Thanks, Mom

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There she is. Mom.

This picture was taken back in 1996, during one of my visits to her and Dad’s home in Sarasota, Florida. I have another picture of her from two years later that means a lot more to me. But I’m reluctant to share it because it contains our entire wedding party, and I try not to post pictures of people without their permission.

Anyhow, the story I want to tell has to do with my wedding to Katie in 1998 and the role Mom played in making it special—as well as the role she continues to play, even though she has long passed on.

A Special Wedding Gift.

Two months prior to our wedding, Mom was pretty sick. The leukemia she had lived with for years was beginning its final march on her system. We weren’t sure she would make it to the wedding. We even began looking into moving the wedding to Sarasota so she could be with us. Continue reading

Stubborn Faith in a Heavenly Vision

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A chilly morning in Emmitsburg, Maryland

Here they are: our six kids. All sitting quietly at the grotto on the campus of Mount St. Mary’s University, in Emmitsburg, Maryland. “The Grotto” (a replica of the Lourdes grotto in France) has been a place of quiet, prayer, and reflection for students and pilgrims for decades. Many were the afternoons and evenings I spent here during my college years, and I feel blessed to be able to bring my kids up here every now and then.

It’s a lovely sight, isn’t it? Anyone passing by would look at them and think nothing but warm and comforting thoughts. “What a wonderful family! They must be the most prayerful, holy, and well-behaved kids. Their parents must be awesome saints!”

Ha!

Now, I don’t want to give the wrong impression. Of course my kids are wonderful. They’re loving and kind and generous and good-natured. I’m crazy-proud of all of them. But angels? Don’t fall for it. They’re everyday kids with all of the challenges and temptations that their peers experience. They all have a checkered history of both fighting these temptations and giving in to them–sometimes very eagerly. They’re kids; what do you expect?

But they’re not just everyday kids facing everyday temptations. They’re also autistic. Every one of them. And that adds layers of complexity. This past Sunday morning was a prime example of these layers—and the reason why we ended up here.

A Familiar Drill.

Two of our kids had a tough Sunday morning. It began early for them. And by early, I mean six-o’clock early. I don’t want to go into the details, but suffice it to say that when one kid’s specific autistic traits trigger another kid’s specific autistic traits, it never ends well. And it rarely remains contained between the two kids. The disturbance spills over to at least one more, and that’s when the fun really begins.

So by the time we should have been leaving for Mass, four out of the six kids had been triggered in one way or another (another one would have been triggered too, but he just hadn’t gotten out of bed yet). With the melt downs and resulting emotional chaos, it became clear that Mass wouldn’t work. They were too keyed up, their emotions too raw. So we activated Plan B. We loaded everyone into the van, and headed for the Grotto. It wasn’t hard, either. By this time, they know the drill. They know that a quiet time in the mountains is much easier than sitting in a crowded church wondering if Dad was going to spring a pop quiz on them based on the Scripture readings for the day.

Once we got to the Grotto we did a few things. First, there was quiet time in the Grotto itself. Then, walking the path out toward the main entrance, we prayed a bit of the Rosary—but just three Hail Marys each instead of the traditional ten. Then, just off the main entrance, we stepped into the Chapel on the Hill, where we read the first reading from Mass, and I said a few words about it. That was it: forty-five minutes of God stuff. And not once did I have to deal with any major objections, melt downs or triggers. They were good as gold. Just as I had suspected.

Visions of Heaven.

I think it was significant that the passage we read (Isaiah 11:1-10) spoke about God’s desire to restore creation to its original harmony. The reading is filled with images like the wolf and the lamb living together in peace and a baby playing by a cobra’s den. It talks about there being “no harm or ruin” and about the earth being filled “with the knowledge of the Lord.”

We normally read this passage as a depiction of heaven. But during Advent, the Church plucks this vision out of the distant future and tells us that Christmas is a partial fulfillment of the promises. It tells us that we don’t have to wait until we die to find the kingdom of God. Right here, right now, we can take one or two steps closer to the kind of peace Isaiah talks about.

This is what I told the kids in the chapel. I told them that I’m not giving up on this vision, and neither should they. God has promised, and I’m going to hold him to his word. I will keep teaching and supporting and encouraging them to become the best version of themselves possible. Even if the forces arrayed against us are large and intimidating, I am still going to lean on God and his faithfulness. I am still going to do everything I can and trust that God’s plan for my family mirrors the plan described in this passage.

Stubborn Faith.

This may sound unrealistic or heroic, but what other choice do I have? Ours is far from a typical family. We have so many challenges distributed across so many different personalities that we would never survive without faith in a generous, loving God.

I don’t mean a generic faith. I don’t mean a naïve faith that is really an abdication of responsibility. I mean the kind of faith that lets you yell and cuss at God when things get out of hand. I mean the kind of faith that believes in God’s direct intervention in our lives—according to his inscrutable wisdom and on his unpredictable schedule. I mean stubborn, grit-your-teeth-and-believe-despite-all-evidence-to-the-contrary faith.

I’ve said it many times before, and I’ll say it many times in the future: I am convinced that this whole messy, beautiful, frustrating, agonizing, energizing, liberating thing is God’s doing. And so every time the challenges get too hard, or the weight feels unbearable, I know I have recourse. I can tell God, “This is the family you have given me, so I’m counting on you to give us what we need to make it through. You didn’t send your Son into the world just to tell us to pray more and try harder. So here I am. I’m waiting. Take your time if you want, but I’m not going to let you off the hook.”

I don’t know. Maybe I’m being too cheeky. Too arrogant. But this kind of prayer has gotten me through some very rough patches in the past. What’s more, it’s the kind of attitude I want my kids to have: trusting in God, but also expectant; humble before their Maker, but with the familiarity of a child to his father; accepting who they are, but never settling for a “lesser” life because of it.

In other words, I want to teach them the same kind of stubborn faith I’m learning.

I think it’s working.

The Pyx in My Pocket

 

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Remember my post a few weeks ago about my daughter’s difficulty with getting out of the house because of her fear and anxiety? Well, something cool happened today.

Sunday mornings can be rough for my girl. She hates going to Mass now, because she’s petrified that she’ll have a seizure—and in such a formal, public place. So I’ve been letting her stay home, along with one of her brothers to keep an eye on her (no argument from the boys, of course). To make up for it, I’ve been bringing Communion to her and her brother every Sunday after Mass. I carry the consecrated Hosts back in a little pyx like the one in the picture, and we sit go sit on the back deck together. We read one of the Scripture passages from Mass, talk about it for a few minutes, pray the Lord’s prayer, and then I give them Communion. Short, sweet, to the point.

“I Don’t Want It.”

Today was different, though. She woke up deeply rattled by two separate nightmares. She had promised me that she would come to Mass today, but the nightmares did her in. There was no way she would leave the house, and there was no way I was going to push her.

So off I went to Mass with everyone else, carrying my trusty pyx in my pocket. In the Communion line, I presented my pyx to Fr. Keith and asked for Hosts for my two errant kids. I’m all too familiar with the drill, and so is he. So far, so good.

But when we got home, I discovered that my girl was too upset even to receive Communion. She was in our bedroom, curled up on the bed, her brow furrowed in fear. Her voice quavered as she begged me not to force her not to come downstairs for our weekly Communion service. “I’m just not stable now,” she said. “I don’t know what’s wrong with me; my nightmares are getting worse, and I don’t want to leave your room.”

“There’s nothing wrong with praying and asking God for his help,” I said. “Who knows? Maybe you’ll feel better afterward.”

“I don’t know why, but I just can’t!”

She was nearly in tears, so I put my arm around her, and offered up a silent prayer. This was worse than I had seen in a long time, and I was at a complete loss. All I could do was hug my girl, with a “loaded” pyx in my pocket.

Ninety Short Seconds.

Then it dawned on me. Maybe the Sunday morning ritual we had established was just too intense for her today. The mere act of going downstairs, getting the Bible, and sitting on the deck was just too much for her to handle. It seemed so easy to me, but not to her. If she just stayed inert in our bedroom, she thought, nothing would change. She wouldn’t have to face her fears. She would stay safe in the little sanctuary she had built for herself.

So rather than coax her out into my world, I tried to enter hers. “I have an idea,” I said. “How about we sit right here on the bed, and I just give you Communion? We don’t have to read the Gospel. We don’t have to do anything special. Just a quick Our Father, and then you receive. Can you do that?”

“I think so,” she said.

It took all of 90 seconds, and we were done. And you know what? It made a huge difference. The anxiety faded. Her smile (a slight one, at least) returned. Her hunched shoulders relaxed, and she breathed a little easier.

The change was so dramatic that I was actually able to convince her to come on a couple of errands with me. Of course, I bribed her with the promise of lunch from McDonald’s, but her willingness to join me was still a marked contrast to how she had been just minutes before.

A Mini-Miracle.

Now, I can interpret this episode in a number of ways. Maybe my persistence paid off. Maybe the memory of her nightmares had faded. Maybe I had chosen just the right words, and delivered them in just the right tone of voice. Maybe the good feeling she got from doing what Dad wanted softened her up.

Or maybe, just maybe, God actually worked in my little girl’s heart and calmed her fears.

This answer makes the most sense from a faith standpoint, but it also makes the most logical sense. The desperate scenario I described above was not going to change. My girl was far too anxious. The only variable that changed in the equation was the impromptu Communion service. She eased up only after she received the Eucharist—which we Catholics believe is the actual presence of Christ.

I know this sounds odd. I know it sounds like I’m trying to justify my faith. But I don’t care. As long as mini-miracles like this keep happening, I’m going to keep believing. As long as I find help and answers in prayer, I’m going to keep giving God the credit. As long as my kids can point to evidence of Jesus’ presence and his work in their lives, I’m going to go with it.

That’s why I’m keeping my pyx in my pocket.

A Gracious Apology

Sorry in the Sand

A couple of days ago, I posted about an online article that appeared on a Catholic website, which I felt portrayed autism in a hurtful and inaccurate way. I mentioned that I had contacted the author and asked him to either reword his piece or remove it altogether. I also promised that I would keep you all informed.

Well, guess what? He got back to me, and in very good time. His first message was part self-defense and part apology for any way I felt hurt by his words. He was gracious in his words, but unwilling to make any concessions. His message came late in the evening, and I was too tired to formulate a response that would help him see the effect his words were having on the autism community. So I went to bed a little disappointed, but ready to continue the discussion the next day.

When I woke up, I was greeted by another e-mail in which he said that after sleeping on it, he had decided to take down his article after all. Sadly, he was hampered by the fact that another site had picked up his piece, and he no longer had control over where it was going. So he came up with another solution—one that really touched my heart. He attached the following note to the beginning of his article:

AUTHOR NOTE:  In an attempt to address a serious problem I feel impacts the Church, I attempted to use autism as a metaphor.  I made a sincere effort to do so sensitively, based upon my understanding of the disorder. Since then, it has come to my attention that many people have been offended by my characterization of autism and my use of it in this context.  It was never my intention to offend any parent of a child with autism or any person with autism.  I have nothing but the deepest respect for the many people I know personally who live tremendously admirable lives in the face of the challenges autism spectrum can present.  Unfortunately, circumstances prevent me from simply removing this post (which I would have preferred to do to avoid unintentionally spreading any ignorance about autism), but I would like anyone who reads this to know that I am sincerely sorry for any offense I have given and that no disrespect was intended by my original article.  For those who would like the best information on how people with special needs can be welcomed in the Church and supported in their faith development I encourage readers to visit and support the National Catholic Partnership on Disability.  I thank you for your understanding.

What a kind gesture! He could have let the whole thing go and just move on. But he chose to speak honestly and humbly, acknowledging the hurt he had caused. I was quick to reply and thank him for what he wrote—and for listening to my concerns in the first place.

See what happens when you advocate for your loved ones? It wasn’t easy for me to write to this fellow; I was putting myself out there in a way I don’t normally do. At least not to strangers. But I knew I had to do something. I’m just grateful that he was reasonable and open-hearted enough to listen. But even if he wasn’t, it still would have been worth it. Some things are too important to remain silent about.

No Rules, New Rules, One Rule

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So last night, the Fourth of July, held a minor victory as our oldest kid did pretty well facing his fear of fireworks. All the kids did pretty well, in fact, with each one showing a little more improvement in the sensory processing realm. Plus, they got to stay up later than usual. Mind you, we didn’t go anywhere for fireworks. We’re just talking about the small-time crackers and roman candles that some folks in the neighborhood set off. Still, progress is progress.

Anyway, this morning we ended up paying for the late night and the extra stimulation. As we were trying to get everyone ready for Mass, we were presented with two very strong tantrum-melt downs from two different kids, one stubbornly tired kid who could barely keep his eyes open, and another one exceedingly anxious about the her siblings’ potentially bad behavior in church.

We tried to roll with it. We really did. But after a while we realized that Mass just wasn’t going to work. It was too risky. So we played hooky. Sort of. Rather than go to our local church, which is only a half-mile away, we loaded everyone in the van and drove twenty miles to Mount St. Mary’s University–my alma mater of a Catholic college.

A Mini Pilgrimage.

The van is a safe zone. Each of them can enter their own world, whether by staring out the windows or by putting on their head phones and listening to music or by taking a quick nap. It’s one way to help them press the reset button, and that’s pretty much what happened. By the time we arrived, they were doing better. Not great, but better.

We spent about an hour there, walking the nearly empty campus and visiting the Grotto, which is a replica of the shrine to the Virgin Mary at Lourdes, France. We ended with a visit to the grotto chapel, where I had the kids sit as quietly as possible for as long as possible (5 minutes) and told them to try to pray. Then we read the Gospel reading they would have heard if they had gone to Mass, I said a few words about it, and we left. Nothing big. Nothing dramatic. And no other people around.

The kids did pretty well overall. We did have to deal with some sensory issues and low-level anxiety. And our toe-walker started to complain about pain in his legs from all the uphill walking. But I was glad that they got the message that Sunday is more than just another day. It’s still the Sabbath. It’s still the day that we honor God as a family. They saw that the alternative to missing Mass isn’t a free pass to video games.

A New Rule Book.

I don’t like skipping Mass. I really enjoy the closeness to God that I feel there. And for the most part, I can see how it helps the kids. But as far as I could see, there really wasn’t an alternative.

This is one thing that I’ve learned again and again as an autism parent: you have to learn to live by a different set of rules. It seems that everything we do—from church services to school, to recreation to family gatherings—we do differently. And there are times that we have to throw out even our modified rule book. But that’s okay. Because the only rule that really matters is this: Love and accept your kids where they’re at, and they’ll be more likely to follow where you want to lead them.

Who’s Leading Who?

So today is Father’s Day. In honor of the day, I thought I’d dust off a post from a few years ago, update it a bit, and repost it. (That, and I’m too busy being a dad today to write something new.) So here goes:

Who’s Leading Who?

In one of the lesser-known resurrection accounts in the Bible, Jesus tells Peter: “When you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” The passage goes on to explain that Jesus said this to signify “by what kind of death he [Peter] would glorify God” (John 21:18-19).

This passage has always had special resonance for me, to the point of being a kind of interpretive key to almost all of the major events in my life. It sounds kind of grim, doesn’t it? All this talk about being led where you don’t want to go and dying—even if that death glorifies God. But that hasn’t really been my experience. Rather, I’ve found a surprise or two along the way as I’ve seen these words unfold in my life.

One major surprise came when I realized who it was who would end up leading me along unexpected paths: my own kids! Now I’m sure that many parents can relate. None of us really knows what to expect when we hold our first child. We can never fully appreciate how much our lives will change now that we have welcomed this new person into our lives. How much more when you are blessed with six children! And how much, much more when it turns out that all six children are on the autism spectrum!

Unexpected Paths.

I named an earlier post “A Little Child Shall Lead Them,” and I meant it as something more than a clever play on words. I can testify that my kids—all six of them—have led me in ways I never expected.

  • They have led me to the waiting rooms of psychologists and psychiatrists and speech and occupational therapists as I have sought to understand their challenges and help them make sense of them as well.
  • They have led me to school conference rooms, where I have advocated for them and labored mightily to convince unimaginative, one-size-fits-all educators to give them a fair shake.
  • They have led me to my knees in prayer—not desperate prayers for their healing, but impassioned entreaties that God will grant them a future full of hope, a future where their gifts are welcomed and where they can make a difference for other people.
  • They have led me down rocky paths as I have helped them work through sleepless nights; relationship challenges; full-scale tantrums; days-long depressive episodes; and anxious, hours-long perseverations.

Death and Freedom.

Now, Jesus told Peter this stuff as a way of hinting at the kind of death that awaited him. And that has proven true for me as well, in a more figurative way. No, I’m not writing from beyond the grave! But my kids have definitely led me to experience other kinds of “deaths”—

  • The death of my dream for a Brady Bunch kind of life. It was a pretty self-centered, self-indulgent dream anyway, and I’m glad it’s gone. Now I don’t have to worry about how clean or dirty the house is. Or about when my kids are going to record their first pop single.
  • The death of any rigidity or legalism I may have brought to my ideas of parenting. I have learned to become much more flexible and creative in my parenting. “So what if she wants to wear all black clothing to church?” “You want to stay in your bed to avoid the noise of the dinner table? Knock yourself out! Just make sure you eat afterward—and clean up your plate.”
  • The death of a few close friendships due to some people’s lack of willingness to “get” our family’s dynamic. This was especially hard at first, but I realized that it’s in times of difficulty that you learn what your friends are really made of. That’s when you have to decide who is really worth your time.
  • The death of a romanticized take on the spiritual life. There are no simple answers. There are no guaranteed formulas. And yes it’s true; sometimes God does give you more than you can handle. That’s why he gave us each other. It’s also why he created wine.

It’s ironic, but each of these deaths has made me feel a little more alive and free. Little by little, my kids have led me to a place of surrender. Not defeat. Not resignation. But acceptance. I have learned so much about myself; about human nature, both the bad and the good; and about God that I feel like I’m a very different person now compared to who I was when our first one was born. And that leads to the final part of this passage.

An Unforeseen Glory.

According to the story, Jesus was pointing to the way Peter’s death would glorify God. Well, I’m not about to think that I give God all that much glory. Not unless he is glorified in huge messes! But I do think that the deaths I listed above have helped me to see God’s glory in new, unexpected ways.

  • I see his light shining through my nine-year-old’s unassailable innocence, both when he’s in full melt down mode and when he’s completely aflutter with the joy of something as helping Katie cook dinner.
  • I see him shedding a tear when my fifteen-year-old gets himself tangled up inside and needs to be talked down from a ledge of self-condemnation.
  • I feel his arms around me every time I dive into yet another parent-teacher conference or begin yet another bitter disputation with the insurance company.
  • I see his covenant commitment every time I come home and watch Katie coaching the kids in homework, making dinner, and trying to help the six-year-old overcome his loud, insistent perseverations all at the same time.

So yeah, there’s a lot of good stuff that comes from these little, unlooked-for deaths. Leave it to religion to be so delightfully paradoxical!

This Is My Body.

 For those of you who don’t know, I’m a Catholic, so this last one comes from my faith tradition. More than anything else, I see God in the bread at Mass as he says, “This is my body.” But I don’t just see and believe. I’ve also found the audacity to pray in return: “Hey! Over here! This is your body, too—this precious family you have given me. We’re part of you, and we all belong to you. So don’t pass us over or forget about us. You made my kids this way, so you’re stuck with us.”

Then I go one step further and tell him, “And here is my body, my life. It’s nowhere near the image of you that it’s supposed to be. It’s still too much shadow and not enough light. Still, I offer it to you. Go ahead and keep leading me, even if it’s where I don’t want to go. With all of these little deaths, you have found so many ways to empty me. And I guess that’s fine. But now I need you to fill me and raise me up so that I can give myself—body and blood, soul and humanity—back to my children.”

And the Lord reaches out his hand to grasp mine, and responds: “Amen.”

Happy Father’s Day, everyone!

Hope. Faith. Love.

Groovy Love

For those who don’t know, I’m a Catholic, and I take my faith kind of seriously. I also like to laugh at how quirky Catholicism can be at times. Among all the Christian denominations, we have got to be the most precise bunch. It’s likely because of our ties to the Roman Empire. Compared to the Greeks, who tended to be more philosophical and flexible, the ancient Romans were legal-minded sticklers for precision. How else did they manage to conquer the world?

Off the top of my head, I can think of two ways that our Roman roots show up. First, there’s our almost innate desire to define doctrines to the umpteenth decimal point: mortal versus venial sin, degrees of cooperation with evil, specific requirements for fasting, for receiving communion, and all that. Then there are the numbers. So many numbers. Just look at the sevens for an example: seven deadly sins, seven corporal works of mercy, seven spiritual works of mercy, seven sacraments the Seven Founders of the Order of Servites. Then there are the threes: Father, Son, and Spirit; poverty, chastity, and obedience; Scripture, Tradition, and the Magisterium. And, of course: faith, hope, and love.

It’s this last trilogy that struck me today. I recalled how St. Paul talks about faith, hope, and love being the only three gifts of God that last, and how “the greatest of these is love” (1 Corinthians 13:13). And it got me to thinking about how these three virtues are the most important things we need as parents—and doubly so as parents of special-needs children. Forget Doctor Spock. Forget Doctor Phil. Even forget Doctor Who. All those self-help books at Barnes & Noble? Rubbish. All those listicles about parenting on Buzzfeed? Worthless. If you have faith, hope, and love, you’ll do just fine.

And because I’m Catholic, I will now tell you the right order in which you need them. *Clears throat*

Hope.

Every parent begins with this one. A child is born. He is beautiful, innocent, full of promise and potential. We look on this tiny person that is the result of our love, and we are gobsmacked. We have such high hopes for this little baby. Not necessarily that he’ll be an astronaut or a top chef or a CEO—although that would be great. We hope that he’ll grow and flourish and find happiness and love. That she’ll find her own special someone with whom she can make a family of her own. We dream of school plays and soccer tournaments and Christmas trees and family trips. We dream of (and dread) the driving lessons, the first date, the prom, and graduation day. Holding this little blessing in our arms, we can’t help but dream of the future.

Then the child grows up, and we see things that challenge our hope. Perhaps speech is delayed. Maybe he takes far too long to learn how to walk or use the potty. Maybe she doesn’t know how to mingle with her classmates in preschool. Maybe he always cries at the doorbell or any sudden noise. Something’s not quite right, and we worry about the future. Then the word “autism” enters our vocabulary, and we feel hope draining away. What about the prom? What about graduation? What about finding love? Is it all possible?

That’s when we look to . . .

Faith.

It’s faith that keeps our hope alive. Faith in our child’s innate goodness. Faith that he really does want to do well and to succeed. Faith in the team of care providers that we stumblingly assemble to give him every chance at a full and rewarding life—whatever that means. Faith in a God who would never abandon a child of his.

That faith sees us through the melt downs, the tantrums, the tone-deaf schools, and the unthinking or unaware neighbors. It lifts us up when our kid begins to go south, whether because of regression or oppositional behavior or depression or anxiety. It sustains us through the long, wearying days and helps us sleep at night. When hope begins to fade, faith tells us that despite what we are seeing now, better days are ahead. It gives us assurance that what we hope for will come to pass (Hebrews 11:1). It may not look like what we expected, but it will come. And so we press on, fueled by faith, toward that vision that we have hoped for.

But what happens when even faith wavers? What if the child we have worked with, prayed for, fought for, and even clashed with, simply is not making progress? Maybe he can’t overcome the next hurdle, or maybe he just doesn’t want to. Whatever the case, what do you do when hope has dissipated and you can’t place your faith in any of the resources you once relied on?

You still have . . .

Love.

And in the end, you know that’s all you really needed. Your dreams may not be fulfilled. Your doctors and therapists may be at an impasse. Your prayers don’t seem to be working. Nothing is going right, and you don’t know if anything good is on the horizon.

It doesn’t matter. He’s your son. She’s your daughter. And you can’t help but love. Even when you want to throw up your hands in despair, you know that this is your child, and that knowledge brings you back to sanity. It softens your heart, if only just enough to let you take the next step forward.

No matter what happens, love wins out. It may take years, but it will win. Because a child who knows he is loved, no matter what, will always have a glimmer in his heart, and that glimmer will offer some protection, some encouragement, some guidance in the dark days. Just as God looked at us and couldn’t help but love us, even when we felt lost and hopeless, we can’t help but feel love when we look at our children.

So even if he never learns to use the toilet, even if she never speaks a word, even if he ends up living all alone or in your basement, there’s always love. Good old, stubborn love. Because it’s the one thing—the only thing—that will matter in the end.