Surprise Cheesecake

Last evening we attended a party celebrating a friend who marks one year of living and working in these United States. It was a grand time made only slightly sour by Michigan’s loss against the Hoosiers (the Who?siers), with their Hoosier-y circa last year-style UM winning season. The event was catered by a true professional whose caliber was foretold by the use of the words pate and liver in the same sentence. I was intrigued but ended up going for the skewered poultry.

The host mentioned that the cheesecake was a flavor that could not quite be identified — “is it coconut or lemon or banana we’re not sure but it’s really good so try some” — and that was all I needed to hear. I ate a piece, noting the fine cookie crust and that it wasn’t a liver pate filling. With that came my rejoicing, like a Hoosier setting a couch on fire at a post-game frat party. So… I took some of the delicious pie, decked with a single blackberry on each slice, home to my family.

No, I didn’t stuff a piece in my pocket (forgot to wear my cargo pants). Rather, the host with the most — the most cheesecake, mind you — offered some for me to take home. It’s sitting in my refrigerator now, hopefully not wondering why I didn’t put it back in the freezer. And I’m trying to decide whether to eat another piece tonight. All signs point to yes.

The most surprising thing of the evening, besides Michigan’s penultimate comeback in the second half, was the cheesecake — it wasn’t from some secret recipe concocted by the master chefs and bakers who provided all the other good grub. Rather, it came from Batavia, IL, which you may or may not know is one of the distribution centers for Aldi. When I saw the box — that it was from a store and not from the caterer — I was befuddled and slightly amazed.

I think there’s a lesson in this.

  1. Value is contextual. Aldi is great, but not great like when professional caterers bring pate of anything. The pie’s presence amongst the excellence somehow made it even better.
  2. When we assume the best, we tend to find the good. When we assume mediocrity or worse, we find little things that prove our assumption.
  3. I can now report after several paragraphs and bites of cheesecake that the third slice isn’t quite as good as the first, though I’m not sure if that’s because I’m away from the swanky spread or if that I ate too much pie.
  4. Cheesecake is a pie, but not all pies are cake. Discuss.

NOW — consider this: God sees supreme value in us, not only in our being created in His image, but also in redemption through Christ. God values us within the context of Himself, not our own situation. God knows the truth but assumes, or, perhaps more perfectly, enables us, to live a radically different life through faith in Christ. And, while I get tired of cheesecake, He somehow doesn’t get tired of me and my monotonous prayers that certainly lack self awareness and God-awareness. Yet, in love, He listens and responds. As for the mysteries of our naming of things, I guess cheese is somehow involved, perhaps to the point where the FDA wouldn’t let it be labeled as cake. Seems like somebody found a loophole.

Do you realize how much God values you?

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Seattle

Zac and I spent a few days in Seattle, WA, where Starbucks was brewed for the first time and it’s usually raining, but not enough to douse the majestic sunsets that fire the evening backdrops of Elliott Bay. Whereas my hometown Detroit has a sculpture of RoboCop (seriously), I didn’t find evidence of a Dr. Frasier Crane statue, not that Seattle needs another reason for you to visit.

As a lifelong Michigander, I would describe the Puget Sound region as “Michigan but with the color saturation turned waaay up and the tension turned waaaay down.” Everything is green, yet considerably greener than the mitten state. Moss grows on trees like they’re dressed up to go someplace. The wilderness is like a scene in Avatar. Drivers on Interstate 5 move like I-696 in Detroit, but in slow motion. There is no discernible frenzy like you sense in the Eastside suburbs of Michigan. It’s called “The Emerald City” because it’s green all year ’round. The name has nothing to do with the recent legalization of a certain substance, though it’s what the glassy eyed guy at the airport coffee shop attributed the general calm to.

We encountered nothing but kindness with every human interaction. The Pike Street market featured headless fish swimming in a frozen lake, if by swimming I mean packed in ice, which I do — and they can be shipped anywhere in the USA, says the guy in the thick plastic overalls and rubber boots. A guy who grew up in Flint came to Seattle in the 90’s to be part of the grunge scene, which for him never quite materialized into a record deal, leading to his opening a used bookstore. His store playlist included music from an Eastern mystic chant album and not a single Nirvana song. The lady who sells gum “FOR THE GUM WALL” as the sign outsider her store shouts, suggested fire cinnamon peach rings when I asked about Atomic Fire Jawbreakers, which haven’t been published in years. We didn’t find the gum wall because we kept finding other things instead. No doubt Zac and I presented as tourists on our Lime scooters, especially when I couldn’t remember where I parked the rental car. We traveled many miles over the dark downtown street looking for a forgettable Hyundai that blended in with everything else. Where’d I leave that thing?

What we did was visit the pristine Pacific Northwest. But what we accomplished — what I set out to do — was most important. I described this excursion as a Father/Son Spiritual Retreat Getaway to Zac. We lived like Monks in a temporary Monastery that we established in a typical Air B&B in Port Orchard. We watched the seals bob their heads out of the water instead of Netflix and YouTube. We read scripture slowly and talked about how God talks to us as we aim to have the mind of Christ. We prayed for whatever came up and caught inspiration from the randoms. So disconnected were we from the world in that little beachfront house that my wife called to tell me who won the presidency.

Of course Zac wants to move to Seattle when he grows up. He broke this news to me as we ate Burgers and McDonald’s type fries at an 80’s diner facing the downtown waterfront, delightfully playing Back to the Future II in the background. Zac saw that the idea of him growing up and moving on with life in a couple years made me sad. He was kind enough to break it down and say “Don’t worry Dad — I’m only halfway through 10th grade… I’ve got like… I dunno… 900 days yet where I’ll still be at home,” which made reality even more stark for me. I ordered a Pepsi Free and sat in that thought with him for a minute.

The genius of wisdom is that it is acquired through experience over time. The tragedy of wisdom is that the adolescents who need it most are often farthest away from it. All of our kids have a certain wisdom that comes from loss and tragedy, but it takes an old man like me, with the haircut and grey beard to prove it, that the next few years will zoom by.

Seattle was a good place to exist for a few days. There’s always perspective after a trip like that, little turning points and lessons that one carries into the next leg of the journey. Time spent shaping the souls of our kids is never a waste and far more important than we factor into our day to day hustle. Truth: work goes on without me, I am still needed at home, I love my wife who sent me away for a few days as a plan B to our original intent for the week, and I need to take moments to reflect on what kind of soil tilling Jesus did in Zac’s heart and mine. Like Tulip bulbs planted in Autumn, the petals will tell the story sometime in the future.

We found our rental parked on Elliott street, just south of Wall Street. I remembered the Wall Street part (easy) but forgot the Elliott part. Half of a coordinate isn’t much in an unfamiliar place, but it all worked out.

As it usually does… except for the trout.

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100 Days Later…

Lexi died 100 days ago. She would’ve been 20 years old last July. This morning she would’ve complained but complied while getting out of bed, saying (in not so many words) that she’s only a morning person after 10am. Probably chicken nuggets and yogurt at school for lunch, then more therapies to keep developing her fine motor skills. Perhaps a speech pathologist would’ve kept working with her to work on articulating the letter P, which would’ve been followed, naturally, by potty training and maybe a handful of Goldfish crackers — someone else’s on a nearby plate. She was leisurely unless it came to swiping other people’s food, not unlike how a frog kinda lounges around and suddenly reaches for a fly with its quick tongue.

Lexi was full of surprises and contradictions like that, often pretending she couldn’t do certain things in anticipation that a compassionate person nearby would see her plight and pick up her drinking cup that she threw across the room. If you told her to do it herself, she’d get right up and snag it, confounding onlookers as she gave a sly smile, reminding us all that things are not always as they seem.

Brittany would’ve conducted no less than 100 phone calls and texts in as many days, maintaining her medical and educational care, ensuring that Lexi had exactly what she needed at every juncture. We would’ve still scratched our heads, along with the medical people, about what exactly was ailing her. No, she can’t point to where it hurts, but she’ll swipe that poorly guarded candy bar from your front pocket, thank you very much. Now, if you wouldn’t mind indulging her by opening the wrapper… another sly smile.

20 years is a long time where seconds pass slowly and months go flying by. She required much but taught much, engaged in the world at her own level and whim, and modeled for us zero tolerance for counterfeit humanity. She was a soul reader, knowing more about the person than they could ever speak. I still don’t know how she did that, but I knew she had compassion for me in the tough times and reality checks for my inborn selfishness. You had to become a better person to take care of Lexi, which gave her the uncanny power of calling people to rise to the occasion by her sheer existence.

Someone asked me how it’s going. At this point, I can best describe being Lexi’s dad like serving in a war where you encountered raw humanity yet, at the same time, made lifelong bonds as the person you were designed to be came to exist because it was so hard. Raising a child with special needs refines a person — as if going through a long tunnel that plunges you in a darkness while encountering sudden bright geodes catching the beam off of your flashlight and shimmering, a kind of beauty that can only exist underground. They don’t typically mine diamonds in beautiful places.

Some people know exactly what I’m talking about. Others have yet to encounter this paradox of life, a world where God allows and uses suffering to shape us as we encounter impossibilities and overcome, enabled by a brand of grace that is meant exclusively for journeys like this.

I miss Lexi. I miss the paradox. I miss the contradictions. I miss moments where she demanded I sing. I miss coaxing her out of bed for school 10 hours after begging her to go to sleep. Her will was often stronger than the prescription, which made me a stronger person. Not perfect, but better.

Changing a diaper is glamourus for about six months of a person’s life. 20 years is a long time. I’m not complaining, because that’s the kind of biological disaster that will bring a person down a few pegs. Did I just speak to a crowd of 3,000 people? Yes. Do I need to clean under my fingernails now? Yes.

If this were a typical Friday, Lexi would soon be getting off of the bus and making her way to the house, angry at the three stairs that go from the garage to the kitchen, yet thrilled to sneak a cookie off the counter and high-tail it for the couch. It’s time for YouTube, another thing that she mastered without anyone’s help. I marvel at the juxtaposition between her incapacities and abilities. Just once, I should’ve let her try driving a car.

That’s what they told me, by the way — that she would never drive a car or live by herself or get married. The doctor was warm as he broke the news, holding 2 week old newborn Lexi gently in his hands. I never got to walk her down the aisle to her husband, but I had the honor of walking her to the bus every day, as if to say that, in either case, I’m your dad and I love you.

There are challenges in your life that will teach you more than the people next door who face dissimilar challenges. It’s one thing to get your lawn just right — another thing altogether to clean dried oatmeal out of Lexi’s hair every day. Not that she was unkempt, just active, sweet, and sly. I love her and wish she was here today.

Embrace these challenges and the people involved. I dare say you’ll miss them — not the tough part, but all the moments of beauty that, like any geologist will tell you, can only be found in the dark underground. These are truths I knew nothing about before Lexi. Until I see her again, I trust my daughter to the hands of her Heavenly Father, the one who embraces with even greater warmth than the doctor who told us what she wouldn’t be able to do while she was here.

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The Lexi Dreams

I spoke at a family camp 10 or so years ago and talked about how my daughter Lexi is non-verbal yet a great communicator. I talked about the heartache of never having a “regular” conversation with her, but balanced that with the joy of communicating with Lexi in ways she and I both understood. I did most of the talking (she was a great listener) and she would do the looks, the demands for songs, the customary request for oatmeal and peanut butter. Mourning Lexi is something I’ve been doing all her life, from the moment she first appeared at the hospital and I knew something was up. Nobody on the medical team said anything, but I knew right away. It would later be confirmed that she had Down Syndrome. Perhaps they knew all along and didn’t want to ruin the moment. I’ll never know.

At that camp I shared all this, talked about other stuff (they probably don’t remember what and neither do I), and we closed the service with song and prayer. A man came up to me to chat afterwards. He thanked me for talking about Lexi and shared that he had a vision of me and her someday reuniting in heaven, with her running to me and shouting “Hi, Dad!” He shared with such conviction that I thought twice before kindly shuffling that comment off to the side — admittedly, people say some pretty bizarre things when it comes to special needs kids. This time was different and, not just plausible, but inspiring.

Fast forward to now: Lexi has passed, is in the arms of Jesus, and I find myself asking again and again: can you make it so I can hear her? Can I see her for a minute? Or even a brief second?

Can you make it so I can hear her talk to me?

This prayer hasn’t been answered. I’ve had a couple of dreams about Lexi, but she’s her normal Lexi self, wearing her big grey coverall pajamas. One night, it was a dream about her trying to get into my truck so we could go home. Another dream included her hanging out on the couch like she always did — happy, singing, and ignoring me because I wouldn’t give her a chip (or whatever I was eating at the time).

All normal, Lexi kind of stuff. No sentences. No revelations. No conversation. Just Lexi.

I suppose that’s what she’s like in heaven. I don’t know to what degree God fixes things, beyond the overarching idea that He makes all things new. Does that include mangled DNA strands weighed down with an extra chromosome? Will Autism be vanquished? These are the questions that run through my mind. Can a person still be the person they are if you change such defining characteristics about them? You could expand the palette of questions: will Grandpa be the grandpa I remember or some young man wearing a fedora hat, as all people of that era seemed to do at some point in their post-war era lifetimes? Will I have hair again? Will Lexi be the Lexi we know or the Lexi she was intended to be, pre fallen nature?

And, if I have hair, will she recognize me?

Who am I to ask for such a miracle (seeing Lexi now, not the hair thing). God is faithful, merciful, and provisional. He owes me nothing. But the question — the honest prayer — remains. Were God to answer the prayer for a Lexi sighting, what would change?

I was hanging around a Cabela’s once and saw my mom — yet she had died years earlier. It wasn’t actually her, just a person who looked a LOT like her. For a moment and from a distance, I imagined it was her (weird, I know) and that we drove together to look at, oh, I dunno, fishing equipment. It gave me peace yet it hurt deeply. But I’m glad it happened.

I look forward to the day I get to see Lexi again so we can pick up where we left off. Whatever that may look like.

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When Grief Moved In

This week has been more difficult than last week. Chalk it up to shock, disassociation, or the unpredictability of grief. That’s what I’m told it is — the unpredictability of grief. We break an arm or get the flu and expect steady improvement from one week to the next. Grief, however, is not a sickness or a disease. It cannot be treated, it does not follow an identical trajectory from one person to the next, or from one week to the next.

Grief is like an intolerable roommate who is assigned his own room but takes over the entire house. Grief sits on your couch (in your spot) and cooks beef stew without cleaning up the kitchen afterwards. He keeps you up at night with sad, loud music that shakes the walls and has the audacity to sing along off key. The next morning the house is quiet as Grief must’ve fallen asleep on the ratty couch downstairs, but you can’t rest because you know that he’ll be bounding up the stairs any second, likely at the most inappropriate time. I expect grief to knock over the Christmas Tree this December.

I had every intention of jumping back into normal life yesterday. I wanted to pick back up where we left off two weeks ago. Walking up to my office on the 3rd floor felt surreal. I can’t explain it, except to say that things look and feel different now. Not dark, not sad, and no, it’s not a new coat of paint or the faint smell of popcorn or anything. It just felt different. Keeping my concentration was difficult but the distraction of a couple of big projects and looming deadlines (self-imposed) were a welcome relief, but I only had so much energy. It’s difficult to focus on anything right now.

Then there’s Cam. Thank God for my son Cameron. He’s 7, which means he understands factually and emotionally — to a certain extent — what happened. Yesterday he played a song in Lexi’s honor on one of her keyboards. He’s seen me sad a time or two (or 17) and says something like “I’m sorry that Lexi is gone, Daddy” and then gives me a hug or a reassuring hand on the shoulder. He’s got a good heart. AND a lot of energy. We’ve been playing basketball and frisbee like normal. Like normal, but not normal at all. It’s a strange spot to be in. Grief is the unwelcome third player in every game.

Our other boys are more lament-y. Lament-ish. Lament-ing. Wait: lamenting is actually a word. And it’s a good word to describe the vibe ’round here. Knowing glances and sighs, sudden hugs, and a general malaise fills the space. Turns out grief has the time to hang out with all of us.

Especially Brittany. Britt became Lexi’s mom in situation at first and ultimately by law, but always with her whole heart. She and I sat with Lexi right after she passed. It’s like Britt and I are still in that room on the 5th floor, flooded by the sunlight of a summer day while holding our daughter’s hand for the last time. We shook hands with grief (again) that day. “Mind if I stay with you guys for a while?”

Grief won’t ever leave us completely alone, but he’ll eventually move out, insisting on visiting from time to time for the rest of our days. Until that day, I’m here with him and, right now, he won’t stop staring at me.

Of course, there’s a far greater and more powerful presence that, for reasons of mystery, doesn’t kick Grief out. That’s the other set of eyes on us at all times — eyes filled with compassion and warmth, love and (best of all) presence. “I’m here too, and I’ll still be here when Grief moves out.” There’s unexplainable peace in the presence of Christ. I can testify.

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How Are You Doing?

It’s a universal question we ask each other whether we’re about to order a Latte or checking in on a friend after their daughter died. I can say that I’ve been in both situations now. By the way, when they ask “what’s a good name for the order?” I always say “oh, I dunno… let’s name it Julia.” This is a dad joke that has a 38% success rate.

How are you doing?

We follow the social script in both kinds of situations, though the second one is a bit more complicated. It depends on who’s asking and from what perspective. In rare cases, whether it’s a general query about your Monday or out of care and concern for mourners, “doing ok” works just fine. “Fine” is also an acceptable, albeit loaded, answer.

But no, I’m not doing ok. We’re not ok.

Sometimes my Apple Watch tries to run Amazon music and it doesn’t connect properly for some reason, perhaps because of a spat between corporate titans Tim Cook and Jeff Bezos. Every time I play a song on my phone, my watch pulls up the Amazon music icon, followed by a message that says “something went wrong.” And I mutter under my breath “I’ll say it has…”, which causes the barista to say “pardon?” and I say “oh, I dunno… Fredrick.” See, I’m pretending they’ve asked me to name the order the way a person might name a child. It’s a terrible dad joke that I highly recommend.

Her name, by the way, is Alexis. Was Alexis? No, that’s still her name, in the present tense, though she’s not with us at present. The child grew up and became an adult and almost reached her 20th birthday, a milestone that I assumed we’d easily reach. I always had a sense that Lexi would pass before me, but I didn’t think it would happen this suddenly. 20 minutes before she died, it took 4 medical staff to administer an injection to help her calm down. It’s not what took her life but it did temporarily calm her and give some level of comfort. No, she’s gone because of complications with her digestive system that, based on scans from the past, started developing 9 years ago but finally caught up with her.

I have to wonder if, the moment she realized she could no longer eat her favorite food — oatmeal with peanut butter — she figured it was time to go. I had already told Lexi that, if she saw the Lord, she’d be able to run to his arms and hear the best rendition of Wheels on the Bus. She took me up on that. It was one of only a few times when her strong will wasn’t strong enough to disobey her father and, in a moment of terrible beauty, run to her Father.

My job as her dad has changed. For the fist time in nearly 20 years, I don’t have to worry about who’s taking care of Lexi. I didn’t comprehend the amount of energy and attention that went into that until now. Piles of stress and motion that were dedicated to Lexi care now have nowhere to go, and I’m bouncing off the walls. Caring for a special needs kid is a glorious task, but it is stressful. Not having Lexi here is stressful, too. The difference is that all that stress suddenly has nowhere to go, and I find that exceedingly difficult right now.

When we left the hospital room for the last time, walking out proved difficult. Even though others carried the day to day of managing Lexi, she was still on my radar. For Brittany and I to leave her body there without a Torri or a Shirlene or Annie (to name only a few who took care of her over the years) was impossible. A floor nurse saw us as she walked by and came into the room. Britt said “I don’t know how to do this…” and the nurse embraced her and cried, too. We all cried as Nurse said that she has a child with severe special needs and understood. She promised to watch the door until they came to get her. It’s silly — it wasn’t like Lexi’s going to get up and leave or need water or someone to sing to her. I knew that here (points to head) but not here (points to heart).

We walked out, my wife and I, holding hands and making our way down the hall for the last time, in total shock. Lexi was gone, and our role as her parents shifted. I have comfort in knowing that she’s truly in good hands now, but the pain of the intangible cannot be ignored.

And here I sit, going through hundreds of pictures from age zero until a few days ago, wondering what I’m supposed to do now.

A few hours ago, when the sun was still up and our neighborhood was crackling with its nightly energies, I heard one of the neighbor kids singing “The Wheels on the Bus”, which caught my attention and brought me back to those early morning when I’d walk Lexi to her school bus, backpack and seatbelt harness properly fitted. Those daily driveway journeys gave me the same thought again and again: I would never walk my daughter down the aisle at her wedding. Instead, I had the daily honor of getting Lexi dressed for school and walking her down the driveway to her bus. When I see what some of my dad friends face with their daughters, I count it all joy that my job was, in many ways, considerably easier. I remind you, though, prayer warriors, that we have 4 boys yet to fully raise. So watch out.

How are you doing? Good question. We’re planning a memorial service for our daughter, which isn’t the way it was supposed to go. We hope you’ll be there and can get a glimpse of the joy and life that Lexi brought to our world. She was for me an implement of spiritual formation and an unmatched source of happy. Whether a full strength hug or a swat to my face, she had the power to instantly shift my mood, as if putting me in my place. With Lexi, it was all about perspective, because the wheels on the bus kept on going round and round even on the dark days.

This is a dark day infected by hope. So yeah, let’s name the order… Lexi.

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Lexi

Friends.
I need to share sad news.

My daughter Lexi passed away yesterday. It was surprising but not unexpected. Some of you know that Lexi’s been dealing with severe digestive issues that had her in the hospital for almost three weeks. Though the presenting problem was “fixed”, she went home with other challenges that got progressively worse. On Monday we took her to the doctor for what we thought would be a simple bronchitis/pneumonia treatment after one of her teachers said that she sounded pretty miserable. From there, she quickly descended. Or, in this case, ascended to the arms of Jesus.

Her last days few by quickly enough that doctor/nurse who predicted her outcome utter total shock. We’re shocked, too. Thankfully, the night before she passed, Lexi had some quality time with her brothers, her mom (Brittany), and I. It was especially helpful to have B’s mom there, a savvy nurse who’s seen it all and helped us understand the gravity and complexity of Lexi’s situation.

My prayer was that Jesus would fix it here, and, but if it meant a lifetime of additional severe suffering, to fix it there. See? He’s still God because I gave Him options (wink). He answered that prayer by giving her the best life she could’ve had right up to the moment she passed. Minutes before she passed, Nana Karen sang all Lexi’s favorites to her — Itsy Bitsy Spider, Head and Shoulders, Twinkle Twinkle, and, of course, her absolute favorite: Wheels on the Bus (with ALL the verses).

The wheels go ’round and ’round, the people go up and down, and the Lexi’s on the bus blow raspberries. All through the town.

There’s so much more to say, but we’re still reeling and processing. The few that were in the know have been very kind and supportive. Lots of love, lots of prayer, lots of reminders that our faith is in Christ (1 Thessalonians 4) and that we grieve within the parenthesis of hope. I’m no studied theologian, just a husky pastor, but I do know that Lexi is with Jesus and with those who knew her and left far too early as well. There’s quite a reunion going on right now. I smile through tears as I say this.

Blessed are those who mourn, for they will be comforted.

That night before she died, I was rounding up her brothers after a beautiful/sad visit to head home for the night and try to sleep. Brittany stayed by her side the entire time, advocating for and loving her in a way that I can’t even begin to articulate. It was difficult to leave, but B and I were in a divide-and-conquer situation of parenting in two different orbs. When it was time to go, I whispered in Lexi’s ear that the next conversation she and I would have would be in full English, where we understood each other in a way we haven’t been able to yet. I said “you and I have a lot to talk about, and I can’t wait. I love you, bear.”

I didn’t know she would be gone hours later. None of us did.

So here we are. A celebration of life is in the works. Though I plan on sitting next to my wife for that service, I already have plans to lead a crowd sing along of Lexi songs. If she ever interacted with you, no doubt she asked you to sing. Perhaps forcefully so, not being one to take NO for an answer. If you said “I don’t have a good voice, you don’t want to hear me sing…” she’d dismiss that lie and implore you to proceed. She was no Simon Cowell, she never vetoed a soul, and, if I know my daughter, expects that you’ll sing it again. For her.

The lyrics will be on the screen. No excuses!

Thanks for your continued prayer for my family. We’ve experienced a lot of loss. It’s confusingly bittersweet to know that she’s gone from here but in far better shape. All the limitations and challenges she knew are graciously lifted. The day will come when Lexi and I can pick up right where we left off, though I bet she’ll have some worship songs in the mix too. Can you imagine what she sees right now?

I love you, Lexi. Thank you for teaching me so much. I’m so glad I got to be your dad.

I’ll miss you. See you soon.

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