Amy Julia Becker's Blog, page 31

Why Our Down Syndrome Clinic Appointment Is Worth It

Once a year, Penny and I travel to see a specialist and his team at the Down syndrome clinic at Massachusetts General Hospital. Every year, I wonder whether it will be worth it. It takes a lot of time. I have to gather all the reports from the previous year. And Penny is usually doing pretty well, so I feel like nothing is urgent about her care and maybe we should just wait until something big comes up.

This year, I started filling out the (long) intake form for Penny’s visit. As much as I bemoan the time it takes, the form itself reminded me of why we go back again and again. 

They’ve added a portion for Penny to fill out. It asks questions like whether she knows how to call her doctor, whether she knows where her insurance card is, whether she cares about exercise, whether she knows how to maintain healthy boundaries in relationships. It’s a form that assumes Penny has her own needs, her own desires, her own goals, and her own ability to learn. It’s also a form that showed us some areas where she can continue to grow in independence.

We head up for our visit this month, and it has already been worth it.

More with Amy Julia:

Using Our Spiritual Imaginations to Envision a Good and Possible FutureChristianity Today: God Teaches Me Through My Daughter with Down SyndromeStepping Off the Ladder of Comparison

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Christianity Today: God Teaches Me Through My Daughter with Down Syndrome

Adults with intellectual disabilities can have robust spiritual lives. Are we learning from them?

Every Sunday afternoon, my daughter and I join a Zoom call with her friend and her friend’s mom, who live a few hours away—for a special time we’ve come to call “God Talk.” 

My 17-year-old daughter, Penny, and her 18-year-old friend, Rachel, both have Down syndrome. A while back, Rachel noticed us praying before meals and asked if she could join us. This led to a few conversations about what it looks like to follow Jesus. And eventually, as Rachel’s mother, Ginny, told me a few weeks later, every night Rachel extended her hands and said, “Thank you, God, for having us.”

Keep reading over at Christianity Today! 

God Teaches Me Through My Daughter with Down Syndrome

More Christianity Today essays from Amy Julia:

Christianity Today | From Holistic Health to a Holistic GospelChristianity Today: Enough to Share in the Land of PlentyChritianity Today: The Ministry of the Disabled

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Using Our Spiritual Imaginations to Envision a Good and Possible Future

I get overwhelmed easily when I think about the future, especially as Penny is about to turn 18. We need to make decisions with her about guardianship and transition planning and housing and employment. I also get overwhelmed when I think about all the institutional change I would like to see and how impossible it seems.

That’s where the spiritual imagination comes in. I don’t mean imagining fantasy worlds. I mean envisioning a good future within both the constraints and possibilities God gives us. But how do we use our spiritual imaginations to envision a good and possible future? 

Together with other people of faith.
Pray together, envision together, ask for the Spirit of God to direct your imaginations. 

Use Scripture as a guide.
When it comes to imagining a different world for people with disabilities, use a story like Luke 14, where Jesus describes the kingdom of God as a place where disabled people come to the table first and there is still room for everyone else. Read this story and ask: What would that actually look like in our context today? Who would that include? Who are the people who we would be compelling to come in? And can we imagine that?

Once you have a vision for the future, notice resistance to that future.
What are the reasons you say, “Well, that could never happen”? Then ask, “What if we pushed past that resistance with our imagination? What if we brought 1 Corinthians 13 in and we believed that love was actually strong enough to always persevere and always hope and always trust?” 

Look for current and literal images to help your imagination.
Look for the real, lived experiences of people who are a little bit ahead of you in time or experience, whether that’s an individual, a family, or a whole community that, however many years ago, started doing X, Y, or Z. Ask yourself, “Okay, could we imagine that? 

I still get scared about our future. But coming back to prayer, Scripture, and the lived experiences of people who are a few steps ahead of us helps me use my spiritual imagination to move forward with hope for a good future.

More with Amy Julia:

Using the Spiritual Imagination as a Vehicle for HopeReshaping Our Cultural ImaginationCOGNOSCENTI | The future I imagine for my daughter

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Giving Tuesday

It’s Giving Tuesday tomorrow, so I thought I’d mention two organizations that we love supporting with financial gifts:

Special Hope Network. This beautiful organization welcomes families affected by intellectual disability in Lusaka, Zambia. They empower parents and caregivers to provide a safe and loving space for their children through their Community Care Centers. They also educate communities so that these children are valued and embraced instead of stigmatized or abandoned. We have been following the work of SHN for over a decade now, and we would love for you to join us in supporting their work.

Hope Heals. If you’ve followed along here for any period of time, you’ve probably heard me mention Hope Heals. Here’s another organization committed to offering healing hope to hurting people, and we are honored to be a part of it and to give to their work. Hope Heals raises funds to support camper families affected by all kinds of disabilities so they can experience welcome and belonging for a week of camp in the summer. They are also currently creating a coffee shop called Mend which will both be fully accessible to customers with disabilities and employ people with disabilities as well.

There’s this place in the gospels where Jesus tells the host of a dinner party that he should invite people with disabilities “who cannot repay him” as guests. And somehow, Jesus says, in sharing your table with the very people who cannot “repay you,” you will be blessed. Giving to organizations like Special Hope Network and Hope Heals has been this kind of experience for us. We will never be “repaid” for the money we have donated. But we continue to experience overwhelming blessing from their work in the world. I hope you’ll check out both organizations and consider making a gift!

More with Amy Julia:

How a Baby with Down Syndrome from Brazil Is Changing Lives in ZambiaHope Heals and Hope Heals CampHow We Think About Giving Money Away

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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How to Find Joy Even When Life Is Hard

A couple weeks ago I was talking to Jamie of Mattea’s Joy, and she asked me, “What does it mean to you to find joy in the journey?” 

How do I find joy? These two reflective practices allow me to slow down and reflect on what I’m feeling, who I’ve been given, and what I’ve been given.

I pause and name what I’m grateful for.I pause and ask questions about what I’m upset about.
(Identifying anger or sadness or hurt can lead me to a place of honesty, whether it’s an honest confrontation with someone, an honest confrontation with myself, or an honest prayer.) 

These practices help me go deeper than a gratitude list or pretending that there’s nothing wrong. They point me toward joy all along the way. 

Connect here with Mattea’s Joy for more of this conversation!

More with Amy Julia:

A Series on GratitudeWhen Shame Becomes Joy and Guilt Becomes Gratitude

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Christian Century: Worshiping at the church of Taylor Swift

Taylor Swift more or less plays on repeat when I’m driving around with our kids, so the recent arrival of The Eras Tour film, a new version of “Cruel Summer,” and 1989 (Taylor’s Version) all generated great excitement in our household. I’m a fan, but I’m also trying to understand. Why, exactly, is Taylor Swift so popular?

I asked the six teenagers in our minivan this question before we dropped them off to enjoy the Eras movie…{keep reading}

Grateful to write for The Christian Century:

Worshiping at the church of Taylor Swift: The goodness of a Taylor Swift show points to our need for a deeper goodness.

More with Amy Julia:

Seats That Money Can’t Buy at the Taylor Swift ConcertThere Can Never Be Too Much DelightI Didn’t Mean to Go to Another Concert

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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I’m a soccer mom.

I have spent the past few weeks bemoaning the hours I spend in the car, driving in circles around our local landscape. Our kids play on three different soccer teams. Plus Penny is the number one fan for her high school’s team. It’s a lot.

I complain about it. I also kind of love it. 

What are the things that you complain about and love at the same time?

More with Amy Julia:

Failing in Front of the KidsS7 E6 | How to Become a Worry-Free Parent with Sissy Goff, LPC-MHSPStepping Off the Ladder of Comparison

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform.

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Failing in Front of the Kids

I played soccer for the first time in over 30 years on Monday. It was exactly the situation I try to avoid. Marilee’s team had a parent/child game, and I punted the responsibility of attending to Peter. He likes soccer. He coached it in college. It would be a good father/daughter bonding activity.

But then Peter threw his back out, and Marilee asked if I could play. In the past, I would have said a hard no for all the obvious reasons. I might injure myself. I might embarrass myself. Or her. Still, the real reason I wouldn’t have played is because I am afraid of trying things that I don’t know I will be good at. 

Failing in Front of the Kids

And if there is anything I want to model to our kids, it is that it is safe to take healthy risks. I want them to know that trying something and not being amazing can be great. I also want to learn this for myself—that doing everything well all the time is an impossible standard that I don’t want to even try to achieve. Doing something at a less-than-excellent level is a gift to my kids, and to me. 

So I suited up in my sneakers and many layers and headed out to the field. I was utterly intimidated by my initial teammates—eight men and two women who all seemed to know what they were doing. But I did it—I kicked the ball. Sometimes it even went where I wanted it to. I took a throw-in. I sprinted up the field. I laughed with Marilee. 

In the end, this wasn’t just a life lesson about loving my daughter well or trying new things. It was also a reminder that there can be great joy in playing, even when there is no excellence involved. Yes, I learned that I can push myself beyond my comfort zone. And yes I modeled healthy risk-taking. I also had a lot of fun.

More with Amy Julia:

S7 E6 | How to Become a Worry-Free Parent with Sissy Goff, LPC-MHSPThe Dignity of RiskI want my kids to be healthy not safe

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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What if I Feel Guilty as a Parent Because My Child Has a Disability?

What if I feel guilty as a parent because of my child’s disability? 

I was asked this question a few weeks ago when I was teaching for Joni and Friends. If you are a parent who feels guilty, or if you are concerned about a parent who feels guilty, here are some thoughts:

No matter the cause, we never need to stay in a place of guilt.
Where is the guilt coming from? Guilt shouldn’t be dismissed with the words, “Oh, but you shouldn’t feel guilty.” The feeling is real and deserves attention so that you can move towards healing and freedom.Sometimes guilt comes from false responsibility:
I felt guilty when Penny was first born with Down syndrome, even when I was told by all the doctors that I had done nothing to cause her condition. I wondered if she had Down syndrome because I had an eating disorder in highschool. I thought maybe she had Down syndrome because I was a perfectionist and needed to be taught a lesson. But I eventually learned that my guilt came from a desire for control.
If I could take responsibility for Penny having Down syndrome, then I didn’t need to live in the mystery or perhaps the pain of her situation. I didn’t want to believe that no one was responsible or that God was responsible. It was easier to assume that I had somehow done something wrong and take the weight of the situation on myself.Real responsibility:
Sometimes we feel guilty because we’ve done something wrong or made mistakes that have resulted in harm for people we love, even our children. Here too, if we pay attention to that experience of guilt, we can make amends and seek forgiveness. 

So if we don’t need to remain in guilt, what should we do? Honesty, humility, and hope are movements towards healing. 

Guilt is never, ever, ever the place that God wants us to remain. We are always meant to be set free.

More with Amy Julia:

MOVEMENTS OF HEALING: Honesty. Humility. Hope.When Shame Becomes Joy and Guilt Becomes GratitudeResponsive Parenting

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , Twitter ,  Pinterest , and  YouTube , and you can subscribe to my  Love Is Stronger Than Fear  podcast on your favorite podcast platform. 

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Friendship Forms Durable Hope

What do I do? People in my family received a terminal diagnosis for their child. What do I do? A woman recently emailed me this question. When I wrote her back, I mentioned The Deepest Place, Curt Thompson’s book, and I said, “Just stay. Bring the meal. If they need an errand that’s a part of staying. But more than anything else, you stay.”

And she emailed back and said, “You’re right. I want to fix it. And that’s not the answer. The answer is just to be there and bear witness with them to the pain of this.”

Hope is not toxic positivity in which we just say everything’s going to work out fine or everything happens for a reason. There’s a depth to hope that actually can still hold the reality of pain and loss, and somehow being with one another is a part of that.

I was talking about all of this with Curt on the podcast, and I loved his insights. He said:

“We have all kinds of stories that are about our suffering that we assume nobody wants to hear. And so I simply pile on my suffering by not naming it. But I can’t just hope on my own. I’m going to have to borrow your hope for me until mine can catch up. That’s the way that I form it. As we like to say, ’At the end of the day, I don’t form hope for me; *we* form hope for me.’ That’s the only way hope is ever formed.”

I love this idea of forming hope for each other. How have you seen friendship form and shape hope?

Go here to listen to my full conversation with Curt.

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More with Amy Julia:

To Be Made Well: An Invitation to Wholeness, Healing, and Hope S7 E5 | Finding Hope in the Dark with Curt Thompson, MDS6 E4 | The Beauty of Life Together with Willie James Jennings

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