Cindy DeBoer

TERMINAL ILLNESS

Reboot: The Beauty of not being good enough – (Getting "Cut" from the team)

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My daughter got cut from the varsity volleyball team this fall. Having poured herself into that sport for the last four years and with dreams to even play in college, it was a blow of colossal proportions. Yet a virtual stranger who probably doesn’t recognize the power she wields decided, “Nope. You’re not good enough for me.”

“Cuts” are so aptly named, aren’t they? It actually feels like a physical cut: leaving one wounded, bleeding…. in pain. And the injury didn’t just end with Grace – her “cut” deeply wounded me and Paul as well. Maybe even worse. Nothing hurts us more than our children hurting… Grace came home after cuts and while wrapped up in each other’s arms we bled all over the couch together for a while. Eventually she smiled, got up, and said “I have no more tears. I’m tired” and she went to bed.

No matter how hard we parents try to create a justification for this indignation (blaming, shaming, name-calling, conspiracy-theory, etc.) the cold-hard reality of the situation, which we eventually have to come to terms with, is that our child was just told: “You are not worthy. You are not good enough. I did NOT choose you.” That’s the bald truth and it stings.

By morning the sting had dissipated some and I was thankful I hadn’t acted in haste and posted something nasty on Facebook or Twitter.

But on the second day a miracle happened. It was a Saturday, which is a day traditionally OWNED by volleyball. But now, having a totally free Saturday, Grace, Yulisa and I chose to participate in a peaceful protest in Grand Rapids. Afterwards, we went out to a swanky coffee shop for tea and scones. We sat outside in the sunshine and faced the street and pretended we were Europeans. We talked about civil rights, civil duties, religious freedoms, and standing up for what you believe in. We talked about Thoreau, Rosa Parks, and MLK. We talked about making your life count.

Between sips of chai, she gifted me with this: “Mom, I wouldn’t trade this moment, this conversation, this day spent with you guys for anything. Not even volleyball.”

I wanted to say this: “You have no idea what this means to me, baby. No idea. Having a terminal illness, I want to be so selfish with your time. Truthfully, I want it ALL. This sacred time with you girls beats cheering you from the side-lines, which is really no interaction at all, a million to one. Every time.”

Instead, I pondered those thoughts quietly and we three just held hands and wept a little.
And then we came up with an idea. We decided to begin a list of all the things she now COULD do because of the time reclaimed sans volleyball. Every one of us has been given only 24 hours in a day – and no one can say “yes” to everything. And while most people try to deny this, the truth is that whenever we say “yes” to something, it represents something else we are saying “no” to. Grace wanted to call out, and clearly identify what all those “something else’s” were in her life.

On school nights and Saturdays when she would have normally been playing volleyball, she was now able to participate in a variety of incredible things – things not limited to, but including the following:

  • Breakfast with her youth group leader
  • Sprawled out on her bed with Yulisa – sharing earbuds– giggling and listening to hours of music together
  • Dinner with long-time family friends discussing things like Middle-eastern and South-African politics, saving dating until college, and the role of the church with immigration – which required us to stay out way past midnight on a Friday night but not caring because we were going to SLEEP IN on a Saturday for once!
  • A day of boating/tubing with her friends (friends that SHE chose, not whom volleyball chose FOR her)
  • Visiting her grandma at the nursing home
  • A family birthday celebration at a snazzy restaurant where no one was rushed and we gorged ourselves on bottomless sweet potato fries and drank root beer floats till we were dizzy.
  • Took a road trip with her siblings to see Ben Rector in concert in Detroit.
  • Cheered on her HS soccer team, tennis team and swim team – realizing if EVERYONE is a participant, then NO ONE is a spectator. And everyone enjoys playing more with spectators present.
  • Playing her guitar and singing with the praise team for her youth group.
  • Went “thrifting” with a dear friend and she found a $75 sweater for $5.

And this is only a partial list from the first couple of weeks….
Upon reviewing that list, we came to a profound conclusion: It’s as if God had an actual plan for her life all along, so perfectly tailored for Grace and her giftedness, that at this juncture, there simply wasn’t time for volleyball anymore. It’s as if, in God’s brilliantly upside-down kingdom, He was saying, “Grace, you didn’t get cut, you were chosen!”
It’s not that volleyball is bad, it’s just not the team Grace was chosen FOR.

  • What if Grace’s youth group leader composed a team? She’d say, “Grace! I choose you!”
  • What if Grandma made a team? She’d day, “Grace! I want you! You’re chosen!”
  • What if her friends made up a team? They’d say, “Grace! We choose you!”
  • What it the community put together a team? A team of young go-getters who epitomize service to others? They’d surely say, “Grace, we want you!”
  • What if our family was a team? (and I do believe we are) – We’d raise our collective voices and say, “Grace! Welcome back to our team!”

Yep – Grace got cut from volleyball. But look at all the teams that DID choose her!
So if you, or anyone you love, has ever been “cut” from a team – or the musical, or the band, or from a university, or the [insert thing that you wanted so badly but didn’t get] – maybe we just need to ask a different question.

Maybe the question isn’t, “Why did I get cut?”
But instead, “For what have I been chosen?”
 
 

Six Critical Life Lessons Learned from a Hacker

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I was furiously typing away – hoping to complete another chapter of my book in the two hours I’d managed to wrangle free. Suddenly, a warning popped up on my screen, “CAUTION! You have a virus attacking your computer! Stop immediately and call Apple: 555-5555” (the title of this blog should let you know why I’m not sharing the actual number…)

I’ve heard of these scams. I wasn’t born yesterday or over fifty years ago (okay – a tiny white lie with that one…). But I did know enough to be skeptical. I tried to exit out of the pop-up. No luck – it wouldn’t close. I tried to close all my windows and the Apple wheel of death appeared refusing to budge. So I decided to just shut my computer down (my go-to solution for techy issues). But the computer had totally froze and when I hit the off key it started screaming at me – an unearthly, loud and high-pitched alarm. I frantically tried to stop it by pushing every key on the keypad. Nothing. Totally frozen keyboard and a shrieking computer that hurt my ears.

It felt like satan himself was communicating to me from my computer. (Hmmm…. Now there’s a thought!)

I asked my daughter to quickly access her own device and ask Google if this was a legitimate warning and if I should call the “Rescue” number flashing across my screen. Google isn’t so smart after all: the first thing to appear in her search was an affirmative – Yes, indeed, sometimes Apple will alert you to viruses that are attacking in real time.
So I hurriedly called the number and talked to Rashid. (I know, I know. I know what you’re thinking… the fact that Rashid could barely speak English should have, possibly, been my first clue….) But at first, Rashid was super sweet and helpful. He calmly walked me through the steps necessary to stop the screaming alarm. Then he explained a few more steps that would allow him to interface with my computer, which, he said, was necessary to diagnose the problem. I watched, helplessly, as he navigated the cursor on my screen and moved quickly in and out of windows and in and out of my settings. Then he confirmed my computer had, indeed, been attacked by a wicked virus. The very worst, he said. He pulled up graphs on my screen depicting the damage and just how much of my data had been infiltrated. He said to remove all the infectious material would take about 24 hours and all I had to do was pay $79 and he would fix the whole darn thing.

What a doll, that Rachid.

I may look old and stupid, but I tell you what, once in a while, when the thing is wretchedly stinky, I’m able to smell a rat.

I hung up on Rachid as fast as you can say “India” and slammed my computer shut. I set it in the corner like a bad child and didn’t open it again for 24 hours. The truly honest and genius boy-child at my local computer store fixed everything the next morning in mere minutes. He felt pity for such an old, helpless lady like me to be taken so badly by a hacker that he didn’t even charge me for his services.

Once I calmed down from the debacle, I realized I was actually thankful for everything I learned from Rachid:

1.  We are not in control of squat. As I watched Rachid guiding my cursor all over the screen and clicking away to “convince” me of my desperate need of his services, I felt incredibly helpless. I didn’t know if I should trust him or not – all I knew is this: “I have no control anymore.” It reminded me of how often that is true in life. We want to believe we can control things – but when our child rebels and runs away from home, or our best friend betrays our trust, or we lose our job, or we get the “cancer” call, or we lay our parents down for their eternal rest, or we find out we have a stupid lung disease that’s robbing us of steady breathing and a long life – well, all those moments serve to remind us that we don’t control SQUAT. We are wasting our time and energy trying to control that which we were never meant to have reign over.

2.  Satan is real. A while ago a well-meaning friend told me I look for satan under every bush. She was suggesting that perhaps I give the enemy of our souls more credence than I should. I don’t know, maybe I do. Sometimes I think I just watched too many horror movies in junior high…

But what I know for sure is this: That old Liar roams to and fro looking for ways to steal our joy and wreck our faith in Christ – but the sooner we recognize his schemes the sooner we can put a stop to it! Don’t be afraid to ascribe evil to he who authors it!

3.  We never make good decisions when in the midst of a crisis. When we find ourselves in a crisis, we need to, if possible, BACK AWAY! Give the thing time to simmer down. We need to give ourselves some space to slow our breathing, gain composure, pray, and THEN process the crisis thoughtfully. Only then can we gingerly step forward into finding a solution.

4.  Real, authentic, caring help truly does exist in this world. Go seek it.

5.  Never think too highly of yourself. I was devastated thinking that while Rachid had access to my computer for those 24 hours he was probably reading and stealing all of my information on my computer. My wise, gentle hubby had to (carefully) remind me that I’m not THAT special. We don’t work for the government, we’re not made of millions, and we’re not famous – so what could a hacker really “steal” from my computer that would matter? A blog on how we renovated a crack house??? The little circular I wrote on how to deal with menopause??? The poem I wrote for my dying dad??? Did I really think some hacker from India would steal my Christian memoir book and somehow get publishers to do what I have been unable to do and publish my book under his pseudonym??? Rachid becomes Rachelle and suddenly he is the next Anne Lamott???

 I had to admit, Paul had a point…

6.  If you have nothing to hide, it doesn’t matter who looks at your stuff. Without a single incriminating photo, without essays bashing high-profile people, without massive wealth, and without anything to share except the gospel of Jesus Christ, I should have had NO FEAR of someone stealing my content. In fact, I should have HOPED they would!

My prayer for us today is to not fear the hacker – or anything or anyone set on destroying us. May we be a people unafraid or unashamed of someone looking at our computer content or our browsing history. May we recognize those who are bent on causing pain, hurt and chaos in our lives and STEP AWAY from them whenever possible. And may we not think so much of ourselves or our work that our computer carries more importance than it should.

And may we never forget that when a TRUE crisis arises (and they will, brothers and sisters, they ALWAYS do….) help is only a shout away:
“Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy.” Psalm 61:1-8
 

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

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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.

If I only had 10 more years to live:

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The phone finally rang – two days, three hours and fifty-seven minutes later than it should have.  I was a shredded pile of emotions from the waiting.  She took an infinitely long breath, cleared her throat, and dealt the blow:  It is as we feared – lymphangioleiomyomatosis.  I know what you’re thinking:  that’s not a word, it sounds like a kindergartener made it up.  It’s most definitely a word and it’s definitely no joke.  While initially I was relieved that it wasn’t the “C” word – the one disease we’ve all learned to respect – now I’ve come to wish it were.  I remember learning in nursing school that cancer should really be viewed as a curable disease.  Many times people with cancer receive successful treatment and are cured and we need to stop thinking of that diagnosis as the kiss of death.

Not so with lymphangioleiomyomatosis (or LAM, its kinder acronym).   It is not curable.  In fact, “they” – those great minds of the medical elite – make no concessions about that.  “They” don’t even know how you get it or how to treat it.  Paul and I have been to multiple physicians and even drove across the state to the University of Michigan and talked to the most special specialist who specializes in LAM.  I have also now read from nearly hundreds of websites – six weeks since I first heard there was an evil in the world called LAM.  Six weeks since “they” first suspected I have it.

I am 47 years old.  I basically feel healthy and strong, but for years I have wondered if I was more short of breath than I should have been.  Although I can walk for miles, I couldn’t really carry on a conversation while walking, and try as I might, I was simply unable to run for lack of air.  I blamed it on being 20 lbs overweight and vowed that someday, when I finally got in shape, I’d run a marathon.  I was also more tired than I wanted to be – but I blamed that on four kids, multiple moves overseas, middle age, and an affliction that makes me unable to say “no”.  And, apparently, I cough.  It doesn’t bother me any, but I’m finding out my loved ones have noticed it (a lot) and find it rather annoying.  But I would have sworn to you I’m not sick – just, well, a little bit not quite right.  But now “they” have assured me those are all symptoms of a disease which initially lets you appear healthier than you are.  I guess LAM has started to take over my lungs and moved toward my kidneys.  And slowly, I will find it harder and harder to breathe until I simply cannot.  “They” say this takes, on average, ten years.

Where does one even begin to process that?  Before we even started telling family and friends – or our own kids for that matter – I was thrust, unwillingly but entirely necessarily, into a mind-numbing exercise of trying to make sense of all that is life, and all that is death, and how to fully live in every gifted breath.  I hope, and believe, that as my plus or minus ten years progress, I will discover more about the meaning of life and that I can exit this reality with more peace than I have today.  Because today I’m still a bit of a mess.

One day, or maybe it was night (they’re all a blur lately), while being swallowed both in self-pity and a sea of snotty Kleenex, I decided someone with a terminal illness should probably make a bucket list.  Ten years is not near enough time to do all the things you thought you had 40 years in which to do them.  My list included many things one would expect to see on a typical bucket list:  see “Wicked” on Broadway, visit Machu Pichu, walk the great Wall of China, run a marathon, see Coldplay in concert, hike the Himalaya’s, learn to speak Spanish, sky dive, etc.   

But before I even got to #9, I had a revelation.  I realized that if I really only had 10 years left, I better first figure out the pointto this life and then waste no time trying to get there.  I don’t really have time for pointless activities – unless of course they were done with people I loved – but then, that would be the point.  The more I thought that through, the more I was convinced I couldn’t (wouldn’t) make a bucket list full of typical things one does before one dies.  Because, I reasoned, those typical entries were all deposits made into “ME”.    Places I wanted to go, wonders I wanted to see, things I wanted to do – all of which, are all for ME.  With only 10 years left, why would I only make deposits into ME?  When I die, those deposits all die with me.  The only legacy one can possibly leave behind that makes any sense at all is a deposit into OTHERS.   What I really must do for the last 10 years is pour whatever energy I have left in me into other people. In my less selfish moments, when I’m not grieving over the fact that I will be robbed of maybe 20 or 30 years on this planet, I have concluded I must spend my years sharing the love that I believe can only be found in Christ Jesus my Savior.  I want to live like Him – just extravagantly loving others and pouring myself out for them.

So,  this is my better bucket list:

  • I want to spend as much time with my four children as they’ll allow.  I’m aiming for a melange of Carol Brady, Claire Huxtable, Maria von Trap, Mother Mary, and Olivia Pope – praying that even a sliver of good in me can be majorly multiplied in them growing them into good, kind, compassionate, hard-working, self-less givers who are musical, wickedly smart, and forceful world changers.
  • I want to be spending unhurried time over long lunches with friends who feel like they’re being trampled from the hurried masses, beaten down by the world’s injustices, or crushed by the pressures of a culture run amok  – and simply listen.  We’ve all got crap we’re dealing with – but we don’t often find good listeners with whom we can safely spew our crap.  Dear Lord, make me a big crap loader.
  • I want to walk Buddy, my Holy Spirit she-dog, through the trailer park and let all the children (some who, I fear, are bearing physical and emotional wounds from their tired, over-worked, and underpaid daddies) pet her and play with her and forget their troubles for just a few moments. 
  • I want to spend unsolicited coffee-time with my sweet and self-less mother-in-law who is slipping away slowly and barely remembers my name these days.
  • I’m going to be all about letting my 12 year-old daughter climb up on my lap even though she is entirely too old to be doing that sort of thing, but entirely able because she is from Guatemala – a country where they just make smaller people.
  • I want to drink wine with our friends until we’re giddy and foolish and we let some buried things bubble-forth and then we laugh and cry together as we realize this was the very therapy we needed.
  • I want to take longer showers (My husband must be thinking:  is that possible?) – but like most people,  that’s where I get my best revelations.  Often, I feel God reveals to me random people from my past which feels like a prompting to reconnect:  Kathy Henderson from nursing school, Diane Marker from Davenport,  Stephanie Saumon from Aix-en-Provence, Julie Jones and  Stacey Johnson  from Casablanca and countless others – where are you now,  my sweet friends?  And do you randomly think of me as often as I randomly think of you?
  • I want to keep visiting our poorest of poor friends in Morocco and just sit with them, accepting their extravagant generosity, while we wrestle with the pain of how much we have and how much they have not.  And loving them deeply, without necessarily fixing their problems.
  • I’m going to keep a large bag of Snickers in my car at all times so I always have something to give a pan-handler.  Since I am running out of time, it doesn’t look as if I’ll be able to solve the problem of poverty and homelessness in America – or for the rest of the world for that matter.  And that beats the hell out of me because I so wish I could.  But possibly, for this moment, on this day, for this one person, I can at least hope to spread a flicker of sunshine.  Besides, who doesn’t love Snickers?
  • I’m going to work hard at forgiving those who wounded me unintentionally.  Harder yet – forgiving those who hurt me intentionally.  And why stop there?  I want to bless them, too.
  • I’d like numerous fireside chats with our neighbors making time for sharing stories.  But also watering their flowers, feeding their dogs, eating their cherry tomatoes, giving their kids popsicles – so they are much more than “the people with the white car”, but they are fellow sojourners whom we actually share life with on our little cul-de-sac in Hudsonville.
  • I think I’ll watch more comedians.  Brian Regan, Jim Gaffigan, Stephen Colbert (don’t judge) and Tim Hawkins – these will be some of my new friends.  I just want to laugh, in a room full of people I love, because I think laughter is music to God’s ears.  And bonus, I’ve heard a good hard belly-laugh can burn upwards of 100 calories.
  • I’d like to keep working at my job at a psychiatric hospital – because I believe I have been called to serve the marginalized in society.   I feel so honored and privileged to care for these misunderstood people – I’d even be willing to work there for free.  And I now see how the soul begins to die when we stop serving others – which is a much worse death than the physical one.
  • Because of that last one, I think I’ll return to the homeless shelter where I interned last year and start volunteering.  I’ve never felt more alive than when I walked through those doors and breathed in deep the aroma of desperate need colliding with God’s love in action.
  • I want to spend countless afternoons watching the sparkles accumulate on the lake as the sun descends in the sky, and then, because we’re too ensconced to get up and cook a proper meal, we’ll just throw all the food from both of our refrigerators onto the picnic table and feed all the kids left-over chicken wings, string cheese, a head of lettuce and a can of baked beans.  I want to laugh and eat s’mores and drink wine around the campfire until our sides hurt too much from laughing and the mosquitos chase us away.
  • I want to have ice cream for dinner – repeatedly throughout my remaining summers – buying about 20 gallons too many so that we can take all the extra gallons to the trailer-park to spread smiles.
  • I want to spend time at my local nursing home and find out which residents never get any visitors.  And I want to sit with those lovelies and let them talk endlessly about their childhoods, their children and grandchildren, their careers, their legacies – until they run out of stories or break into song with “How Great Thou Art”.  I used to work there – I know how it goes.
  • I want to pull out my memorabilia from high school and college and spend a whole day, or perhaps a whole week-end, with my high-school sweetheart, who both miraculously and graciously married me, and together read through all of our old hand-written love-letters to each other.  And I want to revel in the beauty of 27 shared years.  Twenty-seven.  That’s a pretty big number when you’re talking years.
  • I want to read a ridiculous amount of books.  I know that seems contrary to what I said earlier about investing in others and not myself – but I also believe this truth:  When we live out the life that God destined us to live and we become who He created us to be, He is glorified.  He made me a reader and a writer.  And when I read, I feel His pleasure.
  • I want to plant trees.  Is it just me or have others noticed that the trees are dying?  When we returned from living in Morocco, I was hyper-aware of dead trees everywhere – way more than when we had left 4 years prior.  I think it’s continuing to get worse.  I think I’ll plant at least one tree for every year God gifts me here.  At first, I felt like this one wasn’t an investment into people, but now I think it is.
  • I want to hand-write cards expressing: “Thank-you”, “Way-to-go!”, “Congratulations!”, “Thinking of you”, “Praying for you”, “Sorry for your loss”, “Wish you were here”, ‘til my carpal-tunnel screams “No more!”
  • If my lungs will allow, I want to take several trips to Guatemala or Honduras – two countries that are home to many people we know and love.  And on these trips I want to take bunches of people who have never left the USA before, and introduce them to the “real world” and hope and pray that they get it, absorb it, and live differently because of it.  That’s what changed us, anyway, and I’d love to keep paying that forward.  Even though it wrecks you for good.
  • I hope I’ll never watch another reality TV show – perhaps any TV show for that matter.  I don’t find the point in it at all.  Unless, of course, it is “24” with my husband and our two sons and we’re all death-gripping each other’s hands on the couch, or “Downton Abbey” with my two daughters curled up under the same blanket with me.
  • I don’t know, but I think with only 10 years left, I’m going to give up dusting and vacuuming.  Those two things seem equally pointless and just time-suckers – time better spent with people.  I need to be about making a point.  I bet they don’t dust and vacuum in the Congo.  I’m contemplating throwing out cleaning toilets as well – but more undecided on that one.  I still have nightmares about the toilets at Paul’s college residence after just ONE year with no cleaning… I swear I got bit in the butt once by some kind of toilet vermin.
  • And I’m going to write that stinkin’ book.  It doesn’t matter if it is ever published or even gets read for that matter, it just matters that our story gets told.  We all have a story and they are all too good to not be told.  The five reasons this bucket list entry is for others and not for me are named:  Paul, Andy, Josiah, Grace and Yulisa.
  • In fact, I’m going to write everything down on this journey.  And I’m going to share it openly not caring what some negative people may say anymore.  I’m done with letting words hurt me, and I just don’t have time for that anymore.  The only way I can be hurt now is if someone would steal the set of lungs that I might need for a transplant.
  • And then, hopefully, if I still have energy left after all that, I want to devote serious time, money, and creativity in bringing awareness to LAM.  Because it’s so rare, it doesn’t receive the research monies a terminal illness deserves.  It still has no cure, and it is silently killing many women in the prime of their lives with average age of diagnosis around 35.  I cannot possibly understand the mercies of our God – but mercifully, He has allowed me to live this long, well into my 40’s; and hopefully, He grants me another 10 years.  But many other women with LAM do not live long enough to even see their first grey hair or their children graduate from high school.   I want to tell everyone I know about LAM, and trust that somehow, somewhere, someone out there exists who will discover the cure.