Tag Archives: special needs parenting

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!

 

 

 

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!

 

 

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.

 

Why luck’s got very little to do with it

“Your daughter is so lucky to have you as parents.”

It’s a phrase we hear quite often from kind people around us who must sense and feel how treasured our daughter, Lucia, who has special needs, is by us.  And I suppose they mean to compliment us, too, to tell us what every parent yearns to hear from time to time from his or her village–that all that work of parenting, the stuff that you do in the trenches doesn’t go unnoticed–that it’s not all for nothing, that even when you don’t feel like it, someone saw you doing a good job and took the time to notice it.

But especially when Lucia was really little, crying day in and day out from neurological and gastric distress, and even sometimes nowadays, phrases like these are often followed by a confession, something like, “I certainly couldn’t do what you do.”

When we were first learning about Lucia’s special needs, my husband confided in me how hard it was to hear words like these, well meaning though they were.  For him, especially, the notion that we were doing anything differently from other parents, or that we were different from other parents, smarted against the ordinary we knew ourselves to be.

I’ve also noticed that such ordinary phrases. not unlike “I’m sorry,” often have the power to divide rather than unite.  When I used to run off to far away places like Mexico or Puerto Rico or China and get to know Christians there, people used to tell me similar things, that they could never do what I was doing, that I was amazing, and that my life seemingly mattered more than theirs.  But that smarted against the reality I knew God to be creating: certain people are not better equipped, because it’s God who does the equipping.  I wasn’t more courageous or better or bolder, I’d had my own doubts and my own fears, and the words that conveyed that I was beyond those insecurities and inadequacies while others lived with them constructed a false reality, a world of dichotomies, a world in which some are quite extraordinary but others are not.

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Illustration by Giselle Potter that accompanied a recent article by Courtney Lund, a woman with a brother with AGS (the same condition as Lucia) in the NYT.

But here’s the thing: parents do extraordinary things for their children all the time, because love is a seeping, pervasive, unwieldy, extraordinary thing that causes us to do all sorts of things we never imagined we could or would do.  And I guess neither my husband nor I want people to forget that.  Sure, we feel encouraged to know that people see Lucia and we as a fabulous unit, but we also don’t want to exist in some weird, alternative special needs universe, where our family is abnormal or an anomaly, so much as one example among many examples of what love can do.

And that’s also what I’m learning.  I’m realizing that whereas it used to feel fundamentally uncomfortable to hear these words and these accolades, I can choose the way I respond.  And I’m beginning to love hearing them, because I get to respond by saying, “Well, we feel truly blessed to be Lucia’s parents.”  And that truth is one that I’m so blessed and compelled to say aloud–that despite the tears and the pain and the heartache, there have been just as many moments of elation, warmth, and joy.  I want people to see the joy and the delight that we have in Lucia, just as any parent has in his or her child.  Something about this response, perhaps like the response “I’m not sorry,” makes me feel that I have a bit more to contribute and to give to this world, rather than an ethos that sets me apart or above it.

Because the truth is also that my husband and I are in the trenches beside all of you, trying to sort our parenthood and do our very best, though our patience often fails us and our compassion can run dry.  But it’s our kids that keep us going.  It’s all our kids–the love that we have for them that is so much better than us–the people we become when we let that love lead us, the people that we are becoming that makes this all something more than luck that we’ve found one another, but rather grace that we get to love one another.

And that’s how I’ve begun to feel when I hear those words, “Your daughter is lucky to have you.”  I’m filled with humility and gratitude and grace, because it’s not so much true that Lucia is lucky.  But I know it to be true that it’s by the grace of God that we’ve been blessed with one another.

 

Virtual tea date

If we were hanging out this morning, I’d be sipping on my favorite casablanca mint tea.  When I’m under the weather as I am currently am, I can’t stand the thought of my beloved coffee; I finally understand what’s so comforting about tea-drinking, and yet, I confess that’s why I always feel like a bit of an invalid when I’m drinking it!

It’s been a whirlwind of a week, packed with teaching for me and unpacking for my husband, but having his family in town broke up the projects and made the follies more tolerable, I think!

One little joy of having his family in town is watching our nieces, especially our youngest, play junior nurse with Lucia.  I’ve noticed that when Lucia screeches and writhes for some unknowable reason and all our lips get a little tight and our hearts a bit anxious, Hannah stands by quite contentedly.  I appreciate that many children, including her, seem to know how to stand by when there are tears and pain and carrying on, perhaps placing a comforting hand or offering a kind sigh, but not trying to rush us others through their feelings.  What a lesson, I think, to be comfortable and at ease with one another’s distress, to be able to witness and hold but not press and prod, maybe offering the best consolation by just being human beings together.

That Hannah is a gem.

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Our evening bliss.  Photo by Evan Schneider.

I’ve begun to allow myself to look forward to all the things we will do in this house, like baking scones in the kitchen, hosting our first overnight guests in just a week, and enjoying more beautiful evenings on the patio.

I’m also hoping there’s enough room left in August for me to get my book off to publishers, put the finishing touches on a few articles, and maybe conjure a few more writing projects!  I’ve been trying to be better about setting and keeping writing goals, and I’ve been inspired by the progress of my students–it pushes me to be a better professor!

We are so thankful that Lucia continues to thrive in her new environment.  There is much to be figured out and much to pray for–she has equipment cliic on Tuesday, her IFSP next week, and we’ll be looking into what to do for school for her, but again, we’re so blessed to be in a state that creates possibilities for our child with special needs.  It reminds me that this anchor that we’ve put down here may yield some limitations, but it’s also what helps us keep our bearings and keep in view that many blessings we have.

…oh, and the Olympics!  I’m so excited!!!

What are you up to this weekend?

 

 

 

 

Learning to hope again

“For in hope we were saved.  Now hope that is seen is not hope.  For who hopes for what is seen?  But if we hope for what we do not see, we wait for it with patience.”  –Romans 8:24-25

A few months ago I began prepping a sermon on Romans 8, focusing on the two verses that come after these ones.  In fact, the part that comes next, about how “when we do not know how to pray, the Spirit intercedes for us with sighs too deep for words” (Romans 8:26), is one of my favorite passages in the Bible.  I love silent prayer and contemplation, and so I began scribbling down all sorts of ideas as I was brainstorming to preach.  I don’t even remember what I wrote down at the time, but one of the ideas was something like, “God dares us to hope again after loss, pain, and fear.”

I put my notebook away, and I went onto write the sermon a day or so later, preach it, and presumably move on.

But still, that message about hope was calling me.  

In fact, months later, I’m still thinking about it.  What that passage and my reflections on hope began to reveal to me is that faithfulness in this season of life, especially with Lucia, has often involved letting go of our expectations in order to love her as she is and celebrate her life.  This has been such a good and Godly way of learning to love, and especially when we’ve often stood in the balance of not knowing when the next crisis will strike or when we may need to let go, it’s been a powerful and fruitful way to live.

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Holding Lucia on her first birthday.  Photo by Andrew Nurkin.

But I also realize now that as we’d let go of expectations and fully embraced the uncertainty of our lives together, we’d not been particularly welcome or wont to hope.

Indeed, a few months ago, another parent said something casual to me like, “I’m just so looking forward to when she can do X…”  Yet another chirped, “Don’t you just look forward to each stage?”  The statements were remarkable because I realized, not mournfully or proudly, but simply and practically, that I certainly didn’t have the same hopes for Lucia.

But that doesn’t mean I can’t have hopes.

Something has shifted over the past few months for me.  Perhaps it’s because Lucia’s joy–her smiles, her giggles, are so contagious that we can’t help but want for more.  Perhaps it is because we’ve begun to realize that there’s a certain faithfulness (where perhaps we once thought it mere naiveté or denial) to believing and looking forward and wanting more for your child even when the future (gosh, everyone’s future!) is always uncertain.  “Who hopes for what is seen?” Paul asks, and it dawns on me that all hope is outrageous and audacious and almost senseless.  It dawns on me that true hope, hope despite fear, loss, and pain, is the most outrageous of them all, but deeply, wildly, and decidedly faithful.

What’s striking to me in this season is that even as Lucia’s daily health challenges continue, I think God is inviting us to dream a bit, to hope a lot, to envision a great and glorious and good life, even if it’s completely uncertain, for our daughter with special needs.

This is a huge shift for me…and it’s a little scary.  

And it’s not the sermon I preached that Sunday.  In fact, to this day, I don’t know how God did that–helped me write a sermon for others even as God prepared a sermon just for me.  And I am wary, as I always am, too pensive and critical, because hope for many often takes the shape of bi-ped hubris, therapeutic progress, or medical cures for Lucia, and I feel distinctly called to inhabit this tension of living and loving her now, and yet loving and hoping for her tomorrow, too.

So I find hope in the home we are making for Lucia, in the thought of her making friends at school someday, touching so many lives as she does ours everyday, teaching others, reaching out for babies and friends and strangers, and having many more swims and smiles and heroic turns of her head toward the things and the people that she wants and cares for!  These are my small, perhaps tentative, but genuine, prayerful, and faithful hopes for my daughter.

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Our little light looking for the light on a recent walk around the neighborhood.  My photo.

We will always savor the present, but we find new hope in the future with God’s help.

 

 

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???

Why I’ve learned to see gifts where others see limitations

The tenure track job.

It came up again today in conversation and I heard myself explaining away Lucia as somewhat of a limitation, a barrier to my acceptance of a prestigious position at a faraway university, and the words stung on my lips.  I didn’t like the way they sounded, not because of what they necessarily made Lucia out to be, but as to what they failed to communicate about my life with her. We may not be in China or Europe or even the Midwest anytime soon given that moving, let alone traveling with Lucia is daunting, but I’m starting to see that parameters aren’t always limitations, but often, good and wonderful gifts.

When I focus on the things I can’t or no longer do as Lucia’s mother, I neglect the way in which our tax payment to the state of New Jersey took on new, holy meaning this year, as we’ve become so gracious for the services our daughter receives from the state everyday.  Even the fact that we are seemingly grounded here because of Lucia’s state services misconstrues the amazing provision that we just happened to have a special needs child in one of the states with the greatest benefits for such kids.  Lucia wasn’t accidentally born into such a blessing, but wonderfully, purposefully so.

And then there’s the incredible academic rebirth I’ve had as a result of learning to love Lucia.  Whereas I was already studying foster children with disabilities in China, my experience with Lucia pushed me to develop and teach a new course on “Disability and Difference” at Princeton, to write on my personal experiences, and to begin to combine my scholarly and personal pursuits.  My journey alongside Lucia to reconceptualize diversity, justice, and faith through the lens of disability has been revelatory, and I am so grateful for her guidance.

There’s a really mixed bag here because I often suffer with Lucia, and I also struggle to comfort her, understand her, and help her.  I feel firmly that Lucia’s daily struggles shouldn’t be eclipsed by my own growth or edification.  But several years after God acquainted me with foster families raising children with disabilities in China who made us want to become parents, then God granted us our one-in-a-million Lucia.  I seek to embrace what God has shown me as God teaches me so profoundly that my daughter is fearfully and wonderfully made.

Another thing that I see is God melding these seemingly separate lives–that of the scholar, the pastor, and the parent–in far more intentional ways than I ever could.  In other words, we have partially stayed in New Jersey because of Lucia’s special needs, but I’ve also stumbled upon an opportunity to minister and teach and care for my child here that is life-giving and good.  The gift of living life alongside Lucia has taught me that life is not always as it seems, because there is blessing in what God builds amidst difficulty, sacrifice, and challenges.

In a recent blog post, a friend of mine wrote about how much his son with special needs has taught him not just about life but about the Bible and about God.  The truth is so much of Lucia’s giftedness is in revealing to me my own limitations, in enlightening me in what God is already doing, and in inspiring me to be a better follower, servant, and mother.  Lucia shows me the fullness of life, not in her limitations, but in our mutual, challenging, deep relationship, and I am deeply grateful.  Lucia continues to push me to fulfill my purpose in God and for others.

I might have said then, that Lucia is hardly a limitation–rather she is a gift.

She is a person that has made my life so much more meaningful than it could have been otherwise.  From one vantage point, her life has placed certain constraints on my own, but I believe she has also grounded me to see and experience the gifts and the goodness of God anew.  She has pushed me to reevaluate that tenure track job, not because I can’t have it or she doesn’t want me to have it, but because it doesn’t necessarily represent promise, privilege, or prestige that really matters.  She pushes me to live a life that matters, a life worthy of the calling I have received: she makes me whole in a way I could never have conceived.

And so I say, thank you God, for this good and perfect gift.

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Lucia staring into her Daddy’s eyes during a recent hospital stay.  My photo.