Thanks to so many of you who called, wrote letters, and spoke to your members of Congress, I feel like I can breathe again for the first time in weeks. I feel hope and lightness and strength, and I can’t thank you enough!
But most of all, I feel like the outpouring of support reminds me that while I can’t take it for granted and the fight to protect people with disabilities, the poor, the elderly, and the most vulnerable in our country is far from over, I hear that the voices who value those lives in this country have gotten louder, more expressive, and more proud. A few days ago, the burden that I felt to make my daughter’s story and her value known felt very singular and heavy. But what’s so sweet about hope is that burdens are lifted when responsibility and love and care become shared.
Thank you so much for sharing our burden, but most of all, thank you for realizing that Lucia’s life has never been and doesn’t deserve to present a burden to her or to us or to any family who just wants their child to grow and thrive. Let’s keep fighting so that we can all keep growing by living in a society that values so many different kinds of people and deems them all worthy of health, education, life, and love.
Onward, my friends. And thank you for renewing my hope!
Tears came to my eyes and my voice cracked as I told my mom over the phone today,
“It was only recently that we found a way to stop worrying that Lucia would die and decided to love her so fiercely and just live life together. And now we’re afraid everyday that she might lose the benefits that make her life so wonderful.”
How can we when our private employer insurance granted through one of the most prestigious universities in the world denies all the things she needs from in-home nursing services to wheelchairs to surgeries and nearly everything in between?
We’ve learned the hard way that private insurance companies will never cover Lucia’s needs because they’re deemed too expensive, too rare, too disadvantageous. So when Lucia was 6 months old, I began filling out paperwork for New Jersey state Medicaid, a process so complicated I could hardly navigate it, even though I have a Ph.D., a Masters, and a Bachelor’s degree. For 6 months we paid out of pocket for all the things that our employer plan wouldn’t cover and we racked up nearly $10,000 in medical expenses.
But things started to shift when we got the first person from the state’s Early Intervention program into our home; she took one look at Lucia shrieking in pain and me helpless to comfort my child and told me, “You shouldn’t have to do this alone. We can help.” And I will never forget those words. 6 months later when Lucia got onto the NJ State Medicaid MLTSS program (Managed Long Term Special Services for kids with outstanding medical needs and disabilities), everything changed. Suddenly, our secondary insurance through the state stepped in to pick up the tab on the myriad of services our private insurance denied. Those giant insurance bills and many of our worries about how we could pay and support her future melted away.
We felt that we had found an incredible safety net in the state of New Jersey. We bought a house here in a school district well-known for going above and beyond for supporting kids with special needs. And Lucia has been taking the bus to a wonderful special needs school; the social worker in our district has been undyingly supportive of our requests. The school district is willing to foot the bill for those bus trips, special equipment, and extra support in the classroom. And Lucia comes home from school everyday babbling (literally babbling) and smiling and laughing because she couldn’t be happier.
But I’m begging you to not take any of this (and this is really what makes America great) for granted either. Indeed, I am so thankful to live in a country where I can speak out and where my voice can make a difference. I have spoken to my member of Congress; he’s a Republican, but he’s willing to fight to protect both the NJ MLTSS program and the Medicaid expansion because he knows how much they matter to families like ours. And I’m thrilled. I have hope, but I am also stressed. Living and loving a child whose circumstances are so uncertain has never been easy. And doing so now when you feel like you have to fight for the very programs that have made such a difference is something I barely have time for in between all those medical appointments and insurance calls and nursing schedules and therapy visits.
But, you guessed it–I don’t take any of that for granted either.
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.
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.
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.
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.
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.
“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.
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.
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.
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!
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.
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.
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.)
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.
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?
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.
“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.
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.
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.
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.
“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.
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.
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.
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.
“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.
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.
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.
We will always savor the present, but we find new hope in the future with God’s help.