I was responding to a posting on another list regarding some specifics about one of the 'make-a-wish' programs, and I thought that this might be of interest here...

Hello B. (and listmates),

I have to confess that I experience considerable discomfort related to any enterprise that requires us to define our kids as dying, or predicted-to-die, or almost-dead, or already-dead in order to have wishes granted. I know that some of the 'wish' programs have recognized this issue and have modified their language and approach accordingly, but not all have done so, as indicated in some of the posts on this thread (in this context, the term 'life-threatening' carries the same meaning).

Why do I think this is an issue? Because there are already too many incentives in our society to define our kids (and our elders, and eventually ourselves) in this way. Because, in my view, this definition has considerable power to distort family and caregiver relationships, personal interactions, expectations, and opportunities. And especially because this definition opens the door to actions and inactions that are life-shortening - premature removal of life-sustaining supports, DNR designations, failure to initiate normative life-saving measures (antibiotics for infections, etc.), and measures actively intended to end one's life.

I don't want to open up the whole DNR/euthanasia issue here, but I do want to point out that applying the designation of 'terminal' does have major implications and can involve considerable danger. It's not something to be taken (or given) lightly, especially with the objective of obtaining a 'wish' - however pleasant, meaningful, or personally significant.

Does this mean that we ignore or deny the reality that some of us might not be here very long? Not at all (so please don't flame me about being 'unrealistic').

Does this mean that we shouldn't be listening to, deeply attending to, and granting wishes? Not at all! Matt should absolutely have his fish-tank. Amber should absolutely travel to the taping of Anne Murray's Christmas Special. Charlie should absolutely have a chance to meet the baseball player he admires. But Matt, and Amber, and Charlie shouldn't have to be defined as dying in order to have these wishes (or their parents' wishes for them) granted.

There's actually a remarkable opportunity that hides 'inside' this question...

Our deepest wish for our kids - the real wish that underlies all of the other 'wishes' - is that our kids be loved, and honoured, and closely held. We wish that they will live in companionship and friendship. We hope that their wishes, and our wishes for them, will be heard and understood and honoured. We wish for 'regular lives'. We wish that our children's gifts will be sought, and seen, and cherished by the whole community. Seen creatively, the wish for Matt's fish-tank is an opportunity to move gently in exactly this direction of companionship, community and contribution.

How might this happen? Let's create the story we want to experience: After a little detective work, Matt's mom finds a group of people in the community who really love raising, trading and talking about tropical fish. Maybe somebody in Matt's family's church is part of such a group, or knows someone who belongs to such a group. Maybe she finds it in the phone book, or the community Leisure Guide...

Mom and the church partner visit the group and say, "We want to tell you about Matt. We've discovered that he really loves tropical fish! He's fascinated by their colours, their movement, and his ability to help with feeding them - we built a switch that triggers a little feeding machine that we put on the tank. Matt is just starting out. He just has a little tank with a few Betas, but we know that he'd love to expand on this interest. Can we figure out a way for him to become part of your club and to learn from other members how to expand his collection and take care of new kinds of fish? We'd also like to figure out a way for him (or for our family) to contribute to the work of your club."

Maybe somebody from the club ends up 'partnering' with Matt to help him grow his collection. Maybe mom starts up the club e-mail list on Yahoo. Believe me, when Matt needs a bigger fish-tank, it will be there for him - club members are always getting bigger tanks (movin' on up') and letting go of smaller ones (it's like boats).

All of this can happen even if Matt can't talk - he can't speak his wish, but we know... we know..., even if Matt is years younger than anybody else in the club, even if... even if...

Part of the detective work might involve finding a sub-set that's interesting enough to have a particularly passionate following (raising incandescent fish, who knows?). Remember that Matt's shared interest in that passion is his ticket to connection.

Think about the difference in outcomes:

A fish-tank from the 'wish foundation' (even if we don't have to invoke 'dying' to make it happen) generates a fish-tank. Colours, movement, feeding the fish, maybe even a nice visit. But the 'wish foundation' people move on to the next eligible recipient.

A connection with the local Incandescent Fish Fans Club (even if you have to start out by buying a little tank and a couple of incandescent fish) has the potential to generate an enduring connection with people who see Matt as one of us! Possibly a great connection with a young mentor, or an older expert. Certainly opportunities to contribute and to be seen (understood, interpreted, valued) as contributing.

Safe. Engaged. Loved. Loving. That's what we're really wishing for. The incandescent fish are just a way of beginning the conversation.

Last week, we discovered that Amber loves live jazz. We went to a tiny concert in town, and she turned on like a Christmas tree! We can go to more jazz concerts - a delightful activity - but we can also get involved with the small, interested group that makes the concerts happen. The organizers and the players were enchanted by her interest - she can't applaud, but she was blowing kisses to the combo, smiling, straightening out one arm, and occasionally saying 'yeah' at just the right times.

This morning we talked about doing something like 'Jazz on the Beach' before winter starts coming in. Just a small event that might bring people in our neighbourhood together. We'll start by talking to one neighbour who we know loves jazz, and we'll get back to the woman from the concert who gave us a list of the next several events. It takes work, and a little bit of courage, and we can't predict (or force) the outcome, but it could be a fruitful direction.

Peace, and good fishing!

Warm regards and always respect,

David