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Feb. 24, 2006
Life lessons from a beautiful baby
Don't be afraid to reach out to friends facing the death of a
loved one, they need you.
BRAD FISHER
Almost all of us go through our daily lives thinking or experiencing
death from a distance. We talk with our friends about this person
who is ill or those people who were unfortunate to have recently
lost someone close to them – did you hear about so and so;
their child had ... and on and on.
Rarely do we look into our own child's eyes and think about what
we would do or how we would feel if they were to die instantly or
from some terminal illness. When we do, we can't think about it
for long, because it's too horrific a place to go to.
I have the unfortunate luck to have become a parent of a child with
a recently diagnosed terminal disorder. I won't get too descriptive
about the disorder because what I really want to talk about is grief,
living, dying and death. My beautiful daughter Shira has SMA or
spinal muscular atrophy type 1. The prognosis is a 30 per cent chance
of living past the age of one and a 15 per cent chance of living
past two. After that, it's anyone's guess, but most of these kids
die very, very, young.
What is it like to look into a beautiful eight-month-old baby girl's
eyes that are gleaming with past, future and present and know that
her time on Earth is going to be short? Devastating, catastrophic,
horrific, apocalyptic are not strong enough words to describe my
breaking heart. When your own flesh and blood starts heading down
that long, lonely road to eternity, you feel like your soul is being
ever so gently jolted from your body.
The world has taken on an entirely new dimension for me. All I want
to do is spend every last second with my daughter – loving
her, holding her, memorizing her smell, her stare, her caress. There
are moments when I cry uncontrollably. There are moments when I
look towards heaven and thank God for giving me this child and the
chance to love her. As I sit in her bedroom and watch her sleep
with the equipment humming in the background, the breathing apparatus
strapped to her face, the oxymeter displaying her oxygen levels
and heart rate, I have to pinch myself and ask, "What am I
doing here? I didn't ask for this job!"
I now feel the wind, rain and sunshine like it was the first time.
I pray more. I listen more intently. I judge less. I cry more. I
feel helpless and small a lot of the time. I often feel like I can't
relate to people the way I used to. We all know there was a tsunami
in Asia and saw thousands upon thousands of people from all walks
of life suffer greatly, but we can never feel what they feel unless
we experience what they have experienced. This is how I feel, like
I'm in a distant land among strangers, even though I know friends
and family care for me deeply. There is a camaraderie with those
that have lost children. Not much has to be said when you meet up
with these people. Knowing travels easily between grieving souls
with a glance or a hug.
Do I grieve? Yes. Do I think about my baby girl's imminent death?
Yes. When you look for information about dealing with death from
a pre-death perspective, all you can find are books on dealing with
grief after loss. But how do we deal with death as we go through
the process? What do we tell friends? What do we want from our friends?
Who should we tell? How should we tell them? What role does everyone
in my life have in this horrible experience?
I recently began a heartfelt and enthusiastic journey back into
Judaism. Through my religion and my religious community, I have
come back to a centre – a place where I view death as a process
that gives life meaning. I no longer avoid death or look at it so
negatively. In fact, now I embrace death as I do life. After all,
don't life and death walk hand in hand? To not think of death daily
is like not thinking about life daily, which most of us are to busy
to do. I know more than ever that this journey called life is short.
Whether a life is 83 years or 18 months, compared to recorded history
or eternity, it is short.
Shira has taught me that life must be lived with purpose, or it
is wasted. When we live our life with purpose, then death is only
the end of our physical life. Just think about those who have passed
who touched your life in positive or even negative ways. These souls
are still touching you with memories, because I trust that memories
are soul. I have come to really understand and believe that what
we take from this world is based on what we leave in it.
I feel so lonely and sad when I think of my daughter leaving me.
I read some beautiful words taken from a Chassidic sefer
(book) titled Wrestling with the Angel that gave me comfort, peace
and hope:
"How will we recognize those we loved when we meet them after
120 years in the world to come?" it said. "If they died
young, will they have grown old? If they were hurt or wounded, will
they have healed? How will we know them, how will they know us if
we have changed or aged? The answer is that we will know them, we
will recognize them – because they will be clothed and cloaked
in the mitzvahs we do in their name."
My daughter's death and funeral do cross my mind, though I try to
cherish each moment, hour and day with her. I have talked about
the ritual ceremony with all of my rabbis: how much it costs, how
soon it takes place after she dies where the plot is. This, too,
is a gut-wrenching experience. Now I travel the long, lonely road
carrying my daughter towards her imminent death, holding hands with
my wife and my three-and-a-half-year-old son.
If there is any advice I can give to onlookers who care, it is to
reach out to people who are living with the diagnosis of losing
a loved one. Don't be afraid – you can't catch what you already
have, which is mortality, but being with us in this journey holds
up a mirror where you, too, must face it. Lend a hand to those going
through a difficult time. Listen, take them food and just be there
to go through the experience with them.
Recently, I spoke with a relative of my wife's rabbi to thank him
for taking food to my 90-year-old great aunt in Hollywood, Fla.,
after the latest hurricane. The rabbi informed me that in Judaism,
there is a saying: "May you always be on the giving end."
To be on the giving end is a mitzvah. Baruch Hashem.
Brad Fisher is a realtor who lives in Victoria. He is
the husband of Maxine Fisher and the father of Sam and Shira Fisher.
He can be reached at [email protected].
For more information about SMA, visit www.smasupport.com
or www.fsma.org/canada.
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