Tuesday, November 9, 2010

This is My Child

"I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"
--Tamara Welter, mother to Olivia, aged 21

What does it mean to be human? 

What does it mean to be alive?

What does it mean to be productive or not?

Does it matter?

Above all, this is my child.

Read more and listen to this story -- it brings up just about everything that we parents of children with severe special healthcare needs face. 


  1. It is so difficult to measure the worth of a human being in capitalist terms. And so completely ridiculous. It isn't until we can look each other in the eye and be completely honest about the ways we offer love and wisdom to each other that we can truly know each other's worth. Everyone has something to offer if we all open ourselves up to accepting the lessons.

  2. Sophie contributes something to me every time I see a photo of her beautiful self. She contributes something to me every time I read something you've written about her. She contributes through her brothers who will be strong and caring individuals for having her present in their lives. She contributes through the love and concern she engenders in so many of us--strangers who have come together because of her. Yes, she is so very worth living the best life possible for her. Her life is precious!


  3. i have thought about these things my whole life. because my father was so cruel, and so strange, and such a mass of contradiction and perceived SO differently by his family and his friends... and then myself, having severe anxiety, and not being 'use' to anyone or anything for years, and more. what does it mean if you are not 'of use'? and what does being 'of use' mean? what creates the worth of a person- their existence? or what they 'contribute'- and if so, who qualifies what a contribution is?
    the greatest teachers say that it is simply in our existence that we have worth, but our society does not believe or support that.

    it is the love of a mother that is the closest to what it is so appreciate a human life, i believe.

  4. I listened to the NPR and I looked at the photos....it broke my heart to think that Olivia could lose all the care she needs because...whenever there are government cuts or threats to cut care I want those insensitive people to put themselves in the families place for a day. To look into the eyes of a child or young adult that is unable to run, jump, talk, or take care of the most basic needs that we take for granted.

    The photo of your lovely Sophie...and knowing what a caring devoted family she has...

  5. Productivity does NOT equal worth. Not.not.not.
    Existence - the fact that we have been given breath, in this moment - is evidence, to me, that we have value. I would even go so far as to say that God has loved each one of us into being. But that's just my perspective.
    Your gorgeous daughter's existence has brought light into mine, many miles away. Thank you for that - please thank her for that, for me.

  6. This is so hard. And honestly- I don't think anyone who has never had a child with such special needs has the right to put their two cents worth in. I know I don't. I know that if Olivia or Sophie were my child, I would do whatever it took- probably not with the grace that Olivia's family does or that your family does, but with everything I had within me. Because yes- that would be my child.

  7. Thank you so much for posting this -- I hadn't seen it and would like to share it.

  8. i sat in the infusion center for eight hours today. i looked deeply into your child's eyes...the hundred leaves of change that crown her. i thought of you, her, countless others but i could not write...my arm hurt too much with the i.v. to bend it in any useful fashion.
    and i thought about worth..
    i thought about how i live each day as if it may be my last.
    about the fact that in less than one year i will reach my lifetime cap. and then i will be the one whose life will not measure up to the price of treatment.
    i share this because i look at your daughter with the same longing...the same hope..the same compassion a mother looks at her child. the same way my son looks at me.

  9. I , too, feel unqualified to say much.
    I believe everyone's life is sacred . My worth isn't up for debate, nor should Olivia's be. Our stories are part of a greater one.



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