A Way to Help

The following is a testimony I gave at my church earlier this year. I have provided an update at its conclusion.

I spent summer and winter of 2018 in a state of rest that we half-jokingly called my “sabbatical.” This was a time for rest and healing and, as the balm of those two things took hold, of active listening for the Word of God. In those months I lost many things I knew I could not get back, but I also knew that as I healed, God would call me when and where I was needed. I now had time on my hands and space to breathe; all I needed was God to point me in the right direction.

A couple of months ago, Andy and I got an email from a local advocacy group asking if anyone would be willing to sponsor a family seeking asylum. The family was in Tijuana and wouldn’t be allowed to cross into the US unless someone on this side would promise to get the family here and help them out once they arrived.

I had time. I had space. I had resources. I emailed back within minutes. Andy and I would be happy to help, I said.

This last Tuesday the mom, whom I will call SJ, and her three children arrived on a red eye from San Isidro after spending several hours at a McDonalds where ICE had dropped her and children. Gratefully, through a network of concerned individuals, we were able to secure overnight respite in the house of a well-placed angel willing to help a family in need.

At 7am Tuesday morning, I watched SJ walk through the airport, carrying a one-year-old baby and an extra-large duffel bag—did I mention yet that SJ made this journey without a stroller? That means she was lugging a one-year-old from Tijuana to San Isidro to Maryland.

So perhaps it goes without saying, but SJ is an amazing woman; her children are, too. Her oldest is a brilliant artist and has handily beat my daughter in chess many times. Both she and SD have made ample fun of my Spanish skills. The one-year-old is a champion sleeper and the eight-year-old boy and my son hit it off immediately, speaking a boy-language of shoves and wrestling moves and video games.

When SJ and her children left their home behind, they also left behind two bunnies—both named “bunny”—a chow puppy named Chowbella, and a big yard to play in. They now live in a two-bedroom apartment with a total of 10 people. The 10 people are spreading what money and food they have between them, but ten mouths are a lot to feed.

Andy and I are continuing our sponsorship of this wonderful family and are learning as we go how to best do that. Tomorrow I take SJ to see an immigration attorney and Wednesday I will drive her to enroll her kids in school. Thursday Andy will take them to Baltimore for their Immigration check in. Beyond that, we’ll play things day-to-day.

On this day, my sponsorship activity is this testimony. Both so you can feel the joy of a successful story—against every odd they made it to the United States—and also so I can ask you to consider what you might be able to do to help this family get on and stay on their feet.

Their main needs right now are adequate housing and assistance with daily expenses such as groceries and toiletries. If assisting this family is something you feel called to do with the time, space, and resources you have, please let me know.

Most importantly, please remember this family in your prayers, and ask for God’s providential care over them as they begin their new life in the United States. Remember too, that when we slow down and listen, God will speak.

Since I wrote these words several months ago, much has changed. The two school-aged children are thriving, making friends, learning English, and becoming accustomed to a different way of life. The baby is confident, smart, and obsessed with our puppy. Most importantly, SJ and her children have found an apartment to call home. Each month is a struggle to make ends meet; SJ’s income does not cover essential expenses and we are often scrambling to find a way to ensure each person’s basic human needs are met. To that end, we have established a Go Fund Me page to help this family with their day-to-day expenses. Any amount helps, and I ask you to consider whether a donation to this family is right for you.

 

 

 

Every Child Matters. Every Child.

According to an audit done by the Office of Inspector General (OIG), in the summer of 2017 there was a significant increase in children who were separated from their families at the US/Mexico border. The Trump administration did not officially announce its family-separating zero tolerance policy until June of 2018.

The children detained after the policy’s official implementation have mostly been released to their families, and the Department of Homeland Security (DHS) maintains that the children detained prior to implementation have been similarly reunited.

So. No harm no foul?

I don’t think so.

There are a number of frightening things at play in this latest bit of breaking news, one of which is that while DHS and other government agencies can say these children have been released to their families or “sponsors,” the truth is, we simply don’t know. It appears that the government agencies responsible for these children can’t really know either, as the number of pre-policy detainees has been put in the vague range of “thousands” of children, and no adequate records of these children exist.

There are many (MANY!) jaw-dropping pieces of news floating around right now, but I implore you not to ignore this one. Even if the relevant agencies knew without doubt the exact number of children and had proof positive of reunification, the question remains: how did we, the American people, not know about this?

(DHS spokesperson Katie Waldman maintains that the practice of detention has been going on for decades, and so at this point it should be well known and old hat. What Waldman is referencing, however, is detention of unaccompanied minors, which is not what is at play here. I’ve worked with a few of those minors in the past and feel generally well informed about what goes on in those equally sad cases.)

There is no need to wax on about why this story should break your heart, make you so angry you could spit, or send you to the streets in protest. I assume you already feel all of those things and more.

But what feels even worse is what this all of this implies for the collective soul of our nation.

As someone who prays daily that we might all be able to fully realize one another’s humanity, it is this type of news that renders me breathless and overwhelmed. I cannot think of many clearer cases than this of failing so completely to see the face of God in others. When a parent of five knowingly and intentionally separates a child and parent, I can think of no other reason for it. Because if the humanity of “others” was realized, that person would know there is no difference in how “their” children versus “our” children feel when taken from their parents. No different heartbreak for a mother or father when his or her child has been taken to God-knows-where and is being cared for by God-knows-who. Have no doubt about it, memories of this moment in time will be reflected by history books, and we will not like what our grandchildren will read of it.

And then there’s the helplessness to stop it.

Because yes, while we, the American people, put so much pressure on the President that he signed an executive order meant to end the practice of separation, and the courts compelled reunification of the families, we didn’t even know about the thousands previously detained.

As a mere citizen, there are a large number of things I don’t know about what goes on in the world. I’m well aware of that, and I know that in most instances there is little I can do about it. So, I push those things aside and focus on what I can do now, and how I can learn to do more in the future.

But this. I didn’t know about this?

As a long-time child advocate, as someone whose primary concern in life is the care of children, this frustrates, saddens, and angers me beyond belief. It is something I feel in my gut. In the tips of my toes and in the pounding of my temple. It is one of those things that makes life unbearable, and yet makes me realize that with the one life I have, I better live it well and for not just myself, but for the well-being of others.

News stations don’t seem to be focusing much on this story, although every reporter I’ve listened to says the news is “huge.” Instead, the focus today is on the letter-writing pissing match between Speaker Pelosi and Mr. Trump. Today’s other, more important news is a much-needed reminder to focus on the things that truly matter. Not trips to Brussels, but children.

 

Thinking too Deeply about Marie Kondo

I’m bad at many things in life (math, geography, and basketball come immediately to mind), but one thing I know I’m good at is tidying, cleaning, organizing, and maintaining a clutter-free environment (household members’ spaces excluded, since those aren’t mine to touch).

So other than for pure OCD enjoyment, I’ve generally stopped reading about the best ways to purge, organize, and clean.

A recent exception to this is the work of Marie Kondo.

After seeing so many of my Facebook friends referencing her, I decided to check her out for myself. I see why she has such a wide following! Her ideas and methods are simple, clear, and steer us towards a place too few other things in life do, which is that of curating our lives for the sake of joy rather than materialism. If it doesn’t bring joy, out it goes!

With that said, I’ve also read several articles pointing out the KonMari method doesn’t really work for those with small children (which is true), and that prior to Kondo’s smashing success, NAPO took issue with perceived all-or-nothing draconian ways (there’s debate about this). But what I find myself struggling with is neither of those things, but rather the impact of Kondo’s work on historical preservation.

My mother lives in my home and has quite a few things in her possession that she has made clear she expects me to keep after her passing, then leave to my own children when the time is right.

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Mother’s, grandmother’s, and mine.

Most of these things don’t bring me joy, nor do I think they bring joy to her. But they do have a significance that if overlooked would be tragic.

For example:

My grandmother’s sorority pin (I was never in one). The torn and faded photo of my great-great grandfather with safari hat and rifle, holding up proudly the jungle animal he’d just killed (vegan here). The leaded oil and vinegar set no one can use anymore because, you know, lead.

What about handmade quilt fragments from several generations ago that take up valuable linen closet space and smell slightly (or not-so-slightly) of mildew?

To be fair, Kondo does make exceptions for certain things: super special baby clothes? Frame them. Art from the first day of kindergarten? Put it on display.

And yet … there is so much more than that to a family’s history.

Will anyone want the cremated ashes of my recently-passed German Shepard? Probably not, but when my great-great grandkids find the lovely (sealed) urn and corresponding plaque, and realize it goes along with the photos neatly arranged within a dedicated photo album, they may think it’s a little weird and creepy, but they will also be awed to hold those bits of history in their hands.

The Spode Christmas dishes I bought for 80% off? 100 years from now a future descendent will lovingly set them out for Christmas dinner, admonishing her children to be very careful with them given their family significance and age.

My mom has always said one of the meanest gifts you can give someone is a Bible they don’t want, like, or need. Why? Because who the heck is going to get rid of a Bible? (Don’t answer that). And they’re big! I have so many Bibles from so many family members that they take up an entire two shelves in my home library. Do I need all of them? No. Do they all spark joy? Not really. Some do, like my father’s. But what of the family tree neatly chronicled in Uncle-what-his-face’s Bible? I may not have ever met him, but man, that handwritten tree is historic.

As I read through the specifications of the KonMari method, I began to question my recent decision to save in a special box all the Christmas cards we receive each year. My original thought process was that someday a future generation will stumble upon and untie the box, and fully enjoy the found faces of babies, now grown or gone, or notes that at the time were quickly jotted – “pray for us during the shutdown!” – that have since become museum-worthy.

And I would be remiss if I didn’t note that sometimes items saved don’t just fail to bring joy, they actually bring great sadness.

And yet … in that sadness there is a memory we would never choose to purge.

The clothes of my first son, gone now for over two decades.

A red rose saved from my father’s casket.

A photo of a broken-out window, leftover from a marriage gone horribly wrong.

These are things that remind us who we are, where we’ve been, how we’ve loved and been loved. Of how we were once brought low but then rose up by virtue of a strength we otherwise might forget we have, and by a God we learned would always be there, no matter how bad things might get.

So while I say tidy up! Declutter! Fold your socks until they are perfect rectangles that stand on end! I also say keep. Remember. Hold tight.

Because what’s important doesn’t always spark joy.

What sparks joy doesn’t always do so for the best of reasons.

And the space we want to see decluttered might be better off overflowing with what will later bring joy to someone we’ll never meet, tell a story in need of telling, teach a lesson in need of teaching, or lift someone from the ashes of despair as they see historic proof of struggles overcome and the life-affirming work of a still-speaking God.

Our spaces are not necessarily ours to keep, and it isn’t just our personal joy we’re responsible for sparking. So as you hold each object in your hands, waiting for it to speak to you, listen not just for yourself, but for the generations yet to come.

Out of the Darkness

Over the last two weeks, our hearts have been wrenched dry by news of Syria, Parkland, and more. Yet our kids enter into church bright eyed and laughing, the joy of youth on their faces. Before long, their joy becomes mine, bringing me out of the darkness of the news cycle, the darkness of wondering why.

Not just why things happen, but why I can’t do more. Why I can’t make some calls, pull some strings, throw some Mama Magic in and make it all better. I have no doubt you feel the same. But we don’t have those kind of connections, and those who do won’t always use it.

How, you may be wondering, is this relevant to CE?*

It’s because while we may not have connections, or strings, or magic enough to spare, we have ourselves. Our families. Our kids. We have the ability to love those things nearest to us, and to spread that love as far as our circle of influence allows. The funny thing is, that circle seems to grow bigger with each use, until suddenly we realize we do have a connection that can make one small thing happen. Maybe a safer policy on how visitors to schools are screened. Or an email to someone in power that garners more than a boilerplate response.

When we love, things happen. And the thing about kids is, when we love them, they get better at spreading love themselves. This is one of the reasons I enjoy being with kids so much: how we love them is how they’ll love others, and that is no small thing. Maybe we can’t pick up a phone and solve a national crisis, but it’s enormously important that we have those bright eyes and smiling faces to nurture in the way we wish the whole world would.

Because while it may not, we can and we do and we will. And with God’s good grace, that will make a difference.

*This post originally appeared on my church’s Christian Education (CE) blog. You can find it here.

Cuddles’ So-called Life

I almost ignored it.

I was raking thatch out back, watching the kids pretend long, fallen branches left over from winter storms were light sabers, and our willow tree Darth Vader. Vader had won this battle and the kids were headed in, the youngest crying at his loss, when I saw something shimmery and black wiggle a little in the grass. I thought for a second it was a trick of the light, but then remembered the baby copperhead we found a couple of months ago and figured it was better to be safe than sorry.

Three steps later and I was staring at a mostly naked baby mouse, no mama mouse in sight.

I had no idea what to do. It was too young and cute for me to have the typical “mouse” reaction, and besides, it was barely breathing, let alone moving. What could it possibly do?

I dropped my rake and ran in, calling for the kids to come outside. Aaron resisted at first, still crying but now sitting at the kitchen island. “But Aaron,” I said. “It’s a baby mouse!”

If that mouse does nothing else in its entire life, it can always say it stopped a four-year-old’s tears.

The three of us went to look, the kids getting too close, while I went through the various scenarios in my head.

We couldn’t kill it. And we couldn’t keep it. And we couldn’t just dump it over the fence and make it someone else’s problem. Maybe drive it to a field and let it go? No. It was too little; it would die.

I decided to call Andy, who was still at work, but thankfully his office is in our basement so he didn’t have far to travel when I said, “Come to the backyard ASAP, please.”

He didn’t know what to do, either.

“If we leave it alone its mom might come back,” he said.

“No.” I’ve worked with neglected children long enough to see the signs, even in a 5-inch long rodent. “It’s been abandoned. It’s going to die.”

We took pictures. We hemmed and hawed. We told the kids not to get too close or to touch. We shushed all the pleadings to take on a new pet.

“I’m making an executive decision,” Andy said.

I immediately got nervous. I don’t do executive decision too well, unless I’m the executive.

“We’re leaving it alone to see if its mom comes back. I’ll check on it in a couple of hours.”

We agreed and went in the house, but went straight to the window overlooking the shiny, black, clearly dying lump of almost-hairlessness in our backyard.

I started dinner.

The kids and Andy played Uno.

The dog wanted out.

“Oh no. He might eat the mouse.”

“He wouldn’t eat a mouse.”

“He tried to eat the copperhead.”

“Yeah, but snakes are tasty.”

“Andy…”

“Well, Winston eating it might save the mouse from something worse.”

Rachel started screaming.

“I’m also worried about Winston bringing mouse-mouth into the house!”

“Oh, right.”

Rachel was still screaming.

“We aren’t going to let him eat the mouse, Rachel. Sit at the window to play cards. If Winston gets near the mouse tell me and I’ll get him.”

Winston didn’t eat the mouse. He didn’t even try to.

I kept cooking and they kept playing cards. Every 5 to 10 minutes, one of us would check on the mouse to see if it was still breathing. It always was.

As I cooked I thought, what are we doing? This is crazy. A month from now I’d try to kill that mouse if I saw it. We have mouse traps in our basement for crying out loud. And babies are always cute. Then they grow up and turn into adults and sometimes become completely unlikeable.

But still.

This was a baby. Its eyes were still closed. It wriggled and writhed in the grass, clearly rooting for its mama and her milk.

I called Petco.

“No, we don’t take wild animals. Sorry.”

I called our vet.

“No, we don’t take wild animals. Sorry.”

I started to say thank you and hang up.

“But let me give you a number,” I heard just in time. I wrote it down, but it was 4:55 on a Friday. What could be done?

I called the number anyway and got a woman’s voicemail telling me she was only accepting baby birds on a limited basis. She didn’t mention mice, I thought, so that must mean she’s taking them in droves. Score! I left a message.

We ate. We checked the mouse. We told the kids to eat. We checked the mouse. We finished dinner. We checked the mouse. We started to pick up. The phone rang.

It was the limited-number-of-birds lady.

“Sure. It won’t be the only mouse I’ve ever raised.”

She told me where to go – a town 30 minutes away. On a Friday. At rush hour. Right before the kids’ bedtime. And those kids also need baths.

But still.

She told me how to transport it safely. How to warm it if it were cold to the touch. How to cup it in my hands and rub life into it and give it sugar water in just the tiniest amounts because otherwise I could drown it.

I donned gloves. I filled a Tupperware with Kleenex. I grabbed a dipping bowl and medicine syringe and headed out back, the kids begging to do the work for me.

I noticed it had rained while we were eating. The mouse was now even slicker, shinier. Colder.

I scooped it into my hands.

“It’s a boy!” I said to the three people gaping at me through our open living room window.

I carried it inside. I laid it in its box. I let the kids touch it, ever so gently. I dribbled sugar water into its mouth.

“Was he cold when you touched it?” I asked the kids. They nodded.

Well crap.

I would now incubate a mouse.

And it worked. Slowly he started to wiggle more in my hands. His heartbeat became stronger. He twitched his little mouth and drank the sugar water. His ears – once flattened against his head – were somewhat softer. Perkier. After a few more minutes, he wriggled more. Became ever more alive. And I didn’t want to put him down. Feeling that life come into fuller being in the palm of my hand was … miraculous. Somewhat indescribable, although not entirely.

Eventually I put him in the Tupperware, leaving one corner open just like the limited-birds woman told me.

“Y’all better hurry. She said time was of the essence.”

But still I stood there, plastic box, tissue paper, and life grasped in my hand.

I told Rachel that she was the mouse keeper. She would have to be the one to keep him safe during the thirty-minute Hanauer Medi-Vac trip. Her smile was huge.

Aaron, however, sat at the table, sad.

“Should I take him?” Andy mouthed to me, gesturing slightly towards Aaron.

“Why not? It’s Friday. May as well.”

I said good-bye to Cuddles, placing him safely in the van, Rachel’s keen eye watching the whole time.

I turned to go in and saw a box against the garage. A delivery.

Well crap again. I knew already what was in it.

Inside, I grabbed the scissors, sliced open the box, and saw before me peppermint oil – mice don’t like it – and mouse traps. Ordered two days ago, BC: Before Cuddles. Before I became an incubator.

Earth Day is tomorrow. The next day is Sunday. I could hear the Sunday School lesson forming in my head as I stared at those traps, then realized I wasn’t teaching that week. What a shame. I’m sure there’s a lesson in this somewhere.

Just as I sat down to post this, the phone rang. I noticed the call was coming from the town 30 minutes away.

“Hello?”

“Do you have a cat?”

It’s the bird lady.

“No, just a dog.”

“Well, he’s a bunny.”

“My dog?”

“No, the mouse. He’s a bunny.”

Of course he is.

Liquid Paper and Solo Parenting: A PSA

I used to write about my kids and their fiascos all the time. There was the Habitot catastrophe, the Lutheran calamity, and the swim class crisis, to name just a few. But lately, there hasn’t been that much to write about. Well, there was the alter-altercation, in which the kids began slapping each other around in front of the whole congregation during the children’s sermon… That resulted in Andy walking to the front of the church, picking Rachel up (not that she was the most culpable, it was just who he chose) and moving her to the other side of the pastor and gaggle of well-behaved kids. She immediately stood up and moved right back to where she was before—sitting by and hitting Aaron—which all but about two people (guess who?) in the entire church found hilarious.Children's Sermon

Anyway, the fiascos are of a more ongoing type these days, and mainly consist of the kids hitting, pushing, and yelling at one another. And even that has almost stopped thanks to our new parenting method, which involves so much talking through things and compromising that I’m usually hoarse by 10am.

But today… today was a fiasco the likes of which I haven’t seen in I don’t know… two months, maybe?

I showered. That was my first mistake. We don’t have any real plans today, and I’m flying solo while Andy gets to do fun things like enjoy the all-you-can-eat dining hall at Wheaton. But Rachel was sewing and Aaron was watching Trotro and I promised myself I’d hurry. Giving in to my I-want-to-feel-human self, I took a shower.

About 1 minute before I would be all done and head downstairs to check on the kids, Rachel came running in.

“Mama! Mama! You know the stuff, the mistake stuff? Aaron has it! And he painted my hands with it and it’s everywhere!”

I, of course, had no idea what she was talking about and also couldn’t see her hands see because I wasn’t wearing my glasses.

“What are you talking about? Where is your sewing needle? Your scissors? We need to get downstairs immediately!”

She thrust her hands in front of my face.

“No! The white stuff you use if you make a mistake… the stuff we aren’t supposed to touch!”

I saw the white on her hands, now only an inch from my eyeballs. Crap. He had the Liquid Paper. “It’s everywhere,” she had said. My wool rugs, newish-couches, the dog’s fur… all sorts of visions went through my head.

So we ran. Ran pell-mell through the bedroom and hall, down the steps and into the kitchen, where I found an entire bottle of Liquid Paper dumped on the floor, and white kid-size-11 footprints trailing from the kitchen to the living room, while the culprit stood in the middle of the sticky, rapidly drying puddle, clearly happy with himself.

After wiping both kids’ feet, I assessed the damage and found, thankfully, that other than a few white streaks on the couch (it’s under warranty!), the bulk of damage was only on the wood floor. Bullet dodged, or so I thought.

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After about 30 minutes of scrubbing the worst spot.

People, Liquid Paper is some serious business. If I ever want to keep a secret from the NSA, I now know exactly how to do it. Almost NOTHING can get through well-placed white out. Trust me, I know.

I tried hot water, a plastic knife, my fingernails, 409, Goo Gone (I thought I had a winner there, but nope. It just made white swirls on the floor), hardwood cleaner, a mop, a rag, a bigger rag, and Rachel’s fingernails (hey, she offered!). All this gave me was a bunch of dirty laundry, a back- and elbow ache, broken nails, and a floor covered in swishy stuff. So I did what all good moms do when faced with a housekeeping stumper: I Googled it.

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She wanted to help!

It’s Google, so the answer came up within nanoseconds. I didn’t even click any of the links, but just read the little snippets to find my salvation: WD-40, baby. That’s the only thing that’ll cut right through the atrocity that is Liquid Paper.

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After 409, Goo Gone, fingernails, a mop, and one round of WD-40.

So, WD-40 it was. It stank, it still took an additional hour or more to clean (took about 2.5 hours total), and, as you may have guessed by now, it made my floors about as safe as speed walking in flip flops on straight up ice.

“Don’t walk on it, guys. It’s slick.”

Despite having used my serious voice, with three minutes they had both forgotten, and Rachel shot right across the worse patch to get a pony off the steps (of course). That resulted in a bruised tailbone and lots of tears, as well as a little brother who thought that he’d just witnessed the coolest thing ever. I could see him planning his Tom-Cruise-sock-slide even as Rachel howled in pain.

So I got super hot water from the on-demand tap and began to scrub.

It didn’t help.

At this point my house shoes may as well have been slathered in Crisco, so I took them off. This, of course, turned my “special” socks into a greasy mess, so I took them off, too. Prior to this my back had ached and elbows throbbed, while my hands cracked and nails split in two. Now I had the added benefit of aching feet and swollen legs. I was not a pretty sight, and if things didn’t change, I’d be cleaning the floor right through ‘til bedtime.

“Kids,” I said. “I have no other choice. I’ll have to tea-kettle it.”

Tea-kettling is a trick I use for things like Popsicle drips all over the deck, pee on the front steps, or cleaning off the remnants of dead birds that show up at the back door. Rather than drag out the hose, I boil a kettle full of water then dump it right on the offending substance. Boiling water is the only thing that will cut through ant-attracting sugar, take the wafting odor from stinky things, and undo the slick from a floor ravaged by kids and saved only through the use of harsh and oily chemicals.

“Stand back, kids. This is going to be hot.”

Aaron moves closer.

“Aaron, it’ll splash. Move back!”

He takes maybe half a step back and does his shivery little thing he does when he’s trying to pretend he’s nervous.

Kids safely enough away, I pour the steaming water on the slickest, still white-speckled spot. I stand on a towel and began to move my feet around to wipe the mess.

“Hot! Hot!” The boiling water, of course, seeps right through the towel and onto my now-bare feet. The kids are both worried and amused by this.

I shuffle down the hall, pouring boiling water onto the hardwood floor then sashaying over it with a towel, until I get all the way to the last little kid-sized-11 footprint. Pour, slide. Pour, slide. Then I do it all over again in the opposite direction. Pour, slide. Pour, slide. I do this again and again until finally the floor is only moderately dangerous. There’s only so much one person can do.

During all this, one child was asking for cheese toast, the other for chocolate milk. Somehow the dog’s food ended up in his water bowl, and cracker crumbs found their way into just-vacuumed couch cushions. Ponies were stolen, fought over and reclaimed, clothes that were once on a child’s body somehow didn’t remain that way.

When it was all said and done, I decided I would eat chocolate at some point today, despite having had a slice of chocolate mouse cheesecake with double whipped cream from The Cheesecake Factory yesterday. Maybe I’d even make some decaf and make the kids go somewhere—anywhere—else so I could write this and recuperate.

While I haven’t had my chocolate or coffee quite yet, this PSA has been written. The morals of this story are many: sometimes, on those days when you feel in your gut it probably isn’t a good idea, skip the shower. If you shower anyway, make it a 3-minute-or-less one. And when Liquid Paper gets on your porous hardwood floors, go straight for the WD-40 and Trader Joe’s dark chocolate peanut butter cups. You’re going to need them.

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Our New Life With Lupus

This is not a lupus* blog, and it will not become one. It is a blog, however, about my faith and my family (among other things). As such, it only makes sense that I might, on occasion, write about our new Life With Lupus (LWL).

I don’t know a lot yet about LWL. My dad had it, and passed away from it, so I guess I knew a little going into this. Don’t worry! I don’t imagine my fate will be the same, and I don’t want to pretend oh-so-dramatically that I think that. In the last ten years lupus treatment has grown by leaps and bounds, and 80-90% of those with lupus have a normal life expectancy.

Does that mean Lupus doesn’t suck? Um, no.

Because it does. It sucks a lot. Not every day, but many days. And even when it doesn’t suck, per se, it does impact each day in some way, whether big or small.

There are a lot of things that come along with a diagnosis (finally! A diagnosis!): relief, mourning, anger, denial, frustration, disbelief, etc. It’s really the seven stages of grief. I think I’m in the acceptance stage now because I’ve decided that I can be open about it, and even write about it here.

Honestly, there’s some very good stuff that comes from a diagnosis of a serious chronic illness. I signed up recently for a Lupus support website, and it asks all new members to answer questions for their profile. One question is, “Knowing what I know now, what I recommend to others is…”

My answer?

Love your kids, your partner, your parents, your friends. Love yourself. Love your neighbors, the homeless guy on the street, the business exec on the street, and everyone in between. Learn to say, “there’s no rush,” and truly mean it. Learn to say “no.” Learn to say “yes” when possible, but give the caveat that you might just have to flake. Flake if needed. REDUCE STRESS. Use your community; they truly want to help. Never take them for granted or misuse their help. Find a good rheumatologist, but always do your own research. You can diagnosis in 2 days of googling what might take even the best rheumy three months to diagnose. That said, beware of the internet and what you Google. Take pictures of rashes, swelling, hairballs, splinter hemorrhages and anything else you can. Because, of course, the day of your long-awaited appointment everything will clear up and you won’t be able to make your case. Download the “My Pain Diary” app, and use it not for pain, per se, but for all the other medical things you need to keep up with. Eat right, exercise, rest, and stay positive.

 Sure, there are things I could add (many things!), but these are the bones of it.

I’ve had a lot of loss in life, and so I always assume that I’m already living life pretty well aware of its importance and fleeting nature. I get on my little kids’ level and look them in the eye when they speak. I don’t giggle and brush away the silly things they take seriously; there are too few years they will be honest enough to say what they think, and perhaps even fewer years that they’ll care what I say in response. I try to ignore my cell phone and computer when they’re home (goodness, the two little ones are home a lot!), and I try to drop little tidbits from the past, my past, into the life of my oldest. Someday they will want to know it all; no use beating around too many bushes. I try to have dance parties, and not sweat the small stuff, and have lots of white space so “I don’t have time” are four words I seldom have to say. Do I always succeed? Of course not.

My point here is that I thought I already fully realized and appreciated the time I have here on Earth. But let me just say that there is nothing like hearing certain words from a doctor to make you really realize and appreciate the fleeting nature of things.

That sounds awfully serious given medical advances and that the numbers are significantly on my side. But that’s neither here nor there in the late night and early morning hours when one’s mind turns from all the rational things we focus on during the more civilized hours, to all the irrational things we pretend we’re too grounded to think about.

Because really, we aren’t that grounded. Or perhaps it’s just me.

Perspective shifts. Hermeneutics readjust. And yes, love and appreciation and faith grow.

Most mornings my little kids and I sing Rise and Shine together to get our days going. Often we follow it up by singing Psalm 118:24:

This is the day that the Lord has made,
Let us rejoice and be glad in it.

These are the words I will bind to their wrists and put upon their foreheads. These are the words I will live.


* SLE in my case (and my dad’s)

There are tons of resources online, but here are a few:

http://www.lupus.org

http://www.mollysfund.org

http://www.lupusny.org/about-lupus/lupus-links

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