This is an article written by the daddy of a little girl who has SMA.  I know him through the SMA Support chat group I belong to. 

DON'T GRIEVE FOR ME UNTIL I'M GONE 

Almost all of us go through our daily lives thinking or 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, did you hear about so and so their child has.........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 is too horrific a place to go to. Well I have the unfortunate luck to have become a parent of a child with a recently diagnosed terminal disorder. I won't get to 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 (http://www.smasupport.com/, www.fsma.org/canada) . The prognosis is a 30% chance of living past 1 and a 15% chance of living past 2 and after that it is any ones guess but most of these kids die very, very, young.
What is it like to look into a beautiful 2 year 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 start 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 Hashem 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. 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 camaraderie with those that have lost children. Not much has to be said when you meet up with these people as this type of knowledge and 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, doesn'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 that have passed that touched your life in both positive and 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 Hasidic Sefer (from a book titled Wrestling With The Angel Published by Schoken) recently 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 and my 4 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 that are living with the diagnosis of loosing a loved one. Don't be afraid as you can't catch what you already have; but being with us in this journey holds up a mirror where you too must face your mortality. Lend a hand to those going through this 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 Rabbi Tennenhause to thank him for taking food to my 90 year old great aunt in Hollywood Florida after the latest hurricane. The Rabbi informed me that in Judaism there is a saying that goes," May you always be on the giving end." To be on the giving end is a mitzvah. Baruch Hashem