If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!
Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall. All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.
If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.
But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.
So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.
Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy. I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there. I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.
I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention. I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!
For those of you who know me well, you know I’ve spent the last year reading almost everything I can get my hands on about the Enneagram and I’ve become somewhat of an evangelist for the personality tool among my friends and family.
Ironically my first foray into the Enneagram was not so entrancing–when I had to do a routine psych evaluation for ministry preparation, the instructor rather used my found type against me, arguing that perhaps it explained my aggression, hostility, and even atypical masculine characteristics! Among people who know the Enneagram well, it’s not a secret that female 8s get a bad rap and are often misunderstood. So that’s why it’s all the more profound that a few days ago, I think I finally realized what’s so powerful and meaningful about being an 8 in this world–a personality I haven’t always found so compelling or easy to live with.
Now if you’re new to the Enneagram, it may sound like I’m speaking another language. But simply put the Enneagram is a personality system that groups our personalities into 9 types, but unlike Myers-Briggs or other personality systems, you’re not easily diagnosed through a test, because it’s a dynamic, interactive, relational system. According to the Enneagram, the best parts of you are also the worst parts of you, so people don’t always find it “easy” or “happy” to find out their types, but thankfully, the system also allows for and encourages dynamic growth.
For my own part, and especially as an anthropologist, I think the Enneagram’s best, most basic reminder is that even if we’re from the same family, we don’t necessarily see the world the same way. But other ways of seeing aren’t bad; in fact, they’re what make the world a much more interesting and beautiful place! One of the best takeaways for me from learning the Enneagram is not just understanding myself better but also building more compassion inside myself for others in respecting and empathizing with the beautiful, perplexing ways they approach life that make the world a much more complicated, but fuller place. Essentially the Enneagram affirms one of the basic tenets of anthropology: our differences make us human!
Therefore, if you’re interested in learning more about the Enneagram and even figuring out your type, I’d recommend that you read about all the types, and perhaps in lieu of taking a test, read some of these great descriptions of each type, paying attention to the core values, the things that make you tick (you can scroll down for my suggestions for further resources below). Enneagram types are complex in that they don’t tell you what a person’s vocation will be or whether they will be successful, but rather tell you more about that person’s motivation in life and some of the challenges they face and gifts that they possess.
But as I mentioned, when a lot of people find out their Enneagram type, they recognize it primarily because of the flaws they can see so clearly in themselves, while they fail to acknowledge or hone the strengths that inhabit their way of seeing the world. As an 8 (with a 7 wing), “the challenger,” someone who is a natural born leader, makes decisions incredibly quickly, and is fearless, I had been really struggling with an experience of vocational discernment as of late. In fact, because of these impetuous and quick-witted qualities, I kept remarking to my “spiritual director” that I suck at discernment: the waiting game, the listening game, the methodical weighing of options is just not me. And as someone who is much more inclined to rely on my mind rather than my heart, I bemoaned my lack of intuition.
However, this type of thinking ignores some of the qualities which make 8s truly exceptional. Because of my gusto, I am truly and uniquely fearless. This certainly becomes a weakness in that I may struggle to emphasize and understand the insecurities others often face on a daily basis, but in my own life, when I see a challenge, I am invigorated, affirmed, and inspired. Sign me up, I think. I’m all about taking risks, I scoff. Bring it on!
Thus, in my life when I have been able to reframe uncertainty and discernment as a challenge, I’ve been able to very quickly embrace the adventure that God has in store for me, not worrying about the consequences or the trials of that risk but plowing full steam ahead. (As I told one of my friends recently, I may be a battering ram, but I can be a battering ram for Jesus!) What I’ve noticed in discernment and uncertainty, though, is that I have a tendency, as many of us do, to try to usurp control (how very 8 of me) from God. I spin into full-on planner mode, determined to think through the details of my future, when the very best that God has for me may not even be visible yet.
My spiritual director has invited me to ponder God’s faithfulness by asking me, “Think of the five greatest things in your life. Which ones were you responsible for? Now which ones did God provide?” Indeed, as a person of faith, in spite of any Enneagram personality knowledge, I am committed to living the life that God has for me. And I’ve realized that this involves abdicating my long-term planning role to God. Ironically, uncertainty and long-term planning are two things that in my penchant to control, send me spiraling out of control, leading away from my strengths and gifts as a passionate 8 who leads with vision and conviction.
I’m not alone in these insights, though. There are many, many people of faith who have begun to draw upon the Enneagram for wisdom not just about who we are, but who we are in God. For me, I’ve started to see how unique it is that I love a good challenge and that I’m not afraid, and I’ve become even more convicted to strive toward the unique vocation (somewhere between anthropology and ministry) that God has for me, even though the world may not always understand that call. 8s are often known for being resilient and strong, and I realize now that this takes “guts.” Even though I may lack for what I termed intuition, I am at my best when I’m relying on and hungering after God, throwing all of myself into that new challenge and adventure!
How has the Enneagram helped you live more fully into your purpose in God? What lessons have you learned about God and faith by getting to know yourself better?
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.
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.
This season I’ve been intentionally quiet, quiet mostly in the mornings but also quiet on the blog. This Advent, I’ve tapped back into my practice of Lectio and Centering Prayer. I’ve been reading the prophetic scriptures from Isaiah and the journey to Bethlehem in Luke as the Syrian city of Aleppo crumbles, lives are lost, and great fear reigns throughout our world.
I haven’t known how to respond to all the darkness, have you?
I should speak out, I think, say something like Isaiah, the prophet, reminding us how to follow a God who is not of this world, a king who is not violent, but gentle and humble and an outsider.
Is silence surrender in the face of such great evil, especially in a season that proclaims resounding joy, reconciliation, and peace?
I strive to work for justice in fits and spurts, donating, signing petitions, calling my congresspeople, but in the mean time, in a faraway land from where our savior was born, I hope that my silence meets God’s faithfulness. You see, what I have always found so powerful about centering prayer is that I’m not doing anything–and that’s the point. Because if prayer is just one more thing that we do, let alone one more thing that I presume to muster of my own wisdom and accord, then it is anything but a holy offering or a right relationship to God.
And so as we wonder how to respond, I wonder, whether as always, if it isn’t less about us and more about God–God’s saving action in the world? I am patient in this season to listen but not to listen without responsibility. I listen and trust and charge God with all God is always doing to offering healing, respite, and reprieve. And I wait for God to give me the words, the actions, and the steps to be an instrument of peace this Advent season.
If you’re interested, there are over 30 posts in the category “Centering Prayer” on the blog.
Here are also a few posts from past Advent reflections and practices:
Finally, I’d be interested in hearing from any of you who are struggling in waiting this season. It strikes me that waiting and silence feel particularly cheap in a season where this so much violence and need. What is God teaching you? Where is God leading you?
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!
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.
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.
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.
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.
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.
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.
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!
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?
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.
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.