World Down Syndrome Day is upon us. I’m home from work, waiting for the school bus to drop off Julia and looking forward to meeting some friends for dinner to raise a glass to this feisty girl with the extra chromosome that makes her so special and our lives so rich and beautiful.
All day, I’ve been watching my friends in the Ds community (especially those with younger kids) post the adorable pictures on social media. There are stories of great joy behind those smiles, belying the seasons of hardship they’ve experienced in one way or another. School administrations, the medical community, the insurance industry, and many others have thrown curveballs at these families for years.
But that’s for another post. Today, we celebrate!
This kid that’s about to walk through the door after a long day of middle school has taken Jocelyn and me on a lot of adventures – some of them fantastic, some of them gut-wrenching and draining. There’s a lot of fun stuff, to be sure. From brushes with celebrity to her uncanny ability to soften the hearts of total strangers, Jocelyn and I have a front row seat to see pure, unfiltered good unfolding in the world because of Julia.
The tough stuff? That’s a little more sensitive and sometimes embarrassing to talk about, but even that has a way of making me a better human. It would take a lifetime to lay out in detail, but there are three values God is using Julia to gently refine me.
Be Interruptible
We live in a cultural ocean of busyness – an endless flow of agendas, responsibilities, personal goals and action items. Julia reminds me to keep space for divine interludes even though they come as frustrating disruptions of my self-constructed “flow”.
Some of the time, it’s a trivial request when I have something really important in front of me. But most often (again, embarrassing), it is her desire for my presence breaking into my doom scrolling session on my phone.
I’m an admitted news junkie. The shifts of culture and workings of government fascinate me. I often feel as connected to a distant nation as I do my own neighborhood; but it has an unintended consequence of inflating my sense of responsibility far beyond my ability to influence in a positive way. I feel my anxiety rise as I pore over one article – and then another. To be well informed is good – to shoulder the cares of the entire world is exhausting.
And as Julia comes to me in my anxiety with a need, it is like an invitation to a Reinhold Niebuhr’s Serenity Prayer…
God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.
There are many philosophers and modern-day mystics who articulate this better than me, but I have come to understand that hurry is the enemy of a thriving inner life. Julia invites me to slow my endless pursuit of “happiness” and remember simply to be happy.
Cultivate and Extend Mercy
This is a more recent reminder. Julia is in a perplexing stage where she occasionally experiences nights of sleeplessness – and Jocelyn and I get an unbidden invitation to join her. It seems like the slightest disruption to her routine can trigger a day or two of sleepless nights for the whole family.
A few weeks ago, after the time change disrupted Julia’s (and our) night’s sleep, I was chastened by a Sunday message at church that challenged us to a life of cultivated mercy. As I sat there in a moment of silence, I heard a quiet voice of Ultimate Good whispering,
Can you do that for her?
It made all the sense in the world. I committed to it. I wrote it down in my journal. I told Jocelyn about what I had heard and my promise to yield to it.
And at 3AM the following morning, after putting Julia to bed for the eleventh time, I found out I was all fresh out of mercy. My utter exhaustion and frustration boiled over and spilled on my kid in angry, frustrated words.
What did Julia do the following morning? She asked me for her juice, her music, and a cuddle before she started the day.
She extended mercy. And my exhausted, hardened heart drank it in. And it changed me for the better – even if it was just a little bit.
Human Connection Is Most Important
Anyone who knows Julia (or any other person with Ds) is not going to be surprised by this.
When Julia comes through the front door today, the easiest question you can ask is who she saw and talked to. She will give you name after name after name.
What she did? You have to check the notes from her teachers.
I have said for years Julia does not care what is going on. She cares who is going on.
She will sit on our front porch in subfreezing temperatures if she knows a friend is coming over. As she waits for their arrival, any passing stranger is going to get a smile, a wave, and a “hello!”
She welcomes strangers as friends and friends as deeply treasured family. She has an uncanny ability to meet someone once and if there is any connection at all, she will remember their name forever and treat them like a rockstar the next time she sees them.
When am I at my best as I interact with Julia? It’s not when I set myself up as the “provider” with all the answers coming with my best to help her flourish. It’s when I come with an open heart to receive what Julia has to teach me as we live our lives in mutual relationship.
I have been pondering for the past few months the teachings of Jesus in the Sermon on the Mount. Something resonated deeply with me when I let the promise of the meek and unimportant inheriting the earth (Matthew 5:5) settle into my soul. It’s not the only time Jesus talked about that, by the way.
I came to realize (and you might agree with me) that we are living in something of an upside-down world which thrives on one-upsmanship, power and control. A world where individual achievement is vaunted at the cost of humility, kindness and the common good.
The world that I dream of – that Julia reminds me of and is even preparing me for – is something entirely different and more life-giving.
In her persistent, feisty way, Julia is reminding me to live in that world right this minute. In the redeemed, “right-side-up” world where Julia and all of our friends with Ds will be rightly celebrated for the beauty and true value they bring to the table.
World Down Syndrome Day & What Julia Does for Me
World Down Syndrome Day is upon us. I’m home from work, waiting for the school bus to drop off Julia and looking forward to meeting some friends for dinner to raise a glass to this feisty girl with the extra chromosome that makes her so special and our lives so rich and beautiful.
All day, I’ve been watching my friends in the Ds community (especially those with younger kids) post the adorable pictures on social media. There are stories of great joy behind those smiles, belying the seasons of hardship they’ve experienced in one way or another. School administrations, the medical community, the insurance industry, and many others have thrown curveballs at these families for years.
But that’s for another post. Today, we celebrate!
This kid that’s about to walk through the door after a long day of middle school has taken Jocelyn and me on a lot of adventures – some of them fantastic, some of them gut-wrenching and draining. There’s a lot of fun stuff, to be sure. From brushes with celebrity to her uncanny ability to soften the hearts of total strangers, Jocelyn and I have a front row seat to see pure, unfiltered good unfolding in the world because of Julia.
The tough stuff? That’s a little more sensitive and sometimes embarrassing to talk about, but even that has a way of making me a better human. It would take a lifetime to lay out in detail, but there are three values God is using Julia to gently refine me.
Be Interruptible
We live in a cultural ocean of busyness – an endless flow of agendas, responsibilities, personal goals and action items. Julia reminds me to keep space for divine interludes even though they come as frustrating disruptions of my self-constructed “flow”.
Some of the time, it’s a trivial request when I have something really important in front of me. But most often (again, embarrassing), it is her desire for my presence breaking into my doom scrolling session on my phone.
I’m an admitted news junkie. The shifts of culture and workings of government fascinate me. I often feel as connected to a distant nation as I do my own neighborhood; but it has an unintended consequence of inflating my sense of responsibility far beyond my ability to influence in a positive way. I feel my anxiety rise as I pore over one article – and then another. To be well informed is good – to shoulder the cares of the entire world is exhausting.
And as Julia comes to me in my anxiety with a need, it is like an invitation to a Reinhold Niebuhr’s Serenity Prayer…
There are many philosophers and modern-day mystics who articulate this better than me, but I have come to understand that hurry is the enemy of a thriving inner life. Julia invites me to slow my endless pursuit of “happiness” and remember simply to be happy.
Cultivate and Extend Mercy
This is a more recent reminder. Julia is in a perplexing stage where she occasionally experiences nights of sleeplessness – and Jocelyn and I get an unbidden invitation to join her. It seems like the slightest disruption to her routine can trigger a day or two of sleepless nights for the whole family.
A few weeks ago, after the time change disrupted Julia’s (and our) night’s sleep, I was chastened by a Sunday message at church that challenged us to a life of cultivated mercy. As I sat there in a moment of silence, I heard a quiet voice of Ultimate Good whispering,
Can you do that for her?
It made all the sense in the world. I committed to it. I wrote it down in my journal. I told Jocelyn about what I had heard and my promise to yield to it.
And at 3AM the following morning, after putting Julia to bed for the eleventh time, I found out I was all fresh out of mercy. My utter exhaustion and frustration boiled over and spilled on my kid in angry, frustrated words.
What did Julia do the following morning? She asked me for her juice, her music, and a cuddle before she started the day.
She extended mercy. And my exhausted, hardened heart drank it in. And it changed me for the better – even if it was just a little bit.
Human Connection Is Most Important
Anyone who knows Julia (or any other person with Ds) is not going to be surprised by this.
When Julia comes through the front door today, the easiest question you can ask is who she saw and talked to. She will give you name after name after name.
What she did? You have to check the notes from her teachers.
I have said for years Julia does not care what is going on. She cares who is going on.
She will sit on our front porch in subfreezing temperatures if she knows a friend is coming over. As she waits for their arrival, any passing stranger is going to get a smile, a wave, and a “hello!”
She welcomes strangers as friends and friends as deeply treasured family. She has an uncanny ability to meet someone once and if there is any connection at all, she will remember their name forever and treat them like a rockstar the next time she sees them.
When am I at my best as I interact with Julia? It’s not when I set myself up as the “provider” with all the answers coming with my best to help her flourish. It’s when I come with an open heart to receive what Julia has to teach me as we live our lives in mutual relationship.
I have been pondering for the past few months the teachings of Jesus in the Sermon on the Mount. Something resonated deeply with me when I let the promise of the meek and unimportant inheriting the earth (Matthew 5:5) settle into my soul. It’s not the only time Jesus talked about that, by the way.
I came to realize (and you might agree with me) that we are living in something of an upside-down world which thrives on one-upsmanship, power and control. A world where individual achievement is vaunted at the cost of humility, kindness and the common good.
The world that I dream of – that Julia reminds me of and is even preparing me for – is something entirely different and more life-giving.
In her persistent, feisty way, Julia is reminding me to live in that world right this minute. In the redeemed, “right-side-up” world where Julia and all of our friends with Ds will be rightly celebrated for the beauty and true value they bring to the table.