Then Sings My Soul

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This is us – in France – because I’m determined to live “all-in” until God calls me home.

 

Five years ago today I found out I’m dying. People try to make me feel better by saying: “Aren’t we all?” But five years ago today, they told me I had a lung disease that would most likely take my life many years prematurely.

Since that dreadful pre-Thanksgiving day in 2013, I’ve learned a lot about LAM and so has the medical community at large. We’ve learned that early diagnosis improves prognosis and with increased awareness of this rare disease, we’re starting to diagnose sooner. Since being diagnosed, the FDA has approved a chemo-drug that slows down the progression of the disease. The drug sucks – I get all the side-affects – but I’m still thankful for it because it does seem to have slowed my case of this lung-sucking disease. Many women aren’t so fortunate – it seems younger women get a more progressive case of the disease and some have lost their lives only five years after diagnosis.

When I was first diagnosed, all the literature said 10 years was the average life expectancy with LAM. Now, with our new ass-kicking drug and earlier diagnosis, many are saying prognosis could be much longer – perhaps even 20 – 25 years! It all depends if you get the “fast track” or the “slow track”. I’ve never been very fast at anything, so I’m figuring my odds are good.

Plus, I feel great. I totally live my life with hardly any concessions. I’m more tired than I’d like to be, but that seems to be the pandemic American curse and so I’ll never know if that is LAM or life. I like naps, but who doesn’t? And my other middle-age friends (the honest ones, anyway), say they’ll steal a nap whenever they can, too! I cannot, however, climb too many stairs at a time and our four level home is soon to become an issue. I don’t know what the heck the deal is with stairs – I feel like I could climb a tree, but not stairs. It’s weird.

Five years ago I wrote about my initial reaction to getting LAM.  At the time, I thought I’d be fortunate if I were able to live 10 years. I am more optimistic today, but still look at every new year as a total gift – one God didn’t have to grant me.

Every day, every breath – a gift.

But I’m also reminded almost every day that I am not exactly healthy. The worst – the VERY worst thing about LAM thus far has been the slow revelation that I cannot sing like I used to. Last week in church the worship leader picked out the best, most awe-inspiring worship songs ever and as I tried to belt out the alto part, I lost my breath. A lot. I was gasping for air and had to stop singing. Then came a coughing fit. This now happens every week in church.

Those that know me best know how I adore music. It’s always playing in our home, my car, my head. When we built our dream home (that we later sold – to live more simply so others could simply live) I told my husband I wanted central stereo more than I wanted central plumbing! (He graciously granted me both.) I like ALL things musical – instrumental music, piano, orchestra, opera, concerts, musicals AND all genres of singers/bands. On one playlist I have Maroon 5, Queen, the Civil Wars, Lady Antebellum and Mercy Me – no joke. Our last two music concerts were Justin Timberlake and Ben Rector. If it has a musical note attached, I’ll listen. And, despite a ridiculous high probability I’ll get the words wrong, I’ll ALWAYS sing along!!!

The thing is, this past Sunday, when I lost my breath and couldn’t continue singing, we were smack-dab in the middle of Amazing Grace – the place in the song with that bone-tingling crescendo. You know it. No one can help but belt out this line: THEN SINGS MY SOUL, MY SAVIOR GOD TO THEE…

Did you hear that? How amazing is that??? My voice need not sing, because:

THEN SINGS MY SOUL!!!

Oh the joy I felt! My soul can sing! Forever and ever amen – NO DISEASE can ever stop my soul from singing!!

At that moment, I noticed that both my husband (to my left) and my daughter (to my right) were singing at the top of their lungs: THEN SINGS MY SOUL, MY SAVIOR GOD TO THEE…. A row behind us was a rich, full baritone voice harmonizing in the bass clef. Somewhere, very close by, because all I could do was listen at this point, I heard a powerful soprano singing at the top of her lungs. She gave me chills. And the “choir” surrounding me there in church seemed to be encircling me, saying, “No worries, Cindy, we got you covered.” They did not know it, but they were carrying me that day – they helped me feel and know the music and assured me that I always have been, and always will be able to say to my God: How Great Thou Art.

Even though, to us (our entire family), life feels like it may always be a series of loss upon loss upon loss from here on out, miraculously, there also seems to be an invisible net that keeps us from falling – splat – onto the cement bottom of life. With every loss, I truly anticipated the fall – hitting hard pavement – splayed out and bloody with zero chance of recovery.

But it never happened.

Somehow, some supernatural hand grabbed me from my belt loops and snatched me up and carried me back to the functioning world.

Many times I didn’t want to keep functioning. Sometimes I felt the darkness of depression sneaking in and it made me want to scream at people or at the very least, ignore them. Sometimes I wanted to stay in bed all day and pretend Heidi is still alive. Sometimes, still, I want to run and run and run and see if my lungs will explode. Sometimes I want to run far away and move to Aix-en-Provence, France and just pretend the problems of this world aren’t real. But that same supernatural hand that reached down and pulled me from certain pavement splattering, draws me back with supernatural power to life.

He tells me it will all be worth it in the end – that all this pain and suffering is not wasted if I choose to grow from it. He lovingly shows me all the things that make life worth living for – even if I can’t sing anymore. He sweetly reminds me that if I’m still living, then I’m supposed to be here.

Five years later. Another pre-Thanksgiving day – another reminder that my lungs are giving out on me. But it also reminds me that my soul shall never cease the singing of His praises. No one can ever snatch that away from me.

And for that, I can truly be thankful.

THEN SINGS MY SOUL,

MY SAVIOR GOD TO THEE,

HOW GREAT THOU ART,

HOW GREAT THOU ART

 

13 Reasons Why I’m posting dog poop and not prom pics

Watching ’13 Reasons Why’ has led me to sharing how my dog is always crapping on our rug.

grace pics 095The Netflix hit series, 13 Reasons Why, has created a maelstrom within the media, parental circles, and my mind. The show is essentially about teenage suicide but largely focuses on bullying and teenage angst. Because of my profession as a psychiatric nurse, I wrestle with these things often. Out of curiosity, I watched the show and lost a lot of sleep mulling it over. The best review I’ve read and the one I most resonate with is from Jamie Tworkowski from “To Write Love on Her Arms”. You can read his summary here.

To help sort things out, I consulted my 16 year old and asked her, “What makes kids bully others?”

She said, “They think they’re ‘all that’ – they’re usually the popular kids.”

So I asked her, “What makes kids popular?”

She said, “Bullying others.” (She’s one part smart and two parts cocky.)

“But why?” I asked, “Why do they think they need to do that?”

She said, “It’s classic psychology, mom. Weak people feel they need to put others down in order to elevate themselves. Strong people are secure in who they are and don’t have any need to adjust other people’s perceptions.”

Ahhh – so once in a while she DOES listen to what we’re telling her…

But her choice of words continued to haunt me: “Strong people are secure in who they are and don’t have any need to adjust other people’s perceptions…..”

And I’ve been vexed ever since about what to do with my own social media – the KING of all perception adjustment. I long to be strong and secure, but, at the same time, I had been accumulating all kinds of clever and envy-worthy pics and posts this spring – just waiting for the exact right time to unload them on all my “friends” and “followers.”

I started to wonder if my “friends” and “followers” were more my “victims.” I started asking: How might my social media posts potentially cause harm to others? And when I answered myself honestly (I’m really good at lying when it comes to myself), I realized many of my posts could be considered bullying – making others feel bad about themselves or their situation. It depends who’s looking at it and from what perspective. But still.  I decided to desist from social media for a while.

That is, until my dog pooped on our rug.

Here are the 13 reasons why (in David Letterman fashion) I felt POOP was worthy of my social media feed:

  1. My friend’s daughter, a senior, did not go to her Junior/Senior prom. Not only did she not have a date, she didn’t even feel she had any girlfriends with whom she could attend. She told her mom that prom night was one of the saddest nights of her life. Hearing this, I knew I could no longer post my daughter’s prom pictures. I know we all want to believe that our “friends” and “followers” want to share in the joy of ALL our good news. Yet, studies consistently find that, for most people, a steady diet of viewing all the things other people are doing will actually INDUCE isolation – the exact OPPOSITE of a “social” media. Sometimes, when we think we’re sharing happy news, it’s really throwing daggers.
  1. One of our kids had their heart shattered this past year – a wound so deep, that many months have passed with very little healing. And when the heartbreaker posts pics and captions revealing a life of joy and new love, my child’s wounds reopen. We simply were NOT meant to see and know everything – and all this access to information that we’d be better off without is making us miserable. I don’t have the answer. Parents, should we cut our kids off from social media? Do we throw their phones away? How do we give them nerves of steel to deal with the barrage of images that are undoubtedly way more information than the human psyche can handle? How do I get those nerves of steel? I don’t know – but this cruel media world is why shows like 13 Reasons Why exist. I wish I had a better answer – but I just think sharing a lot more pictures of doggie defecation wouldn’t hurt.  Life is poopy sometimes.
  1. I have never once posted a photo of a family vacation or shared some terrific news and received the response of “Ah! So glad you shared this! Now I know I’m not alone with my incredible life! I feel so much better knowing your life is as perfect as mine!”  When life is going swimmingly, people aren’t generally lonely.
  1. Vulnerability precedes intimacy. We cannot REALLY get to know and understand one another until we know each other’s pain. I realize social media is not the venue to find REAL friends, but, when we share glimpses of reality, photos of hard times, and stories of suffering, our “friends” will see we are REAL and maybe, just maybe, we’d start feeling less alone. Maybe that would put the SOCIAL back in the media…
  1. I cannot take a decent photo to save my life. Social media makes those of us who stink at photography appear headless, washed-out, wrinkly, or red-devil-eyed.   Dang – I hope I’m not all those things…. but it feels like just because we sucky photographers don’t have a $1000 camera and a creative eye, we appear “less than.” I say we need SOCIAL MEDIA REFORM – where sucky photographers get Disney passes or something.
  1. Commonly heard among the young today, “Need a pic or it didn’t happen!” This is our culture – everything must be recorded and shared for verification. So, logic says, most people never have anything bad happen to them. No pics of hardship must mean no hardships have happened. But we all know better. So what will it take to get real with one another? Is it possible to put HONESTY into social media???
  1. I sat by a mom I had never met before at my daughter’s recent graduation ceremony. With tears in her eyes, she shared how she never imagined her son would make it to graduation. He has both a learning disability and social cue deficits – but no one would know this by looking at him. When her son walked across the stage, I cried. When my own daughter walked across the stage, I just smiled – because she was always expected to graduate and to do well. Why do we insist on sharing photos and stories of life-things that are totally EXPECTED?

When we learn of one another’s burdens and hardships, we get to experience in the joy of being overcomers – one of the greatest gifts Christ’s death on the cross affords us.

  1. When I wrote about our piece-of-crap house and the trials of fixing-up a fixer-upper (here), I received responses from thousands of people all over the world. They were all experiencing the same thing – DISILLUSIONMENT from HGTV, home magazines, Pinterest, AND social media pics of everyone’s beautiful homes. This has become a huge area where we are (often unknowingly) inflicting inferiority on one another. By constantly posting our beautiful, clean, and perpetually updated homes, we seem to be conveying the message, “I have it all together – and you, OH LOWLY YOU, with an unfinished basement, with weeds in your landscaping, with mounds of laundry in your hallway, with cobwebs in your corners, and with the PVC piping still spanning your sunroom ceiling which the previous tenants had used for stringing cannabis (or wait – that one MAY be just me….), you are such a mess, YOU LOWLY YOU.”

I actually want to see your laundry room on laundry day. I want to see your daughter’s room after six weeks of simultaneous soccer and musical practice. I want to see your kitchen after making a mother’s day meal. I want to see your bathroom after a full week at work. I want to see your garage the day after a garage sale. I want to see your basement storage rooms.

Because I desperately want to feel less lonely.

  1. At work at the psych hospital, I often ask my patients “What are you finding to be the most helpful part of your therapy here?” Hands down, the most common reply is this: “Listening to, and sharing with the other patients. They get me in a way that none of you (staff) can.”   Ah-ha!
  1. Every dog poops. Every dog owner, every day, picks up dog poop. It’s disgusting. But for me, taking a plastic Meijer bag (which, in and of itself, is abhorrent because you have to deal with all those angry stares from the granola moms at the Meijer check-out when you actually request plastic bags….) then turning it inside out to make a glove for myself, reaching down and grabbing my dog’s fresh, warm poop has to be one of the lowest points of my day. BUT, my days have descended to an abysmal low when said dog poops INSIDE our home – which, as she ages, is happening much too frequently.

Dog poop on our rug is one of the milder stories I could share from our lives right now – things have been pretty bad around here lately – but this is where I thought I’d start.  I almost kicked my dog today.  Almost.  I DIDN’T DO IT, OKAY?!?!  I’m just so sick of crap on our rug!!!  My life is light years away from glamorous, and right on the very edge of repugnant.  Is it just me? I’d be lying if my newsfeed reflected something different.

  1. Vulnerability precedes intimacy. I know I already used this one for #10. I’m just checking to see if you’re still reading (REAL bloggers say you should never write more than 1500 words. I’m already at 1600… but hang with me – the last 2 reasons are the best.)
  1. Some of my lowest, most lonely moments in life came right after getting my diagnosis of Lymphanegieoleomyomatosis (LAM). It’s so rare – only a small handful of us women in Michigan have it, and a not much bigger handful in the whole USA. There was no one living near me that I could talk to. And then…. then, I met my Facebook LAM family! Over 2000 women from all over the world connect via this forum. And I suddenly knew that I could deal with this sucky, lung-sucking, sucker of an illness – because ALL of them were dealing with it, too. Those women from all over the world have given me strength.

It sucks to have to talk about your illness on social media. But now even my sister’s family is deriving comfort, prayers and community by sharing her journey of brain cancer on social media. Posting about your “crap” really does help – in some cathartic, Jesus-y, miraculous way.

  1. The old proverb, “Misery loves company,” is incorrect. It should be, “Misery NEEDS company.” We were not made to do this life alone. It’s often the isolation and accompanying sadness that brings some people to take their lives. We NEED to help each other feel less alone. We NEED to share our sufferings. We NEED to become vulnerable with one another. And then maybe, just maybe, people will see they are not as alone as they thought. And maybe, just maybe, we will put the “social” back into our media. And maybe, just maybe, someone will decide to keep pressing on in life instead of the alternative.

Sometimes I wish all my hair would fall out… Discovering the redemptive work of suffering

My husband recently shared some sad news with me – a 65 yr. old friend of ours has been diagnosed with lung cancer. It was evident my husband was upset by this news, and he started saying something philosophical about the uncertainty of life and the certainty of death…. Blah, blah, blah….

I’m ashamed of this, but I stopped listening to him because I was jealous.

I was jealous of my husband’s reaction, and jealous that this man is 65 (I can only hope and pray that I will live to see my 65th birthday) and yet, because he has cancer, he will derive more attention and sympathy than all the women combined who lost their lives this past year to LAM yet were only in their 30’s and 40’s. I was jealous of the reality that when people hear the word “cancer” they immediately get all melancholy and philosophical because they pretty much know what the future looks like for the sufferer: chemo, radiation, hollowed eyes, emaciation, fatigue, hair-loss, and potentially, life-loss. It’s certifiable bad news – and I don’t wish to have cancer – heck no. And I certainly don’t mean to minimize its devastation. I’m just being honest with my struggles. I struggle with the fact that because of its prevalence, cancer is known and understood and therefore its sufferers are readily acknowledged, offered compassion, extended empathy and sympathy, and given permission to grieve.

I think this is true for most people suffering from a rare disease: we long to be understood, too.

I’m grieving, too. And it sucks.

The last six months have been miserable for me. But misery is relative and I personally know of many others who have it worse so I refuse to complain and I refuse to share with most people just what’s happening. More than the fear of dying is the fear people will remember me as a whiner. Oh God, no! It’s just that for these last several months it totally sucked to have this LAM-thing going on – physically and emotionally. But because all the things happening to me happened on the insides, no one had to know about it unless I told them.

So like every good Christian feeling compelled to infuse hope to all mankind even while feeling hopeless themselves, I persistently lied and told everyone who asked, “I feel fine.”

So, in the midst of my worst suffering (so far), what I heard most often was this: “Well, you sure look great! You sure don’t look sick!”

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One day, in the midst of a childish rant, I told my husband I wished all my hair would fall out. I told him I couldn’t find a way to explain what was happening to me in one short minute and that is about all the time most people will give you. They ask you how you’re doing – but they really don’t want to hear the long truth. I said if my hair all fell out, then they’d “get it” and they’d get all melancholy and philosophical for me, too.

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The shocked/hurt look on my husband’s face told me I’d gone too far. We both know many people who have lost their lives to cancer or are currently battling it – my comments were pure disrespect. He said “Sounds like you’re just looking for sympathy.”

I said, “Maybe. Or maybe I just want to be understood.” Since my diagnosis, I had repeatedly told him that the primary emotion I experienced was loneliness. Because LAM is so rare, because to understand the disease I’ve had to spend countless hours in research, because my husband and children and family and friends can’t possibly “get it”, because I have, to date, personally met only one other woman with the disease, and because everyone’s disease progression is so unique, I feel very much alone. 

He thought long and hard, then said, “You know, everybody is dealing with something – and most of those things we cannot see. I think most people feel alone in their suffering. Maybe we all just need to treat EVERYONE with more sympathy and understanding.”

My husband is wicked smart.

Maybe you are dealing with fibromyalgia. Maybe it is COPD. Or Lupus. Maybe it is a son/daughter who won’t speak to you anymore. Maybe you don’t know how you’re going to pay next month’s bills. Maybe your husband doesn’t love you anymore. Maybe your child has leukemia. Maybe your mother has Alzheimers. Maybe you’ve been diagnosed with a mental illness. Maybe you just lost your job. Maybe you’re not sure you can keep going anymore.

All these things – and many, many more – are things unable to be seen on the outside. And as you walk around your neighborhood, or go to the mall, the grocery store, the dentist, the Little League game – wherever – no one knows of your suffering.

Maybe you, too, wish your hair would just fall out so people would be able to see that you’re suffering. Maybe you are feeling desperate to be known in the deepest, truest sense and to be profoundly understood. And perhaps, that is simply our depraved human condition – a whole-hearted, visceral longing to be intimately known and understood… 

Perhaps that is by design, so we fall desperate at the feet of Jesus… 

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What I am SLOWLY learning in this arduous process of grief and acceptance toward my illness is that I am most definitely NOT alone. First of all, I am not alone because of the truth we are all dealing with something. No one is immune from the pain of this world. At one of my lowest points, I stumbled upon this video called, “It Ain’t Over” by Ed Dobson, a well-known Grand Rapids pastor battling ALS. Although our stories are very different, I immediately felt I had a friend in Ed, because he gets suffering. I instantly felt less lonely.

But even better than finding fellow pilgrims on similar journeys, I am not alone because I have a Savior, who by very definition of that title has come to RESCUE us! He who suffered greater than anyone ever has or ever will – He alone understands me and my suffering perfectly. I do not need a bald head to be understood.

We are not alone, my friends. And never will be.

And so I decided that the point of this suffering must NOT be for me to extract sympathy from others – it was never about me anyway. I decided the point of suffering must be to show the world that even IN our suffering we will glorify the ONE who suffered more than any other, who gave HIS life SO THAT we might have eternal hope and eternal life; and then, we must point others toward HIM.

That, I believe, is the redemptive work of suffering.

10 Simple Steps to Freedom from Spring Cleaning. Finally.

SAMSUNG CAMERA PICTURESWhen I found out I had a disease that would likely reduce my years on this planet significantly, I wasted no time and jumped into conservation mode by eliminating things from my life that are not important, not necessary, or just no fun. I’m trying to focus my time and energy on things that really matter.

So, with the words of our bronchitis-encumbered friend, I’ve kicked spring-cleaning to the curb, because “Ain’t nobody got time for that!”

I have never understood why spring-cleaning is a thing anyway. What kind of fun-Nazi came up with this concept? Just when the temperature and the birds and little kids are all beckoning us out doors, we are guilted into cleaning our homes from top to bottom like some freakin’ locked-up Cinderella.

Not this Cinderella. No more.

So if you want to put an end to the guilt-trip called “Spring-Cleaning” – you can use my secret non-cleaning methods, which will certainly NOT earn you a headlining piece in Better Homes and Gardens, but WILL most definitely help you reclaim one of life’s most precious commodities: time.

The key to freedom from Spring-Cleaning is prioritization and simply determining how often certain chores are TRULY necessary. Here is my list of spring cleaning chores and the frequency I give them:

  1. Dust baseboards: Never. Why bother with this total time-sucker? Who cares about dust ALL THE WAY down there by your already stinky and dusty FEET????
  1. Washing windows: Every other year. Maybe. However, if the Sparty’s are doing well in March Madness AND your daughter plays spring soccer AND you’re planning a spring missions trip to Guatemala, you can stretch this out to three. Maybe four.
  1. Wash sheets: Whenever you darn well feel like it, and never a day sooner. Who are these people that wash their sheets weekly? These people who make us feel less than just because we’d rather have a root canal than wash bed sheets? Who are these masochistic individuals who are willing to endure the stubbed toes, the broken fingernails, the SWEAT that breaks out when replacing the previously ill-fitted and now significantly shrunken fitted sheet??? They are not my friends, I’ll tell you that much.
  1. Wipe down interior of cupboards and clean food and crumbs out of silverware drawer: Whenever the dishes and silverware coming OUT of the cupboards are as sticky as those going IN to the dishwasher.
  1. Clean out the refrigerator: When something spills and makes a sticky mess. (I was just a young bride when I noticed on my mother-in-law’s calendar the little word “refrigerator” inked in the last Wednesday of every month. I asked her what that meant and she said, “That’s refrigerator cleaning day. I take everything out and clean the inside thoroughly, and then pull it out from the wall and clean behind it, too.” I choked. She had been thinking so highly of me up until this point. I could sense her disappointment. We had been married at least TWO years by that time, and I had never once had a “refrigerator day.” Could this be a thing? Cleaning behind your refrigerator??? Why has nobody shared this information with me before? In a rare, raw act of defiance, I decided then and there that on this one issue I would seriously disappoint my sweet mother-in-law and choose “NO!” I will NOT have a monthly “refrigerator day!”)

So, just to be clear, when I say “clean out the refrigerator”, I’m simply referring to dumping moldy-oldies and just scanning the interior to make sure no living creature will crawl out at you when you reach inside. I am NOT talking about cleaning under or behind the beast. For me, that is done approximately: NEVER. So far, 29 years of being an independent refrigerator owner and NOT ONCE have I cleaned behind one!

  1. Organize closets: When you can’t shut them.
  1. Wash walls: Do you eat off your walls? Do you lick your walls? Do you prepare your meals on your walls? Do you unthaw your frozen meat on your walls? Do you fold your clean laundry on your walls? Do you change your baby’s diaper on the wall? I rest my case. There is absolutely no reason whatsoever to wash walls. Every 10 – 15 years you will repaint them anyway. Good enough.
  1. Vacuum under the bed: Unless you have a dog who sometimes eats food she shouldn’t which makes her a little psychotic to the point of thinking that the under-bed space is actually a doggy doo-doo zone and leaves you a mess that ferments for several days before you discover it, there really is no reason to vacuum under the beds. I claim “outta sight, outta mind” for this one.
  1. Professionally clean carpets: Do NOT waste your time OR your money on this scam! (I’m pretty sure the government owns both the carpet cleaning industry and the dry cleaning industry. They are both fake covers to extract more money from the unsuspecting American public by pretending to do something that is purely bogus! Surely by now, in our advanced human evolution, we ALL realize that dry cleaners simply step out back, shake out the garments, and then throw them in a funky-smelling plastic bag proclaiming, “Voila! Clean!” Likewise, I guarantee you that one hot minute after the carpet cleaner’s truck pulls out of your driveway, the Kirby vacuum cleaner saleswoman could bust into your house and suck up mounds and mounds of disgusting dirt, lint, and dog hair from your “clean” carpets and furniture making you feel that somehow you don’t love your family well for being so dirty and that what you really want to do is spend ten times too much on a vacuum cleaner. Let me save you the HEADACHE: do NOT bother with EITHER ploy to get you to pay for something unnecessary! I promise you, that little Eureka Wind-Tunnel that your grandma bought you for $59 at Walgreens and proudly gifted to you at your bridal shower a mere 28 years ago… she still works juuuuuuuust fine! Fine, I’m sure of it! Have faith!)

Carpet cleanliness in America is so overrated. Go ride your bike with your kid in this glorious spring weather – something terribly underrated.

  1. And last but not least: Dog Care. I just read an article on spring-cleaning for your pets – a serious exposition on why my dog Buddy needs extra special attention at this time of year, too. Well, let me save you those wasted hours as well, my friends. My special secret that only takes a few seconds and keeps Buddy smelling April-fresh year-round: spray her frequently with spring-scented Febreeze! While the manufacturer and PETA probably do not endorse this practice, it could very well be the best spring-cleaning tip I can give you!

(I initially learned of the spring-cleaning concept from the Dutch Master herself, my Grandma Visser, who single-handedly raised the bar on the phrase “Dutch clean.” I’m noticing a bit of a cold sweat here as I contemplate posting this possibly too-honest list…. She was also a very large, very candid woman who made me cry on more than one occasion simply by speaking her mind. I believe I’m hearing her voice posthumously in my head right now – “Girl! Have you no shame???” Well, probably not, Grandma. Probably not.)

If I Had Only Nine More Years Left to Live

UnknownIt has been a year since I was diagnosed with Lymphangioleiomyomatosis (LAM) a helluva stupid lung disease that is slowly consuming my lung tissue and sucking the life from me. There is no cure. It has been a hard year – and my disease has progressed even though I specifically, repeatedly, desperately asked God to not let that happen – and I feel constantly compelled to reexamine my life and it’s meaning. Last year, on Christmas Eve, I wrote a blog entitled “If I Only had 10 More Years to Live” – and how having a potentially terminal illness changed my life’s goals almost immediately. Living with this diagnosis for a year and letting that reality sink in has taught me even more – and I felt compelled to update that “bucket list”.

It’s like my own constitutional amendments…
1)  Contrary to what I wrote a year ago, I will NOT be keeping Snickers in my car 100% of the time to have on hand for panhandlers.

I piloted this program for several months and after single-handedly eating SIX bags of snack-size Snickers, gaining FOUR pounds, and only passing out ONE candy bar – I’ve decided I MUST come up with another plan or I won’t die of LAM, but Snickers toxicity! Because poverty and homelessness literally keep me awake at night, I’ve got to DO something. Ignoring the issue is not an option for me. I’ve decided I’m going to have Degage vouchers with me at all times to give out to panhandlers. They are coupons from our local inner-city mission that can be redeemed for a meal, bus fare, haircut, or hats and gloves. Even BETTER than a Snickers. Check out your own city mission and see what they offer – because every city has some (that is, homeless people AND helpful solutions).

2)  I will watch less volleyball.

I adore my daughter and want to fully support every endeavor that is important to her (and all five of my kids). However, the amount of time that sports are sucking from the life of our generation is sickening and I don’t want to be a part of that madness anymore.
Our culture has dictated societal “norms” for sports involvement that simply require more from our family that we’re willing to give. There is a great quote by Krishnamurti that made me realize I was succumbing to a dangerous trend: “It is no measure of health to be well-adjusted in a profoundly sick society.”

This lifestyle of dinner-in-the-car, homework-on-the-sidelines, texting-conversations, weekends-at-the-tournament, no-time-for-church, and washing-the-uniform-at-midnight, CANNOT be the best distribution of time that God had in mind when He planned for Christians to be His hands and feet! When we attend every stinkin’ thing our children participate in – in this world that has run amok with children’s athletics and child-focused activities – we are actually giving our children TOO much attention and thus making them our false god. Our children need our love and support, not our worship. Maybe if we took our children off the throne, we’d have more time for all the things Jesus told us to be about: the poor, the oppressed, the hungry, the hurting, the marginalized, each other.

If I really do only have 9 years left to live, I want to have time for friends with cancer, widowed neighbors, young moms with screaming toddlers, teens from the inner-city, the stranger in the backed-up check-out line who looks like he’s ready to cry, AND my kids! I love my kids profoundly – and by saying I want to give them a little less side-line attention does not mean I love them any less. I just want to try to make the remaining distribution of my limited time a reflection of a heart that breaks for the things that breaks God’s heart. My WHOLE world is not my children.

3)  Maybe if I watch less volleyball, I’ll have more time for the things that I didn’t get around to (but really MEANT to!) from last year’s bucket list: ICE CREAM dinners at the trailer park and time with nursing home residents who don’t get any visitors. Or maybe I’ll combine the two and load up my car with kids from the trailer park and together bring 20 gallons of ice cream to the nursing home! To me, that sounds like a taste of heaven.

4)  And this whole Ferguson mess taught me something: I need to make some black friends.

One of the richest experiences of our lives has been living in Morocco and making true, deep, lasting friendships with Muslims. When Islam has a name, a face, an address, a friendship, it changes your perspective on all things “Islamic”. I love these people in Morocco. And they love me. And so I’m extremely cautious before deriving any kind of conclusion about what is really happening is the Muslim world.

During the Ferguson debacle, I realized I don’t understand racism in America hardly at all. While in America, I have largely lived in an all-white, middle-class, Christian bubble. I didn’t mean to do that – it just kind of happened. I certainly don’t know enough black people deeply enough to say I can understand their life or our differences. That fact made me so sad. I tried to keep my mouth shut through all of the debates going on over that mess in Ferguson. Maybe I’ll weigh in when I have a bunch of black friends and feel I understand their hearts better. I’m not talking about exploiting some fake friendships. I really do want some black friends – and I just want to acknowledge that right now I’m ignorant. And ignorant people should keep quiet

5)  This past year has taught me I need to spend LESS time with my mother-in-law…

This is one of the hardest for me because I was wrongly believing that I was the only one who could help her and meet her needs. But what I’ve been failing to do was accept dementia. Dark. Unfair. Cruel. Relentless. And I can’t fix it or make it go away and going to visit her every day was only leaving both of us exhausted. I have to let it go and accept that we are losing her slowly to this ugly disease. I can give her only what I can give her – no more, but never any less either. This has helped me in other areas of my life, too. I’ve learned I’m a fixer and I hate it when I can’t solve problems or make them go away. But accepting that OUR SAVIOR came, specifically, to carry all our burdens, means that all we have to do is show up. We don’t have to fix them or carry them or worry about them, we just need to be fully present in the midst of them. He really DID come to set us FREE!

6)  A year later, and I’m STILL not gonna watch any Reality TV (Sorry all you DWTS fans – but I just don’t get it) Apparently, however, we as a family are going to occasionally curl up in blankets and absorb five seasons of Parenthood and try to solve issues like autism, teen sex, affairs and cancer with the family Braverman.

7)  And on the no dusting and vacuuming vow I made last year… WELLLLLLLL, the truth is really two-fold. One, I’ve learned that a house full of dust and pollen and dog hair is REALLY bad for my failing lungs and I really do want to make those two suckers last as long as possible. And two, when I can write words in the dust on my coffee table, it distracts me so much I can’t even think. So, truth be known, I’ve started dusting again. But not washing windows. And don’t even ASK me what my closets and drawers and laundry room look like. Housework? Paring it down to the necessities – and it feels so right.

In fact, THAT’S IT! – That’s what you do when you feel you’ve been given your expiration date…. You pare it all down to the necessities – discovering what it is that you truly need and what truly makes you feel most alive!!! Thank-you, Jesus, for coming to earth a baby, living to know all pain and suffering, dying to conquer death, and being ALL that I would truly ever need.
“For lo, I bring you good news of great joy that shall be for all people. For unto you is born this day, in the city of David, a Savior, who is Christ the Lord.” Luke 2: 10, 11