Wednesday, October 31, 2012

Why Are You Here? Part 1

As I stood with lights and cameras in my face, I attempted to answer that question as posed by Todd Perry, director of the Pujols Family Foundation.   I had ignored early invitations to participate in the making of a promotional video for PFF because I know I am hopelessly inarticulate when speaking off the cuff.  Plus, quite frankly, I despise the way I look and sound on video.  I left the interview wishing I had stuck by my original decision and had simply written about it  instead.  This post is my attempt to answer that question in a more thoughtful, less-babbling way than I did under the pressures of lights, spontaneity, and an imagined audience.

Why Are You Here?

I'm here because as a Christian, I am called to a life of service...especially to "the least of these"...which is not an insult to folks with Down's Syndrome, but a classification of those in society who cannot reciprocate, at least not in the traditional sense of  increasing our reputation, our status, or the size of our wallets.  

There are countless people groups who qualify as "the least of these": babies, children, elderly, the terminally ill, homeless, orphans, widows, the mentally ill, the physically disabled.  So why have I turned my volunteer efforts in this specific direction and why in this particular place (PFF)?

I'll answer the second half of the question first.  Bottom line: I believe in the integrity and value of the work that The Pujols Foundation is doing:

1)  They create opportunities for adults with Down's - My Aunt Riesa, whom many of you know, has until recent years, responded to the question "How old are you?" with "She's 18."  Now here's the deal.  It's not that Riesa is confused or doesn't really KNOW.  She has 4 biological siblings, a couple of foster siblings and 14 nieces and nephews, not to mention countless friends and extended family members, whose ages she has kept meticulous track of since she was a young child.  Once upon a time, I was younger than she was by about 8 years, but somehow I became 28 or 37 or 42 while she remained a youthful 18.   We have concluded that Riesa wanted to remain 18, because when she turned 19, she had to graduate from high school and she lost that network of peers that was important to her. If only she were still 18, she could reenter that world!  

The Pujols Foundation provides opportunities for young adults to transition out of the world of high school without losing touch with their friends.  They gather together for fun, for projects, for prom...and they delight in each other's company.  The foundation provides the means for this to happen and it is crucial for the emotional health of adults with Down's to maintain these connections.

2)  They provide connections for families - Parenting a child with Down's Syndrome is a unique experience that can only be meaningfully shared by another parent in the same circumstances.  Who better to listen, understand, encourage, and reciprocate with their own relevant experience?  I have watched my Grandmother raise a daughter with Down's, my sister raise a son with Cerebral Palsy, and my brother raise a daughter with 13q-.  Each of these situations bring unique challenges that cannot be fully entered into by parents with develpmentally-typical and neuro-typical children, so they need to encounter other parents and families who "get" the struggles.  These families are a special blessing and source of strength for one another and The Foundation's events provide the means for them to stay connected and share in each other's lives.  Mothers of a DS infant can gain invaluable insight, wisdom, and empathy from mothers whose DS children are grown.  

3)  They de-mystify Down's - Because a celebrity name is attached to their work, people who would otherwise remain clueless, actually pay attention.    Public events draw interest.  Perhaps we shouldn't need a famous figure to open our eyes, but it works...the Pujols name causes folks to tune in who otherwise might not.  The greatest advantage here is not a simple "awareness."  Awareness is highly overrated and, in and of itself, is largely useless in affecting change.  But as events happen publicly, more and more people are exposed to and become familiar with people with Down's, and they, in turn,  become more at ease and less nervous in their company.  This removes societal barriers and limitations, allowing individuals and families to participate more fully in arenas of life outside of their own little sub-culture.  

4)  They do their work in the name of Christ - For me, this can not be overlooked.  Their motive is the same as mine...they are called to be servants of Christ and to minister to those in need and they boldly attribute their work to Christ.  One way this manifests itself is in the low profile that Albert keeps at most of their events.  Not the low profile that doesn't show up because he doesn't care, but the low profile that says, "I'm just another dad of a kid with Down's."  So he shows up unannounced...and participates like everyone else.  Granted, there are exceptions at the major fundraisers where other celebrities show up - he speaks up and his presence is acknowledged - but even then he is not the main attraction and it's most decidedly NOT an Albert ego trip.   Many of the events are exclusively for those with Down's or for their families.  No glory.  No fame.  No status.  Just service.  And he is there.  

So, that's why I'm here at The Pujols Family Foundation.  I buy into what they're doing.

In the next post, I'll tell the reasons why I chose to dedicate my volunteer efforts toward those with Down's rather than toward other worthy endeavors.

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