Breaking the silence: why I’m asking you to be an advocate for children like mine

I’ve noticed that when I write posts about our life with Lucia and I tell you about our family’s journey in getting to know, understand, and love our child with disabilities, we are met with such love, encouragement, and support.  These posts have been such a deep point of connection for me with all of you because they show me how much you value children like Lucia, who have special needs.  They encourage me that you see value in difference and that you understand some of our challenges, delight, and struggle, and this is no small thing.

But I’ve noticed something else, too.  

I’ve noticed that when I post a video to my Facebook page showing Donald Trump mocking a reporter with a disability or an article that explains some of the challenges people with disabilities face if Medicaid or Obamacare are to be cut, or even an article that questions the President Elect’s secretary of education nominee’s understanding and value for the federal government’s protection of the civil rights of people with disabilities, there is no such outpouring of love and support, no litany of encouraging comments or outcries for justice.  Save for a few courteous likes, in fact, you are mostly silent.

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Photo credit.

So with sincere confusion and heartache and much trepidation, I want to ask, friends, why the silence when it comes to these issues of justice and provision and daily life for people with disabilities?  Is it because we remain deeply divided in this country and that divide extends to the question of how best to care for, empower, and support people with disabilities?  I guess I understand that.  We are divided in this country about so many things.

But I want to tell you something–the main reason I began writing Lucia’s story this past year is because I realized that it was so worthy of being shared and that she has so much to teach us.  But somewhere along the way, I also realized that when I write about my daughter with special needs on this blog, I do so in an ardent effort to bridge that very divide between us.  In fact, I write Lucia’s story (sometimes gingerly and ambivalently) precisely because she doesn’t and she may never have the words to tell it herself.  I write Lucia’s story because so many people with disabilities don’t have the hands and feet or the energy to call or march or lobby or fight for their own rights.  Of course many of them do, and that is why we have federal legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) because so many people with disabilities worked so hard to ensure that such persons are not denied basic rights to citizenship, employment, and education, but the ADA came along only in the 1990s and the IDEA is still imperfect and under threat even today.

There is so much to be done.

We live in New Jersey because when it comes to children with special (medical) needs, the NJ state program is one of the best around.  But we lucked into that with Lucia being born here rather than in say, Indiana or Texas.  And we can’t move out of this state because so few states offer the comprehensive skilled nursing care and Medicaid-sponsored secondary insurance that Lucia’s needs require, and these are the services that allow our child to get the care she needs so both my husband and I can work.  In so many other states where benefits are scant, one parent must stay home, and even when they receive benefits, it is these parents’ hard work that actually saves the state and the federal government hundreds of thousands of dollars a year because it’s way cheaper for parents to care for their kids in their homes than for governments to institutionalize them.

But these are all best case scenarios–yes, that scenario in which you must quit your job but you get some benefits and you get paid minimum wage to care for your medically fragile child in your home, or our scenario where you have such great benefits but you’re literally trapped in the state, you can’t consider other jobs outside your state or a home closer to family because those states don’t have coverage–those are the best case scenarios.  The worst cases are states that have so substantially cut their Early Intervention or Medicaid programs that families can’t afford these very expensive services that their kids need to grow, or worse, survive.  The worst case scenarios are ones where children still sit idle in classrooms with no appropriate or adaptive equipment because states don’t have the necessary funding or won’t put it toward the challenges of kids with special needs.  The worst case scenario is a country that becomes so divided that we fail to care for these kids and their families at both the federal and state level, a country wherein we’ve forgotten their rights and thus denied their humanity.

So when you hear politicians threatening to cut Medicaid and deny federal laws that protect children with special needs rights to education, will you remember our family and other families like ours and resolve to stand with us and not be silent?  Will you realize and acknowledge that so many families who care for people with disabilities are currently scraping by with so little (nobody gets rich off of disability), and cuts to federal and state programming make it hard for their parents to work, hard for their kids to go to good schools, and hard for such children to get good medical care, supportive seating that helps them go places, and braces to walk, run, and stand?  (There is still no comprehensive mandate across this country to enable these families to live sustainable lives–we’ve left that to the states and so many families are living the worst case scenarios everyday.)

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Lucia smiling with her father.  My photo.

These are the things I’ve perhaps neglected to tell as a part of Lucia’s story, because they’re personal and painful and arduous and inglorious but not any less true.  But if I can’t humble myself to speak these truths, and if this part of being different goes unknown in this country, then I’ve become complicit in this silence as well.

So thank you from the bottom of my heart for loving our family, for supporting all of us, and for sharing our story.  But most all, thank you for being part of a less raucous but no less valid and valiant movement in this country to seek understanding across our differences.  Thank you for considering this challenge to advocacy–the charge to love us by lifting your voice on behalf of my family and others and to seek the best for all people, especially people with special needs.  When you think about it, beyond Donald Trump’s mockery and Hillary Clinton’s platform, people with disabilities were again surprisingly absent from all this political jarring and sparring and posturing: where was the outcry against police violence toward people with disabilities (#criplivesmatter), or the righteous indignation over the exclusion of disabled people’s rights from the progressive Women’s March platform?

Let’s change this country, friends.  They’re going after kids like mine, and it’s not right.  

Let’s break the silence.  One phone call, one story, many voices, together.

P.s. If you’d like to get started today,

  • Please call your Senator and oppose the appointment of Betsy DeVos for Secretary of Education and Jeff Sessions for Attorney General.  You can read here and here why we don’t trust them when it comes to protecting our children with disabilities.
  • Sign up for news and alerts to fight for disability rights.
  • Talk to a family you know about their struggles and advocate on their behalf.
  • Carry a sign at one of the marches this weekend that makes it clear that you value and support the rights of people with disabilities–let’s make these marches truly progressive and inclusive!

 

 

 

It was always good.

A few months ago my husband said something to somebody about relishing the times when Lucia was a little baby (even though she was screaming all the time), because they were lovely and quaint and we’ll never get them back.

I remember so vividly how I just looked at him like he was an alien when he said that, because I couldn’t have felt more differently.

But I think I finally know what he meant.

I’m not sure, but I think there might be some great misnomer out there that life with children with special needs is abominably hard and painful all the time rather than also delightful and sweet and radiant and good.

Like one might assume that being in the hospital all the time sucks, and it really, really does, but then again, it also creates these long stints where we get this built-in family time and we really talk to each other and love and care for each other.  Our memories might be punctuated by hospital stays, but they’re also punctuated by moments we got to know our kid better and our love for her became fiercer.

Or what about the moments in between the screaming Lucia did as a newborn when she collapsed into our chests or fell asleep with her head in our hands?  Or how even though feeding her seemed to be practically killing her, walks in the fresh air were a balm to her soul?

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Baby Lucia and I on one of those early, perfect walks in the woods.  My photo.

I think what my husband realized even more than me is that the hard months that came very quickly after Lucia’s birth, the challenging diagnosis, and all the hospital stays can’t, don’t, and won’t crowd out the truth or mar the delight we have in her and the fondness with which we always think on her and the family she has made us.

There can be, and there is in life, so much that is distinctly and perfectly good even when it’s hard and rotten and difficult.

This year when I looked back to my very first post of 2016, when I started sharing Lucia’s journey and ours alongside hers, I was struck by the words I used to describe it all:

“My husband and I have become parents to a precious child with profound special needs.  It has changed and will change our life forever.  And it is good.”

It is good.  It has always been good.  

There was the truth right there, writ all over my announcement to the world of who Lucia is and how our life has been and will be with her.  Do I often wish that we could heal her wounds swiftly and eliminate her pain?  Of course!  Do I pain to see her struggle to do simple things and sometimes just survive?  Why yes.  Do we all not know what to make of some of these challenges and decisions sometimes?  Precisely.

But does God, in all of his infinite wisdom find her so perfect and so good that there’s not a question in my mind that we are distinctly and deeply blessed?  Definitely.

“It was good,” God said when God made all of creation.  And he meant it.  Though life may be flawed and time may bring wounds and pain and hardship, all goodness is transcendent, true, and from God.

And I am deeply thankful to see and know Lucia in all her goodness, one day at a time.

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Some 2017 smiles.  My photo.  Happy New Year!

 

 

What I Learned in 2016

Publicly 2016 has been a year that will go down as one of the most violent, tumultuous, and cruel.  I had been thinking of it that way myself, until I came across this article that speaks to some of the less covered triumphs of the year, and until I did my own year in review on the blog.

I was shocked to realize that it was only just a year ago that I began sharing Lucia’s story on the blog, and although this year hasn’t been easy, she continues to teach me more about life and love and God than practically any other human being on the planet.  She’s inspired a whole category of posts (22, make this 23, in fact) on disability, and she’s made me realize how valuable it is to share journeys of hardship and strength with one another.  Thank you all for letting me share!

As I’ve done many years before, here are some of the lessons I’ve learned from life and God and Lucia in 2016.  Follow along with me and find your own redemption in 2016.  Looking through these lessons always reminds me how emphatically present God really is in our lives, how far I’ve come in terms of my understanding of God, and of course, how much further I have to go.

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Art credit.

Here’s to 2017!  May it be bright, peaceful, and chocked full of spiritual wisdom and hope for all of you.

  1.  I’m not sorry–nope, not one bit!
  2. Sometimes the faith of others can carry you through.
  3. We are all needy.
  4. Forgoing security for faith is, well, what the life of faith is all about.
  5. Modern medicine doesn’t have a monopoly on what it means to live a meaningful life.
  6. The Church needs people with disabilities!
  7. I have learned to hope again.
  8. It’s all ministry.
  9. Luck’s got very little to do with it.
  10. I embrace difference as a spiritual discipline.
  11. Conviction is a luxury.
  12. Who could have imagined life would be this grand?
  13. Let’s not make grief unpalatable.
  14. Joy often comes in the midst of despair.

 

P.s. Here are some lessons learned and looks back at previous years on the blog if you’re curious:

2011, 20122013, and 2014

 

Joy amidst despair

It’s been a few weeks since we lit the Advent candle of joy and here we stand, poised to celebrate another Christmas Eve.  And yet, the world is dark–ravaged by war, injustice, insecurity, and violence.  And so perhaps you do not feel it.  At first, I did not feel it.  At first I was wont to ask, where, how can I find joy this season?

But we do not find joy.

We do not carve joy, just as we do not carve prayer, peace, patience, or goodness of our own devices.  We wait, as we have for at least the last twenty-seven or days, if not much, much, much longer.  We wait on God for joy.

As we studied the words of Isaiah’s prophecies these past weeks, we were met with a world full of judgment, impending doom, violence, and war.  And yet, God, through the words of Isaiah, called the people not to ally with foreign forces but to wait upon God for Emmanuel.  Hundreds and hundreds of years later, the terms of the census, the reign of Herod, and the world Jesus was born into were inhospitable to him and to his family.  His parents struggled to stay together in a culture that shunned their out-of-wedlock pregnancy; and when they made the pilgrimage toward Bethlehem, they probably did so with not joy but great inconvenience, with great fear and awe and worry.

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Hold onto joy.

The Christmas joy we want and we expect, that burst of joy from the heavens, joyous singing, harmony, and peace is not how I know God to have made joy biblically or in my own life.  Rather, God in God’s almighty wisdom seems quite wont and capable to carve joy from the most unlikely of circumstances, to bring joy when despair is the currency of the day.  Perhaps this, rather than trumpets and fanfare and glee, is what the birth of Jesus is really about–about God’s will to bring light to a dark world when it seems so bleak, so impossible, so, so, so difficult?

Look back on your own life and think about the moments were joy peeked inexplicably, unexpectedly, impossibly through the veil of sadness, despair, and fear.  Think about the breath and the beauty of light in a world or a room filled with darkness.  And care and coddle and nurture that kind of joy this season.  Welcome and look for and do not dismiss that kind of radical joy that finds the world and finds us in the midst of despair.  In fact, strive to remind the world that that kind of joy is not only possible but present, and let us live with this joy not only one day, on Christmas, but each day, even if the world remains dark.

 

Quiet in Advent

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This clever sketch with its caption, “A nativity scene without Jews, Arabs, Africans, or refugees,” has been circulating on social media.

This season I’ve been intentionally quiet, quiet mostly in the mornings but also quiet on the blog.  This Advent, I’ve tapped back into my practice of Lectio and Centering Prayer.  I’ve been reading the prophetic scriptures from Isaiah and the journey to Bethlehem in Luke as the Syrian city of Aleppo crumbles, lives are lost, and great fear reigns throughout our world.

I haven’t known how to respond to all the darkness, have you?  

I should speak out, I think, say something like Isaiah, the prophet, reminding us how to follow a God who is not of this world, a king who is not violent, but gentle and humble and an outsider.

Is silence surrender in the face of such great evil, especially in a season that proclaims resounding joy, reconciliation, and peace?

I strive to work for justice in fits and spurts, donating, signing petitions, calling my congresspeople, but in the mean time, in a faraway land from where our savior was born, I hope that my silence meets God’s faithfulness.  You see, what I have always found so powerful about centering prayer is that I’m not doing anything–and that’s the point.  Because if prayer is just one more thing that we do, let alone one more thing that I presume to muster of my own wisdom and accord, then it is anything but a holy offering or a right relationship to God.

And so as we wonder how to respond, I wonder, whether as always, if it isn’t less about us and more about God–God’s saving action in the world?  I am patient in this season to listen but not to listen without responsibility.  I listen and trust and charge God with all God is always doing to offering healing, respite, and reprieve.  And I wait for God to give me the words, the actions, and the steps to be an instrument of peace this Advent season.

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My little setup at the new home.  My photo.

If you’re interested, there are over 30 posts in the category “Centering Prayer” on the blog.

Here are also a few posts from past Advent reflections and practices:

This Advent, Share Joy.

Advent and Breaking In

Advent: Reorienting Expectations

Thinking on Advent

Mary’s Song: Advent Expectations

God can take it

God, making weakness holy for over 2014 years

Finally, I’d be interested in hearing from any of you who are struggling in waiting this season.  It strikes me that waiting and silence feel particularly cheap in a season where this so much violence and need.  What is God teaching you?  Where is God leading you?

 

When grief is unpalatable

We’ve spent the last few weeks caring for our daughter who just had surgery.  She was in a fog for about three days from the anesthesia and all the pain killers, and though she had no major complications, we felt like we lost her for five days or so to that medicine-induced haze and the severe pain she experienced intermittently.  Leaving home last weekend and this past Monday to head to work was particularly difficult because she wasn’t fully healed (she still isn’t), and she certainly wasn’t yet herself.

And when people asked well meaning questions I felt most qualified to answer them from my experience–my husband and I were struggling so much with seeing her usual bubbly self all comatose and uncomfortable.  Caring for someone who is in pain is painful.  Despite the seeming wisdom of it, then, when people tried to move past the pain–“but the surgery was successful, right?”  “But she’ll feel better soon,” or even, “Well, of course she’s in pain…”–it made me feel very misunderstood.  It felt like other people were trying to look past the real pain and grief of my experience because it wasn’t very palatable, convenient, or acceptable.  They wanted to resolve my grief for me, but when I came home and found Lucia limp in my husband’s arms or screaming in pain, I felt so alone.

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Lucia and her father cuddling on a Sunday afternoon.  My photo.

Precisely because I was grappling so ungracefully with my own grief these past few weeks, I immediately recognized something similar in my students’ tear-stained faces, slumped shoulders, and speechless, flustering sighs the Wednesday morning after the election.  Truth be told, given my own personal grief, I didn’t quite feel like beholding the grief of another.  But something nudged me that a void remains a void (or becomes even worse) unless a leader, even a trepidatious and imperfect one, steps into it.  And so, armed with some words of wisdom, some humility (after all, I knew that some students’ grief would be juxtaposed with other students’ celebration), and a deep conviction, I showed up to class that morning.

I showed up and told them I wasn’t really equipped to moderate their discussion but felt that we needed to acknowledge what happened, our varied feelings, but mostly that for the 15-20 minutes as a class we would covenant to make our space safe for all people, and to be respectful to especially those who were grieving.  Many students cried, other students aired frustrations, some students tried to move forward.  Very gently I nudged them back toward their grief.  When one student tried to tell others they were overreacting, I did the same.

I tried to carve out a space where grief was acceptable and welcome, recalling how alone I’d felt just that past weekend when my grief had been too much for others to bear.  It was only 20 minutes.  My students have a paper due this weekend. Life goes on.

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But I wonder sometimes what our country might have been this past week if we could have bore one another’s grief a bit more consciously and transparently and reverently  over these past 18 months leading put to the election.  It seems so much anger, righteousness, and denial in both campaigns speak to distinct places and manifestations of grief in more palatable clothes.  It’s always more acceptable in America to express anger as opposed to weakness, righteousness over fear, blame rather than humility.  But it feels decidedly too little too late when so many in this country were already hurting, but we mistook their grief for the ugly face-value emotions they presented.

Perhaps my greatest comfort in these trying personal and corporate experiences of grief is knowing that even when we fail, God’s empathy is deep enough for us all.  When we think we’re alone in our grief, we never really are.  But God is also not “on our side” as we in America are always tempted to think; God does not rejoice in our clanging campaigns of strength and righteousness but in our genuine holy moments of listening to one another.

In the dramatic days after the election, despite our penchant for progress, there have been holy moments of grief.  They are moments we want to move past, but what if they’re just the beginning?  What if they are moments that truly matter?  I learned this past week that even when we are weak, God can make us strong.  We can make space for those who are grieving to be heard, and while it may seem a simple step, it’s a vital one to healing.

We cannot heal if we do not break apart.  We cannot lead if we assume God is looking for wholeness and greatness and power.  Perhaps God can use us just as we are.  Perhaps our lament is pleasing to God’s ears, too.

 

Thanksgiving (in an election season)

A couple days ago I talked with a friend who has a daughter who faces similar special needs as Lucia.  It was refreshing to speak with someone who has such a kindred attitude toward celebrating his daughter’s life, despite the challenges and the hardships.

However, as we drove home from the hospital after a successful surgery with Lucia yesterday, I reflected that in so many ways this attitude of understanding our children’s lives as cause for celebration rather than burden is bolstered by the support systems we share.  My husband and I are so thankful to live in a state that invests in Lucia’s care, to have insurance, that despite its shortcomings, generally covers all that she needs, and to have friends and family that love Lucia unconditionally, pray for her, and care for us!

It is difficult to imagine how we might view Lucia’s disability if with every medical intervention we had to also sweat the finances or insurance coverage or if we had to worry that someone caring for her didn’t have the proper resources or training.  These are the very important supports that often go unstated in the words I write about Lucia, and this morning, I am thankful for them.  I am also deeply prayerful that families who don’t have such support will find it in gracious lawmakers, caring social workers, more humane insurance policies, and more state programing for kids and families with special needs.

The pending election in this country may seem positively incongruous with this month in which we aim to practice gratitude by naming our blessings when so many, like the ones above, go unacknowledged.  But this morning, I began to wonder what it might look like to practice a spirit of gratitude despite the strife and division in this country and the world.

How would our attitudes toward one another shift if we were to focus our attention on all that we in America have to be grateful for, what we are grateful for in the candidates we support, or what we are grateful for when it comes to the provisions of our country and state (rather than only so very critical of)?  Thanksgiving invites us to pause and offer God the praise that God is due, and as we can see, this in and of itself, in an election season can be very powerful and countercultural!  Could such thanksgiving invite us to more civility and less hate?  Could it remind us of our common human needs, desires, and goodness?  Could it point us back to God when our human ways are frail and flawed?

I realize, perhaps more personally than many this election season, how dire and in jeopardy such supports for people with disabilities are, and I do not discount these challenges, but I wonder if gratitude is still an appropriate way to reflect on the hardships in the midst of the blessings.  After all, God has taught me so much about how to experience blessings despite the challenges as we’ve gotten know Lucia!

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Photo credit.

So this morning, I am thankful for…

The amazing nursing care provided through Medicaid in the state of New Jersey, for my daughter, Lucia, and the opportunity for her to attend a school come February that will meet her special needs.

All those working to welcome refugees to the abundance this land and its people can provide.

A country free from war and where so many live free from poverty, hunger, and despair.

A presidential candidate who has made disability rights a platform in her campaign.

Students at a historically black college who protested a KKK speaker in their auditorium and people protesting a pipeline that will disrupt Native American lands.  Thankful for those who lift their voices, use their bodies, and engage in brave, peaceful protest for those in need in this country.

A democratic country with peaceful elections, robust debate, and freedom of speech.

All those who love Lucia so well, celebrating rather than mourning or pitying her life.

What are you thankful for this morning?  What countercultural words do you have this election season?  Feel free to link up with this post and write your own #thanksgivingforelectionseason.

 

 

 

 

The luxury of conviction

We’ve examined all the evidence, talked to multiple doctors, and made the decision for Lucia to have a minor, preventive procedure next week.  But given that nearly every one of Lucia’s surgeries, despite its long-term success, has resulted in substantial consequences and complications, no decision ever seems so minor, no surgery decision ever completely or clearly obvious or secure.

When I was a kid, I used to think that being adult meant that when you made decisions you made them because you knew what to do–because you could distinguish between right and wrong, good and bad in the way one prunes the dead branches from an otherwise life-filled tree or discards bruised and rotting fruit.

But now I know how fully such conviction is an often sought after but fairly elusive luxury. Perhaps it’s that way for every parent but the stakes seem so much higher where you’re tracking in an autoimmune deficiency, aspiration risks, and surgeries.

But I think I find this so hard because I’m an 8 (on the enneagram).  I make decisions swiftly, like it’s my job.  In fact, it’s a job people often, with great, hearty, thankful sighs, outsource to me.  I’m proud of my forthright and decisive nature, because it contributes to my vision.  I can often see very clearly the path forward when others are still hemming and hawing over the myriad of options.

But I do not enjoy one bit playing God with my daughter’s comfort, life, future, and pain.

I really wish there was someone to outsource all of that to.

But then I’d be someone else’s parent and she’d be someone else’s child.  And she’s my conviction, all twenty-three pounds of her is what motivates every excruciating decision and prayer and hope and risk.

Because when it comes down to it, complacency and inaction and passivity are all luxuries as well.  As Mary Oliver so starkly put it, “Tell me, what is it you plan to do with your one wild and precious life?”

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Snuggling with Lucia on a fall day.  My photo.

At my bravest and perhaps most decisive, I realize that Lucia is already living this life, and we are merely striving to find the conviction to live it just as fully with her.   So we strive to outsource the burden of those decisions to God so the weight of them, whatever they may be and whatever may come, feels just a bit lighter.  We decide to live each day with conviction, because perhaps it’s not so scarce after all or just reserved for big decisions.  Perhaps conviction lies in embracing the everyday moments that compel us to see just how blessed we are to live this life with Lucia and one another.

A house that talks

I went away for my birthday last weekend and returned to find the walls of our house, previously bare, covered with photos and artifacts from our travels and pictures of that lovely girl has become the source of so much inspiration on this blog and to her parents.  My husband and his parents had to work around the real plaster walls to adorn the place but it surely feels more like a home now that it did before I left.

A few months ago I wrote about how I’ve struggled with this big purchase, this acquisition if you will, but how the house has already brought us so much joy, and perhaps God means it that way.  And you’ll have to humor me for writing yet another post about the house.  But it continues to feel like an adventure, this getting to know the house, and its old ways.

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Lucia enjoying being outside in front of our house.  All photos mine.

For one thing, the house creaks and moans and groans and talks.  It’s kind of like another character in our lives; it does its own thing.  And it seems like people forgive that personality of old houses so much more easily than new.  A crack or a cranny or an angle or a blemish is just how she or he was made, rather than something necessarily to be fixed.  You work within the house’s constraints with more measure, because it has existed long before you and will continue to live on (hopefully) long after you’re gone.

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Lucia on a walk in the cemetery.

A few people have asked me whether it’s haunted and I’ve replied heartily, gee, I hope so!  Across the street a cemetery that initially spooked one of Lucia’s nurses (she’s from China and has a hearty respect for ghosts) has become a favorite walking place for all of us.  It’s the view we linger upon from our windows, that and a little church that’s no longer in service.  All these features can be kind of painful reminders of the lives lived within these walls and around this little town that cease to be.  But they can also remind us of our smallness.  Our small, small part in the grandness of God’s works throughout the ages.

You see, when we were looking at houses, we kind of fell in love and bought this house because of the way the sun set and the golden light glittered on the field out behind it.  Sure, we cared about the inside of the house, its spacious kitchen, and its accessibility for Lucia, but it was not as much about just who the house was but what the house held out before us that made us buy it.  Perhaps this is why old houses are so much more than the sum of their parts–they have storied pasts and thus, hold out before them artful futures, and we continue to feel blessed to live in the in-between space, where history is relished and dreams are conjured.

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Lucia and her dad on the porch.

We’re learning to live with the clunks in the night, but it’s so funny, whereas in our previous apartment we used to go all frenetic when the smoke alarm went off and might wake Lucia, in this house, we let the sounds live.  I think we imagine she enjoys and leans into the creaks and the clunks as much as we do.  They’re a sort of comforting reminder that the house has its own truth to be spoken in a world that can be so careless with the histories, stories, and lives of things that mattered to someone and will matter in the future.

So on a rainy morning like this one, I listen to the rain fall on the rooftop, place my feet on the boards that have been here for hundreds of years, and relish the little creaks that let me know that my weight upon it means something to this sturdy, storied house.  And I wonder how our lives lived will be added to its landscape, our little imprint figured into its much longer, illustrious, creaky history.

Who could have imagined?

Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me.  One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!

One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me.  The friend was a little disappointed.

Lucia has her own social life, I chuckled.  Who would have imagined?  I thought.

Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth.  Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.

At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting.  This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip.  Several months ago, one of her nurses put her hair in Jamaican braids!

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Lucia taking a nap on the D& R Canal in NJ.  My photo.

I think about the incredible richness of the life Lucia leads and I am in awe.  Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care.  But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.

A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me:  “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus.  I’m sure it is so hard to see her go.”

Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully.  But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school.  Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.

When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God.  This is precisely the life I would want for my child, and yet, who could have imagined this life in particular?  Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures?  Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives?  Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?

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Every time I look at this photo of Lucia I can’t help but smile. (My photo.)

Well, God, of course.  

And thank God for that!