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Death Is No Longer a Stranger

Death Is No Longer a Stranger

My one-year-old daughter was recently diagnosed with a terminal genetic disorder.

by

Most of us go through our daily lives experiencing death from a distance. We talk with our friends about this person that is ill or those people that were unfortunate to have recently lost someone close to them. 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 is just too horrific.

Well I 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 (www.smasupport.com, www.fsma.org/canada). The prognosis is a 30% chance of living past one year and a 15% chance of living past two, and after that it is 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 knowing 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 own soul is being slowly dragged from your body.

There are moments when I cry uncontrollably; there are moments when I look toward heaven and thank God for giving me this child and the chance to love her.

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 toward 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!"

Now I 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.

That 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 special camaraderie with those that have lost children. Not much has to be said when you meet up with these people; this type of knowledge easily travels between grieving souls with a glance or a hug.

Do I grieve? Yes. Do I think about my baby girl's imminent death? Yes. There are many books about death that deal 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?

Through Judaism I have come to a place where I view death as a process that gives life meaning.

I recently began a heartfelt and enthusiastic journey back into Judaism. Through my religion and my religious community I have come back to a center, 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, doesn't life and death walk hand in hand? Not thinking of death daily is like not thinking about life daily -- which most of us are too busy to do.

Whether a life is 83 years or 18 months -- compared to eternity, life 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. I have come to 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 recently read some beautiful words from a book Wrestling With The Angel (Schoken Publishers) 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? 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 does 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 rabbi's -- how much it costs, how fast it takes place after she dies, where the plot is etc. 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, Maxine, and our three-year-old son Sam.

If there is any advice I can give to onlookers who care, it is to reach out to people that are living with the diagnosis of losing a loved one. Don't be afraid, but being with us during this journey holds up a mirror where you too must face your mortality. Lend a hand to those going through this difficult time; listen, bring them food and just be there to go through the experience with them.

Published: August 5, 2006


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Visitor Comments: 43

(43) manuel sand, January 30, 2012 1:31 PM

how beautifully you express your innermost feelings

Acknowledging the unchangeable facts one faces no matter how painful and being able to put it into words is a rare talent.Your words leave nothing to the imagination, we feel your feelings, and understand your pain. May Hashem give you the strength needed to face it all.

(42) Harriet, August 17, 2011 6:47 PM

I lost my daughter

My daughter had cancer and I beleived she would survive, even up to the last few days in the ICU. I thought miracles happen. No one asks to join that"club" of parents who have lost a child, but unfortuneately it is only those of us who have that could possibly understand the pain. The soul survives. Energy cannot be destroyed. Rabbi Schnerson had said that our bodies do not belong to us but to Hashem who has given us this vehicile to carry our souls through this lifetime. May you find strenght.

(41) lynn, August 16, 2011 3:21 PM

a beautiful little girl

May Hashem help you through the grief and at the same time still enjoy every minute you have with her. She is surely a higher level neshama that is reaching its perfection.

(40) , August 15, 2010 6:01 PM

But aren't you the person whose daughter celebrated her 4th birthday in 2009? She ought to be 5 by now! Aren't you the one who wrote very supportive almost daily notes to Simcha Esther (a"h) as she went through her difficult, but nevertheless uplifting final year? Thank you for y

(39) Anonymous, April 21, 2007 7:45 AM

Please keep us updated if anything happens. I have been saying psalms for Shira since I first read this article. God bless you all. :-)

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