Learning to Be Proud of Who Your Child Is Becoming

...Instead of Feeling Ashamed of the Parent Your Illness Forces You to Be

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"You know people love you in your life,

but you don't know how much until you get sick."

Hoda Kotb, Today Show Host & Cancer Survivor

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READER SUBMISSIONS REQUESTED

HELP me write a new MWCI article: “Learning to Be Proud of Who Your Child Is Becoming Instead of Feeling Ashamed of the Parent Your Illness Forces You to Be.”

Please share examples of your child being a sweet, loving caregiver to you or another person or child who needs love in the COMMENTS BELOW or EMAIL THEM to MWCI at momwithchronicillness.org@gmail.com. There is no limit to how many examples you can share. I will then write the article using your examples as undeniable evidence that growing up with a chronically ill or in pain Mom is not detrimental to a child’s development, but is in fact quite the opposite. (Of course, I am not claiming that children who are not exposed to daily illness and pain can’t still be just as loving and caring as anyone).

This is your chance to gush about who your babies are becoming because of your illness, not in spite of it, and to help other mothers be PROUD of the *positive effects* parenting with a chronic or severe illness and pain can have on our children instead of just feeling ashamed of the parents our illnesses and pain force us to be.

Please indicate whether you want your first name and diagnosis used or if you prefer “Anonymous.” If no indication is given, “Anonymous” will automatically be used. ***No last names, email address or screen names will be shared on the site or with anyone: all your info will remain 100% PRIVATE!*** No child’s name or picture will be shared on the MWCI website regardless of indications to do otherwise. I’ll leave one of my examples below.

"The first time I saw it in my little girl was when she was about 2 years old. She asked if we could play outside, and I told her that she could go out and play in the yard, but that I was sorry, I would have to watch her from inside because because my tummy hurt. She ran to the bathroom and came back with a band-aid. She opened it, took the band-aid out, lifted my shirt, and very carefully put the band-aid on my tummy just right. 

Then she looked at me with a big smile and asked, "Can we go outside now?" I couldn't say no. With tears in my eyes and a big smile on my own face, I put on an adult diaper, took some extra meds (ssh...) and we went outside to play for a while. That was the moment I knew I was raising a caring, loving, thoughtful, kind, proactive and smart child who would grow up to be a caring, loving, thoughtful, kind, proactive and smart adult."
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Submitted by Megan, Ulcerative Colitis

No One Will Take Your Joy From You

...the blessed Words of Jesus recorded in John 16:22

"Truly, truly, I say to you, you will WEEP & LaMenT, but the world will rejoice. YOU WILL BE SORROWFUL, but your SORROW WILL TURN INTO JOY. When a woman is giving birth, she has SORROW because her hour has come. BUT when she has DELIVERED the BABY, she NO LONGER REMEMBERS the ANGUISH, for JOY that a HUMAN BEING HAS BEEN BORN into the world. SO also you HAVE SORROW NOW, but I will see you again and your hearts will REJOICE, & NO ONE will take your JOY from you."

(John 16:20-22)

Joy? When is the last time you felt truly joyful? Think about it. The births of our babies was supposed to be joyful. Isn't that what we all expect? But the birth of my daughter wasn't joyful. In fact, it was the worst experience of my life to date, bar none, because of all the things that went wrong and were allowed to go wrong. (Click on "My Mom With a Chronic Illness Story" to read about what happened to me that day).

Think about the Moms whose babies are stillborn: every parents' absolute worst nightmare. Think about the Moms whose babies are born far too soon and have to struggle to survive, or the mothers of the babies who are born with something wrong with them, something serious: a deformity or disease, something the doctors can't fix. Think about the mothers suffering from Postpartum Depression (PPD), the Moms who want to love their babies so badly, who feel incredibly guilty that they just can't feel that emotion, that bond...

Nature wracked by sin has stolen joy from myself and millions of suffering mothers.

Sin takes our joy from us in a myriad of ways. Satan plays games with our souls and delights in leaving us wanting more, wanting something different, he tells us that we deserve something "better" than our lot because...

"What God gave you isn't good enough,"

the serpent whispers.

When our baby is sick, really really sick, we can't think about anything else because worry and dread have filled every inch of our being. When we're missing a loved one, we find it so hard to love anyone else. When our bones and joints are aching, when our stomachs are churning, when our heads or backs are throbbing, when the chemo is in full swing... it’s difficult to concentrate on anything but our unending pain. 

• When we can't pay our bills...
• When our doctor says, "It's cancer..."
• When we lose the best friend we've ever had...
• When Mom and Dad kick us out of the family...
• When homelessness looms just around the corner...
• When our medical insurance is 1 payment termination...
• When we have to decide between supper or medication...
• When we turn on the news & hear hatred, sin, & violence...

Where is the joy?

Our bodies are killing us day by day, wasting away before our eyes, our hearts are breaking in ways we never dreamed possible, and the sin of the world is getting worse as we as a society condone it more and call it nice, good things like "rights" and "freedom" and "natural." We even imprison those who stand against it: those who dare to believe in a real God and a real heaven and a real hell and take it seriously. Maybe even you & me, maybe our children, our grandchildren. Fear, illness, and anger push joy from our hearts until we wonder when the last time we smiled (and meant it) was. 

So, we go to church like Mom taught us to do, like the good Christians we want to be, like the good Christians we want our kids to be. We know where to find strength and joy. But then the hissing starts: “Sit still,” “Stop it,” “Ssh,” “Eyes front,” “Pastor's talking,” “Stay here," "You just went potty...” and you think everyone is giving you dirty looks. That's not “joyful” or “strengthening.” That's what I would call “draining,” physically & emotionally, which is why so many of us never come back.

Church with children is hard work, 

and so is life with chronic illness,

and I NEED A BREAK.

If in the midst of such gloomy depths, we look forward to heaven, we do well. We know God’s promise to "wipe away every tear from our eyes," to invite us to a place where "pain is no more." We know that heavenly Paradise awaits us with joy never ending, with peace, rest, and health, but we ache so badly in the here and now, we scarcely can see it anymore.

Where is God now while you and I suffer? Where is He while the bank takes our houses away? While you and I fight for breath, for strength to get out of bed, try our damnedest to love our babies, stand over our husband’s or wife’s grave, the graves of our parents, our children? Where is that promise, God??

Where is that salvation now??

There is a reason why the main portion of a church is called the "Sanctuary." There, if only for a little while, you will find peace in God's WORD, SACRAMENTS, and FELLOWSHIP with His people. Even if teaching your children to sit still for an hour after working a 60hr-week, or while battling that same illness no one can cure, or while walking around with that same tortuous pain, or while trying to mask a deep, dark depression... seems so bitterly unfair, your kids need the same church you do because Satan is targeting them, too. I know. I go through the same church you do with the same rambunctious toddler and the same chronic illness and pain, and I know it's a fight. 

But it's a GOOD FIGHT: it's my BEST FIGHT,

and I refuse to let Satan win it.

When I was growing up, my church of origin had a “Cry Room” where most churches today have a “Playroom” because we didn't get taken out of church to have fun. The little babies got taken out to cry or to be nursed, of course, but we bigger kids who knew enough to sit still with our eyes on the pastor, if we got taken out of church, we got spanked. **(Please note that I am neither advocating nor opposing spanking children as an acceptable form of discipline here. I am simply telling you why no kid I grew up with ever wanted to leave in the middle of church, that's all).

In church, you, your husband or wife, and your children are all invited to join God's glorious angels and your loved ones who've gone before you in singing to and praising God with hope that does not disappoint (from Romans 5:5). And even when we cannot make it out the doors and to that building filled with bells and stained glass and organ music to worship with our friends, our brothers and sisters in Christ, as we would like, God still wipes away our tears with His Word as we read it on our own in our home with or family and study it together.

"For where two or three are gathered in My Name,

there am I among them."

(Matthew 18:20) 

He hears our prayers to Him, He invites us to lament and complain to Him, to demand answers from Him, to demand to be healed… But He is God and we are not and while He hears our prayers, He is not some vending machine where you can insert enough prayers and choose the answer you like the best. BUT with His everlasting promise of forgiveness for our doubt and anger, and for our continued obsession with all things worldly despite being told again and again those things don't matter, He is MERCIFUL and HIS love for you does not change (Luke 12:22-31).

So, we go to church for an hour. Maybe we manage to stay another hour for donuts, coffee, and Bible Study, but eventually we have to leave that fleeting piece of heaven on earth, close that Bible, end our prayer, walk out those church doors and face the world that hates us in these bodies we’d rather shuffle off, without even half the energy necessary to "Mom," BUT hopefully with a new view of what our days lived in the here and now mean, even the ones spent sick in bed or arguing with our kids.

We do not suffer only to learn lessons, to become more humble, or to appreciate heaven and God more. We suffer also for the sake of Christ who suffered for the sake of us. Our suffering is just small a taste of His because at the height of His suffering, His Father turned away from Him because Jesus, though sinless, became the most despised of sinners for you because...

YOU were worth it.

Your children are worth it, too, so don't seek those heavenly gifts without them just because it's easier to put them in the nursery than it is to teach them how to listen to a sermon: these gifts are FOR THEM, no matter how small, no matter if they don't "get it" yet. They will. So go together and get those gifts of temporary moments of sanctuary from the world, where death is no more, neither mourning, nor crying, nor pain anymore, where the former things pass away for a little while and take that strength with you ALL to get you by in the meantime as you endure "a little while" longer before your sorrow turns permanently to joy.

Suggested verse to repeat if the joy has gone from your heart

is from John 16:22

"Your hearts will rejoice & no one will take your joy from you."
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Please click here to find a church hear you.
And please, don't leave your kids out, and
don't let your illness, pain, or any burden Satan heaps onto your shoulders keep you from God's gift of Sanctuary.
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Here's "Joy" by Page CXVI

Mom + Kid Activities To Do While on Bed Rest

Josie and Mama
One of Mama's Many Sick Days

I've been forced to spend as many daytime hours in bed this past month as up and around while waiting for my insurance company to approve my final "Hail Mary" treatment, and I got to wondering: is it possible to make bed rest a fun time for our kids without reneging on our doctor's orders to actually rest in bed? Sure! And you might just create some good memories along the way as you calmly and quietly play in that bed instead of the backyard for a while. So, here are some ideas of things to do with your kids when you can't--or aren't supposed to--get out of bed, depending on the age and interests of your own little ones while you're lying down.

Do NOT try to fill your day with activities! You know your physical limitations, no one else. Be honest with yourself and don't be a martyr, because once we've hit the bed-rest level of our illness, the next step is usually the hospital, and no one wants that because in the hospital, playing in bed lasts only a few minutes (but its "up" and "down" buttons really are fantastic fun).

Play Hospital: You get to be the patient! Don't worry too much: some dolls and stuffed animals can take some of the medicine, too, to make for a full ward. If your daughter has as much experience visiting Mom in the hospital and watching doctors and nurses take care of her as mine has, well you are in for a treat. Put together a "Doctor Bag" complete with juice-medicine if you don't have a play one and let their imaginations and natural care-taking abilities loose. Some treatments may be slightly painful, but that's nothing new to us :)

Color & Draw: Clipboards or breakfast trays come in handy when crafting in bed. But if you don't have one, try an old bookshelf that's no longer connected to the other shelves, or an old cardboard box for a table. Crayons and colored pencils are better for your bedspread, but you can always scatter old towels around if markers are a must. Coloring books are optional; you might want to keep a secret stash of them tucked away for days like this or for your own kids' sick days. I prefer freestyle myself. I like to ask my 2 1/2 year old to draw what she'd like to dream about, or what she'd like Mom to dream about, at naptime if naptime is coming up.

Read &Write: Enough said. Cuddle up and read new stories and your old stories and all the favorites. Once you and your kiddos are full of inspiration, encourage them to write and illustrate some stories of their own. This can turn into enormous educational fun as well as great keepsakes and gifts.

Catch Up On "Thank You," "Get Well," & Other Cards or Letters: Ask your kids to help you make your own cards or let them help you write and sign the ready-made kind. Either way, this is sure to be a useful craft that will take up time, help kids with their spelling, grammar, penmanship and alphabet, as well as teach them gratitude, sympathy, and the importance of reaching out to those you love to let them know that when they're hurting or celebrating, you're hurting or celebrating, too.

Watch Cartoons & Movies (with popcorn!): A movie in the middle of the afternoon with popcorn in bed?? What could possibly be better than that?!? Yep, it'll get messy, or salty and crumby in the sheets is more like it, but that's why God invented dustbusters or a change of bedding. Remember those really old greats like Donald Duck and Bugs Bunny? These terrific, albeit violent and gun-heavy, cartoons of old might be too brutal for your little ones, only you can decide that, but for my family, they are awesome sources of good humor and a connection from our parents' era to ours to our kids'. You can find a lot of the old classic Looney Tunes and Disney cartoons on YouTube channels like Bygone Tunes and the Cartoon Channel,

Board Games & Puzzles: They aren't just for rainy days. We like just about any puzzle and as far as board games go, our faves include "Operation," "Curious George Matching Game," "The Sneaky, Snacky Squirrel Game," "Alphabet Go Fish," and "Jenga" that isn't exactly played by the rules. Or any rules at all. Do you have any suggestions for good sick-day family board games? Please leave them in the comments.

Bed-Picnic or Tea Party: Great for lunch and snack times, or just for pretend food if food isn't all that appetizing.

Listen to Music: I mean really listen to it. What better time to discover a new favorite song? Don't limit this time to kid's music only. This is a great time to close our eyes and listen to the greatest of the greats: Bach, Mozart, Beethoven, Chopin, Vivaldi... (see "The Best of Classical Music" video on YouTube to start), or try some contemporary greats like Eric Whitacre, Pentatonix, or Disney's original Fantasia (now on Netflix Insta-watch along with the 2000 version) or other Disney greats like this Love Medley. You might want to team this up with drawing and see what wonderful works of art make their way through.

Make Beaded Necklaces and Other Jewelry: This is pretty self-explanatory. For younger kids, your can use large beads and wide ribbon or even wire (but beware of possible pokes if using wire). 

Cars and/or Trains: Instead of setting up the usual Little People town or train set on the floor, set it up on the bed. See what kind of mountains and valleys you can fashion out of your blankets and pillows.

Old Clothes Showdown: Kids like to see what tiny things they used to fit into. Now might be a good time to go through the too-smalls and pack them away in a box if you've been waiting to do that chore. This might morph into a fashion show for Mom.

Paper or Magnetic Dolls: My daughter adores these new magnetic dolls (well, their new to me), or anything that's easy for her to dress and undress. I don't think there's a boy's version, sorry. Transformers? Those are always fun and can be played in bed, too.

Phone Calls or Video Chat: Find someone who's home during the day to visit with via the webcam or the good old fashioned cell phone and have a short chat, even if you don't look your best. It doesn't hurt to let loved ones see the real you on a bad day now and again.

Stroll Down Memory Lane: Sick days were made for this! Look through photo albums, scrapbooks, and baby books with your kids: they love it no matter how old they are. Tell your kids' stories about birthdays, other special times and good memories, and the people you've loved who've gone on to heaven, and let the kids tell you a few stories, too.

Make a Bird or Mousehouse: With the help of your kiddo(s), wash a milk or juice carton inside and out and glue the top closed. Cut a dowel twice the length of the milk carton, and then cut a hole just large enough for the dowel to fit through on either side of the carton at the same level. Slide the dowel through. You can apply glue where the wood meets the carton, but I've never found this to be a very helpful step myself. Next, cut a door in the carton large enough for the birds or mice to get through. If you're making a birdhouse, poke two holes in the top of the carton; thread a string or piece of yarn through it and tie it (you can skip this step if you're making a mousehouse). Let your kids decorate the house as they see fit and allow it to dry. When the house dries, and when you are feeling better, help the kids fill the feeder with birdseed or fruit and peanut butter and hang it from a tree branch outside for a birdhouse or set it next to a tree or building for a mousehouse.

Josie's Christmas Play Doh Creations

Did I miss a few activities you and your little ones enjoy on bed rest days? What are your favorite bed rest activities to do with your kids? Leave them in the comments or email them to momwithchronicillness@gmail.com. 

When Cancer Comes Back

There are few things in this life as triumphant as finally beating a serious illness, and few things as heartbreaking as having it return. Few things show us our powerlessness with more suffering, few things replace hope with hopelessness more savagely than knowing exactly what is in store for you and those who love you because you've already been there and you've already done that. That sharp disappointment is made sharper still when that illness is as life-altering and as life-threatening as cancer. Cancer steals lives, life, and livelihoods. Going through it once is more than any one person, any couple, and any family should be asked to bear, but as many of you know all too well, for whatever reason sometimes once isn't enough.

We, the sick people of Christendom, are ambassadors in chains and Satan does his best to keep those chains on us as tightly as he possibly can, but we are not without armor even in the throes of this earthly devastation (see Ephesians 6 below). After all, who can proclaim the truth of everlasting life more boldly than us, the outwardly dying and the inwardly surviving (2 Corinthians 4:7-18)? Here is a moving poem submitted to MWCI from a n anonymous husband and father who has been diagnosed with cancer twice, called "When Your Wife is Married to Cancer." **If you have a story, poem, or work of art you would like to share anonymously or otherwise at MWCI about your recurring, chronic, or beaten illness, please email it to momswithchronicillness.org@gmail.com. Enjoy.

When Your Wife is Married to Cancer

by Anonymous

When my doctor told me my cancer came back,

I thought my worst fears had come true, 

but I hadn't seen real fear at all

until I met my wife's eyes, sad and blue.

We had lived in fear of this moment for five years

never daring to speak the name of that curse.

Now suddenly that name is spoken again,

nothing on this blighted earth could sound worse

than my life and my family's summed up

in that six-letter dirty word:

a prognosis, a sentence, our repeated reality,

an order to stop moving forward.

"Will he die this time?"

Their blue sadness begged me.
“Will the cancer be the cause?
Or the drugs? We'll just have to wait and see.”

“What will our life be like now?
Will we lose the house?
Will we lose our marriage, our faith,
now that I am cancer's spouse?”

“And where was God when I begged Him
not to let this happen again?
We've suffered our share and then some by now,
Can't He just leave us alone until heaven?”

The last five years haven't been easy.
You'd think they would be, but it's a lie.
We spent each day in fear of this moment,
wondering when I might die.

We both changed so much
when I was sick before:
our lives, our bodies, our tempers, ourselves,

lost jobs, lost joy and more.

I couldn't fix any of it, though,
no way to make God give answers.
And that's what hurts the most
when your wife is married to cancer.

I am no longer a husband,
now I am a patient and that is all,
patiently waiting to see
if the doctor or God will call.

That is all that I can be,
now that cancer has come back.
As I read my greatest fears reflected,
I almost wish it had been one quick heart attack.

But I turn away from our unspoken fear

and shake my doctor's hand.

I smile the best that I can

and ask him to tell us his plan.

After all, we beat cancer once before

with God's help, big and small.

So why not beat it back again,

and maybe banish it once and for all?

"STAND therefore, having fastened on the belt of TRUTH,

and having put on the breastplate of RIGHTEOUSNESS,

and, as shoes for your feet, having put on the readiness given by
the gospel of PEACE. 

In all circumstances take up the shield of FAITH,

with which you can extinguish all the flaming darts of the evil one;

and take the helmet of SALVATION,

and the sword of the SPIRIT, which is the WORD of GOD,

PRAYING at all times in the Spirit, with all prayer & supplication.

To that end KEEP ALERT with all perseverance, 

making supplication for all the saints, and also for me,

that words may be given to me in opening my mouth boldly to

PROCLAIM THE MYSTERY OF THE GOSPEL,

for which I AM AN AMBASSADOR IN CHAINS,

that I may declare it BOLDLY, as I ought to speak."

(Ephesians 6:14-20)

When Good Enough Doesn't Seem Like Enough

Mother and Child
by Gustav Klimt

ONE QUESTION: "I'm having a sick day and told my 2yro a few times that I'm feeling sick and needed to lay down. Now she's downstairs with her dad telling him, "I sick. I sick," and laying down and wanting him to read her books. I know she's just playing, but I can't help but wonder: am I teaching my kid bad habits? Am I teaching her to... be lazy? ( Not that sick people are lazy of course, forgive the blunt honesty, but she does lay down whenever I have to, and the fact is, she doesn't have to. Am I teaching her to be active enough? ) " ~ Megan 

ONE ANSWER: "Now that my daughter is a little older she understands better that when Mommy doesn't feel well she can go play in the toy room or outside if it's nice. A lot of times she tries to do things to make me feel better, like bring me a drink. I think we are raising our children to be compassionate and understanding of others and their limitations. As your daughter gets older, I'm sure you will see this as well. It is hard when they are younger and need more attention, but you are not teaching her inactivity. Hang in there. It will get better." — Liz

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"I have LEARNED in whatever situation I am to be CONTENT. I know how to be brought LOW, and I know how to abound. In any and EVERY circumstance, I have learned THE SECRET of facing plenty & hunger, abundance & need. I can do ALL THINGS through Him who strengthens me." (Phil. 4:11b-13)

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On Thanksgiving night, I laid down with my two-year-old daughter to try and help her go to sleep. We'd all had a long day and we'd all eaten too much and stayed up too late and we all had tummy aches, so sleep didn't come easily to anyone. When Josie has trouble sleeping or isn't feeling well, she lays on her side facing me and I rub her arm slowly up and down, squeezing it a little as I go, but sometimes the best way to get her to nod off is to pretend I'm already asleep. That's what I was doing when I felt her small, warm hand start to rub my arm up and down, squeezing it a little as she went, pausing to touch my cheek and tuck my hair back behind my ear, exactly what I do for her when I think she's too sleepy to notice. I couldn't help but smile at the tenderness my child had learned from me without my even knowing I was teaching her anything at all (which of course put an end to the whole thing as it caused her to giggle and announce happily, "Mama wake up!")

Our kids absorb us just as we are:

the good & the bad,

the happy & the sad,

the sick & the well,

the kind & the mean,
the sinner & the saint.

Commercial Art
Artist Unknown

And that's okay because they need permission to be human, too, to make mistakes, to feel bad and be honest, to express how they're feeling constructively. How can they learn to show their anger in a healthy way if their mothers never show theirs at all? If their mothers show it in an unhealthy way, well then, they'll learn that, too. Our kids need a warm, safe place to live. They need us to take them to the doctor, give them food, clothes and baths. They need friends, toys and time to play, outside time, reading time, alone time, family time... They need love and security, church and school, sports, concerts, plays, recitals, museums, playgrounds, playgroups and all manner of things in order to grow into their full potential.

Potential: that unmappable, undefinable goal we all must strive

to fulfill even though no one, not even ourselves,

can tell us when we've attained it.

There are days when I can't do enough, especially around the holidays because there is so much to do, but that holiday night it dawned on me that even on those days, I can still BE enough. Maybe I can't be good enough to always fulfill my expectations (or potential, if you will) for who I ought to be as a Mom, but with God's help, I can be GOOD. And because Jesus was better than good, those obligatory Fill - In - the - Blank - Parenting - To-Do's - To - Help - Your - Child - Reach - His - or - Her - Full - Potential that we are forced to leave blank on our bad days are filled in for us and for our kids by Him. I can't take Josie to gymnastics this week? I know a friend who might be able to take her if I pluck up the courage and stomp down my pride long enough to ask for help.

And if my friend isn't available, we're still going to be okay because while I can't teach gymnastics, I can teach a whole bunch of other things without even trying, like how everyone's true "potential" (the kind that doesn't go away as soon we can't work or get out of bed or fail a subject) is already realized in Christ. So maybe we can relax a little bit and not beat ourselves up so much for causing our child to miss that gymnastics class or that story time or an hour at her favorite park because believe it or not, if all you can do is lie down with your daughter and rub her arm until she falls asleep, she notices. She notices your touch and your closeness and your presence, but above all, she notices your love, and all of that goodness becomes a part of her so that she can not only feel it when you're not there, but can show it to others when the time is right.

So remember: when good enough doesn't seem like enough, it's still GOOD. Let that be enough.

Commercial Art
Artist Unknown

"He HUMBLED you & let you hunger & FED you with manna [...] that He might make you KNOW that man does not live by BREAD ALONE, but man lives BY every WORD that comes from the mouth of the LORD.” (from Deuteronomy 8:3)

*For Liz and her wisdom., Which was there when I needed to hear it,

and in fervent prayer that the good Lord would always speak through our friends
when everyone else remains silent.