I'm continuing last year's tradition and writing nearly every day during the month of October in honor of National Down Syndrome Awareness Month. So many friends and family members have told me how helpful these posts have been to their understanding of Down syndrome, of families with disabilities, and of our Moriah.
I'd like to invite you read along with me as I post at this link each day.
Wednesday, October 9, 2013
Monday, September 23, 2013
Healed Heart Day Anniversary
Tomorrow marks four years since Moriah's five-hour open heart surgery. Four years ago, they broke my daughter's chest open, cooled her body, placed her heart on bypass, and put their fingers on two very large holes in her heart, patching them up perfectly.
In honor of the anniversary, I re-read tonight my posts from that day and the days that followed.
And I cried. It is no small thing to remind yourself how hope and grace surrounded, even on such a difficult day. It is no small thing to have a child resurrected. It is no small thing to give thanks for a gift so very, very large.
Tomorrow is Moriah's Healed Heart Day. I am not sure what your plans are tomorrow. I teach a full schedule on Tuesdays, instructing writing students at the community college from 9:15 until 1:45, without a break for lunch. But tomorrow we are talking about an unusual speech--David Foster Wallace's "This is Water" commencement address--and as so often happens as a teacher of writing (or rather, a teacher of thinking), I have opportunity to talk about really important stuff with a group of really important, really cool people. So tomorrow we'll talk about the speech and about the mindfulness practices of our lives and the choices we make about how we think about living. And I will pass around a photo of Moriah post-surgery (the one I've posted below); I keep this very one in a beautiful glass frame on my desk at work. Tomorrow I will tell my students why it sits there.
I keep this photo near me at work because we all need reminders--in our every day lives--of the sacredness, the extraordinary-ness, that living itself can be. Moriah's photo marks the holy for me, and calls me into the wonder of long, ordinary, and sometimes tedious or suffering-filled days. Moriah's photo says: I am here. I have survived. I am alive. And life is a gift, not a given.
Wallace would say, this is water. I say, this is grace. And tomorrow I will ask my students to honor Moriah's healed heart day by healing their own heart or someone else's with forgiveness; by extending a bit of kindness to a stranger; by taking a minute to slow down and breathe and see existence for what it is--fragile and awful and beautiful and all.
Sometimes, we pass through the terror and have just a chest-scar to show for it. But if we are lucky, and Moriah and I have been, we pass through with the scar...and a sense of wonder at the grace that is sometimes, unexpectedly ours.
I hope you will join my students and I tomorrow in making your day a day for healing hearts, especially your own. You are alive. You are a gift. And this is no small thing. This, friends, is grace.
In honor of the anniversary, I re-read tonight my posts from that day and the days that followed.
And I cried. It is no small thing to remind yourself how hope and grace surrounded, even on such a difficult day. It is no small thing to have a child resurrected. It is no small thing to give thanks for a gift so very, very large.
Tomorrow is Moriah's Healed Heart Day. I am not sure what your plans are tomorrow. I teach a full schedule on Tuesdays, instructing writing students at the community college from 9:15 until 1:45, without a break for lunch. But tomorrow we are talking about an unusual speech--David Foster Wallace's "This is Water" commencement address--and as so often happens as a teacher of writing (or rather, a teacher of thinking), I have opportunity to talk about really important stuff with a group of really important, really cool people. So tomorrow we'll talk about the speech and about the mindfulness practices of our lives and the choices we make about how we think about living. And I will pass around a photo of Moriah post-surgery (the one I've posted below); I keep this very one in a beautiful glass frame on my desk at work. Tomorrow I will tell my students why it sits there.
I keep this photo near me at work because we all need reminders--in our every day lives--of the sacredness, the extraordinary-ness, that living itself can be. Moriah's photo marks the holy for me, and calls me into the wonder of long, ordinary, and sometimes tedious or suffering-filled days. Moriah's photo says: I am here. I have survived. I am alive. And life is a gift, not a given.
Wallace would say, this is water. I say, this is grace. And tomorrow I will ask my students to honor Moriah's healed heart day by healing their own heart or someone else's with forgiveness; by extending a bit of kindness to a stranger; by taking a minute to slow down and breathe and see existence for what it is--fragile and awful and beautiful and all.
Sometimes, we pass through the terror and have just a chest-scar to show for it. But if we are lucky, and Moriah and I have been, we pass through with the scar...and a sense of wonder at the grace that is sometimes, unexpectedly ours.
I hope you will join my students and I tomorrow in making your day a day for healing hearts, especially your own. You are alive. You are a gift. And this is no small thing. This, friends, is grace.
Thursday, August 15, 2013
Old friends
(a re-post from Facebook)
Am I dissertation-ing while on retreat this week? Why yes, I am.
Still, it's not a bad life: Sitting in a bagel cafe with unlimited serve-yourself coffee, surrounded by mountains in the Monadnock valley, returning in a couple hours to family and very, very dear friends.
One of the greatest helps of our Moriah-life has been, in fact, these old friends. Jason's college roommate became a good friend of mine, too, as Jason and I began dating, became engaged, and were married (his buddy was in our wedding and was a sort of go-to guy in lots of ways in those early years; he and Jason even worked for the same engineering company for some time together in those early dating and married days). Later, when his buddy married (an amazing woman Jason and he had both known from college), Jason was in their wedding, and we were both there to celebrate the start of their life together.
Years later, they birthed a child with Down syndrome. Nearly two years after that, we did, too.
How does that happen? How do two college buddies both end up with very similar sorts of kids, and struggles, and heartache?
It's the most weird and delightful sort of mystery. But I know this: Without these friends, we would not have survived that first week of Moriah's birth; they came and sat with us in the hospital, and were among the few who dared to weep with us. They completely accepted, permitted, and understood our shock, terror, rage, and devastation. A couple months later, they sat with us through Moriah's open heart surgery. And they have been there--especially when we've been able to make these summer retreats--in countless ways for us since.
Sometimes when I'm with them (as we are this week), I have the strange feeling that we are the people we were 20 years ago when we first met. Or 16 years ago at our wedding, or a dozen years ago at theirs. And then I see all our kids running around, and how tired we all are, and how much more resolutely and realistically seeking God and love and hope, and I realize we are in so many ways not those people at all.
It makes me sad and very, very happy, both.
Here's what I'm loving this week: The familiar ways of old friends, the tried-and-true hugs, the mugs of coffee we share, the laughter that stretches back for decades, and the circle that continues to widen as we welcome new friends to our fold. Being with them is a re-tracing the history of us, finding our mooring again, and gaining the courage and the hope to open our arms to change and transformation one more time.
Am I dissertation-ing while on retreat this week? Why yes, I am.
Still, it's not a bad life: Sitting in a bagel cafe with unlimited serve-yourself coffee, surrounded by mountains in the Monadnock valley, returning in a couple hours to family and very, very dear friends.
One of the greatest helps of our Moriah-life has been, in fact, these old friends. Jason's college roommate became a good friend of mine, too, as Jason and I began dating, became engaged, and were married (his buddy was in our wedding and was a sort of go-to guy in lots of ways in those early years; he and Jason even worked for the same engineering company for some time together in those early dating and married days). Later, when his buddy married (an amazing woman Jason and he had both known from college), Jason was in their wedding, and we were both there to celebrate the start of their life together.
Years later, they birthed a child with Down syndrome. Nearly two years after that, we did, too.
How does that happen? How do two college buddies both end up with very similar sorts of kids, and struggles, and heartache?
It's the most weird and delightful sort of mystery. But I know this: Without these friends, we would not have survived that first week of Moriah's birth; they came and sat with us in the hospital, and were among the few who dared to weep with us. They completely accepted, permitted, and understood our shock, terror, rage, and devastation. A couple months later, they sat with us through Moriah's open heart surgery. And they have been there--especially when we've been able to make these summer retreats--in countless ways for us since.
Sometimes when I'm with them (as we are this week), I have the strange feeling that we are the people we were 20 years ago when we first met. Or 16 years ago at our wedding, or a dozen years ago at theirs. And then I see all our kids running around, and how tired we all are, and how much more resolutely and realistically seeking God and love and hope, and I realize we are in so many ways not those people at all.
It makes me sad and very, very happy, both.
Here's what I'm loving this week: The familiar ways of old friends, the tried-and-true hugs, the mugs of coffee we share, the laughter that stretches back for decades, and the circle that continues to widen as we welcome new friends to our fold. Being with them is a re-tracing the history of us, finding our mooring again, and gaining the courage and the hope to open our arms to change and transformation one more time.
Wednesday, July 24, 2013
Playground Conversation
If you follow me on Facebook, you know how excited I was to take our family tenting last week. Our family hasn't been in a tent since well before Moriah's birth. We've planned camping trips since she arrived, but every summer we have had to cancel the trips because Moriah has been too sick.
Last Thursday, we actually did make it camping to a nearby campground...and had to come home after 20 or so hours away. The heat wave was too much for Moriah, whose breathing overnight that first night was too labored for our comfort. Jason and I stood on the campground's playground in the early morning hours while Moriah climbed its play structure and made the decision to come home even though it meant undoing nearly a week's worth of work--those of you who tent know how much time it takes to re-check equipment, to plan campfire meals, and so on. I sent Jason back to the campsite to begin dismantling our tents and re-packing our van, and as he left, I had myself a really good, disappointed-again cry. And then, as sometimes happens in life, something really extraordinary happened IN (not because of, or in spite of--this truth has taken me a long time to grasp) my disappointment.
A little boy--let's call him Joey--came bounding into the playground. He wasn't wearing pants, just his bundies, which I thought was a little strange. But hey, pant-less or no, Moriah had someone with whom to play (there was another, older boy on the playground who hadn't been too friendly to her, so I was relieved to see another playmate come along). Joey found the other boy to be mean and too rough, and formed an alliance with Moriah. When the other boy tried to trap them in the underbelly of the play structure by barricading the door to the playhouse there, Joey led Moriah out the other way, underneath the slide, and into the open field. He held her hand. He chatted incessantly to her, and even when she didn't respond, he was completely unphased, and kept talking. Joey: Moriah, want to go to the top of the slide again? Moriah: Yeah. Slide. Joey: I love slides, don't you? At home I have a swingset with a slide in my yard. It's yellow. Do you have a slide? Moriah: C'mon! It warmed my heart to see the very tender, very kind way he befriended Moriah, and the way she walked with him and followed him from the play structure to the sandbox to the pretend car--around and around they ran, playing and talking for nearly an hour.
About 30 minutes into their friendship, and well after the other less-than-kind boy had left, Joey's grandparents came bounding into the field--apparently Joey had left the family tent without waking his sleeping family (which explains why he was pantless). I pointed Joey out to them, hidden underneath the play structure with Moriah again, and told them how well he had been playing with her. And then something extraordinary happened. The grandpa watched the two of them for a minute or so, and said to me: "I just love kids. I don't think Joey even sees her disability at all."
Here's why his comment was so amazing: very, very rarely does anyone, especially a stranger, talk about Moriah's disability outright, and with kindness and warmth. I bear my share of rude comments from ignorant folks (questions about whether I "knew" before she was born and if I had known, whether I would have "kept" her and that sort of thing), and I get a lot of sugar-y nice generalities (comments about how "beautiful" she is, as if beautiful is some sort of stand-in for "special" or the unspoken "Down syndrome"). Right away, I liked this grandpa. We struck up a conversation then that lasted a half hour--turns out Joey's grandpa considers it his "life's work," his "soul's work" to work in a home for adults with developmental disabilities. He's done it for decades, and still loves it, and laments only the twenty-somethings who work there as a way to "get" somewhere else, who miss the beauty of the people who live there. He told me about learning to understand the people at the home as people, not as disabled people. He told me about Joey and Joey's speech delay (which, in my estimation, had all but resolved given Joey's profuse talking). It was, for this mom disappointed again by the limitations of life-with-Down-syndrome, a refreshing exchange and absolutely timely.
I wanted to write about the experience here because I think it's important that you hear this from me: I would rather talk about Down syndrome than not talk about it. I'd rather you say the word "disability" outright. I already know that Moriah has Down syndrome, and talking about it makes it less difficult, not more so. We can no longer pretend to be the Joeys of the world--running around half-naked and blissfully unaware of the differences among us (and what we do or do not have). That was a beautiful, amazing stage, and one we cannot visit again. We are adults, and when we gather on the playgrounds of life to share our stories, we should do so with our eyes wide open and our hearts laid bare. When we do, we can lay claim again to this truth: Our lives are not so much about what happens (or doesn't) to us. They are about the growth of our souls within those goings-on.
Our lives are soul work. Joey's grandpa told me that.
Last Thursday, we actually did make it camping to a nearby campground...and had to come home after 20 or so hours away. The heat wave was too much for Moriah, whose breathing overnight that first night was too labored for our comfort. Jason and I stood on the campground's playground in the early morning hours while Moriah climbed its play structure and made the decision to come home even though it meant undoing nearly a week's worth of work--those of you who tent know how much time it takes to re-check equipment, to plan campfire meals, and so on. I sent Jason back to the campsite to begin dismantling our tents and re-packing our van, and as he left, I had myself a really good, disappointed-again cry. And then, as sometimes happens in life, something really extraordinary happened IN (not because of, or in spite of--this truth has taken me a long time to grasp) my disappointment.
A little boy--let's call him Joey--came bounding into the playground. He wasn't wearing pants, just his bundies, which I thought was a little strange. But hey, pant-less or no, Moriah had someone with whom to play (there was another, older boy on the playground who hadn't been too friendly to her, so I was relieved to see another playmate come along). Joey found the other boy to be mean and too rough, and formed an alliance with Moriah. When the other boy tried to trap them in the underbelly of the play structure by barricading the door to the playhouse there, Joey led Moriah out the other way, underneath the slide, and into the open field. He held her hand. He chatted incessantly to her, and even when she didn't respond, he was completely unphased, and kept talking. Joey: Moriah, want to go to the top of the slide again? Moriah: Yeah. Slide. Joey: I love slides, don't you? At home I have a swingset with a slide in my yard. It's yellow. Do you have a slide? Moriah: C'mon! It warmed my heart to see the very tender, very kind way he befriended Moriah, and the way she walked with him and followed him from the play structure to the sandbox to the pretend car--around and around they ran, playing and talking for nearly an hour.
About 30 minutes into their friendship, and well after the other less-than-kind boy had left, Joey's grandparents came bounding into the field--apparently Joey had left the family tent without waking his sleeping family (which explains why he was pantless). I pointed Joey out to them, hidden underneath the play structure with Moriah again, and told them how well he had been playing with her. And then something extraordinary happened. The grandpa watched the two of them for a minute or so, and said to me: "I just love kids. I don't think Joey even sees her disability at all."
Here's why his comment was so amazing: very, very rarely does anyone, especially a stranger, talk about Moriah's disability outright, and with kindness and warmth. I bear my share of rude comments from ignorant folks (questions about whether I "knew" before she was born and if I had known, whether I would have "kept" her and that sort of thing), and I get a lot of sugar-y nice generalities (comments about how "beautiful" she is, as if beautiful is some sort of stand-in for "special" or the unspoken "Down syndrome"). Right away, I liked this grandpa. We struck up a conversation then that lasted a half hour--turns out Joey's grandpa considers it his "life's work," his "soul's work" to work in a home for adults with developmental disabilities. He's done it for decades, and still loves it, and laments only the twenty-somethings who work there as a way to "get" somewhere else, who miss the beauty of the people who live there. He told me about learning to understand the people at the home as people, not as disabled people. He told me about Joey and Joey's speech delay (which, in my estimation, had all but resolved given Joey's profuse talking). It was, for this mom disappointed again by the limitations of life-with-Down-syndrome, a refreshing exchange and absolutely timely.
I wanted to write about the experience here because I think it's important that you hear this from me: I would rather talk about Down syndrome than not talk about it. I'd rather you say the word "disability" outright. I already know that Moriah has Down syndrome, and talking about it makes it less difficult, not more so. We can no longer pretend to be the Joeys of the world--running around half-naked and blissfully unaware of the differences among us (and what we do or do not have). That was a beautiful, amazing stage, and one we cannot visit again. We are adults, and when we gather on the playgrounds of life to share our stories, we should do so with our eyes wide open and our hearts laid bare. When we do, we can lay claim again to this truth: Our lives are not so much about what happens (or doesn't) to us. They are about the growth of our souls within those goings-on.
Our lives are soul work. Joey's grandpa told me that.
Saturday, July 13, 2013
Happy birthday to my favorite girl
Dear Moriah,
You are in bed asleep; our day was so full, and began so characteristically early, and you didn't nap this afternoon and so by 6:30 tonight you were exhausted and went to bed without our routine books and prayer. But what a day it was--your fourth birthday! This is the first year that you've understood, really understood, what a "birthday" is. Last night you couldn't fall asleep because you were so excited; you kept calling me back to your bedroom to tell me something else about your birthday ("Mom, cake! Ice cream! Open presents!") or to sing (yet another) chorus of Happy Birthday to yourself ("happy birthday, Moriah, happy birthday to you") or to demonstrate for me how to blow out candles. I hope the day was as happy as you anticipated; we were able to spend most of the day today at Papa and Gramma's house with your cousins, and I know that for you, any day with cousins at your grandparent's house is a happy one indeed.
I think this is the first birthday that I've also really understood. What I mean is, I've understood it as your birthday, and it hasn't made me at all sad. Yesterday I was baking birthday cupcakes for you and suddenly remembered something I had forgotten about the day you were born: Orilus and Jackson had brought a birthday cake they had made with them to the hospital, so that we could celebrate your very first day of life together.
This had been my idea, a way to help them, too, to feel included in the day you were born. And yesterday I suddenly had this flashback: the cake pan sitting, untouched, in the hospital room all that day, a sort of sad symbol of things that didn't go at all as we had expected. I think that cake traveled with me in an ambulance, as I rushed the next day to follow you to Boston; eventually, Dad took it home, completely unopened and uneaten.
We didn't celebrate your birth-day, Love. We were all just too surprised with you, and too worried about you.
I remembered this cake in its covered pan yesterday, and you know what I did, Moriah? I laughed. Here we are, girl, four years later, eating pink-frosted cupcakes at 7 o'clock in the morning, watching you attend to your brand-new dollhouse (all I can say about that gift is that you must have really changed my life, my dear, because anyone who knows me cannot possibly fathom how I disciplined myself to spend the 40+ hours I've spent in this last month painting and putting together that yard sale find with your dad), listening to you talk to the Dad-doll as you forced him into a dining room chair ("No sleep. You eat. Sit down right here. C'mon!"), laughing as you gasp in surprise at (yet-another) Elmo video from your really patient and kind older brother, taking you a ba-zillion times to the potty today (you are nearly potty trained and we are so proud of you), watching you give your cousins huge hugs (Them: "Hug me again, Moriah!" You: "Squeeze!"). You are the girl of nose kisses, laughter, a strong will, smarts, and love. You have a way with babies (Miss Julie likes to call you the "baby whisperer") and music and basketball (you can dribble now and are pretty proud of yourself).
You climb stairs--up and down--on your own now, and you continue to jump despite the therapists' declarations that you probably wouldn't. You love to read--you read a couple books on your own now, pointing to each word and getting that "I'm so pleased with myself" look again and again. You are learning to swim--we had so much fun in your swim class this morning--and to go across monkey bars. You love to throw rocks in the pond at the end of our street. And--as you did before bedtime tonight--you love to bring people together, this time, grabbing your Dad and me and insisting that all three of us give one big giant hug.
That's you, Moriah--the girl who connects folks to each other.
Four years ago, when terror gripped our hearts and worry flooded into our lives, we couldn't have anticipated this day. Today, Love, we celebrated you. I didn't remember your birth-day with any sadness today; I didn't think about your future with any fear. Not once today did I even think about Down syndrome. Today was just about YOU, Moriah--amazing, remarkable, funny, beautiful you.
For many years now I've been telling you that you are my "favorite girl." This started as kind of a joke with your brothers, who always wanted to know which of them was the favorite when they were little. By calling you my favorite girl, I was choosing no one, and everyone. This year I've said to you nearly every day: "Moriah, out of ALL the girls in the world, YOU are my favorite." And Moriah, if there's one thing I hope you get in this life, it's this: Your mom thinks you rank right up there with the most accomplished, most inspiring, most interesting, most wonderful women who have ever walked this earth. You are the girl I most admire. For all you've overcome, for all you work with and through every day, for all the joy you are to all of us who know you, and for the particular gifts of groundedness, joy, and acceptance you have brought to my life...
...happy birthday to my favorite girl.
I'm in love with you, always.
Love,
Mom
I think this is the first birthday that I've also really understood. What I mean is, I've understood it as your birthday, and it hasn't made me at all sad. Yesterday I was baking birthday cupcakes for you and suddenly remembered something I had forgotten about the day you were born: Orilus and Jackson had brought a birthday cake they had made with them to the hospital, so that we could celebrate your very first day of life together.
We didn't celebrate your birth-day, Love. We were all just too surprised with you, and too worried about you.
I remembered this cake in its covered pan yesterday, and you know what I did, Moriah? I laughed. Here we are, girl, four years later, eating pink-frosted cupcakes at 7 o'clock in the morning, watching you attend to your brand-new dollhouse (all I can say about that gift is that you must have really changed my life, my dear, because anyone who knows me cannot possibly fathom how I disciplined myself to spend the 40+ hours I've spent in this last month painting and putting together that yard sale find with your dad), listening to you talk to the Dad-doll as you forced him into a dining room chair ("No sleep. You eat. Sit down right here. C'mon!"), laughing as you gasp in surprise at (yet-another) Elmo video from your really patient and kind older brother, taking you a ba-zillion times to the potty today (you are nearly potty trained and we are so proud of you), watching you give your cousins huge hugs (Them: "Hug me again, Moriah!" You: "Squeeze!"). You are the girl of nose kisses, laughter, a strong will, smarts, and love. You have a way with babies (Miss Julie likes to call you the "baby whisperer") and music and basketball (you can dribble now and are pretty proud of yourself).
That's you, Moriah--the girl who connects folks to each other.
Four years ago, when terror gripped our hearts and worry flooded into our lives, we couldn't have anticipated this day. Today, Love, we celebrated you. I didn't remember your birth-day with any sadness today; I didn't think about your future with any fear. Not once today did I even think about Down syndrome. Today was just about YOU, Moriah--amazing, remarkable, funny, beautiful you.
For many years now I've been telling you that you are my "favorite girl." This started as kind of a joke with your brothers, who always wanted to know which of them was the favorite when they were little. By calling you my favorite girl, I was choosing no one, and everyone. This year I've said to you nearly every day: "Moriah, out of ALL the girls in the world, YOU are my favorite." And Moriah, if there's one thing I hope you get in this life, it's this: Your mom thinks you rank right up there with the most accomplished, most inspiring, most interesting, most wonderful women who have ever walked this earth. You are the girl I most admire. For all you've overcome, for all you work with and through every day, for all the joy you are to all of us who know you, and for the particular gifts of groundedness, joy, and acceptance you have brought to my life...
...happy birthday to my favorite girl.
I'm in love with you, always.
Love,
Mom
Friday, May 17, 2013
On friends and God, writing and sailing
I am sitting in a Panera this afternoon, writing away at my dissertation. In just two hours, I have added 10 completely new pages to my work. The juices are flowing. The writing seems easy, and bright. I am, as they say, in the groove.
Not so this morning. This morning I sat to revise my Chapter 3 and found, despite my highly detailed outline and notes to remind me of the changes I wanted to make, that I couldn't even begin. I sat for a while. Made some more notes. Checked Facebook. Checked email. Checked Facebook again. Decided to re-organize my jewelry box. Purged a bunch of things from my wallet. Sat in the sun. Read a book.
I will write later, I told myself. After my Physical Therapy appointment. I wasn't anxious. I felt like I was trusting for "it" to come, and I had given "it" a reasonable deadline--after getting treated for vertigo at noon, I would come here to Panera, and "it" would show up. I was quietly confident.
And it did show up. Actually, it happened before I even reached PT--in the car, on the way to the appointment, I didn't realize I was even thinking of my dissertation, and I suddenly realized exactly how I wanted to begin the chapter, and why. It was a beautiful insight, and it had come from...?
Last night I had a very, very rare night out with two very, very dear friends. (I promise this is all related). I've talked about these friends on this blog before; they are two moms who both have children with special needs--Cystic Fibrosis and Down syndrome and autism and PTSD are all in the mix when we get together. IEPs and doctor's visits and surgeries and therapists and lives that are too often very, very interrupted. We are exhausted, we sometimes make ourselves miserable with our complaints, and we vent loudly and with a lot of laughter (and irony), always over drinks. These meetings are always, always exactly what I need.
We talked for nearly 5 hours, and much of our conversation was, as usual, about God. I always stumble across some new idea, some new spiritual help, in talking with these ladies, who are so gut-wrenchingly honest about their own lives and struggles in faith. We talked a lot last night about this paradox: How do we find spiritual rest (or surrender, if you prefer) while also managing and juggling tedious schedules and demanding emergencies and awful crises? How do we trust that God is wildly in love with us and that we--and the kids we love--are seen and provided for, while also having responsibility for the phone calls and the research of the latest therapies and the decisions about what's next for our families?
Last night we had a lot of interesting things to say about this. But just now, while writing my dissertation, I thought of a metaphor I heard at church recently: We are sailboats, each unique from the other, but sharing a great and beautiful sea. God is the wind. Our job is to raise our sails, so to speak, to do this little bit of sail raising while profoundly (and, I think, somewhat desperately) keeping in our souls a quiet trust that what is most needed is a great and beautiful Spirit-wind. Without this Love, we are sailboats that get nowhere, stuck out there at sea in our fears and neuroses and our refusals to trust that we are being sought.
Today in my writing--and maybe this is why I love writing so much, because the practice of it metaphorizes for me again and again what I still struggle to capture in the living of so much of the rest of my life--I raised my sails, and Grace caught them, and I leaned with my back out over the ocean, grasping the rope of faith, and felt as if I were flying.
Was I working hard? Yes. Did I feel I was making a great and exhausting effort? Not at all.
This, it seems to me, is the sweet spot that those of us who long to live a life with and in God desire. We long to raise our sails and trust that the winds of Love are on their way. We long to feel that effortless sense of flying and being resourced. We long to experience a God we cannot see.
Mostly I live my life as a sailboat with its sails down, oars in hand, paddling as hard as I can with my own strength of personality or mind or body. This eventually wears me down. Today the lesson is: Put up the sails and wait. Be anxious for nothing, because you are seen, and the winds are on its way. In writing I find I can work-as-trust in a way I am still learning to do in my non-academic life. But for today, at least, I am wise enough to put down the oars. Today I raise the sails and trust for Wind.
Not so this morning. This morning I sat to revise my Chapter 3 and found, despite my highly detailed outline and notes to remind me of the changes I wanted to make, that I couldn't even begin. I sat for a while. Made some more notes. Checked Facebook. Checked email. Checked Facebook again. Decided to re-organize my jewelry box. Purged a bunch of things from my wallet. Sat in the sun. Read a book.
I will write later, I told myself. After my Physical Therapy appointment. I wasn't anxious. I felt like I was trusting for "it" to come, and I had given "it" a reasonable deadline--after getting treated for vertigo at noon, I would come here to Panera, and "it" would show up. I was quietly confident.
And it did show up. Actually, it happened before I even reached PT--in the car, on the way to the appointment, I didn't realize I was even thinking of my dissertation, and I suddenly realized exactly how I wanted to begin the chapter, and why. It was a beautiful insight, and it had come from...?
Last night I had a very, very rare night out with two very, very dear friends. (I promise this is all related). I've talked about these friends on this blog before; they are two moms who both have children with special needs--Cystic Fibrosis and Down syndrome and autism and PTSD are all in the mix when we get together. IEPs and doctor's visits and surgeries and therapists and lives that are too often very, very interrupted. We are exhausted, we sometimes make ourselves miserable with our complaints, and we vent loudly and with a lot of laughter (and irony), always over drinks. These meetings are always, always exactly what I need.
We talked for nearly 5 hours, and much of our conversation was, as usual, about God. I always stumble across some new idea, some new spiritual help, in talking with these ladies, who are so gut-wrenchingly honest about their own lives and struggles in faith. We talked a lot last night about this paradox: How do we find spiritual rest (or surrender, if you prefer) while also managing and juggling tedious schedules and demanding emergencies and awful crises? How do we trust that God is wildly in love with us and that we--and the kids we love--are seen and provided for, while also having responsibility for the phone calls and the research of the latest therapies and the decisions about what's next for our families?
Last night we had a lot of interesting things to say about this. But just now, while writing my dissertation, I thought of a metaphor I heard at church recently: We are sailboats, each unique from the other, but sharing a great and beautiful sea. God is the wind. Our job is to raise our sails, so to speak, to do this little bit of sail raising while profoundly (and, I think, somewhat desperately) keeping in our souls a quiet trust that what is most needed is a great and beautiful Spirit-wind. Without this Love, we are sailboats that get nowhere, stuck out there at sea in our fears and neuroses and our refusals to trust that we are being sought.
Today in my writing--and maybe this is why I love writing so much, because the practice of it metaphorizes for me again and again what I still struggle to capture in the living of so much of the rest of my life--I raised my sails, and Grace caught them, and I leaned with my back out over the ocean, grasping the rope of faith, and felt as if I were flying.
Was I working hard? Yes. Did I feel I was making a great and exhausting effort? Not at all.
This, it seems to me, is the sweet spot that those of us who long to live a life with and in God desire. We long to raise our sails and trust that the winds of Love are on their way. We long to feel that effortless sense of flying and being resourced. We long to experience a God we cannot see.
Mostly I live my life as a sailboat with its sails down, oars in hand, paddling as hard as I can with my own strength of personality or mind or body. This eventually wears me down. Today the lesson is: Put up the sails and wait. Be anxious for nothing, because you are seen, and the winds are on its way. In writing I find I can work-as-trust in a way I am still learning to do in my non-academic life. But for today, at least, I am wise enough to put down the oars. Today I raise the sails and trust for Wind.
Friday, May 10, 2013
Confessions for Mother's Day
I never wanted to be a mother.
This is ironic, because I have been a mother in some way or another since I was a young girl. Family circumstances being what they were, I did a lot of parenting of my younger sisters in my growing up years. After I married, I became a foster mom sort-of-by-accident, because we knew a kid who needed a place to stay, and then another kid, and then another... And then I became an adoptive mom--which, I figured, was a good way to go about it, since adopting older children meant that a) I could skip the much-abhorred (by me) baby stage, and b) the years which I would spend in full-time parenting would be necessarily shortened by my sons' older ages (and if you think that I'm kidding about whether this occurred to me, you don't know me well).
And then within a few months, I decided I would like to birth a child, after all. I can't really tell you why I had this change of heart, except that it had to do with how happy I was at the time, and how willing to surrender my very, very specific life-plan. During our oldest son, Orilus', bone marrow transplant I did a lot of thinking about legacy and family; I still to this day remember nights lying with Orilus in his hospital bed while he underwent chemo and thinking about what would endure in times like that, when death was so near, and suffering so palpable and great. And after his suffering was completed and he was a walking miracle, life seemed a great gift to me, and I wanted to add another to our family.
And now I am a mom to another child who will need me, likely full-time, for the rest of her life.
And I spend way too much time wondering how long that life will be, and how much time we have.
And other times, I spend time worrying that she will live longer than I will, even though that's not as likely.
And--worst of all--there are really dark times when I imagine my life without her, and long for the days before she came when life was not about special needs and people staring and tantrums in public places and too many visits to the OR and the tedium of doctor's appointments and so many medications I have to write them down just so I don't lose track.
Those dark moments are fewer and much, much farther between than they used to be. But I do still catch myself sometimes, dreaming of a life that is beyond the limits of the life we live now.
Topping the huge list of things mothers (and actually, so many of us, men and women, both) don't talk about enough, is this frustration with our lives as they are. Over and over I find myself--again, this week--coming back to this acceptance, this settling-in, to what is.
Today as I was walking, I saw a beautiful flowering tree, bowing in the wind. And I was suddenly struck by this image of bowing to what-is. In nature, most things bow to what is--and they do so as a matter of survival. A tree that will not bow in wind, will break. And though some Americans rarely if ever bow--unless we are bowing to receive praise--in many traditions, bowing is a way to surrender, to prefer, to honor what-is as beautiful and lovely and worthy of respect. As holy.
So this Mother's Day, a holiday that is full of such mixed emotion for so many, I think we could learn from the tree I watched today. And bow to the mess, the awful and holy mess, of all that life is.
For me, the woman who never intended to be a mother and has yet become one in so many forms and ways, I intend to use this Mother's Day weekend to deepen my acceptance of my life, and my children's lives, as God's good gifts.
And so I bow this weekend to Orilus' 7-year bone marrow transplant anniversary--which falls on Mother's Day this year--and to his miracle-life. I bow to the life he is choosing apart from our home, and honor his independence and chutzpah, his resilience and his strength. I bow to the strength of his soul.
I bow this weekend to Jackson, the most fearless bone marrow transplant donor I know, and the countless ways he continues to give his life to others, especially now to Moriah. I bow to his deep and abiding love for her, which touches me in a way little else can. I bow to his intelligence, his quick wit, and the way he too often chooses the path of most resistance. I bow to his choice to grow in this way, and honor the resilience of his spirit.
I bow to Moriah and the spit-fire spirit she inherited from me, a spirit that has made her, too, a surgery-survivor. I bow to her courage to learn even when she is unhealthy. I bow to her curiosity, her laughter, her joy, her tenacity, her independent will, and the complicated medical interventions she needs. I bow to her voice, and her brilliance, and her huge and loving heart.
I bow to the giftedness of each of my children and the unique and precious gifts they have given me--humility, patience, long-suffering, prayerfulness, trust, surrender, courage, faith, love, hope, strength, resilience, courage, advocacy, compassion, discernment...
I bow to what will be.
This is ironic, because I have been a mother in some way or another since I was a young girl. Family circumstances being what they were, I did a lot of parenting of my younger sisters in my growing up years. After I married, I became a foster mom sort-of-by-accident, because we knew a kid who needed a place to stay, and then another kid, and then another... And then I became an adoptive mom--which, I figured, was a good way to go about it, since adopting older children meant that a) I could skip the much-abhorred (by me) baby stage, and b) the years which I would spend in full-time parenting would be necessarily shortened by my sons' older ages (and if you think that I'm kidding about whether this occurred to me, you don't know me well).
And then within a few months, I decided I would like to birth a child, after all. I can't really tell you why I had this change of heart, except that it had to do with how happy I was at the time, and how willing to surrender my very, very specific life-plan. During our oldest son, Orilus', bone marrow transplant I did a lot of thinking about legacy and family; I still to this day remember nights lying with Orilus in his hospital bed while he underwent chemo and thinking about what would endure in times like that, when death was so near, and suffering so palpable and great. And after his suffering was completed and he was a walking miracle, life seemed a great gift to me, and I wanted to add another to our family.
And now I am a mom to another child who will need me, likely full-time, for the rest of her life.
And I spend way too much time wondering how long that life will be, and how much time we have.
And other times, I spend time worrying that she will live longer than I will, even though that's not as likely.
And--worst of all--there are really dark times when I imagine my life without her, and long for the days before she came when life was not about special needs and people staring and tantrums in public places and too many visits to the OR and the tedium of doctor's appointments and so many medications I have to write them down just so I don't lose track.
Those dark moments are fewer and much, much farther between than they used to be. But I do still catch myself sometimes, dreaming of a life that is beyond the limits of the life we live now.
Topping the huge list of things mothers (and actually, so many of us, men and women, both) don't talk about enough, is this frustration with our lives as they are. Over and over I find myself--again, this week--coming back to this acceptance, this settling-in, to what is.
Today as I was walking, I saw a beautiful flowering tree, bowing in the wind. And I was suddenly struck by this image of bowing to what-is. In nature, most things bow to what is--and they do so as a matter of survival. A tree that will not bow in wind, will break. And though some Americans rarely if ever bow--unless we are bowing to receive praise--in many traditions, bowing is a way to surrender, to prefer, to honor what-is as beautiful and lovely and worthy of respect. As holy.
So this Mother's Day, a holiday that is full of such mixed emotion for so many, I think we could learn from the tree I watched today. And bow to the mess, the awful and holy mess, of all that life is.
For me, the woman who never intended to be a mother and has yet become one in so many forms and ways, I intend to use this Mother's Day weekend to deepen my acceptance of my life, and my children's lives, as God's good gifts.
And so I bow this weekend to Orilus' 7-year bone marrow transplant anniversary--which falls on Mother's Day this year--and to his miracle-life. I bow to the life he is choosing apart from our home, and honor his independence and chutzpah, his resilience and his strength. I bow to the strength of his soul.
I bow this weekend to Jackson, the most fearless bone marrow transplant donor I know, and the countless ways he continues to give his life to others, especially now to Moriah. I bow to his deep and abiding love for her, which touches me in a way little else can. I bow to his intelligence, his quick wit, and the way he too often chooses the path of most resistance. I bow to his choice to grow in this way, and honor the resilience of his spirit.
I bow to Moriah and the spit-fire spirit she inherited from me, a spirit that has made her, too, a surgery-survivor. I bow to her courage to learn even when she is unhealthy. I bow to her curiosity, her laughter, her joy, her tenacity, her independent will, and the complicated medical interventions she needs. I bow to her voice, and her brilliance, and her huge and loving heart.
I bow to the giftedness of each of my children and the unique and precious gifts they have given me--humility, patience, long-suffering, prayerfulness, trust, surrender, courage, faith, love, hope, strength, resilience, courage, advocacy, compassion, discernment...
I bow to what will be.
Monday, March 25, 2013
Our sweet girl
Palm Sunday photos:
A brisk morning walk to the pond with Mom...
All dressed up for church...
A brisk morning walk to the pond with Mom...
All dressed up for church...
Friday, March 22, 2013
On socks
Re-posted from Facebook today, March 22, 2013
Yesterday was International Down Syndrome Day, as you know.
Despite my natural inclinations to live in the future (I am forever planning trips that may or may not actually happen, or thinking about tomorrow, or the next weekend, or the next), I am not one of those moms who thinks of the kinds of details that truly amazing moms do. I remember homework and Picture Day and am already planning my kids' summer, but I don't ever think to bring treats for Moriah's class or to plan very far ahead with Halloween costumes or play dates.
Maybe when I'm no longer a doctoral candidate, these things will occur to me. Maybe not.
This explains why, when I dropped off Moriah at daycare yesterday morning, I suddenly blurted out to her daycare provider, Julie: "Oh! By the way! Today is International Down Syndrome Day!" And then I sort of mumbled: "I guess I should have thought to do something for that...sorry, Julie."
Yesterday afternoon on my way to an appointment, I received a text. It was a photo of Moriah's entire daycare, socks on their hands and feet. "Extra socks for an extra chromosome!" Julie had written, referencing the sock campaign that many folks celebrated yesterday (see more about this here). I couldn't believe it. How had she even made time, with a houseful of kids, to look that up online? And how had she rounded them all up for a photo op? It was amazing, and truly touching.
But that wasn't all. This morning when I brought Moriah back to daycare, I thanked Julie for the photo she had texted me. And that's when I got the full story: Julie had not only looked up about International Down Syndrome Day and seen the sock campaign, but had taught an entire lesson about Down syndrome. She pulled out pairs of socks, 2 for each child, and 3 for Moriah. And arranging each pair so they looked like chromosomes, she and her husband had talked with the kids about chromosome pairs, and how Moriah had an extra "sock." She answered questions the older kids had about what the word "syndrome" meant, and where our chromosomes are, and why Moriah was different--and not--from everybody else.
And then they put on their crazy, mismatched socks and took some photos, celebrating Moriah and her uniqueness the entire time. And some of those kids didn't want to take off their mismatched socks, and went home wearing them.
The day that Moriah was born--and the very difficult weeks spent in the ICU afterwards, followed by her open heart surgery, her seizures, and these years of illness and emergencies--each event in Moriah's life has presented an opportunity for me to be seized with fear. What will her life become? What if she doesn't make it this time? Will she always be cared for in this life? Who will befriend her? Who will understand her, and accept her?
I've gotten a lot better at choosing not to fear and choosing to trust. And on my really good days, I dare to hope that it's not Moriah who needs other people, it's other people who need Moriah. I dare to believe that she has great gifts to offer the world--gifts of spirit, understanding, acceptance, love, slowness, spunk, patience, and joy--and that those who love her will be very blessed for having dared to do so.
Thank you, Julie, for being one of Moriah's greatest advocates. And thank you, thank you for teaching a houseful of kids to love a kid with Down syndrome. I can only believe that your work is changing the hearts of the kids who are blessed enough to encounter you and David, as you (and your socks!) foster the sort of radical acceptance we can all choose to have for one another. The sort of ferocious love Moriah gives us all. I am so very grateful.
Yesterday was International Down Syndrome Day, as you know.
Despite my natural inclinations to live in the future (I am forever planning trips that may or may not actually happen, or thinking about tomorrow, or the next weekend, or the next), I am not one of those moms who thinks of the kinds of details that truly amazing moms do. I remember homework and Picture Day and am already planning my kids' summer, but I don't ever think to bring treats for Moriah's class or to plan very far ahead with Halloween costumes or play dates.
Maybe when I'm no longer a doctoral candidate, these things will occur to me. Maybe not.
This explains why, when I dropped off Moriah at daycare yesterday morning, I suddenly blurted out to her daycare provider, Julie: "Oh! By the way! Today is International Down Syndrome Day!" And then I sort of mumbled: "I guess I should have thought to do something for that...sorry, Julie."
Yesterday afternoon on my way to an appointment, I received a text. It was a photo of Moriah's entire daycare, socks on their hands and feet. "Extra socks for an extra chromosome!" Julie had written, referencing the sock campaign that many folks celebrated yesterday (see more about this here). I couldn't believe it. How had she even made time, with a houseful of kids, to look that up online? And how had she rounded them all up for a photo op? It was amazing, and truly touching.
But that wasn't all. This morning when I brought Moriah back to daycare, I thanked Julie for the photo she had texted me. And that's when I got the full story: Julie had not only looked up about International Down Syndrome Day and seen the sock campaign, but had taught an entire lesson about Down syndrome. She pulled out pairs of socks, 2 for each child, and 3 for Moriah. And arranging each pair so they looked like chromosomes, she and her husband had talked with the kids about chromosome pairs, and how Moriah had an extra "sock." She answered questions the older kids had about what the word "syndrome" meant, and where our chromosomes are, and why Moriah was different--and not--from everybody else.
And then they put on their crazy, mismatched socks and took some photos, celebrating Moriah and her uniqueness the entire time. And some of those kids didn't want to take off their mismatched socks, and went home wearing them.
The day that Moriah was born--and the very difficult weeks spent in the ICU afterwards, followed by her open heart surgery, her seizures, and these years of illness and emergencies--each event in Moriah's life has presented an opportunity for me to be seized with fear. What will her life become? What if she doesn't make it this time? Will she always be cared for in this life? Who will befriend her? Who will understand her, and accept her?
I've gotten a lot better at choosing not to fear and choosing to trust. And on my really good days, I dare to hope that it's not Moriah who needs other people, it's other people who need Moriah. I dare to believe that she has great gifts to offer the world--gifts of spirit, understanding, acceptance, love, slowness, spunk, patience, and joy--and that those who love her will be very blessed for having dared to do so.
Thank you, Julie, for being one of Moriah's greatest advocates. And thank you, thank you for teaching a houseful of kids to love a kid with Down syndrome. I can only believe that your work is changing the hearts of the kids who are blessed enough to encounter you and David, as you (and your socks!) foster the sort of radical acceptance we can all choose to have for one another. The sort of ferocious love Moriah gives us all. I am so very grateful.
International Down Syndrome Day
Reposted from Facebook from March 21, 2013:
Dear Moriah:
Today is International Down Syndrome day. You and I already talk about Down syndrome. Most nights after we pray together, and before you go to bed, we have a sort of routine conversation.
Me: Are you beautiful, Moriah?
You: Yeah.
Me: Does God believe you are beautiful?
You: Yeah.
Me: Does God love you?
You: Love!
Me: Where is God?
You: (points to her chest) In me!
Me: Do you have Down syndrome, Moriah?
You: Down s-drum!
Me: That means you have something extra special. Are you extra special?
You: Yeah.
Me: Is your body amazing?
You: Amazing!
Me: Who loves you Moriah?
You: Papa…Daddy…Jackson…Gramma…Mom.
Me: I love you, Moriah.
You: Love you.
I have to force myself to utter the words “Down syndrome” aloud to you, because I believe you should hear them, often and early, so that they do not represent a terrible conversation we have to have later in your life. I want them to just be what they should be—words that describe a part of you, words that explain something you carry with you. Words that are you, and also, words that couldn’t possibly describe all of you. But if I were honest with myself, I’d have to tell you, Moriah, that these words still make me a bit sad at times. It’s hard to look into your beautiful, hopeful face and say, “Down syndrome.”
In some ways, I wish I could freeze time for you here, at 3-1/2 years old, because at this age, Down syndrome are just words you can repeat, and words that carry no emotional weightiness at all. I pray a lot of things for you, Moriah, but mostly, I pray that you will continue to believe in your own amazing-ness, your beauty, your specialness, and God’s great love for you…even as you come to understand what Down syndrome means. Right now you are a girl who loves to kiss herself in the mirror, who is enamored with all she can do (sometimes, you interrupt our conversations because you’ve done something so small—jumped over a line on the floor, or strung a bead on a string—and you insist that the entire family clap and clap for you). You are, sweet girl, almost always free of self-consciousness and absolutely content with who you are.
And I say almost always, because you already are beginning to grapple with your imperfections. Yesterday morning I dropped you off at daycare. Lately you don’t want to see me go, and you make a dramatic scene of saying good-bye to me. This morning, my turning to leave made you angry, and you reached out and slapped another little girl who was near you. You realize these impulsivities too late to stop them, and this makes you self-conscious, angry, ashamed, and sad. And this makes the impulsive, imperfect moment linger longer than it needs to, as you work through a tantrum or some tears, and learn how to express your anger and receive forgiveness, all at once.
You remind me so much of me in these moments, my daughter. How a perfection-driven woman like me ended up with a girl who wears her imperfection in her physical form is a mystery of grace that I am just now understanding as the perfect salve to my own self-drivenness, the perfect gateway to my own acceptance of all the things I like least about me, the perfect pathway to self-forgiveness and surrender. When I watch you—sometimes I feel I am more your student than your parent—I sense that I am being invited. Invited to understand how suffering and joy are sisters to one another, and to seize opportunities to giggle with you. Invited to make peace with my inability to control or work for all the things that matter most in this life, and just to dance my way through it instead. Invited to make suffering useful and instructive, to learn to approach life with a lot less fear and worry and a lot more trust and surrender. Invited to experience hope, and fun, and grace.
Today is International Down Syndrome Day. A few years ago, I would not have known about this day, and even if I had, would not have cared much. But now I care very much for you, and you have Down syndrome. And apparently, Moriah, it took a daughter with Down syndrome to help me begin to loosen my hold on the fundamental ways I approach life and to grab hold of a new life. One that is decidedly and graphically imperfect, but also, more laced with freedom and hope and laughter and joy than it has ever been. From you, I am learning that God really does think we are all amazing, and I hope to spend the rest of my life living into that Love with you.
Thank you for being such a gift of life to me.
Mom
March 21, 2013
Dear Moriah:
Today is International Down Syndrome day. You and I already talk about Down syndrome. Most nights after we pray together, and before you go to bed, we have a sort of routine conversation.
Me: Are you beautiful, Moriah?
You: Yeah.
Me: Does God believe you are beautiful?
You: Yeah.
Me: Does God love you?
You: Love!
Me: Where is God?
You: (points to her chest) In me!
Me: Do you have Down syndrome, Moriah?
You: Down s-drum!
Me: That means you have something extra special. Are you extra special?
You: Yeah.
Me: Is your body amazing?
You: Amazing!
Me: Who loves you Moriah?
You: Papa…Daddy…Jackson…Gramma…Mom.
Me: I love you, Moriah.
You: Love you.
I have to force myself to utter the words “Down syndrome” aloud to you, because I believe you should hear them, often and early, so that they do not represent a terrible conversation we have to have later in your life. I want them to just be what they should be—words that describe a part of you, words that explain something you carry with you. Words that are you, and also, words that couldn’t possibly describe all of you. But if I were honest with myself, I’d have to tell you, Moriah, that these words still make me a bit sad at times. It’s hard to look into your beautiful, hopeful face and say, “Down syndrome.”
In some ways, I wish I could freeze time for you here, at 3-1/2 years old, because at this age, Down syndrome are just words you can repeat, and words that carry no emotional weightiness at all. I pray a lot of things for you, Moriah, but mostly, I pray that you will continue to believe in your own amazing-ness, your beauty, your specialness, and God’s great love for you…even as you come to understand what Down syndrome means. Right now you are a girl who loves to kiss herself in the mirror, who is enamored with all she can do (sometimes, you interrupt our conversations because you’ve done something so small—jumped over a line on the floor, or strung a bead on a string—and you insist that the entire family clap and clap for you). You are, sweet girl, almost always free of self-consciousness and absolutely content with who you are.
And I say almost always, because you already are beginning to grapple with your imperfections. Yesterday morning I dropped you off at daycare. Lately you don’t want to see me go, and you make a dramatic scene of saying good-bye to me. This morning, my turning to leave made you angry, and you reached out and slapped another little girl who was near you. You realize these impulsivities too late to stop them, and this makes you self-conscious, angry, ashamed, and sad. And this makes the impulsive, imperfect moment linger longer than it needs to, as you work through a tantrum or some tears, and learn how to express your anger and receive forgiveness, all at once.
You remind me so much of me in these moments, my daughter. How a perfection-driven woman like me ended up with a girl who wears her imperfection in her physical form is a mystery of grace that I am just now understanding as the perfect salve to my own self-drivenness, the perfect gateway to my own acceptance of all the things I like least about me, the perfect pathway to self-forgiveness and surrender. When I watch you—sometimes I feel I am more your student than your parent—I sense that I am being invited. Invited to understand how suffering and joy are sisters to one another, and to seize opportunities to giggle with you. Invited to make peace with my inability to control or work for all the things that matter most in this life, and just to dance my way through it instead. Invited to make suffering useful and instructive, to learn to approach life with a lot less fear and worry and a lot more trust and surrender. Invited to experience hope, and fun, and grace.
Today is International Down Syndrome Day. A few years ago, I would not have known about this day, and even if I had, would not have cared much. But now I care very much for you, and you have Down syndrome. And apparently, Moriah, it took a daughter with Down syndrome to help me begin to loosen my hold on the fundamental ways I approach life and to grab hold of a new life. One that is decidedly and graphically imperfect, but also, more laced with freedom and hope and laughter and joy than it has ever been. From you, I am learning that God really does think we are all amazing, and I hope to spend the rest of my life living into that Love with you.
Thank you for being such a gift of life to me.
Mom
March 21, 2013
Saturday, February 16, 2013
Sunday, January 20, 2013
a January retreat day
(re-post from Facebook on January 19, 2012)
Personal "retreat days" have been a tradition of mine since my late teen years. The shape and nature and timing of these days have evolved as I've aged, but the soul of them remains the same: to put on the calendar four days a year for talking to/listening for/being with God. In my thirties, I have used some of the day to re-read at least a year's worth of journals and to "listen to my life" for change, for God's love, for the lessons I've learned, for a sense of where--in what spiritual season, in what help-me-now-neurosis, in what need for grace--I am at this present moment.
Today was a retreat day. In some ways, the day could not have been worse timing; I have so much to do that did not get done in the last few weeks of my so-called "winter break"--Moriah has been perpetually sick since her last surgery a week before Christmas. It was so, so tempting to pack a backpack full of dissertation- and syllabus-work. And also, the thoughts of things I need to DO for others--Eddie and his mom, the friend who lost her mom to cancer this week, my grandfather, my kids, my husband.
But today I had set aside for retreating. These days are like anchors for me, and years of spiritual practice during, and in anticipation of, days like this one have taught me that they are important to keep. So I packed a backpack with 4 journals covering the years since Moriah's birth, my Book of Common Prayer, some other spiritual readings, and some hiking boots. I spent the morning hiking around a beautiful reservoir, and spent eight hours thereafter in silence in an empty Catholic church, in reading over meals taken in restaurants by myself (something I love very much to do, to eat alone), and in journaling at a cafe.
It was a beautiful, memorable day, made all the more lovely by this translation from Paul's letter to the folks in Ephesus: "May your roots go down deep into the soil of God's marvelous love."
And after hiking over huge trees felled by this year's storms, I had a new appreciation today for deep, thirsty roots and a new imagination for what it could mean to live into liturgy-time, where our lives look beyond our biological calendars of decline and decay, and into hopeful possibilities for our spiritual growth and renewal. I prayed for many of you today, my heart full with our mutual sufferings and frustrations and heartbreaks. May our roots go down deep, especially on windy days when we are very prone to falling.
Personal "retreat days" have been a tradition of mine since my late teen years. The shape and nature and timing of these days have evolved as I've aged, but the soul of them remains the same: to put on the calendar four days a year for talking to/listening for/being with God. In my thirties, I have used some of the day to re-read at least a year's worth of journals and to "listen to my life" for change, for God's love, for the lessons I've learned, for a sense of where--in what spiritual season, in what help-me-now-neurosis, in what need for grace--I am at this present moment.
Today was a retreat day. In some ways, the day could not have been worse timing; I have so much to do that did not get done in the last few weeks of my so-called "winter break"--Moriah has been perpetually sick since her last surgery a week before Christmas. It was so, so tempting to pack a backpack full of dissertation- and syllabus-work. And also, the thoughts of things I need to DO for others--Eddie and his mom, the friend who lost her mom to cancer this week, my grandfather, my kids, my husband.
But today I had set aside for retreating. These days are like anchors for me, and years of spiritual practice during, and in anticipation of, days like this one have taught me that they are important to keep. So I packed a backpack with 4 journals covering the years since Moriah's birth, my Book of Common Prayer, some other spiritual readings, and some hiking boots. I spent the morning hiking around a beautiful reservoir, and spent eight hours thereafter in silence in an empty Catholic church, in reading over meals taken in restaurants by myself (something I love very much to do, to eat alone), and in journaling at a cafe.
It was a beautiful, memorable day, made all the more lovely by this translation from Paul's letter to the folks in Ephesus: "May your roots go down deep into the soil of God's marvelous love."
And after hiking over huge trees felled by this year's storms, I had a new appreciation today for deep, thirsty roots and a new imagination for what it could mean to live into liturgy-time, where our lives look beyond our biological calendars of decline and decay, and into hopeful possibilities for our spiritual growth and renewal. I prayed for many of you today, my heart full with our mutual sufferings and frustrations and heartbreaks. May our roots go down deep, especially on windy days when we are very prone to falling.
Our Advent 2012 Family Letter
Dear Friends,
We published our Advent letter online again this year; it comes belated to you, but with no less warmth and care than if we had delivered it to your mailbox. Read on to find out what unfinished cups of coffee have to say about the year we've had...
http://bit.ly/VTi09M
Merry Christmas,
The Winchell Family
We published our Advent letter online again this year; it comes belated to you, but with no less warmth and care than if we had delivered it to your mailbox. Read on to find out what unfinished cups of coffee have to say about the year we've had...
http://bit.ly/VTi09M
Merry Christmas,
The Winchell Family
Subscribe to:
Posts (Atom)