Dear Maria,
I don’t know if this is about working systemically what I am saying here.
This is immensely painful of course. I knew two such girls with a short
life expectancy in my childhood. One girl knew it clearly and lived day by
day with increasing disability of the body, and she even lived till she was
twenty. She knew her life would be short in all likelihood, the crippling
progressed steadily. Her family, including siblings, could accept it. They
had learned to live with death looking around the corner, and even with the
increasing degree of discomfort of her daughter.
My brother used to work with disabled children with a limited life
expectation. I was amazed how well he related to them with warm humour,
treating them like any other children, too. They loved him.
Is this child in contact with other children in wheelchairs?
The other child in my extended family could not crawl or walk because she
had glass bones. These parents were inconsolable. They had no other child
and were too frightened to have more. Such a fate is eased in a larger
family of more children and also generations.
Bert says in such situations that fate wants to accepted. All the forms of
struggle against this need to happen, too. Acceptance comes more easily
when all forms of wrestling with death have been tried and exhausted. We
want to wrestle with fate, with God, even.
Bert describes most touchingly a reverse situation where a boy cannot face
the fact that his father is dying. He guides the boy through many feelings,
and even through his rage against death. The resolution comes after that.
The boy realizes that he cannot really lose his father, and the father will
not ever lose him. He promises his father to do something with his life.
And eventually, he will join him, but only then.
One thing we do not have to fight for is the bond of love. These “early
accomplished” -as Bert’s beloved poet Rilke calls them - children are often
quite wise and strong. Sometimes they also see departed family members.
Bert makes it clear that a short life does not mean, this person misses out
on life. We all come and go. And on the other side, life continues in
another form anyway.
An angel of transition might be a much nicer companion for such a child
than a grim reaper. But if the parents and other close people can work
through their feelings, even their rage, acceptance becomes a friend
eventually. Then every day can be a blessing.
Acceptance will oscillate with non-acceptance. Once acceptance gains the
upper hand it will be much easier. If the parents can tell their little
girl, that she will always be their lovely child, here or there, and that
they will always be her loving parents, grandparents and whatever other
relatives…then some degree of strain can ease. The parents may of course
also embrace the concept of reincarnation. So it might just be an early
farewell until one meets again. And then there are the family members who
are presently on the other side.
I had quite a number of constellations where parents had lost one or even
two children at a young age. In one constellation all four children of a
family were placed, and the two who were born last and who were alive each
went to one of the dead children and said very clearly, looking to their
parents: This is me!
The same happened to a friend of mine, When he was a boy, he was asked to
stay over with an auntie. She had lost her son, but my friend did not know
that. She made up a bed for him in the room that was her son’s. My friend
saw a photo of this other boy hanging on the wall, and instantly called
out: What, this is me on this picture!
So if people are inclined that way, they can tell the child and themselves
that they will be together again.
If there will be younger siblings later on, it is important to make sure
this new child is not automatically assumed to be the other child, but is
accepted as a new person in the family. otherwise this child may have
problems with his or her identity. Only the child itself has the right to
make that claim.
What matters most of all is that death does not have the power of cutting
through belonging. With such a young child it might be nice to talk about
the other side in terms that a child understands. And perhaps the parents
can learn to be more open, so when the time comes, they may be able to
sense their child around them.
It is important also that the child can express her feelings at any time,
and not feel isolated. She might also have her struggles with her fate.
Then the family can join her and go through it together, until solace
comes. There are many lovely books about such situations.
We naturally struggle with the fact that someone one or two generations
younger should be taken to the other side first. And this illness is a
stern reminder of this.
The rest of the family can at times also tell her how they feel but only after
they expressed their feelings to each other and found some balancing
emotion. Then there needs to be the sensitivity when to speak about it and
when to enjoy what the day brings.
Such a fate is a tough discipline.
With love from a grandmother, Angelika
On Wed, Oct 2, 2013 at 3:37 PM, Maria Dolenc <mariadolenc@xxxxxxxxxxxxxxx>wrote:
**
Dear Constellation Community.
I'm wondering if any of you have had any experience with Battens disease
(CNL2). I have a client whose 4 year old Granddaughter was diagnosed with
this disease a year ago and is already in a wheelchair. Battens disease
is a rare degenerative disease which means that the child could die
before she reaches 8 years old.
I would greatly appreciate any suggestions or insights that may help me to
work with my client systemically
Many thanks
Cheers Maria
Maria Dolenc
0425 277 279
mariadolenc@xxxxxxxxxxxxxxx
www.mariadolenc.com.au
