A brisk morning walk to the pond with Mom...
All dressed up for church...
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
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