Amy Julia Becker's Blog, page 37

Why Go to Hope Heals Camp | Penny in Her Own Words

Years ago, I wrote a piece for the Huffington Post called “Missing Out on Beautiful.” It was prompted by my realization that it was really hard to capture Penny’s true smile in a photograph. We saw her beautiful smile all the time. It was just hard to capture. It felt like a little window into life with her at the time—those of us who got to be with her day in and day out saw the beauty. The outside world did not.

It’s still hard to capture Penny’s real smile with a camera. It’s hard for her to pose. But when we were at Hope Heals Camp together a few weeks ago, every picture with Penny in it involved her real smile, because she had that smile on her face pretty much all the time.

I asked her to share some reflections on her time at Hope Heals camp. I hope these thoughts give you a little window into beauty and celebration too: 

Can you describe Hope Heals to someone who has never been there before?

Hope Heals is a camp where you try to make new connections/ friends. If you have never been there before Hope Heals welcomes you into their community. The reason why the camp is called Hope Heals is because the founders of the camp have this amazing story that newcomers get to hear. Katherine one of the founders of the camp had a massive stroke and there was 1 percent chance that she would live. This is why the camp is called Hope Heals. It’s called Hope Heals because Katherine and Jay have had healing in their life and they also had hope.

Who is Hope Heals for?

Hope Heals is for families that are affected with disability. Or has a member in their family who has a disability. We have family friends who are not affected by disibility but they still want to make the long travel to Alabama because they believe in God and want to make new connections with new people.

What was your favorite part of the week we spent there?

My favorite part of the week was the talent show. Every year Hope Heals puts on a talent show that features the campers and they can show their talents with a loving and supporting family. 

Did you learn anything about yourself?

I learned that I can make new friends pretty easily but I also had friends who were waiting for me from previous years.

Did you learn anything about God?

I learned that God is a healer. He was in Jay and Katherine’s story, when Katherine had the stroke God was there for her. He cared for her. He made her live.

I know you’re hoping to return for two weeks next year–why would you want to be there for two weeks?

I want to return for two weeks because all of my current friends are there and I also want to make new ones. Plus I have always had a commitment to Hope Heals since the first year I have been there.

What is the daily schedule like at camp? 

You wake up pretty early for a volunteer meeting,have breakfast and then there are different groups you are assigned to where you have a lot of fun with all the activities that you do together.

I’ve heard Alabama is really hot in the summer–how do you handle it? Is it worth it?

There are a lot of air conditioned buildings so if you feel hot I would go ahead and go inside to cool down. Even though Alabama is so hot in the summer it is definitely worth it.

Can you describe the talent show to me? What were some of the acts? 

The talent show was a lot of fun. I thought I was nervous but reliazed I wasn’t I was ready to prove that I can do this. Hula Hooping,Singing,Piano playing.

What was your act? And how did it feel to be up there performing?

I was doing my Jazz dance from the spring show I had this year. It felt amazing I knew I had a supportive audience and everyone LOVED my act. People were giving me compliments all night and even the next day.

I heard there was a night called Christmas in July, but I didn’t get to see that at all. What happened that night?

All of the kids and teens were locked inside of Doug while the parents have a nice dinner in Phifer. It was breakfast for dinner. And then there were Christmas activities like a snowball fight but with foam not acutal snow. People were watching Frozen in Hall Hall. It was fun.

One of my highlights every year at Hope Heals is the Luke 14 banquet. Can you describe it?

That is also one of my highlights during the week. The Hospitality crew takes over Doug and transforms it into a beautiful setting with really good food. Another part of that same night you take this oil and draw a cross on one another’s hand.

Do you remember the story from the Bible that it comes from? Can you tell us about that story?

Jesus invites everyone to his house and calls it a special gathering. He invites all the poor,the lame, the sick.

What word was under your plate this year? Why do they write those words?

This year my word was talented. They write these words because everyone believes that you are the word that is underneath your plate. 

What happens when people anoint each other?

Some people get teary eyed but unlike me I don’t. You basically draw a cross with annoting oil and say these words I am with you I am for you God is with you God is for you.

And, the dance party! How was it? Tell us all about it…

The dance party is always so fun. Great way to end the night even though everyone is always dripping with sweat. There was this big arch line that I went through with my best friend for life Caroline. High fives all around.

https://amyjuliabecker.com/wp-content/uploads/2023/08/hope-heals-camps-photos.mp4

More with Amy Julia:

Hope Moments: Living Out the Way of JesusHope Heals and Hope Heals CampPenny’s Take on Hope Heals

The post Why Go to Hope Heals Camp | Penny in Her Own Words appeared first on Amy Julia Becker.

7 Things That Happened During Our Week Without Screens

For seven days, our family put down our devices (here’s why we did this). William found a friend to keep up his Snap streak. Marilee and Penny turned off their iPad and phone, respectively. Peter put his phone in a drawer. I ignored social media, email, and Marco Polo. (We kept my phone around so we could navigate, check the weather, and take photos.) 

So here’s what happened:

We read books. Lots and lots of books. We took our first family bike ride. Ever. (This may be the making of a whole other post, so I’ll just leave it at that.)We watched shows and movies. Together. Ted Lasso has become a part of our family lexicon. Now our kids at least have a reference point for the jokes we tell from Notting Hill. And then there was Barbie .We played cards.We watched the sunset. Yes, this was helped by renting a cottage on Martha’s Vineyard, so let’s be honest that I am never going to try this screen-time experiment in the midst of our every day life. But still. Even in a glorious setting, without putting the phones away, we would have missed a lot of glory out there.We ate lots of ice cream. And then, towards the end of the week, Peter and I were lying in bed reading, and first Marilee came in and lay down between us, which she hasn’t done in years. She put her head on Peter’s chest, then flipped over and rested on me. William followed and lay down next to his dad. Eventually Penny wandered in, and all five of us were filling the bed, just talking and laughing and lying on each other. 

We’re back now, but I hope we’ll carry with us an awareness of how collective limits can open us all up to an abundance of love.

More with Amy Julia:

5 Screen-Time Practices for Families | Summer EditionScreen Time Check-InNew Rules For Screen Time Pt. 2

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. 

The post 7 Things That Happened During Our Week Without Screens appeared first on Amy Julia Becker.

Happy 15th Birthday, William!

Happy 15th Birthday, William!

Henri Nouwen once wrote: 

Birthdays need to be celebrated. I think it is more important to celebrate a birthday than a successful exam, a promotion, or a victory. Because to celebrate a birthday means to say to someone: “Thank you for being you.” Celebrating a birthday is exalting life and being glad for it. On a birthday we do not say: “Thanks for what you did, or said, or accomplished.” No, we say: “Thank you for being born and being among us.”

On birthdays we celebrate the present. We do not complain about what happened or speculate about what will happen, but we lift someone up and let everyone say: “We love you.”

(From Here and Now: Living in the Spirit)

And so today, we lift up William and let everyone say, “We love you.” 

We love you because of who you are, with your delight in geography and politics and all things Taylor Swift. We love you for your concern about getting things right and your ability to rest when you need it and your persistence in getting things done. We love you for the little boy you once were who fell asleep to marching bands and exclaimed with rapture about seeing a tuba. We love you for the young man you are becoming who asks the big deep questions about meaning and purpose and ethics and God and who desperately wants an Apple watch. 

We love you because you are among us. We celebrate you today. 

Happy birthday.

More with Amy Julia:

William Is 14!!!I Want Our Kids to Accomplish Things, Not Achieve ThemSeats That Money Can’t Buy at the Taylor Swift 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. 

The post Happy 15th Birthday, William! appeared first on Amy Julia Becker.

Hollywood, via Barbie, Still Doesn’t Know What To Do With Disability

Our whole family went to see the new Barbie movie on Friday. We loved it. I laughed so hard Penny shushed me. Repeatedly. (My favorite moment involved singing Closer to Fine. If you know, you know.)

I recommend this movie. And I recommend the unbelievable amount of commentary it has garnered all over the place. 

One of the strengths of this film is the insistence that while Barbie began as an impossibly-thin, blonde, tall woman in a bathing suit, over time, she began to reflect a broader understanding of what it means to be a woman. The supporting cast of women with speaking roles who hover around “Stereotypical Barbie” includes a Black woman (as President), a trans woman playing a doctor, and a larger woman playing a lawyer. Cast members include women of multiple shapes and sizes (though still, on the whole, with incredibly slim bodies), with a variety of skin tones. 

But, besides one scene with a quick flash to a woman using a wheelchair, I saw no one with a disability. (Apparently there is also a woman with a prosthetic arm.) Over the years, Mattel developed a whole line of dolls with disabilities. The company released a Barbie with Down syndrome a few months ago, but she does not show up in Barbieland. The film rightly cares about diversity and representation, but disability didn’t make the cut. 

Estimates vary, but anywhere from 10%-20% of the general population lives with a disability. One to three percent live with an intellectual disability. I’m glad Mattel (and the Barbie film) has worked to include more and more people in their reflections on what it looks like to be a woman. Let’s just be clear: women with disabilities belong among us, and Barbie missed an opportunity to show the world exactly that.

More with Amy Julia:

What Do I Think About the Barbie With Down Syndrome?The Significance of Our Social WorldsDiversity, Equity, Inclusion (DEI) and Mammograms

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. 

The post Hollywood, via Barbie, Still Doesn’t Know What To Do With Disability appeared first on Amy Julia Becker.

Hope Moments: Living Out the Way of Jesus

I want to tell you about every moment from Hope Heals camp.

But even with all my words and stories, and even with Ashley Monogue’s gorgeous photography (montage below), and even with video clips, I won’t come close to conveying the depth of the experience. 

There was the moment when Penny stood between Jay and Katherine Wolf, Hope Heals founders, and their son James, and hugged anyone who wanted an embrace as the volunteer team took communion.

There was the celebration for all the participants using wheelchairs as they danced.

There was the chance to watch teenagers (including my own) operate with an instinct for kindness and generosity.

There were the holy tears shed around the table of adults who talked through stories of loss and crushed dreams and hope that the goodness of God is real. 

Perhaps one reason that words fail is that Hope Heals is not a camp that relies on words to convey its message. There is no systematic explanation of why disability happens (though there is plenty of room to ask questions and express fear and doubt and anger). There is no argument in favor of God’s sovereignty. There is just a lived reality of caring for one another in the midst of pain and celebrating in the midst of daily joys and affirming the inherent value of each and every one of us. 

Hope Heals is not Christian camp that lays out a message of salvation. It is a space that lives out a message of belovedness and belonging. I’m grateful we get to be a part of it.

https://amyjuliabecker.com/wp-content/uploads/2023/08/hope-heals-camps-photos.mp4

More with Amy Julia:

Hope Heals and Hope Heals CampPenny’s Take on Hope HealsHope Heals: Everyone Lifted Up

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. 

The post Hope Moments: Living Out the Way of Jesus appeared first on Amy Julia Becker.

Down Syndrome, Teenagers, and Holy Limits

Having a teenager with Down syndrome puts different limits on our family than having a typical teen. She has needs that other teenagers don’t have. 

For example, Penny isn’t planning to ever drive a car. We need to support her in learning public transportation and other ways to navigate the world. That support takes time. And effort. And repetition. 

I sometimes hesitate to admit these realities. I worry that people will think this means her life is an inconvenient one, or that her needs are not worth attending to, or that the reality of those limits somehow justifies the way our society treats people with disabilities.

But I have also begun to see these limitations as holy limits, constraints that bring goodness amidst hardship, boundary lines that bring possibilities and restrictions. 

All human relationships involve limits. And in the relationships based on love, I’m inclined to call those limits holy ones. Ones that slow us down into connection and care. Ones that require some sacrifice of time and opportunity with unknown benefit in return. Ones that remind us that we are created in love and for love. 

More with Amy Julia:

Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny Free Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome Limitations vs Limiting BeliefsS5 E3 | The Spaciousness of Limits with Ashley Hales

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. 

The post Down Syndrome, Teenagers, and Holy Limits appeared first on Amy Julia Becker.

Who “Deserves” Rewards? | Life to the Full

Modern people are rewarded for hard work, intelligence, athletic ability, and physical appearance. Studies have shown that people who conform to our modern Western ideals of height and what we consider attractive make more money. They receive the rewards of approval and security. Our society pays them what they are owed, generally, when they play by the rules and earn their status. 

But Jesus talks about a different kind of reward that comes for a different kind of person. He talks about rewards that come from the heavenly realms. 

At the end of the Beatitudes, Jesus says:

“Rejoice and be glad, for your reward is great in heaven, for in the same way they persecuted the prophets who were before you” (Matthew 5:12).

It seems like he’s saying that even if things go badly here on earth, God will reward us in heaven, as if we are just waiting for some cosmic jackpot. 

But Jesus also talks about how the heavenly realm is present here and now, so perhaps that reward is one we begin to experience here on earth. And perhaps that reward is very different from the reward we receive for living up to human expectations. Perhaps the reward of following Jesus and walking in his way is the reward of a relationship with him and an awareness of the spiritual realm all around us. Perhaps it is the reward of blessing, of belovedness, not the reward of achievement. 

For the past few weeks, we’ve read through what people now call “the Beatitudes.” These are Jesus’ proclamation of who God welcomes and includes and cares for. 

This list of blessings is an introduction to the way of blessedness, which rests upon a foundation of belovedness. Despite our mistakes and failures, despite the bad choices we make and the bad systems we participate within, belovedness is our core identity. 

Our bad deeds and hopeless experiences do not define us. Our good deeds and striving to prove ourselves do not satisfy us. Rather, we are invited to follow Jesus along the way of blessing.

More with Amy Julia:

Life to the Full | Sermon on the Mount Beatitudes Series

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. 

The post Who “Deserves” Rewards? | Life to the Full appeared first on Amy Julia Becker.

I Don’t Want to Prove Myself

Years ago, I met a man who had argued some cases before the Supreme Court. He had other accolades on his resume. I was excited to talk with him.

But when we were introduced, he turned to me and asked, “Well, what are your credentials?”

My chest constricted. I didn’t want to try to earn standing in his eyes. I didn’t want my educational background or connections or professional achievements to be the reason he talked with me. I said something vague, like, “I’m a writer, and I spend a lot of time with our three children.” He wasn’t interested in hearing more. 

This interaction happened about a decade ago, but it stuck with me as a warning of what I don’t want to do. 

I don’t want to prove myself.

I do want to be myself. I do want to offer the things I love and the way I think about the world and the subjects that excite me and the ways I can care for people and imagine goodness and pursue love. 

What if we all decided to stop trying to prove ourselves and instead believed that we are already enough?

More with Amy Julia:

“I’m Not Enough” and “I’m Too Much” Are Both Catch Phrases for ShameWhen Shame Becomes Joy and Guilt Becomes GratitudeAnxiety Has Served and Failed Me

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. 

The post I Don’t Want to Prove Myself appeared first on Amy Julia Becker.

Hope Heals: Everyone Lifted Up

In typical American life, some people win and others lose. Some people get the award and others get no recognition. Some people are considered better than others. It’s not that way at Hope Heals Camp. On the first night of camp, we all streamed into the chapel to watch the annual talent show.

The lineup included hula hooping, singing, dancing, martial arts, piano playing, and more. All of the participants had either an intellectual or physical disability, or both. 

What struck me about this evening’s show was the way that the crowd both anticipated and responded to each act. With genuine enthusiasm and delight, we cheered and encouraged each performance. The energy was electric and contagious. The most enthusiastic and sincere excitement came from a crew of middle school boys.

Kids who usually don’t get to perform were lifted up and exalted by this crowd of people. But this wasn’t a situation in which we elevated the people who often get overlooked, and the rest of us were denigrated. In honoring the most vulnerable among us, we all were lifted up. We all were exalted. 

When Jesus talks about the kingdom of heaven, this is what he says it will look like. “Those who exalt themselves will be humbled, and those who humble themselves will be exalted” (Luke 14:11). The problem comes when we try to exalt ourselves. The way we do that as humans is by putting others below us. When we lift ourselves up, we inevitably push others down. 

Penny closed out the talent show with part of her jazz dance from this year’s spring fest. Again, she was lifted up. And so was every person in that crowd. When we lift one another up, and when we allow God to lift us up, we all are exalted.

More with Amy Julia:

Hope Heals and Hope Heals CampPenny’s Take on Hope HealsHow a Dance Performance Gave Me a Glimpse of a World Made Right

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.

The post Hope Heals: Everyone Lifted Up appeared first on Amy Julia Becker.

All Kids Can Learn

All kids can learn, but when Penny was born, I was told only that she would have developmental delays and an intellectual disability. What if I had been told instead that she was going to be eager to understand the world? What if I had been told she would always be ready to learn? 

The people who told me about the delays and disability weren’t wrong. But their view of our daughter was woefully incomplete.

The ability to learn is not the same as intelligence. Every few years, we receive feedback on Penny’s raw intelligence that demonstrates the fact that it is hard for her to process abstract ideas, including time and space and emotions. We simultaneously receive feedback on Penny’s ability to learn the information she is presented in the classroom. (We also of course receive personal feedback on her kindness, perseverance, patience, and other tremendously important traits that are hard to measure on standardized tests.)

I remember when she first understood that every object corresponded with a word. Back then, Penny couldn’t speak words out loud—there goes that developmental delay—but she could begin to express her world through sign language. My mom, a preschool teacher said, “She is showing us that she can learn.”

She doesn’t need to learn everything. She doesn’t need to learn quickly. But she does need people around her who believe that she can learn and grow. 

There are all sorts of concepts Penny will never understand. All sorts of books she will never read. All sorts of jobs she can never have. 

So much more importantly: there are all sorts of people Penny loves. All sorts of books and stories and museums and paintings and experiences she would love to have. All sorts of projects she wants to try. All sorts of ways she will continue to learn.

More with Amy Julia:

Penny’s Education PATH ProcessPenny Sharing in Church for DSA MonthThe IEP Meeting Every Child With a Disability Deserves

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. 

The post All Kids Can Learn appeared first on Amy Julia Becker.