this weekend held world down syndrome day within it. 3/21. if ever there was a reason to dust off the ol’ blog, this is it. a conversation with my dear friend, jamica, reminded me of what being mazzy’s mother has taught me, is teaching me still…this post was an article that was published in that last issue of Hope Signs – a newsletter of L’arche USA. enjoy!
when my daughter was born with down syndrome, the views of the people in our faith community regarding her diagnosis swung widely back and forth on a spiritual pendulum.
on the one end she was an angel.
i remember a very levelheaded man helping me carry her car seat out to my vehicle one winter. he told me he’d be praying for us as we drove home. then he nodded towards mazzy, who was barely three months old, and said, “but I know someone is praying for you already.”
i was confused.
then driving, it came to me what he meant. he meant the infant in the backseat must have full knowledge of our situation and that her special connection to all things heavenly was working even now on our behalf.
on the other end, the pendulum swung to the view of disability as affliction.
one night a friend came by, our daughter again only months old. he let us know he had waited until we were settled in, but could wait no longer. he had to tell us the truth: down syndrome was not of god and we tonight could begin praying for her healing.
i stood stunned with my brand new babe in arms and felt as though i’d been sucker punched. i loved this friend, and over the coming days i engaged him in his views and debated various parts of scripture, but in the end i had to ask him to please leave our family be. i told him that if he was right then God would be able to tell me in some other way, but for now i wasn’t going to be praying for her complete healing.
i didn’t buy either of these spiritual takes on disability. they rang false and missed the point and the person, entirely.
above all else, they both lacked love.
i went on a spiritual retreat a few years after mazzy was born and found jean vanier’s From Brokenness to Community while looking through the bookshelves there. i didn’t know anything about l’arche at this point, but as i read my heart started beating faster.
this is it! i thought. this is the right way to understand disability and spirituality!
when jean vanier meets a man or a woman with a disability, he has the unique ability to see god clearly. from the start, he had so oriented himself towards god that when the moment of decision was before him, he answered, “yes lord” in regards to living his life with those men and women.
that ‘yes’ has blessed my life and many others besides.
my daughter will never measure up to the world’s standards.
not to its standards of physical beauty or of intelligence. in this world’s eyes she is flawed and she will never attain its approval.
i remember then that if it is impossible for her to attain it, then it is meaningless.
mazzy is a beloved child of god. he is completely pleased with her as she is.
mazzy is not an angel, she is a human being. she is not afflicted, she was crafted in love on purpose. so physical beauty and human intelligence get put in their proper place and i give thanks for this pointing towards true north once again.
i so appreciate the spirituality of disability i’ve found in l’arche and the vision of jean vanier.
it imparts freedom to those with eyes to see and ears to hear.
it pays attention to the truth tellers among us who testify with their very existence about what is true, what is beautiful and what has real meaning. i respond to jean’s vision by giving financially to the men and women who are living out that vision every day.
i gladly give whatever i can to support a spiritual view of disability that loves the same human being I love.