Tag Archives: sharing

On enjoyment and spirituality

Can I confess something?

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Lucia and I on the patio, the leaves catching the first glimpse of fall.  All photos mine.

I really, really, really love our house.

That may seem like the most obvious thing to say.  I’m supposed to love it, right?  When you spend months and months anticipating something, it seems inevitable that your spirit would sigh a bit when you finally experience and live into what you’ve been anticipating.

Maybe it’s my Protestant ethic or my missionary soul, but it feels like a confession to make and it’s been a little hard to let me give in and love this house, because I have a hard time loving any-thing so much.  Things aren’t supposed to make us happy, I scold myself. Happiness should be intangible, inwardly grounded, yet that which sets its sight on lofty and pure ways–contentment in all circumstances.

But it just makes me so deliriously happy to share this place with friends; to sit on the porch and watch my daughter, despite her limited vision, explore the beauty of the trees and the dappled light and shift her head from one side to the other in search of birds and cars and sounds; to watch my husband cook for friends and for me in the light-filled kitchen; to linger on the porch into the evening enjoying being outdoors and in one another’s company; to work fervently inside my office these days and creep down to watch Lucia solider on in her therapies in her new room; and to dream about the times that will be had here, the way we can share and reinvent and live into and enjoy our space.

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Lucia on the patio and my prosecco and grapefruit juice ready to greet the weekend.

And suddenly enjoyment of this space, the way in which it invites me to hope and dream and pray, doesn’t seem so bad, so ill-advised, decidedly worldly, so spiritually vapid.  I find that my spirituality these days is constantly unfolding, being remolded and reshaped to see God in more places, and I think that is good.  I find that my Puritan tendencies that push back against my instinct to revel in this place and its grandeur cannot always be trusted.  Indeed, my own sense of what is good and pure and right can sometimes lead me astray, whereas Lucia, nature, sharing, my marriage, and life well-lived can be much better guides.

There’s no way I will ever shirk my missional aspirations, nor do I want to fully.  I remain convicted that this house is not a final destination or a treasure to be hoarded, but a beginning and a challenge that must be regarded with care, responsibility, and humility.

What will you do with this great blessing?  I often hear God asking.

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Exploring one of the lush country roads together.

And I am intent to respond, share it freely, use it to bless others, and remember that it is not my own.

But somewhere in there, I think God wants us to enjoy it, too.

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Join Our Special Needs Hackathon

The world is not set up for children (or adults for that matter) with special needs so every day can be a challenge.  What I’ve observed during my time in China working with families with kids with special needs and here in the US is that lack causes families to get really creative and innovative.  Perhaps not surprisingly, families with children with special needs don’t allow themselves to be stymied by an ableist society, lack of equipment or access to it, or most especially, the differences of their children–rather, they often work within society’s limitations to find the best ways to meet their children’s needs.

So, I want to highlight that ingenuity, tapping into our common wisdom, rather than just bemoaning our critical challenges.

In this post, my goal is to start a chain of communication where families with children with special needs can share cool “life hacks” with one another and find solutions to their everyday challenges.  I’ll start by sharing one of the things that we’ve discovered that works really well for Lucia, our daughter with a genetic syndrome of the brain, who feeds through a g-tube, and has a combination of high and low tone.  Then, I’ll post a question in an area where I need help.  What I’m hoping is that someone out there can answer my question, either on their blog, or on social media, and share their “life hack” and pose their own question, and so we can keep sharing!  Feel free to use the hashtag #specialneedshackathon so we can connect up all the posts.

So here’s the format: 1) Answer a question (on your blog or social media) by sharing a life hack that’s worked for your family or or your child with special needs; 2) Pose a question you need help with; 3) Use the hashtag #specialneedshackathon!

Of course everyone’s children’s special needs will be different, but my hope is that we can begin this important conversation, focusing on our strengths and our creativity, and building our community, rather than perhaps having to reinvent the wheel!  If you know of other efforts to share solutions like these, please point me that direction, as well.

So now for our life hack!  We always share with other parents that we stumbled into a great solution in that very early on we could tell that a regular stroller wasn’t going to give Lucia the trunk, torso, and head support that she needed to sit well and enjoy the world.  When she was about 14 months, we had her in an umbrella stroller and were visiting the Abilities Expo in Edison, New Jersey.  Our friends had a Special Tomato chair for their son who has CP and we were eager to try one out!  My husband asked if the size one soft-sitter would fit into the umbrella stroller and though the personnel didn’t know, they were eager for us to try.  Well, lo and behold, you can strap the size one chair onto an umbrella stroller and it fits all snug, almost as if it was made to go in there!

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Here’s Lucia in her special tomato chair strapped to her umbrella stroller!  Photo by Erin Raffety

Of course, you can probably fit the chair into many strollers, but for us, attaching it to an umbrella stroller has meant more easy mobility for our family and a lightweight, cheap solution, as the chair alone can be quite expensive.  Special Tomato also sells their own strollers but this seemed like a good solution, given that she will be growing out of it in no time!

And now for my question: as Lucia grows out of a traditional changing table (she’s 2 and 1/2 and around 24 1bs and 31 in), I’m wondering what other parents of older kids with special needs who still use diapers do for a changing solution?  We’re moving into a new house so we’re interested in finding something that is more long-term, comfortable for her, and doesn’t cause our backs to ache every time we go to change her!  Any special needs life hacks out there???

Advent: Reorienting Expectations

Advent is the season of waiting and expecting.

Candles on Christmas. Photos by Evan Schneider.

And I realize I’ve written a lot about expectations on this blog.  Inspired by a post on Zen Habits and shaken by a professional disappointment, in China I wrote about the freedom that comes with tossing one’s expectations into the ocean.  Then, a year later in the midst of culture shock and making a new life in this country, I wrote about the sense of hope that comes from being a forward people and being able to rest in a God who promises more than we can possible imagine…or expect.

Lately in preparation for the courses I’m teaching on Cross-Cultural Family Systems, I’ve been reading a lot about lowering one’s expectations when it comes to dealing with difficult family members.  Such a directive doesn’t seem to jibe with the orientation I want to take to humanity and family, which is more along the lines of investing in people, and sharing real struggles in order to reach a place of deep communion and better communication.

As this dissonance swirled in my mind, it also brought up the varying engagements with expectations that I’ve been pondering and writing about–tossing, lowering, and raising–and I wondered what this range says about theology, consistency, myself, or God?!

Boats on Plymouth Harbor.

At present, I’m drawn to the conclusion that not only are tossing one’s expectations into the ocean, lowering one’s expectations, and expecting everything perhaps relevant to different life seasons, but they all clearly involve a reorienting of expectations, in which we hopefully allow God to return to the center of our lives.  To explain, are not tossing one’s expectations into the ocean, lowering one’s expectations when it comes to family members satisfying all our needs, or expecting faithfulness and promise from God all deep acts of faith that recognize God’s supremacy and our humanity?  

It’s funny, because taken from this angle, lowering expectations, when it comes to family (which is particularly relevant during this season!), is perhaps neither glib nor maudlin, but rather a recognition that our tendency to attribute our failures or unhappiness to others is our problem, not theirs.  Investment in our friends and family, then, becomes the radical practice of sharing, not because we expect others to fix problems for us or fix themselves, but simply because we love and trust that relationship itself is life-giving.

Our bonzai Christmas tree in China, decorated for the holidays.

So this Advent, whatever your expectations may be, whether you’ve tossed them, lowered them, or raised them, may God be your guide and your center.  May God be at the helm of your reorienting and may we all be powerfully changed by a God who is wholly and holy relational, and with whom, we find both radical hope and freedom this season to love those in our midst.

Amen.

P.s.  This great little post on five advent reflections may have gotten buried in a previous post.  There’s so much about God’s reorienting work in these reflections- enjoy.

P.p.s.  Gretchen Rubin’s tips for getting along during the holidays!