Thank you 

I wish it had a rewind function too, i tell you I would have worn out that button by now 

Seems like it's always a battle between those two buttons. It shouldn't be.

Thank you for sharing that very personal video with us all, chansen.  I so appreciated knowing more of Carter's impact on the world through the words of all those who participated, especially from your wife and neighbours.  Thank you.

In the video when Jenn is giving her eulogy  I'm sure its my imagination but I am seeing Carter's smiling  face and blonde hair in the balloon directly behind Jenn. Its neat.

Chansen, i am sitting late at night, watching the funeral service.  Reflecting on life & death.

Today, my mother-in-law died.  Between the two of them, their ages add up to 100.  I know that my m-i-l would have given the last few years of her life up, if it could have meant that your ittle one could have lived longer.  

It is illogical to lose a child . There is no logic in it, it is wrong. As you indicated, it is wrong for you to be doing your son's eulogy.

Your and your wife, and friends tributes to Carter , inclding naming him as he was, were wonderful testaments to him and your family.

I thank Rev. Steven Davis for his gifts of service to you.

Thanks. After the awful funeral services in my family for my grandparents, I'm glad we ditched the idea of paying lip service to religion, spent a day writing our own eulogies, found the right person, and did it right. Years ago I wrote somewhere on WC about regretting not saying anything at my grandfather's funeral, and listening to some random minister fill time by waxing poetic about the grand church in my grandfather's hometown...which my grandfather never attended. I'll also never forget how he opened the graveside servive with, "Death changes people..."

We didn't let that happen again. We did this one right. Thanks again, Steven.

I am sorry to learn of Carter's death, and I am glad you were able to craft the service. We are all One, and what happens to one of us touches us all.  I have sat through some terrible funeral services, so, being a bit of a control freak, crafted a large part of my service 12 years ago that I keep in my planner.

for Pinga,

a meditation

cosmic revolutionaries ... I like that ... man is a bridge & not an end ... I like that too.  Thanks Inanna.

Good video Inanna.

Hi chansen.

I just wanted to let you know that you and your family remain in my thoughts these days.   I have been quietly lurking on this thread and truly wish I could offer something more meaningful.  Your willingness to share your journey has been a great gift.  I find my thoughts colliding as I sit here, and in the end, feel I can say little.  Most has been said by people who are far more eloquent.

As a parent of a medically complex child I thank you for your willingness to be so open with your story.  It is a difficult journey for most to understand and I feel that the world will better understand our lives because of what you have shared.

amen DaisyJane.

You and your family have my sincerest condolences chansen.  I have only just read your post ... about 16 days after Carter's passing.  Since the first onset of Carter's medical crisis I have associated him with energy, joy and indomitable spirit.  Judging by the six pages of posts that precede this one, I think that Carter's energy and spirit touched a lot of people's lives in addition to mine. I'm glad he was able to tarry a while with us to gift us with his positive energy and example. I am sorry he had to leave us so soon. 

Continuing in caring thoughts for you and your family, chansen . . . can't imagine the thoughts and emotions that fill your mind these days.

DaisyJane, thank you very, very much. No, not many people can understand the sort of life parents of brain injured children lead. I don't really resent that. I wish no one had to.

It took a while to get the motivation, but we're finding homes for some of Carter's equipment. We're doing our best to locate low income families and families who fall through the funding cracks. With privacy rules, it's more difficult than we imagined.

that's great chansen ... and fwiw I think you've not taken a while ... imo you're moving along quite rapidly.   I'm sure the equipment will be greatly appreciated by recipients. 

Hi chansen,

It hasn't even been two months since you told us of Carter's death.  Grief is allowed.  Moving quickly on decision making after a death is generally discouraged.  

I appreciate that time might feel like it is dragging for you.

It isn't a race.

I'll bet it is.

Still, I expect someone as creative as yourself could find ways around the privacy bureaucracy.  Sometimes trying to peek behind that wall is difficult and other times there are fok situated who can pass on to folk behind the wall something they might peek out at.

So, talking to one of the physioterrorists you have dealt with and sharing with them what you have in mind means that when they come across a suitable candidate they could pass along your contact information.

See it is a breach of privacy for them to give you client information but not for them to give a client yours.

Grace and peace to you.

John

That's exactly one of the avenues we are using, John.

Hi chansen,

See, I figured you were that creative.

I'd help you with the patience needed for this to bear fruit.

If I had the time

Grace and peace to you.

John

I agree with John. Letting the people who helped you know that you have this equipment will allow them to find suitable people. There are all kinds of rules, both silly and wise, that hamper this I'm sure. At the same time, these people help kids and will find a way.

This will no doubt be difficult for you on so many levels. You want to pass it on. At the same time, it will be a final good-bye to Carter. Don't rush. It will happen when it needs to happen.

Some people wait a year before they begin to do what you're doing now. Some wait longer. Some can never do it. We grieve in our own ways. And it really hasn't been that long, although I can appreciate how long it feels to you. I'm sitting in my office right now getting ready for a funeral tomorrow, and I realize that tomorrow's is the first funeral I'll be presiding at since Carter's. It does seem like a long time ago.

From everything people have said, Carter was a kid who loved life. I think he'd approve of making sure that you're helping those with need to live and love their own lives.

Carter's motivations were having fun and feeling up older women. Okay, okay, he was really good at sharing as well. But the best memories are of him doing things that we'd consider mischievous. Or misdemeanors.

Which is all a part of loving life, is it not. Although, while I love life, I try to avoid the part about feeling up older women.

I was told, however, that when I was Carter's age, my family used to take me to a local restaurant for dinner now and then. At 4, I loved pancakes and when we would go to the restaurant I would ask the waitress if I could have pancakes. And she would explain that they didn't make pancakes for dinner. At which point, so I'm told, I would bat my eyelashes and make goo-goo eyes at the waitress and just generally let loose my flirtatious personality, to which the waitress would invariably respond with "he's so cute!" Then she'd give me a hug, run to the kitchen and lo and behold I'd get pancakes for dinner. Whether I ever took advantage of the hug to - well - become even better acquainted with the waitress, I don't know. But that's what I've been told.

I've had to turn off that flirtatious personality as an adult. It would cause too much chaos in the church.

Hah, rev stephen, that is a good story.

Chansen, for my Dad it was good for him to slowly find homes for everything of my mom's. What some thought of as overly attentive was just good work.  He did it over months, a bag here, a bag there.  A trip to the local hospital charity site.

I recognize it isn't the same for you but just sharing that it is good to do things intentionally.   

My sense is with the equipment is you also want the therapists to ensure that the equipment is appropriate.

I am curious, do they have a "lending" equipment place.  I am betting there are other parents who truly do not need the concern of paying for equipment.  Would be awesome if there was a lending library that the staff could be aware of and recommend equipment from..

There is a warehouse of stuff in Niagara Region called For the Needy Not the Greedy. I'm not aware of an equivalent in Toronto, oddly, given its size.

But mostly, we fell through some funding cracks (made too much on our last tax return to qualify for some funding options, even though we had no current income) so we want to help some of those families out if we can. Low income families often have things paid for, but we just got in contact with one family who could use Carter's hospital bed for their daughter, so I'm arranging to drive it out toward the Lake Simcoe area.

You are making a difference in some family's life. 

that is awesome, chansen.

That's awesome, chansen. To add to what others are saying, I'm sure it'll be so appreciated by families in need. In a lot of areas, there are people finding themselves between funding cracks. Not poor enough to qualify for subsidized programs, but still can't afford the costs for things they really need. It's great you're able to help!

For me, it was grilled cheese sandwiches everywhere we went. I was really cute and they usually complied. And at one point, beer...now, don't get the wrong idea. But, when I was 3 or 4 some adult in my life let me try a little sip of beer, and I liked it. So, on one occassion with the family at a pizzeria, I blurted out, to everyone's dismay..."I want beer!" loud enough for the whole restaurant to hear. Don't worry, they didn't serve me. They got me onto rootbeer instead.

I think what you are doing is wonderful Chansen.

I remember years ago when my mother passed away, I was only 17 and it was the first major death in my life. I just wanted to keep busy and not think about it too much. I was very stoic and didn't cry and immediatelly began "mothering" my then 11 year old sister. I never thought to ask for anything as a keepsake, but I do recall hanging out in her closet frequently afterward just to smell her scent. I ended up asking for a sweater to treasure Even now whenever I smell "Tweed" perfume or something similar I instantly think of my Mom and her essence.

I'm just saying, you don't need a shrine, but keep what's important for you and your family. You'll be surprised how it will bring comfort for awhile.

My prayers are with you all still.

I hope that finding good homes for all your equipment continues to go well.

I hae been thinking of Claire and hoping that she is doing well.

In a very interesting twist, the family who wanted the bed now have a line on an electric hospital bed, which may or may not be free. Ours is manual crank to raise the head and feet. I can't believe I'm in competition to give expensive things away, with delivery. How do I sweeten the pot?

Build an electric motor that can crank the bed? After the basement and WC2, that would probably be a breeze .

Mendalla

Someone will need it at some point.

Chansen - there is someone else out there who will appreciate it.

Thumbs up to you for your generosity.

Oh, I know it will go. I'm just laughing that you try to give something away, and the family still has someone else on the other line with a better offer.

We have a line on the wheelchair now. A two-year-old boy with Down syndrome and struggling with seizures. Our cost on the wheelchair, which represents 25% of the value, was $2400. Neighbours raised funds and covered it.

Awesome that he can use it.  

Thinking of the waves of good that stream from your neighbours fund raising.  Yes, Carter used it.  Now another child will.  

That's our only stipulation - pay it forward. When this child is done with it, give it to another child.

Yep, still difficult to talk about...

good stipulation - I like it.  Yep ... difficult for sure.  Hugs to you and your fam. 

- thinking of you and your family and your broken hearts.

Hey Chansen,
Saying hi, sending a hug.

through in a new set of sheets . 

In case anyone sees this and is disturbed by it, Bloorview asked if Carter could be part of future campaigns, and we agreed. Their PR department still loves him so much. They were devastated by his passing. Their primary photographer thought Carter was so photogenic, that he took tons of pictures, mostly of that dimple on his right cheek.

Makes me smle - as I am sure you do too, Chansen?

Somebody who shared my DNA came out looking good, and is the face for a terrific cause, which is one way we can give back. I'm all for it.

Aww. That's great.:)

Awesome!

thanks for the heads-up as we will without a doubt recognize him.   And I can see why they would love to use his picture this way.  I hope it will be easy enough for you to come across it from time to time.  I'm sure will never be easy.

A beautiful face .