Dad, you were . .
Dad, you were the one who held me up so I could see the Disney characters face-to-face.
You were the one who took me out for ribs with extra sticky barbeque sauce.
You were the one who knew that Gonzo was really a kind-hearted chicken hawk.
You were the one who taught me to ride my bike . . even if you got a bit crabby about it. 🙂
You were the one who drove me to college every morning for a semester, never mentioning how pathetic it was that I didn’t have my license yet.
You were the one who made sure I had all the baby dolls and foo-foo-plastic-animals-with-vinyl-hair that I wanted . . even if you never knew how you were supposed to play with them.
You were the one who let me tell you the dumbest jokes on the planet, because you were too patient to tell me how annoying I was.
You were the one who said how smart I was.
You were the one who traded in your dreams of playing baseball and taking nature walks with your little girl for playing Disney characters and visiting the ice cream shop instead.
You were the one who told me I had your eyes, and it was indisputable.
You were the one who left every December day on your lunch hour to check if any nearby Wal-Mart stores had the Nintendo 64 in stock.
You were the one who taught me how to line my putter up with the hole . . and then regretted ever teaching me to move the leaves out of the way before I putted.
You were the one who bought me my first roses.
You were the one who never seemed upset that I couldn’t cook or play sports or keep track of my money or tell you how much I really loved you, even though I really did.
You were the one who liked my high ponytails because you could twirl them.
You were the one who buried my frog in the backyard, because I couldn’t stand the thought of it being flushed down the toilet.
You were the one who said–every time you came across someone who was in a wheelchair–how good you really had it to be able to walk.
You were the one who later sat in a wheelchair and never complained that you couldn’t walk anymore.
You were the one who couldn’t wait to get back from business trips to see us again.
You were the one who thought manilla envelopes were “vanilla envelopes” (and I did, too).
You were the one who read a tract a friend named Elvis gave you and you gave your life to God.
You were the one who drew cartoon characters with speaking bubbles of encouragement for my trip to Hungary.
You were the one who was going to walk me down the aisle one day.
You were the one who naturally went down on your knees when you prayed about something deep in your heart.
You were the one who wanted all my college to be paid for, because yours wasn’t.
You were the one who I promised to take to Maui again someday, and you believed me. I know you know I would have, Dad. It was a promise.
You were the one who never got to see me teach a single lesson to a class full of second-graders, yet you paid thousands of dollars for my chance to do so.
You were the one who always agreed with Mom for the 79-cent (or so) “cinnamon twisties” to go to me whenever we splurged at Taco Bell.
You were the one who wanted a life for me filled with the beauty and essence of Christ.
Dad, I have good news for you.
I’m getting there.
You were a lot of things for me, things that outlasted your time here on earth. But none of this tells the most important part of the story.
Who you are.
You are the one who made it to Heaven before me.
You are the one who stands with all the other made-it-home believers in the Presence of God.
The chapter of your life here on earth is closed . . but it isn’t the end of your story.
There will always be stages where I will miss you. There are people I want you to meet, things about who I am now that I want you to know. I want you to see my life, and how it’s changed in the hands of the Savior just like yours did. I want you to see that I followed in your footsteps, Dad, that I know Him now the way you did in your time on earth . . before you saw Him face-to-face.
It isn’t, Dad, that you were my daddy.
You are my daddy. Always & forever.
Thank you for holding me up so I could see the Disney characters face-to-face.
Thank you for holding me up in hope that, one day, I would see God Himself face-to-face.
I will now. I love you.
Clap for me.
I don’t remember very much about the moment of walking down the aisle to receive my diploma. I don’t remember the diploma. I know I must have received it; I know I framed it. But I don’t remember reaching for it. I don’t even remember holding the scroll in my hand.
Nor do I remember shaking the president’s hand, or what shoes I wore, or what I did other than smile. I do remember the long, almost endless, and yet split-second walk down an aisle to go across a stage to take a diploma I don’t remember taking to go off the stage and back down the aisle.
The announcer called me by my legal first name, something he had to do, but something I haven’t gone by a day in my life, and I don’t think any college friends lingering around knew who I was until the moment had gone by. So I didn’t have any of them to clap for me. My mom was taking pictures on our digital camera, so she couldn’t clap.
I guess I had a professional photograph taken, maybe–I don’t remember. I guess I had my few seconds of fame walking from one seat up a platform and down to another seat. I know for a fact I look horrible in a long black gown. But what most sticks in my mind in that walk towards the diploma was the clapping and hollering.
From my vantage point on stage, it sounded like I had one admirer. And yet, this was more than enough, with the fervency of the admiration. The hollering and clapping was enough to hold its own against ten rowdy college kids.
There was something about the hollering and applause. It wasn’t just the screams of college kids trying to get attention for themselves or embarrass their roommates. It was more like Jubilee shouting, Jubilee clapping. Like a slave getting set free, or a hard journey rounding the last bend.
The clapping was gone, and the rooting, and my turn in the radius of the spotlight was up.
But who had been cheering for me?
It was my father.
My father never was a very loud person at public events.
He didn’t cheer loudly at a baseball game–though he did in front of the TV. He didn’t applaud like crazy at my piano recitals–though he bragged on me in the car. He didn’t say the loudest “amens” in the pastor’s sermons–or any “amens” out loud, but he’d talk about the message with conviction over Sunday lunch.
Dad was . . shy . . about sticking out in a crowd. Like a bird that flies only when it isn’t watched too closely, my father was a wild cheerer only without scrutiny.
Now, the fact that my father was cheering and clapping despite this shyness might not make this story so extraordinary, because people do sometimes (rarely) change old habits. But what makes this story so amazing is that my father had Lou Gehrig’s Disease.
Lou Gehrig’s Disease.
He was at the point where he could barely talk, much less yell. He sounded garbled, languageless. And clap loudly? Impossible. He couldn’t button his shirt, much less slap his hands together in wild applause.
So what on earth happened? A miracle? Well, yes, but not in the way you are probably thinking.
Rewind to the time before I’d walked across the platform, before I walked up the aisle. Rewind back to family rustling in their seats as they waited for my diplomatic debut, my mother edgily fingering the digital camera. My family held their programs, waited for my name, talked in low voices about things no one remembers to make the time go by faster.
But not my father. He had no part in these things. He had something else to do.
He gestured clumsily, fumbled with slurred words–whatever he could to get my grandfather’s attention. My dad was on a mission. He’d made up his mind to keep trying until my grandfather understood, no matter how tired he got.
He did get my grandfather’s attention.
My grandfather watched him closely.
And he understood what my father wanted, what he was trying to say:
Clap for me.
My grandfather did.
And because he was cheering on behalf of my father, he threw everything he had into it. It wasn’t a moment of celebrating a ceremony. It was the chance to show my father he understood just how much he wanted to cheer at his only child’s graduation. It was the chance to carry out my father’s will when he was utterly helpless to carry it out for himself.
The ceremony itself was, in a way, hard on me. I was receiving an award– and I was losing my father. I don’t remember the student in front of me or behind me, or the beautiful symphony music, or how full the building was.
But I do remember the clapping.
For while we were still helpless, at the right time Christ died for the ungodly. (Romans 5:6, NASB)
When we were unable to do for ourselves what we most needed, Christ died for us. I am convinced that I can’t unbind the burden of sin from my own back. I can’t break my own sin nature; I can’t live a single day untarnished. I am paralyzed in my sin.
That’s why Christ clapped for us.
When we couldn’t do anything to unburden ourselves, He unbuckled the load of our sins and carried them on His back. That is the story of the cross.
He raised His hands when we could not, and He took the nails. He drank the suffering we could not, and He finished the cup.
And no one who believes in Him will stand in silence before the throne of God.
Mobilized by His grace, we’ll all clap for Him.
God had Christ, who was sinless, take our sin so that we might receive God’s approval through him. (2 Corinthians 5:21, GW)
Maui vs. Heaven: Which is really better?
As a teenager, my family took a trip to Maui. What with the flower leis, tropical air that smells beautiful everywhere, exquisite fruits, floral & fauna my allergies didn’t react to, stunning beaches, squeaking dolphins, and delicious-delicious cheeseburgers, I was absolutely sure Maui was the best place on earth to be.
Going back to the end of a midwestern winter–with snow on the ground, no less-was, in my mind, abysmal.
The only good news I could see from this was that one day I could get to go back.
When my dad started struggling, even before we knew it was ALS (Lou Gehrig’s Disease), I made him a promise: “I’ll take you back to Maui.”
My dad must have had close to the same feelings I had about Maui, because it was the best I’d seen him feel in a long time. I had a plan. I was, yes, a new little college student with parental funding, but someday–soon–I would take him to Maui. Maybe only three or four years down the line. I’d have a great paying job, and that was that. There were always credit cards, anyway, and I’d be old enough for one by then.
I didn’t have three or four more years with my dad. That year, he came down with the muscle-evaporating ALS. Over the next year and a half, I watched my father waste away.
Maui wasn’t going to be possible.
Not only was he sick, but he was confused. He had dementia–badly. Even if I could somehow take him to Maui, not even the sun-sipped beaches could have cheered him up, or saved him.
When my dad died in ’04, I thought about that unfinished promise. It wasn’t that I was guilty for being unable to take him to Maui. But it felt as though God Himself had cheated my father. After all, I really was going to take Dad to Maui, and God took him away before I could do so. From my angle, God made Dad miss out on the juicy pineapple, chattering dolphins, and saltwater snorkeling.
Now Dad was in Heaven forever and would never get another Cheeseburger in Paradise with the pigeons playing football around the deck with pieces of bread. He’d never get to see the saltwater rainbow fish or pat the dolphin that felt like a rubber inflatable, or gobble down pineapple closer to the color of egg yolk than I’d ever seen before.
Even if Heaven had some of these things, I was sure it wouldn’t be the same.
If you even got to snorkel in Heaven, I couldn’t see how there could be much adventure to it, since nothing bad could ever happen, like saltwater get up your nose.
If you even got to pet a dolphin in Heaven, I was sure you had to do it ancient-ritualistically-like (which was how I used to think of holiness).
And would there really be a Cheeseburger in Paradise? I didn’t expect to see franchises in Heaven, or waiters who served food around greedy pigeons. The pigeons wouldn’t even be allowed to be greedy, so it would be no fun watching them. They’d all take turns for the bread.
And how could the ridiculously sweet pineapple be special, if there wasn’t any sour pineapple to compare it with?
I was fairly suspicious that God had shorted Dad. The worst part was my Dad would have to play a harp now. He didn’t even like harps. He liked drums. What on earth was he going to do with himself until I got up to Heaven and we could at least whisper to each other and steal a few careful chuckles at each other’s ribbings?
If there was one word for how I felt about Dad’s luck in missing his Maui trip it was bummer.
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I still remember the day Chuck E. Cheese opened.
My friend’s mom drove us to Chuck E. Cheese. I had never seen any place like it. Ever. Jam-packed with kids on its grand opening, there were theater lights, robotic characters that played in a band, a costumed mouse that walked around, an unthinkably long “jewelry shelf” (the kind that has the bubble top over it so you can’t help yourself to what you see) of toys, loud & crazy noises, and games, games, games, games, games. GAMES! GAMES!
Skeeball. A little bowling game. A memory match game that was digital. A game with real squirt guns to put out a plastic fire. I could have fainted from ecstasy.
But I couldn’t possibly faint because my friends’ mother broke the bank and got us a totally generous number of tokens. I was just about beside myself. I started playing up a storm.
And then, suddenly, my friends’ mother came back with a cup full of tokens. It’s a good thing there weren’t any EMT’s there, because, if they’d taken my pulse, they might have made me go to the hospital.
We must have been there for hours. I can’t even remember what cool stuff (that I cared about for at least 24 hours) I got. But I was more totally satiated with delight than I had ever been. I remember me and my friends sitting almost in absolute silence on the car ride back, worn out from too much happiness.
I was convinced–unshakably convinced–that there was no experience in the whole world any better than the day I’d just had.
And then the day came when I heard God say “I love you”.
Chuck E. Cheese dropped like a coin down a funnel to somewhere so far down it was hard to even see.
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It’s easy for me to explain my day at Chuck E. Cheese. I can talk about the show, games, tokens, toys. It’s easy for people to immediately connect with. Most of us, as kids, liked bright lights, fun games, play money, and winning prizes.
You know what’s really hard to explain? The day I heard God say “I love you”.
There is not something really from the ordinary realm of human experience I can compare it to. Comparing it to natural experiences is really, really hard. It wasn’t colorful lights or music-playing robots or arcade games. Those things can be really fun, but that’s not the same kind of experience. Because, at the core of those things, they’re manufactured, artificial if you will. Made for the express purpose of getting a certain money-making emotion out of people.
And it’s not so easy that I can explain God’s love as something from the natural world, either. There is a way of expressing salvation that’s like the freedom of riding a horse for the first time, or flying with new wings. But these are just tastes of feelings, not the essence of what has happened.
To really explain what it feels like to hear God say “I love you”, you have to have that experience. There really is no parallel. And that’s why it’s so hard to get people to even realize they want to experience it.
It’d be a little like a parrot that has just had the meaning of language revealed to it trying to explain that to its parrot friends who are just mimicking. What the parrot says to try to explain the meaning of language can be ignored or mimicked by the other parrots, but it cannot be understood without the same revelation the parrot has had.
Maybe that’s why it’s so hard to talk about spiritual things in the natural world, and why they sound so silly to people sometimes. As a kid, I got tired of thinking about having wings in Heaven. That didn’t seem like much after a while. Golden streets sounded neat–but what was next? Surely that wasn’t it. Harps sounded outdated and tedious and very formal. Singing all the time sounded dreadful to me and like a lot of standing with a hymn book.
I was missing the essence of Heaven, and so I made the mistake of thinking my father had missed out on Maui.
I was looking at “stuff”. Good stuff, but still stuff: dolphins, cheeseburgers, snorkeling, leis, beaches, pineapple. I was making an inventory of everything I thought Dad was missing and mentally frowning as I tried to imagine its replicate in Heaven.
Would there be greedy birds in Heaven? No. So how could Heaven be fun?
Would there be runt dolphins in Heaven? No. So how could Heaven be fun?
Would there be the risk of getting saltwater up your nose in Heaven? No. So how could Heaven be fun?
I was looking for Xeroxes of what I saw on earth. If copies of what was on earth weren’t in Heaven, how could Heaven be even as good as earth, much less better?
This is something like a ten-year-old girl wondering how her wedding day can ever be half as good as the day she spent at Chuck E. Cheese.
But what if . .
What if the fun of watching birds compete for food . . . what if that kind of exciting race-and-tackle goes on in Heaven, but without ever any starvation?
What if the adorableness and precious love from petting a runt dolphin . . . what if that kind of “awww” feeling is created in Heaven by God making wittle bitty dolphins who are just as healthy as their peers and don’t ever die?
What if the thrill of the possibility of getting saltwater up your nose while snorkeling . . what if that kind of thrill is in oceanic adventures in Heaven, only without the nasty taste of the saltwater?
My fears are easy for me to find answers for now, but you know what? The defenses I just gave really have nothing to do with the essence of Heaven. They’re really pretty much worthless.
Heaven is not about pigeons or dolphins or snorkeling. Before, I thought Heaven was less-glorious than earth. But thinking of Heaven as just having more glorious (or fun) stuff than earth still doesn’t begin to explore Heaven. It’s like looking at a snowglobe and describing each little white flake that falls down.
That’s not the focus of the snowglobe.
The center piece is the focus: the object all the snow is falling around. The object that makes the falling snow enjoyable at all.
God is the center of Heaven.
That will be terrifying, undesirable, and/or disappointing to anyone who doesn’t know God.
But, if you have heard the heartbeat of God as He presses you against His chest and tells you He loves you, you’ll realize that is everything you were ever looking for. It’s the kite with the never-ending yarn that flies higher and higher in the sky: this is a picture of what the love of God does to the receiving human heart.
It’s indescribable. It makes worrying about pineapple–well, goofy. My spectacular promise of taking Dad back to Maui became like a rotting pea in an infinite garden of watermelons the moment Dad saw God.
Dad could care less about Maui. Maui smaui. The only question about that is, Am I willing to let go of what I wanted to give and agree that what God gave Dad is totally way better and totally showed me up?
You bet I am.
Dear God,
If Dad was here right now, we’d probably be having his 62nd birthday right now. Since he wasn’t much into parties and especially since people down here don’t think the number 62 is anything special, it would probably be just family. We would probably have cake, and Dad would probably make sure there weren’t any crumbs left on the table. I’d probably have gotten him something between $50-100 and he’d probably have liked it and it probably would have sat on his office desk on display.
I could be bitter, sad, or mad that he’s not here right now to celebrate with us. But, God, how could I, really? I don’t know what’s happening for his birthday right now. Maybe there’s a huge birthday bash. Maybe he’s singing for You and playing his guitar. Maybe he’s waiting breathlessly for Your Coming Back, when everyone will be brought before Your Judgment Seat.
Whatever is happening right now, I can only guess. But I do know this: He is altogether captivated by Your love.
I love You, too.
P.S. Thank You for forgiving me for thinking all that messed-up stuff I thought about Heaven.
In Jesus’ Name,
Amen.
“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” (1 Corinthians 2:9b, NLT)
My dad’s favorite shows were Ed Sullivan and Lawrence Welk–but only while he was sick
I grew up with a dad who thought Lawrence Welk reruns about as interesting as mashed potatoes without gravy. I remember him surfing channels with what little time he watched TV, and when he’d hit PBS at 7:00, he would look to make sure I was around and then stop.
The theme song would be playing. He knew I hated the theme song. He’d get up and dance. It was just the most hilarious dance I’ve ever seen. He would “partner dance” without a partner, spoofing the dancers on the Lawrence Welk floor. One time, he surprised me and grabbed my hand and started dancing.
I can only ever dance with my daddy, I’ve found out. Anybody else, and I’m a nervous wreck and stiff as a board. But Dad could make a mannequin look like it had rhythm, I think.
Dad thought Lawrence Welk was ridiculous.
That is, until he got Lou Gehrig’s disease.
My dad had dementia, and not everybody has dementia with Lou Gehrig’s disease, but my dad did. I watched this very puzzling and heartbreaking change in my father.
I got my dad a chunk of plaster from the original Ed Sullivan show off Ebay for his birthday. What was I thinking, I don’t know. I was trying–trying to . . connect to my new father.
But his changes didn’t stop at Lawrence Welk and Ed Sullivan. He wasn’t funny anymore. He didn’t seem to like me a lot of times. He liked a stuffed dog I had, and pressed a button over and over to make it talk. In fact, he even liked the real dog I had–and he wasn’t ever keen on dogs before (except Shelties, which I never had).
I am convinced from my father’s dementia that salvation is locked in the soul, not the mind or heart. I don’t mean to say that I believe a person can never lose their salvation. I don’t know about that–I wouldn’t try it. But I do know that God, being the God that He is, protects our salvation in our souls, even when we can’t remember in our minds.
How do I know?
I know because God is good. Jesus said about His followers,
My Father, who has given them to me, is greater than all, and no one is able to snatch them out of the Father’s hand. (John 10:29, ESV)
My father’s last words were written on a Magna-Doodle on September 22, 2004, to our pastor and music director who paid him a visit: “Pray for me.”
My dad literally lost everything about who he was . . except his love for Christ. And I don’t mean to say He even knew He had that love. I don’t think he could have even explained who Christ was. His mind was lost.
But something had caught in his mind. It was the request he’d made over and over again, when he had known in his mind who Jesus was: Pray for me.
I refuse to pretend my father mentally had Jesus at the end of his life.
And I refuse to believe Jesus would ever let him go.
It isn’t even a refusal. I know it more clearly than I know that the sky is blue. If a husband can love a wife with Alzheimer’s, if a father can love his child after complete memory loss . . how can we ever question that God would love the person He died to save, even if they a disease has destroyed in their mind who He is?
I can smile now thinking about the Lawrence Welk theme song. It reminds me that God’s love is big enough to save us–even when we don’t remember He’s our dance partner.
Hold on to me, take all of me
Don’t let me lose my way
Hold on to me
–Busted Heart, King & County
If I take the wings of the morning or live in the farthest part of the sea, even there Your hand will lead me and Your right hand will hold me. (Psalm 139:9-10, NLV)
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See Copyright Page for Bible translation information.
I’ve found out someone I love has Lou Gehrig’s Disease. What do I do?
I remember that first day.
I was at a friend’s house, waiting for news. Our pastor came over to tell us the news. He’d been with my mom and dad at the doctor’s office.
I had been told my dad probably had either a brain tumor or Lou Gehrig’s Disease. And that I should hope it was a brain tumor.
I guess I had thought it was a brain tumor, because when I found out it was Lou Gehrig’s Disease, I felt insane. You hear the term “hit with a ton of bricks”. This was like getting hit with a ton of bricks–but I didn’t feel the bruises until the next day.
The next day was Christmas Eve.
My father was sobbing. The whole day, I remember him sobbing. My mom cried. And I just wanted to go away somewhere where I would never have to deal with this.
I can’t remember how much time went by before I looked Lou Gehrig’s Disease up on the internet, but it wasn’t very long. Looking it up, reading about it, I felt like I was learning something as crazy as that elves and flying horses were real, only, there was nothing magical about this.
If I could go back, and place myself in that moment again, what would I have liked to know? Here are a few things I learned, and, while I can’t promise that it will all be helpful or even relevant to you, if someone you have loved has been diagnosed with Lou Gehrig’s Disease, my prayer is that something in this will help you.
Shock
Please remember that you are in shock. Your body is in shock, your mind is in shock, your soul is in shock. This is not a time to be rough with yourself. You’re in shock, and you need time. It won’t feel like there is time right now. But give yourself time to just “shock”.
Darkness
Disease is darkness. There is a loneliness, a desolation, and a great feeling of abandonment in disease. You’ll feel like you personally have been cursed, for someone you love so much to be going through this. You’ll see the ugly underbelly of disease that is rarely portrayed in movies.
You’ll feel as though a rug has been yanked out from underneath you, and a bottomless pit is underneath. It might sound awfully pessimistic and depressing to say that disease is darkness, but denying it only seems to escalate the twilight.
Almost nobody
Almost nobody knows what to say. Friends and family will try their best to take a stab at helping your grief, and that is usually just what it will feel like: a stab. You will probably want to hate some of your good friends–maybe even all of them–and maybe fist in bitterness towards your family. You will probably want to drive people away because most of them are so unhelpful.
Unwelcome reality
You will probably find out you have a lot fewer friends than you thought.
Too much research too soon
You will want to research Lou Gehrig’s Disease and people who have had it, and that won’t probably be a good idea right now. Shock is really like an electrical voltage. Be kind to yourself and don’t amp it up any more by reading things on the internet that may or may not be true and by learning about late stages of the illness. You’re not there yet.
Do I have it, too?
You may start experiencing physical symptoms yourself, even symptoms that resemble Lou Gehrig’s Disease. This isn’t an unknown phenomena. Get yourself checked out, and then let yourself rest, at least for a while, if doctors can’t find anything “wrong”. Stress is really hard on your body.
Trying to be a hospital
Please don’t try to do everything at once. You probably want to “fix” this, and that’s part of loving someone, but you can’t be your own hospital.
You don’t need to research every possible help for Lou Gehrig’s Disease in the first 5 hours after you find out the diagnosis. For one thing, there are all kinds of cruel, cruel people out there who have never lost someone they love from an illness or just don’t care and they exploit people who are desperate and looking.
To find out about research, immediately join a support group at your local medical facility or through the ALS Association, but please, please don’t get sucked into the misinformation and lies that just worm their way out of the woodwork when you’re looking for cures.
The curse of false cures
There will be people, maybe even people you love and trust, who will suggest things to you that could be cures or remedies. You will want to believe in all that desperately because who wants to have despair?
There is a way out of despair without being baited into cons. Pray. I’m not being politically correct here, I’m being real, with what has changed my life. God, who loves you and never wanted there to be suffering in the world, does not promise us that He will fix everything in our broken world right now, but He does prove to us He cares through the cross He suffered.
The Bible tells us that Jesus hurt as no one has ever hurt before, and no one will ever hurt again. Isaiah 53 prophesies what it would be like for Jesus to take away our sins: “Surely he took up our pain and bore our suffering” (Isaiah 53:4a, NIV).
If friends ask you to help, take them up on it. Real friends will want to help in real ways. Maybe that’s helping you clean the house one night. Maybe that’s giving you a gift certificate to a spa. Maybe that’s bringing over a meal once a month. Letting people help you actually lets them know that you trust them and that they are important to you . . . and it helps them deal with their grief, too.
“I need a break.”
Give yourself permission to take breaks. If you are in a caregiving role, you will be more worn out than you have probably ever been in your life. In addition to the grief, anger, frustration, and terror you feel right now, you are taking care of someone you dearly love in ways you have never had to take care of them before.
If you have friends or family who can give you a break, please let them. We are sometimes afraid we would be selfish to take time away, because we forget that God is the only one who can take care of people 24/7 without burning out or ending up feeling bitterness or hatred towards them. It’s okay to take time away.
Go to a quiet sanctuary or a crowded restaurant or run a few errands–you need the rest. When you are gone and you have feeling of guilt, pray for the person you love and pray for relief from your guilt.
Blame
You might start feeling anger, hostility, or bitterness towards the person who has Lou Gehrig’s Disease. You’ll feel like a horrible person, but you’ll probably still have a fury inside you that you can’t seem to unwind. Give that grudge to God. Tell Him you’re mad at Him–because He is who you’re really mad at.
God can handle it and that way you won’t be hurting the person who is dying, who needs your love more than ever. Give the anger to God and ask Him to show you how you can ever let go of the grudge you hold against Him. I am convinced, I am sure, that if you seek help from the Helper, you’ll find it.
Healing
Pray for healing. Let God know what you want. Of course you want healing. This is something I was very stupid about. I would pray over and over again, quietly, pleadingly for healing.
I didn’t just tell God, “God, I want you to heal my dad! And why wouldn’t You?????” I regret not doing that, because it would have been honest, and God wants us to come to Him with an honest heart. But I don’t mean I wish I had done that so my father could have been healed.
I do not, absolutely not, absolutely-absolutely-not believe God took my father away from me because of a malfunction in my prayer. 1 John 4:16b tells us, God is love. Is God going to catch us in a prayer malefaction so He can refuse to heal? Absolutely not.
Jesus tells us that God knows what we want before we ask Him. I’m learning to come to peace with the fact that God sometimes wants what I want . . . and sometimes He doesn’t.
I’m learning to come to peace with that because I believe, from the bottom of my heart, that God works through all suffering and catastrophe in the world so that as many people who can may know Him.
It’s a mysterious will, but God is a mysterious God (Romans 11:33). And this same mysterious God used the great mystery of His love to send His Son to die on a cross for us, when we didn’t deserve it (see Colossians 2:2-3).
Therapy?
I will be real honest here. I did not ever find any long-term or sustaining help in therapy. There is something to be said for being able to vent and share with someone. I think there are probably really good therapists who really can help. But the therapist I got was unsympathetic that I had missed my first appointment because my father had died. Not helpful.
So my story is (I hope) an anomaly. But I would say this: please go to a therapist of a trusted friend who has truly gone to that therapist. Going on the recommendations of people you hardly know or just setting up an appointment . . really isn’t sublime in my book.
If you don’t have any friends who can give you advice, I would recommend visiting therapists without committing right away. Visiting a few will probably help you match your personality to theirs. The trouble is, that’s expensive.
Still, I wish the therapist I had would have thought I was “just visiting”. He might have been nicer and I wouldn’t have felt so upset when I knew he wasn’t going to be able to help me.
I did get help from talking to pastors. There were two pastors in my area I saw, one who was a full-time counselor and the other who was a full-time pastor who counseled in “spare hours”. They were both free.
My thinking on free counseling is that someone is for sure not trying to take your money. Free counselors aren’t necessarily qualified, though. What I learned the hard way: go with counselors who people you know and trust have truly gone to and received help from.
Little good times
You may get so busy with worry, fear, and caregiving that you forget to look for the little good times. Love the little good times. One of my big regrets is that I usually didn’t. I got so caught up in despair that I forgot I was in the last moments I would ever have with my father on earth. Maybe that’s denial, too.
What I know is that I lost sweet times because I would go off to “cope” by playing video games or staring at my computer screen or watching TV. This was not coping, but it did steal little good times from my life that I can never get back.
Love
You can become bitter and spiral down, down, down. Your mind, body, strength, and soul may be attacked by whirlwinds of anger and strangled by grips of grudges. Now, no one I know wants to become this. No one wants to be someone chained down and caged in by anger and bitterness. But anger and bitterness rarely starts out as giant monsters. If they did, people would be afraid and run away.
Instead, they start out as friends. They offer to walk with us while we’re feeling so bad, talk with us, give us advice. In essence, they offer to be our god. As time goes by, they demand more and more of our time, until they consume us and command us to do and say things we would never do and say otherwise. They take over.
They scare us into submission because we’re afraid that, if we let them go, we will hurt so bad we won’t be able to stand it. The truth is, letting go of anger and bitterness can hurt. They are old friends, and parting ways will never be peaceful. They will pursue every avenue they can to get back into your life.
Letting go of anger and bitterness is scary, because we’re afraid to face our grief alone. With anger and bitterness at our side, we feel at least we have some companion to go through this with us. But, without them, we don’t know what we’ll face.
I had a friend tell me one time that, on an emotions’ scale, anger is a “better feeling” than despair or depression, and that is so true. We don’t want to let go of anger and bitterness because we’ll fall further down the emotional scale.
One of the most extraordinary characteristics of Christ was that He was willing to fall. Rather than grasp for anger or grudges or bitterness along the way, in His suffering on the cross, He held Himself back from holding onto even any rights He had as God, except for the right to be our perfect sacrifice (see Philippians 2:6-11).
When I think about how Jesus has gone into the darkest depth for me, I am not as afraid to explore grief without anger and bitterness. But this is something I didn’t learn for many years after my father had died. And what I found was that anger and bitterness won’t settle for being anything less than your best friends. They take over, and they chase away friends you wish you had instead, like hope and joy.
So in dealing with any long-term illness, the best advice I can give, the most important thing I learned, is that you are either drawn to the very heart of God to press your head against His chest and listen to His heartbeat . . . or like me, you are driven to go further and further away from His love into the cold, bitter, desolate territories of the human heart.
But one last thought. If you do go down that path, there is still a way back: God’s love. I was way, way out on a desolate glacier where there’s nearly always a blizzard . . when I heard God’s heartbeat . . for the very first time.
He’d found me.
Crumpled . . Free
I’ve heard stories and legends of people folding pieces of paper and turning them into alive and wonderful creatures. Origami is kinda that way. What looks like a paper hopelessly creased and bent becomes a breathtaking marvel of art.
I believe God is able to take our lives, as crumpled as they may be by the sin and suffering of this world, and turn us into masterpieces only He could design.
As much as Satan wants us to live our lives groveling to him for anger and bitterness so we can get a “fix” for our grief, he has no control (or ability to understand) how God can (or would) take crumpled lives and metamorphosize them into lives of purpose, beauty, and freedom.
My father will have been gone for 8 years this September. Watching him deteriorate with Lou Gehrig’s Disease was one of the hardest journeys I’ve been on in my life. It wasn’t one I handled well. Truth be told, I bitterly, bitterly failed. I hope that those who have friends or family with Lou Gehrig’s Disease will be able to avoid mistakes I have made, and maybe find hope and direction as they cope with this desperately hard news.
With all the failures of who I was during my father’s illness, I should rightfully live the rest of my life in mourning. But I don’t, not usually, because I have heard the heartbeat of God. He can unfold even the most ugly paper wads and fold them into creatures totally set free from sin.
And even the illness and caregiving experiences of Lou Gehrig’s Disease can be refolded into something more beautiful than anyone but God can imagine.
“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” (1 Corinthians 2:9, NLT)
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