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
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
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
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
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,
© 2003 David and Faye Wetherow !