For Valerie Sobel, life imploded when doctors found that her 17-year old son Andre had a brain tumor.? He died one year later.? In trying to decide how best to memorialize Andre, Valerie thought about the financial resources that had enabled her to spend that final year with him.? Wanting others to have this same opportunity Valerie founded the Andre Sobel River of Life Foundation (www.andreriveroflife.org ).? The Foundation supports everything from food and shelter to ballet lessons for a patient?s sibling. ?We try to be sensitive to what government can never be expected to support,? notes Ms. Sobel.? ?Our society is only as humane as our treatment of those so diminished by crisis that they cannot speak for themselves.?
Valerie Sobel:? I am saying that we all have to learn to be respectful of how differently we all handle it, because it?s very very different to get a phone call that your child has died than the parent who stands by helplessly for sometimes a year or two or even more when you cannot do what a parent is designed to do, which is to help.
Valerie Sobel:? And protect your child.? Save the child and do all the things that you were born, mandated to do, but instead, become helpless, and I had probably for a period of three years, a nightmare about that which was very interesting, but that is one of the differences between you and I and how you handle the suddenness of having no chance to say good-bye as opposed to the helplessness of saying good-bye for a long time.?
Valerie Sobel:? When I did look at my experience, it really hit me like a ton of bricks that what I considered unquestionable is in fact a privilege and the moment I realized that, I knew that I can do a very authentic work in a field that I?ve experienced something that I never had to think about at the time.
Valerie Sobel:? It is an ongoing learning experience, but one of the first things that became very clear is that people mourn totally differently and what makes sense for one person to get through the night is something sometimes as diametrically different as I see mothers who sit on the child?s grave singing to them every day while I have not witnessed a funeral and I don?t know where my child is buried because he is right now probably with a twinkle in his eye laughing at how seriously we take ourselves.
Valerie Sobel:? What has become very clear, Gloria and Heidi, that it isn?t just moms.? Whoever is there at the time, whether it?s aunts, or whether it is other children in the family, we have had a 17-year-old dropping out of high school to take care of her 8-year-old brother, grandparents, widowers, uncles, grandparents.? It?s very interesting how this works, but the way it works is the river of life.?
Valerie Sobel:? We cannot change the outcome.? We cannot save children?s lives.? We cannot take a moment of grief from the mother.? What we can do is to allow them the dignity to maintain a roof over their head at the same time when they have to stop working to take care of that dying child.? When they have to try to go back to work in order to maintain the insurance that takes care of that child.? There are questions at such moment that there is no good answer for and therefore these choices that these parents have to make is truly an unfair act of the universe so all we have decided to do is to give financial help and to do it in 24 hours.
Valerie Sobel:? At The River of Life, Gloria, we have taken care of the mother as long as a year and a half after she lost her child because in the same month of the funeral, she developed a lump and she still had three other children, and so we have carried on with taking care of the child to taking care of her and we have had some amazing stories that no one could invent.? Only life could.?
Valerie Sobel:? While the need for volunteers was there from the very first moment, the ability to have a volunteer coordinator has just become our privilege.? To me, there is nothing stronger than the heart of a volunteer and they have to be honored by perfect coordination and by that I mean that when you come to us and say I have five hours a week to give you, that person has to be perfectly given the job description, perfectly given the formula whereby which they can report to us and our overseeing what she has done and the manner in which we will thank and integrate that work.? So that takes a professional and that?s an expensive piece of work.
Valerie Sobel:? I thought about the foundation while I held him for three hours after his death.? I went a ways with him and I knew that he was fine.? We were together in the valley of the shadow of death and I knew then that my personal healing will take place by helping others whose time is ahead of them to go through what I have, but it was actually a couple of years when it became clear of what it is that I have truly learned and what it is that I can help others and that was very little except here is some money that you have transportation to get home and that when you get there, there is a bottle of milk in the refrigerator.
Valerie Sobel:? I didn?t even know that there are three different ways to feel about three different deaths and how much they have their own markings because to experience within a year the three different deaths, it should have three different names.? And to lose a child is when you realize it?s totally different than it is to lose a beloved mother that I never quite cut the umbilical cord with, then to lose a wonderful husband to whom I was married to for 26 years.? All of these felt different.? If I had to close my eyes, they would have different colors.? It?s very very interesting.? If I had to give a color, Andre is golden yellow.? My mother is blue and green.? And my husband is very dark.? He?s in a gray swirling opal color.? And by that I mean that while the most horrendous, which is the child, it?s actually the most friendly color.
Valerie Sobel:? It is best that those who are not burdened with this kind of tragedy that they do not think about what if.? The bible is absolutely right when it says that the trouble of today is enough for today and I must tell you that something comes to you that is unimaginable not five minutes before you need it but there is a true state of grace that is as indescribable as is love or hate or any of those ethereal emotions that are very real but not visible.? Therefore, I just say to you, just trust that this will never happen to you, but if it does, something happens that makes it totally different than what you could ever imagine it and those are two things that should be very comforting to anyone.?
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