Category Archives: family

How I know my daughter will be (more than) okay on her first day of school

I had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life.  It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.

My fear wasn’t even that she wouldn’t be loved.  How grateful I am that I’ve never really feared that given what an amazing community of individuals God has placed in Lucia’s life who so dearly value her and endeavor to love her just the way God made her.

But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.

I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.

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Lucia enjoying her balloons on her birthday.

On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking.  I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.

“Do you think she knows you?”  people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world.  Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house.  Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.  

But it’s all very hard to tell or describe, because you can’t break joy or love down to a science.  How do you know your child loves you?  You just do.  There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved.  And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.

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Celebrating Lucia’s third birthday this February.

And so I can’t really find it in myself to worry about how Lucia will do when she goes to school.  Lucia will do just fine.  We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure.  But those people around her–I’m almost more excited for them.  Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.

Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.

We love because God first loved us.  Every single one of us.  Even my Lucia.

Thanks again.

We, like so many other parents across the globe, took our almost three year old to her first political protest on Saturday.  And like so many, it was not necessarily the words of the speakers or the size of the protest that mattered so much, but the experience of standing alongside others in that damp, dreary weather and feeling the light and the warmth of knowing we’re not alone in the fight for the rights and dignity of all people in this country.

But when another pastor came up with his family to tell us that he had first started to take his now teenage son to protests when he was about Lucia’s age I have to admit that I was a little dismissive.  Lucia would probably not be conscious of this protest anymore than ones she might attend in the future–in other words, I was emphatically aware of the cavernous difference between his able-bodied son and my disabled daughter, of his typical family and my not so typical one.  Minutes later an elderly woman wanted to present Lucia was the paper crane she’d been fashioning while she stood beside us.

 

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Photo credit.

“Kids must be so bored at these things,” she whispered.  “Perhaps she’d like something to play with.”  

“Oh, well she can’t really use her arms,” I replied dryly.  

“Well, can she see?” she persisted.  

“No, not really,” I replied again, rather impatiently.  

“But she can feel,” I finally acquiesced, flapping the tiny wings of the little bird against Lucia’s cheek to the woman’s contentment.

Even then, despite this woman’s resolute patience, I felt a pang of ambivalence.  I perceived her persistence to be a reflection of her own desire to give her gift, whether or not it might be appropriate to give or whether Lucia could really receive of it.  Despite the myriad of people who encircled us to tell us that they liked our “#disabled lives matter” sign and smile at our toddler with special needs, I realized how was possible it was to feel disconnected to the 7500 people with which we stood.

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Protesting at the Trenton Women’s March.  My photo.

Nonetheless, not only the Trenton march, but the hundreds across the globe, especially the march on Washington, were an enormous success, and on Sunday as we stood in the church hallway, the other pastor and I chatted excitedly about what it feels like to be part of history.  I remarked on how deeply moved I was by all the supportive responses to the piece I published on Thursday on this blog and Friday in the Huffington Post and how emotional it was when friends texted me photos of themselves marching in name for our daughter, Lucia, and disabled people across the country.  But then again, almost before the words were out of my mouth, I realized I didn’t like how they sounded: I realized I was being dismissive again.  I said something like how loved we felt, how Lucia had been so happy all day, but of course, she didn’t understand much of what really was going on, although it still meant something to us, to her parents.

“Oh, I don’t know,” my colleague replied graciously and carefully with something like,  “I think love is love.  I’m not sure we really know how people love, how it works, or how they receive it, but I think we can feel it.  I think everyone can feel it.”  

I swallowed, a big lump rising in my throat, and I thought about the pastor and his kids and the woman with the paper crane.  I thought about the 7500 people marching in Trenton and millions of others across the globe.  I thought about the words I’d written last week, and I realized that in the midst of calling for Lucia’s rights and for real love for her, I, too, have the ability to silence her.

It’s not up to me to decide what’s love or whether or how Lucia receives it.  I realize that as much as I understand the reality of my daughter’s differences, I am not in a position to fathom what love really feels like to her, how she receives it, and how she experiences it.  Those are my own limitations, and it’s not for me to constantly assert her differences when other people see common ground, or to presume that there’s a right or a wrong way to love her.  I realize that perfect love isn’t about the most appropriate gift or words or gesture, but it’s about the desire to engage, to stand with, and to keep trying, even when the caverns seem massive and deep.

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Amy Gabriel of marches in South Jersey.  Photo by Dave Hernandez (Burlington County Times).

So with a humble heart and a contrite spirit, I realize just how tremendous and miraculous your outpouring of support has been, how deeply thankful I am to all of you not only because you’re fighting the good fight, you’ve got my girl’s back, and you’re doing everything you can to be a voice for justice, but because you remind me and are teaching me everyday about what love really means.  You’re teaching me what it really means to let go and let Lucia love and be loved by you.  And it’s not necessarily how I would have imagined it.

But thank God for that.

Thank God that despite our limitations, God somehow uses people to enable love to break through and remind us that God is love–that perfect love looks like undeniable kinship between so seemingly different families, paper cranes, spirited marches, letters to Congress, Lucia’s happiness, and so much in between.  

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Our happy smiles on Saturday.  My photo.

Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.

—–

P.s. The Betsy DeVos vote has been postponed until Jan. 31 so that gives you a week to call your Senator!  See my previous post post-script (hehe) on why DeVos is bad on disability rights and how to call.

P.p.s. The Jeff Sessions vote could be as early as tomorrow!  Call your Senator now to oppose and read this article to see why he’s bad for disability rights, too.

P.p.p.s. Letter writing is effective!  Learn how here and please write to your Congress-people (you have one rep and three senators) asking them to protect state and federal Medicaid for families with disabilities!

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!

 

 

 

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!

On heavenly gazes and wisdom

I have a friend that has a decidedly childlike twinkle in his eye (even though he is in his sixties) and a deeply committed, dry sense of humor.  Because of his multiple sclerosis, he’s also in a wheelchair.  And so it was only a few months ago that it occurred to his friends and family that while everyone else at church had probably gotten to hold Lucia, he hadn’t.

When we placed her into his arms, she settled into his lap and nestled onto his chest and began to make great Herculean gestures to crane her neck to see this new person who was holding her.

That’s how you know Lucia likes you.  That’s how you know she’s interested. And then, she began to gaze up at him adoringly, an intensity of steadfast looking upon that exudes an otherworldly contentment (and that she doesn’t do for just anybody either).

A few weeks later, my friend came to me and talked about that heavenly gaze.  “For just a moment, I would really love to see what she sees,” he mused.

And his words touched me deeply.

You see, given Lucia’s vision challenges, we can’t be certain that she often sees much of anything.  And given her cognitive differences, there’s all sorts of reasons to believe she experiences the world in a limited capacity.  But those are just doctors’ and experts,’ and perhaps even cynics’ hunches.

None of us has ever seen or experienced the world through her eyes.

And here was someone who recognized (perhaps because of his own experience with disability) that able-bodied, neuro-typical people may see and experience the world in one way, but that’s just one way of seeing things.  Here was someone who looked on Lucia and didn’t find her deficient or lacking or wounded but a person of great depth, worthy of interest, and even admiration.

My friend’s words touched me deeply, and something leapt inside of me, because someone seemed to be really seeing Lucia for Lucia!  While we go about our busy days, Lucia finds great contentment in being still and listening.  While we go through days and weeks without touching or holding one another, Lucia finds her greatest comfort and joy in being close.  While we bury our heads in our desks and flitter away our hours with meetings, Lucia has finally mastered looking at people she knows, making small noises, and generously allowing us to brush her teeth.

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One of Lucia’s heavenly gazes.  My photo.

This past weekend when we talked together at church about wisdom, I was rather at a loss.  Wisdom is such a slippery thing to pin down.

What can you say about wisdom that rings true?

But we generally agreed that wisdom doesn’t come from us, it comes from God.  It doesn’t come from our trying and working and hustling and struggling and toiling but seeps into our souls, patiently waiting for us to pay attention to what whispers rather than what is clamoring for our attention.

And so I think about my friend’s words, his desire to know more about what Lucia sees, his childlike heart and humor, and I think how paradoxical and playful wisdom also is.  Wisdom comes to us in the ways of a child, mocking our pursuits, beckoning us to simpler, truer ways.

And it dawned on me: however mysterious and unknown and beyond us, Lucia’s ways are decidedly true.  Lucia’s time is time well spent.  When we try to capture Lucia in diagnoses or deficiencies or developmental charts, the efforts are colossal failures, crude renderings of a life well-lived.

But in gazes and touches and whispers?  Well, I’m with my friend, I want to know more of those.

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.