Trying not to think of how much we’ll miss you!

Jasmina forwarded a link with the request that I put it on the blog… The liver foundation is auctioning off various items on e-bay in the hopes of raising awareness and collecting funds for pediatric liver disease research. Check it out!

We try not to think of Sébastien’s upcoming return to Toronto… every visit with him flies by. He makes us laugh with his gestures and his smile lights up the room wherever we go. Strangers can’t help but smile back. He is such a tender boy… he’ll lay his head on you when you hold him, he’ll blow kisses when it’s time to say goodbye, he’ll tell you how much he loves his parents by spreading his arms far apart… We try not to think how much we’ll miss him.

Last week he had a skin biopsy for a strange rash that has appeared in big and small red circles, like rings. While awaiting the results, David and Jasmina aren’t too concerned, and life continues for them with its visits and home-made meals. The return to Toronto is planned for October 30th… apparently trick-or-treating there is better.

Blessed under the stars with the gift of life

A note from Jasmina reminds me my favorite assignment as updater-of-the-blog…

Hello Jacinta,

Hope you are having a wonderful day…. Sébastien is doing amazing…. he is just blooming with sooo many new things he does etc….. hope your visit with P. Michel is great and with P. Samuel…. please say hi to them for us…….

Would you please do me a favor…. would you be able to put on the web site the invitation for the celebration on August 11th…. that would be great….

‘Tis true, all this visiting has gotten almost out of hand, as my pile of ironing can attest. In fact, I’m almost begging for one early evening that resembles a bit more our normal routine… that is, the ironing board in front of the t.v. downstairs for the duration of shirts, skirts and pants to be ironed – once a week. Not that I don’t love our extended-family evenings, with their scrumptious diners, three-desert menus, and promise of evenings of laughter, but I’ve noticed the flowers need tending, and my closet is more hangers than clothes. In case my elaborate excuse doesn’t interest you, some details of Sébastien’s upcoming party should…

All readers of the blog who are eager to visit Toronto are warmly invited to attend Sébastien’s Celebration of Life party, August 11th, commemorating one year since his liver and bowel transplant at SickKids. It even has a theme: Blessed under the stars with the gift of life (hence the star bedecked cupcake). It’s not a little party… no, no, they’re going all out! And Jasmina, creative as she always is, is decorating with butterflies, fish, stars… as colorful as you can imagine. The event will go something like this:

Between 11:30 a.m. and 1:00 p.m. Dora will come by for a visit. They’ll be a show, crafts and a treasure hunt for the kids. In the afternoon on the Garden Patio, there will be a Mass celebrated by Fr. Peter at 3:00 p.m. in remembrance of the donor and the donor’s family and in thanksgiving. They’ll also be a balloon ceremony… people can purchase balloons with all proceeds going to 6A. Jasmina hopes to raise $250.00 for a stroller for the ward… allowing families who don’t have a stroller for their child to borrow the ward’s instead. Later, the balloons will be released. During a buffet style diner, Linda Rumble will speak about organ donation.

I hope I didn’t miss anything. For those who can’t attend… they’ll be taking video clips during the day, and we’ll be able to post a new video on YouTube. Send them your best wishes in the comments below!

Odds and ends

Nathalie e-mailed me the outcome of the fundraiser she helped organize in Toronto:

The fundraiser was a success!  The first part of the fundaiser was a train-o-thon.  Heritage Martial Arts of Cambridge, Ontario, organised the event.  For 12 hours, some of their members trained for Sebastien’s cause, getting pledges from family and friends to support them in their training.  This event raised $7,730 alone. 

The second part of the fundraiser was a call to all family and friends of Sebastien and his parents.  Sebastien’s story touched a lot of people and we had an amazing response.  $5,970 was raised this way!

We would like to thank everyone who passed on the word, sent a donation and prayed for this incredible little guy.  $13,700 was raised through this and we want to thank you all for your generosity.  The tax receipts will be mailed shortly.

Sincerely,

Mike, Nathalie and Jacob

A special thanks to those who have been donating via PayPal! Sébastien has his own bank account, and the money is directly deposited there. I wish we could express the gratitude we feel… 

On another note, a journalist for the Globe and Mail has a blog aptly called The Mother Lode and in it describes the many ups and downs faced when one has a newborn at Toronto Sick Kids. A small quote seemed particularly fitting and I wonder if perhaps she hasn’t met Jasmina and David…

It’s amazing that so many parents here at Sick Kids do embrace hope each time they see a bit of light. Even though they know that they’ve crashed to earth so many times before. Maybe it’s guarded hope, but if there is any chance that things will improve, most of us get euphoric ­ even if it means plummeting, literally hours later.

Fundraiser update

A friend and I met on Sunday and I asked her how the fundraiser went:
“It went really well. Dominique and Jacqueline (David’s brother and sister) were there and alot was donated.”
“Really!”
“Yes! Labatt’s donated the beer, someone else donated the potatoes and someone else the steak. And it was really good… The steak was done to perfection, the marinade was perfect and the potatoe was the size of my purse!”
I laughed, almost hungry at the thought of it.
“And there was coleslaw.”
“Were there alot of people?”
“Yes! It was pretty full” and she described how it was hard to move about.
“Were there lots of prizes?”
“Twenty – and good prizes too… all kinds”

Later, Roxanne filled me in on the specifics by e-mail:

It was great!!  I was told that they raised over $7000.  I don’t know the exact number but the generosity was enormous from donors who donated prizes and friends and family who bought many tickets for the silent auction, 50/50 and there was even one auction that was to go on for another week after the event.  The food was very delicious and the atmosphere was very happy and looking forward for Dave, Jasmina and Sébastien to come home.

Bravo to the Class of ‘93 for having done such a wonderful job! God bless your generosity!

An upcoming fundraiser

Special thanks to David’s extraordinary classmates for the organization of a fundraiser for Sébastien in Manitoba. Here is the letter for your information:

May 21^st, 2007  Dear Friends,  Re:  Bud, Spud, & Steak Fundraiser for Sébastien Forest  We are writing this letter on behalf of the Class of ‘93. As you may be aware, one of our fellow graduates, David and his wife Jasmina have a 2 ½ year old son named Sébastien who has undergone several medical procedures in the last few years. As most of you know,  this little miracle continues to improve against all odds. For those of you who don’t, we would like to bring you up to date.  Sébastien was born December 12^th, 2004 with a condition known as gastroschisis.  An operation soon after his birth left him with Short Bowel Syndrome.  As Sébastien could not digest anything his body depended entirely on Total Parenteral Nutrition (TPN).  His liver began to suffer from the constant strain of the TPN and his only hope was a bowel and liver transplant.  His parent’s wish came true when in August of 2006 Sébastien was flown to Toronto for the double transplant.  He is currently recovering at Toronto SickKids
Hospital. His reality is definitely different than ours since it is good news for a tube to be removed from his nose only to have one going directly into his stomach.  The prospect of becoming outpatients is exciting for the family, but poses a monumental challenge.  The estimated cost for specialized medical equipment, physiotherapy, speech therapy, occupational therapy, respite care and medicine vital to Sébastien’s survival is approximately $15,000/month. As an out of province patient, these costs are not covered. To cope with this financial burden, the family has so far successfully relied on previous fundraiser donations. I believe you will agree with us that there is a call going out to each one of us to give generously.  It is because of this reason that on June 2^nd, 2007, we, the Class of ’93, in association with Lucky Luc’s Bar & Grill (St. Pierre Hotel) will be hosting a “Bud, Spud, & Steak” fundraiser dinner and silent auction in honor of Sébastien. Please see attached poster for details regarding the fundraiser.  For more information, to purchase tickets, or if you wish to obtain prizes for the silent auction please contact any one of your fellow classmates: 
Luc or Corinne @ 433.7425 
Stacey @ 347.5298 
Tania @ 347.5962 
Josée @ 433.7004
Dan Preteau @ 347.5290 Tickets for the “Bud, Spud and Steak” are available at the St-Pierre Hotel. If you are unable to attend the dinner, please feel free to check out the Silent Auction and 50/50 at any time during the evening. Hope to see you there!

A fundraiser for Sébastien that offers tax receipts

Michael and his wife Nathalie, cousin to David, have organised a fundraiser for Sébastien and offer the possibility of sending a tax receipt to those who donate. Their letter eloquently expresses the purpose of the fundraiser:

Dear Friends, 

I am writing this letter on behalf of the Hope for Sébastien fundraising committee. As most of you know, our little miracle continues to improve against all odds. For those of you who don’t, I would like to bring you up to date.  

2007 has been kind to the Forest’s. Sébastien has recovered from emergency surgery in January. At this point you wouldn’t even recognize him. He has begun eating! His NG Tube has been removed from his nose, replaced with a G Tube directly in his stomach. There is a new vitality in everything he does. It has even been confirmed that a projected date of three weeks from now has been set for Sebastien to become an outpatient.

Outside of the hospital room life goes on. For every family there is still a life to maintain so that when Sebastien gets better there will be a home waiting for him. The David Foster Foundation has helped tremendously in this respect, providing some of the basic living costs so that the family can focus on their most important charge: caring for their sick baby. 

The prospect of becoming outpatients is exciting for the family, but poses a monumental challenge. The estimated costs for specialized medical equipment, physiotherapy, speech therapy, occupational therapy, respite care and medicine vital to Sebastien’s survival will be $15,000 per month. As out of province patients, these costs are not covered. To cope with this financial burden, the Forest’s have so far successfully relied on previous fundraiser donations. I believe you will agree with me that there is a call going out to each one of us to step up and give generously.

As a father of a 17 month old son myself, when my wife and I visit this family at Sick Kids, we can only imagine what it would be like to have the tables turned and they were coming to visit us. In those moments, I can only say that how this family will keep going financially should be the furthest thought from their minds.  

On behalf of David, Jasmina, and Sébastien Forest, we would like to thank you in advance for your continued prayers and support, believing that God will bring His full and perfect healing to His son Sebastien.    

Faithfully yours,
Michael Smele

Nathalie writes in her e-mail:

If you feel called to help Sebastien and his parents with a financial donation, please write a cheque payable to: “North Bramalea United Church” with the words “Sebastien Forest” in the memo section. We have set up a one time event where tax receipts will be issued so please give generously.

Please mail your donation including your return home address on the envelope for tax purposes. Mail all donations BEFORE MAY 1st to: 

Hope for Sebastien fundraiser 
49 Nickel Crescent
Brampton, ON  L6S 4V6

Walks and l’Arche

It’s a cold day in Winnipeg. Apparently, in Toronto it’s not much better. It was warmer some time ago, when I was talking with Jasmina. She was happy to relate that the snow was gone, long before ours was melted. It’s good for Sébastien… he gets to enjoy walks outside. Jasmina wants to bring him to the Toronto Zoo, “it’s important for him to be stimulated” she explained.

One thing that has always been close to Jasmina’s heart is l’Arche. “I think it was a blessing that you worked with l’Arche before having Sébastien…” I had commented, “It helped you to have alot of patience!” Jasmina readily agreed and the conversation moved on to books we’d read about l’Arche and Jean Vanier. Sometime later, I received an invitation by e-mail to join l’Arche’s annual walk on May 6th. Anyone want to join us?

The importance of talking

“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.

Radiothon stories

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”

Events and miscellany

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!