Chronic illness has taught me what parenting means:
Point One: You can’t do it all. We know on the inside that we can’t do it all and stay sane. But the outside world and all its pressures are tremendous. Trust me—my oldest is finishing up her senior year of high school and all I can think of is those huge lists of MUSTS to get into her schools of choice. Clubs, groups, classes, AP classes, teams, volunteer work, studying, learning, growing. I’m so glad I’m not a kid anymore, because those MUST lists are exhausting. Could you do all the things on those lists? The message is that if we don’t make sure they’ve got all those musts, we’ve let them down.
Is it possible to prepare your child for every contingency?[tweetthis hidden_hashtags=”#parenting #chronicillness”]Is it possible to prepare your child for every contingency?[/tweetthis]
We can only do our best. Did you tell them how to have a relationship with Jesus? Can they think for themselves and cook well enough not to starve? Do they know how to wash their clothes? Personal hygiene in good shape? We give them the tools, but it’s their responsibility to put it all in practice. Because I can’t hold their hands through it all, I’ve had to learn to let them go and trust that God’s got this. They are their own people with their own successes, heartbreaks, failures, and joys.
Point two: My child is not my accomplishment. My child is not my trophy. They are not my pride and joy—or they shouldn’t be.
Their failures and successes are not mine. They are people trusted to me, loaned to me for a time. Will I always be there for them? As long as I can. Am I always the best person to be there for them? Maybe not. But I can trust God will bring the right person along to fill in the gap. He promises never to leave us nor forsake us—or our kids.
As God has His hand on my life, He also has His hand equally on my children’s lives. Not just when they are ill or injured and we’re praying for their protection, but all the time. All the time. Isn’t that mind-blowing? He doesn’t just take over when they turn 18 and we’ve done all we can to prepare them. He’s got them covered even now. He’s shaping them into the people He knows they can be—way better than we could ever hope to.
They are His pride and His joy. As you are.
Chronic illness has taught me that parenting is not about me, it’s about them. Chronic illness has taught me that my limitations are not my children’s limitations. [tweetthis hidden_hashtags=”#chronicillness”]Chronic illness teaches me that my limitations are not my children’s limitations.[/tweetthis]In fact, my limitations might be building something inside my children in the way of empathy and compassion that I could have never taught them on my own. Most of all, chronic illness has taught me that I am not the one they need to turn to and lean on for the rest of their lives. The Father is. And as much as I love them, He loves them more.
Deuteronomy 31:6 Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. (in full here)
[tweetthis hidden_hashtags=”#parenting #chronicillness”]God will never leave you nor forsake you–or your children[/tweetthis]
Chronic illness taught me what marriage means: sacrifice.
I’ve always loved romance. Even as a kid, the episodes of television I connected to the most had romantic elements. One of the first I can remember was an episode of the Incredible Hulk, where David’s wife passes away…sniffle. Remember when he carried her through the hurricane after a car accident, desperately trying to save her? Oh. My. Heart. I was nine and devastated. However, the episode made an impact on my mind that stuck with me: Love came with risk and sacrifice. It still does.
Thirty years ago, my goal for a marriage partner was someone who shared my faith, someone who would want to be married forever, who I could be around without make-up on and still feel comfortable, and (this was the biggie) someone whose underwear I would be willing to wash by hand. That last one? Yeah. No idea where that came from…but 25 years in, I think it’s a good check-off point. Although I have yet to do that, you never know where life might take you.
Or how soon it will take you there.
I didn’t plan to be disabled by chronic illness. No one does. But, to be frank, statistics say 50% of people are temporarily or permanently affected by a chronic condition in their life—so when you draw the line, either you or your spouse is at risk.
Marriage comes about via romance and love, but romance is just part of the roller coaster ride. Marriage, once you’re on board, becomes primarily about sacrifice and your willingness to lay down self—or not. When one of you is ill, the other ends up sacrificing their ideas, their personal goals, their dreams. And the one who is ill must do the same for the other. Being ill all the time can shift the focus to the illness’s needs. This is natural for a time until you find your new normal, but then it must stop. Because if it doesn’t, your marriage will become lopsided and your partner’s needs will be of secondary importance. Before you realize it, your marriage will be in trouble.
God created Biblical marriage to be the combining of two into one. Illness and other circumstances can claw away at you, trying to separate the whole into two distracted, broken individuals. But you can’t let it. No matter how tired or sick you are, it’s possible to think of that other person before yourself. When you do that, it gets the focus off the illness and back on your relationship.
My husband and I have been married for close to 25 years. In our relationship we’ve been in a boating accident, been hit by a semi, survived college, survived poverty, had surgery, and more surgery, had sick kids, lost loved ones, and shared eight address across four states. We’ve faced a lot of trials in our lives, but none more debilitating than chronic illness. And yet, we are stronger together now than we were before. Not to say we haven’t had rough moments or times we wished the burdens of illness could be completely removed from our lives. But when you face the hard trials and keep your eyes on the Lord, putting your dependence on Him rather than each other, you come out battered, bruised, but stronger than you were.
Chronic illness taught me that marriage is more about us than about me. It’s about giving up selfish desires and teaming together in daily battles. It’s about long conversations whenever and wherever we can grab them. It’s sharing our joys, laying down selfish desires, building each other up, having each other’s backs, and staying focused on the Lord and His plans for us. Because, even when life seems to be about illness, you have to do your best to still make it about the two of you. You have to be on the same side of the battle. It’s you both against the illness. It’s about our commitment to one another and God more than our commitment to our own happiness. It’s about giving the other grace and showing mercy.
It is sacrificial love for one another.
John 15:12,13 (Jesus said) This is my commandment, that you love one another as I have loved you.Greater love has no one than this, that someone lay down his life for his friends.
If you’re like me, the American dream was drilled into your head through television. That dream is slightly askew these days, but I think it’s still holding fast in our psyches. It goes something like this: I’m going to marry the person of my dreams. We’re going to live happily ever after (whatever happily means by your definition). We will be married forever and die at a ripe old age, painlessly, holding hands in our sleep. Marriage is all about love and romance and passion and having my needs met. Right?
It doesn’t include driving your spouse to the hospital at 2 AM because he can’t breathe, and then sleeping in the hospital parking lot in the car with your baby because you can’t trust yourself to drive home. It doesn’t include holding your spouse’s head while he or she vomits, or wiping up the floor because they’ve missed the toilet. It doesn’t include watching your spouse fade from the person they were because of chronic illness a good forty years ahead of schedule due to a genetic disease. It doesn’t include going into debt to pay for medications and specialists. Or watching them spend thirty plus hours of each week curled in a chair because their life-saving medication makes them feel awful. Or surgery. Or accidents. Or any of those uncomfortable things that reminds us this life can be one trial after another.
But it should. I feel like petitioning every premarital counselor out there and asking them to change their quizzes. What will you do if you can’t take that trip you’ve always wanted to take? What will you do when your spouse becomes disabled (we all seem to at one point or another), or if your spouse gets cancer and loses a body part or goes bald? If they lose their minds to disease? What will you do if your loved one is suffering? When you need to bathe them or change them? Will you leave because you can’t bear to watch them suffer? Or because your needs aren’t being met and they’ve become a burden (whatever burden means by your definition)? I sure hope not.
This blog post honors those who stay.
The world says self, but God’s Word says sacrifice. God created marriage as a sacrificial covenant. It’s not just a safe place to have kids. It’s not just an expensive party where your friends and family come wish you well and and give you awesome presents (we got 12 clocks…is there a hidden meaning in that?). Or about tax write-offs (and thanks to the government, that’s about to end anyway!). Contrary to popular belief, it’s about loving that other person sacrificially. It’s about putting them and their needs before yours. It’s not about you, it’s about them.
So. If you have stayed when it was messy, painful, heartbreaking, perspective shifting, expensive, inconvenient, dream-killing, hard, sleepless, tiresome: thank you. You mean the world to your spouse who feels like a burden, who wishes they were different or circumstances were different. You are showing them and the world what it means to die to self. You are reflecting the sacrificial love of God to your spouse, your kids, your friends–even strangers. And in that, the sacrifice Jesus made for us all.
I could let the stresses of life eat me alive–but I don’t anymore. I’ve had to learn to let it go. Everything comes to a halt when I’m ill. Or when I’m editing. I’ve had weeks of both, which eventually came to an end. Huzzah! During this time, I implemented the “don’t put their clean clothes away until they’ve discovered all the clothes that don’t fit” clause. Well, really, that’s just a fancy name for “if you want clean clothes, they’re probably piled on the floor in our bedroom.”
I used to like methods and schedules. I’ve discovered with chronic illness, the schedule looks more like this: I’ll try that if I have the energy and if I’m not sick. I’ve had to become okay with that. Instead of numbered lists, I do an amalgam with check-off boxes. I’ll even add things to the list if that thing interrupted my day. Like yesterday, my daughter called me to the kitchen.
“The fridge doesn’t sound right.”
Indeed. “Whirrr……whirr….sputter…whirr…” Then, nothing. Rut-roh. As we pushed the fridge away from the wall (yes, I unplugged it! We don’t want another “Mom electrocuted herself on the dryer” event do we? … That’s a story for another time…) I thought to myself: Didn’t I just vacuum this thing out? Taking off the panel proved me all sorts of wrong. I’d never seen so much fluff and dust in one spot.
I grabbed a face mask (I’m reporting this mostly to my mother who is reading along with you and would be sure to warn me of the dangers of dust—my #1 allergy) and started cleaning it out. An interrupted hour later, plugged it back in and TADAH! Worked. I immediately wanted to put “Vacuumed under fridge” on my list and check that off. But I was too tired. So I did it mentally.
My son loves his schedule. But when Mom is down with an illness, or editing, or cleaning the fridge, he’s got to adjust, just like the rest of us. It’s harder for him because of his personality. I can only hope this is training him for life, learning to roll with it, learning to stay fluid. Learning to let go.
Letting go is the theme for my life these past several years. Letting go of plans and responsibilities was tough. Letting go of preconceived ideas was harder—letting go of that picture of what life was supposed to be about. However, I think there’s freedom in that. At least I’ve found it to be so. Now my lists are more focused on relying on God for what I can get done, for where He’d like me to focus my limited energies. Some days, I erase far fewer things off that list than I’d hoped to accomplish (most days, frankly), but that’s okay. I might not be moving fast, but I’m moving forward!
Everyone has seasons in their lives of joy and hardship. Sometimes the hard ones feel like they go on forever, though. We’ve gone through many years of health hardships. They don’t seem to stop, but continue to ramp. You can take a break from activities, you can take a vacation from your job—but you can’t get away from your health.
Imagine with me a staircase.
The stairs take you up. The first few get your blood pumping, the next set start taking a bit more effort and you breathe harder. You keep on going, looking toward the end, but now your breath comes in gasps and pants. You have to stop and grip the rail, but there’s no place to sit down. Sweat trickles down your back, so you take off your coat, and keep climbing, because there’s no going back—there’s just up. If you have a disability, you might be pulling yourself along by that rail, one shaky foot, one sweaty palm, at a time.
On a real staircase, there are landings. If you’re climbing at a park, there might even be a well-placed bench for you to take a breather, a respite, a time of recovery—a drink of cool water. It might be pokey, and uneven, but it’s a bench, and you’re grateful for it. After you catch your breath, you continue on, and then the path, or the stairwell, turns a corner. You’re still tired, but not as tired as you were. You had a break. The best thing is, you know soon there will be another landing, another place to take a break—or you’ll have reached the top.
But, what if there are no landings?
What if those stairs just keep climbing? You crane your neck, squint your eyes and all you see are more and more stairs. That’s where we’re at. These past few weeks, I’ve been praying for a landing.
Maybe you’re with me on those stairs, climbing relentlessly, praying for a break. Maybe it will help you to know you’re not alone. I’m here, too. We can hold each other’s hands as we go, pull each other up over that next step, urge each other along. Pray for one another. Jesus is there with us, He’s got your hand and mine.
Let me know if I can pray for you. You can message me privately on this page, or leave a comment below. Either way, I’ll see you on the stairs.
Psalm 73: 23-26 Yet I am always with you; you hold me by my right hand.You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (full passage here)
John 10:25-30 Jesus answered, “I did tell you, but you do not believe. The works I do in my Father’s name testify about me, but you do not believe because you are not my sheep. My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one will snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand. I and the Father are one.” (full passage here)
Philippians 4: 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (full passage here)
Hi. You probably thought I forgot all about you. I know it’s been ages. I’m sorry. Let’s recap:
My novel launch went spectacular. Huge THANKS to Alexa Mason from Portland Rescue Mission and Sally Faddis from Door to Grace for coming and speaking about their ministry outreach programs for hurting women and children. It’s incredible what those two groups are doing to get women and children off the streets and love them for Christ.
We had a great turnout, ate lots of cookies, drank some wonderful coffee and tea and were safe and cozy away from the storm raging outside. I mean, what could be better than a good book and yummy treats? I know! If you were able to attend, thanks so much for being there sharing in a huge pinnacle moment for me. You made it extra special.
Well, then came the crash. My physical crash. It took a full week to really recover from the excitement and tension of the event–thanks chronic illness! And then the family got head colds. Now I have a head cold. You see the pattern? So, really, I didn’t forget you, I’ve just been bogged down.
Now you’re thinking, but what about the contest? Who won? Without further delay:
CONGRATULATIONS to Jessica G. for winning the autographed copy of Jasmine! WHOOP. (I actually let her know via FB right after the contest ended–but I feel it’s important to make a public announcement!). Thanks to everyone who shared about my novel launch and the paperback release. I couldn’t have done that without you! You were great!
Amazing and humbling reviews are coming in for Jasmine. If you’ll permit, I’m going to share a few here, and then I’ll let you go. Thanks again for all the support and love. You really are the best!
What readers are saying about Jasmine:
“Jasmine is an incredibly well-written tale – one of those stories that makes me feel as though I truly know the characters.”
“Authentic.”
“Couldn’t put it down.”
“A beautiful story of rescue and redemption.”
“Jasmine is a deep, poignant story which provides hope and help for any who’ve suffered from abuse.”
“Jasmine was a raw look at the life of a survivor.”
“A captivating read with passages that melt your heart with the pain of Jasmine’s past and the struggle to find normalcy when her life has suffered from the deviant behavior of others.”
Have you read Jasmine? I’d really appreciate a review at your favorite online retailer or Goodreads. Thanks for reading, thanks for sharing, and thanks for all your encouragement!
Chronic illness has taught me what parenting means:
