiness I was taping at this moment….?

As I drove home, it was nearly 11 p.m. As we stopped at a red light, I look in my rear view mirror. Riley mumbles, “That man Drew was sooooo nice, Maman.” then says, “We’ll have to give hugs to Sébastien…”. His little head slowly rolls to one side and he’s fast asleep. How can I thank everyone for making my son so happy? My mind wanders to the short phrase Drew said when we parted. “Tell them, I’ll pray for them. “Dear God”, I whispered as I started driving, “tonight, I pray for everyone who made us so happy and that one day I can repay the gift.”