I Am Sorrow Incarnate

for Katie.

Some days I look into the mirror

and I can no longer see who I once was

nor can I see who I am meant to become

I cannot be a mother again

I can barely be the one that I am

I am barely a woman at all

I am the shell of a person

someone once nice and even pretty

someone energetic and ready to help

now I am helpless,

ugly and needy, lain about

sick, my home in every way in disrepair

I am sorrow incarnate,

the person people pray not to become

a waste of a sound mind in a broken body

stuck on a cross not of her own making

stuck with a heart not of her own breaking

nature’s own sacrificial lamb

but it is only in this way that I can begin to need

begin to beg, to hold on to, to want

the Sacrificial Lamb of God

I am sorrow incarnate

He is the Incarnation of the very Breath of God

and He has made me His own

what luck have I to be so sorrowful

that I might know the need

I have for Him, both body and soul

I am sorrow incarnate.

I am free, bought with a very dear price

happy to rest in the arms of Christ.

Some days I look into the mirror

and I can no longer see who I once was

nor can I see who I am meant to become

and yet knowing

is so much more than seeing.

Thank God that I am sorrow incarnate.

*

"See what kind of LOVE the Father has given to us,

that we should be called children of God; and so WE ARE.

The reason why the world does not know us is that it did not know Him.

>>> Beloved, we are God's children NOW <<<

and what we will be has not yet appeared;

but we know that when He appears we shall be like Him, 

because we shall see Him as He is.

And everyone who thus hopes in Him purifies himself as He is pure."

(1 John 3:1-3)

*

"And when the fight is fierce, the warfare long,

Steals on the ear the distant triumph song,

And hearts are brave again, and arms are strong.

Alleluia! Alleluia!"

"For All the Saints" by William H. How

v.5

*

The Shame of It All

*SHAME* This morning while I was sitting in my car waiting to pick my daughter up from preschool, my illness (Ulcerative Colitis) in all its horrible glory forced me to have an accident. I don't think I have to explain what kind of accident. Suffice it to say it was the worst kind. There was nothing I could do. You can't just run into a school nowadays and find a bathroom. You have to go to the office and sign in as a visitor and get a pass and... I never would have made it to the door.

*MORTIFICATION* I wanted to crawl into a hole and die. Instead, I just hid it the best I could and hurried home, thanking God for my choice of dark jeans and a long coat. What else could I do? And thank God my daughter is still too young be embarrassed by me, but she won't stay too young for long. Our shame increases exponentially with every loved one who has to suffer that shame with us and because of us, with every spouse, child, parent, or friend who must bear a scar of their own just by association. ...association with us and our shame.

*EMBARRASSMENT* The reason I am posting about something so personal and gross is because I know I am not the only one whose illness or side effect from medication has reared its ugly head at the worst possible moment, causing the kind of shame that physically feels like it's burning you from the inside out. Has something similiar ever happened to you? A panic attack in the middle of your kiddo's play? The inability to physically hold your baby during her baptism? A seizure in the middle of your Christmas party? Fainting in church? Collapsing in pain at Walmart, unable to move? Throwing up at the DMV? An inappropriate outburst in class?

Does your fear of embarrassment keep you from doing things you want to do?

Mine does.

*HUMILIATION* I don't expect many replies if any: this is a terribly difficult thing to talk about when there is no anonymity for our benefit, and I do not want anyone to feel any more embarrassment than they already feel. I just wanted to let you know, and remind myself, that we are not alone in our shame and disgust with ourselves. I also wanted to let others know that our illnesses go beyond the physical symptoms, and the scars they cause are more than skin deep.

*FEAR* The wounds caused by events like these heal slowly and never entirely. When I think going out in public again, at least today, I burst into tears. It's going to take some time to be able to face what has become my one of greatest personal fears. I don't want to let my disease run my life, I don't want the fear of what I see as the worst kind of embarrassment make my decisions for me, but I also need to be kind to myself. It's not about "forgiving myself." It's about understanding that I am forgiven for being myself, for that which I cannot control, and trusting that people could forgive me and could still be my friends even if they saw my deepest shame. In the meantime, I can thank God for the understanding and compassion my personal shame leaves in my heart when it comes to the embarrassment of others.

Here is a really good article addressing the embarrassed and God's unconditional love by Paul Maxwell, called "How God Embraces the Embarrassed." It's worth reading and bookmarking to read again when the inevitable happens. God loves you, and so do I, so hold your head up high and try to love you, too. Click on the link below.

"How God Embraces the Embarrassed"

"Embarrassment, rejection, exile, shame, and loneliness are all real. And so the embarrassed are a people who cry “Why have you forsaken me?” with Jesus, who says to them,

“You will be with me,” (Luke 23:43)."

Judge Not Lest ...Ye Know the Rest

“JUDGE NOT, and you will not be judged; CONDEMN NOT, and you will not be condemned; FORGIVE, and you will be forgiven; GIVE, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the MEASURE you use it will be measured BACK to you.” (Luke 6:37-38)

*

Invisible chronic pain and the use of narcotic pain medication to control it is one of the most difficult realities we sufferers have to defend in our current medical system, if not thee most difficult. I was treated with less personal judgment when I was a smoker. No joke. But my latest trip to the ER has led me to shine a light on the way those of us with invisible chronic pain who are on prescribed narcotic pain medication are not sometimes, not once in awhile, but usually treated by medical staff. I can give you two perspectives because I used to be on the ER staff.

I used to be one of the judges; now I am the judged.

You might think I would be in no state to follow and evaluate the events that transpired in the ER if I was indeed sick enough to need in the ER, but in this particular case I was as hyper-aware as I have ever been, and while the treatment by the medical staff during my most desperate trip to the ER was sadly nothing new, it did sting me more than all the other times put together because this time, I needed kindness and understanding more than I ever had before because I felt so much worse than I ever had before. I honestly thought I was dying.

The Outcast du Jour: Here but for the Grace of God Retches You.

To make a long story short, my Ulcerative Colitis (UC) was at the time being treated with nothing but a few milligrams of steroids and pain medication while I waited for my insurance company to approve a new and expensive treatment, and so my UC symptoms obviously continued to get worse the longer my insurance company took to okay my doctor's newest course of action. Then I took a new time-release medication that, due to the several feet of ulcers and rawness in my intestines, was absorbed with much more rapidity and entirety than the doctor who'd prescribed it had anticipated. It reacted with the other medication already in my system, and I honestly had never been so sick and so scared in all my life. As the convulsions began, I thought for sure I was going to die from this reaction.

But that wasn't what the ER staff seemed to see when I came in that day,

and that wasn't how I was treated.

Society's list of accepted outcasts and rejects changes over the decades (not that long ago it included people of color and the Irish. At another time it included homosexual men and women and people who didn't attend a Christian church. Now it includes people who do attend a Christian church and people using narcotic pain medication). Every generation has their own self-defined cast of characters who don't deserve the help of the virtuous and are ripe for harsh judgment, unkindness and being left out, to put it mildly. In terms of the current accepted unworthy, I'd pulled a quadruple-whammy in the ER that day:

1) I am a young Social Security Disability and Medicare recipient.
2) I am currently taking daily prescribed narcotic pain medication.
3) I am in intense invisible and chronic pain.
4) I had been in that same ER several times before that same year for the same uncontrolled invisible chronic pain problem.

Charge: Inability to effectively fight a serious chronic disease without the use (or as many who just met you will judge: the overuse) of narcotic pain medication.

Verdict: Guilty. Lazy. Wimp. Drug Seeker. Addict. Unworthy of medical resources.

Sentence: Hereby sentenced to treatment by medical staff with impatience and unkindness whenever possible. Critical and suspicious judgment of your life and behavior will be constant. Doubts as to whether or not you truly need pain medication, regardless of what your primary care physician of 5 years believes, will likewise be constant and will affect the amount of medication you receive and the time that you are forced to wait to receive it. Certain questions regarding your treatment will not be answered, certain information about your treatment will be withheld from you (such as what kind of medication you are getting and how much) and certain claims that you make regarding your pain level will automatically be dismissed as "drug seeking behavior."

As I said before, this type of treatment for someone with my condition and medication list is nothing new and certainly not unique to me. And I get it. I've been on the other side of that fence. Resources and time in an ER are scarce, and it's hard to believe that a young, unemployed, screaming, vomit-covered person with a medical record and medication list the size of Canada is in real pain so severe that she can't even begin to control it much less rate it on a scale of 1 to 10. It's hard to keep in mind that this pathetic human being lying there naked, soiled, and exposed to all in every way on your cold, unfeeling table has struggled (and failed) to control a serious disease and its symptoms, and its medications and their side effects for A DECADE before an ambulance dropped her off at your automatic doors. I guess I should have been wearing a t-shirt that said:

...and was signed by my doctor, of course. I know it's easier to forget that obediently following my doctor's orders is what landed my undeserving body so disruptively in the middle of your ER. I know it's easier to forget the fact that this sobbing, unrecognizable person retching over the side of the bed is the wife of a popular local minister, a loving and beloved mother, a cherished daughter, a really real person just like you as she loses control of every one of her bodily functions right in front of you. I understand that it's easier to forget that there is just one tiny, little difference between YOU and ME: for reasons no doctor can seem to figure out, my body stopped working properly long ago while yours has kept right on working like it was meant to do. Aren't you the lucky one. Who would want to replay the famous quote, "There but for the grace of God, go I," in their minds and hearts while working on the pitiable mess of a human being that was me? It's easier to see me as some drug-seeking good-for-nothing than yourself under different circumstances.

So, my doctors prescribe me medication to make my days tolerable since they can't cure my disease. I can't blame them. You don't blame them. You blame ME.
*
BUT NOTHING ABOUT THIS IS MY FAULT!

I didn't give myself this disease: no one knows what did.

I always do what my doctors say and that loyalty has nearly killed me more than once.

I take all my medications as prescribed, which has given me at least as much trouble as relief.

I am doing the best I can with what God has given me.

ARE YOU??

*

In that ER room on that day, no one would even tell me what medications they were giving me: something you would think would be a basic right of knowledge, especially considering that taking a new, unknown medication is what got me into this mess in the first place. When I asked, they simply told me, "You're doctor knows what they are," as though what they were pumping into my body was some kind of secret to be kept from me. I have no idea what they thought I would do with that information if I'd had it: no one explained their reasons for not telling me what they were giving me. (Incidentally, when the doctor did arrive, he told me **without reservation** exactly what medication I was being given and how much, and he said he had no idea why the ER staff hadn't told me when I'd asked). I think it's clear the big secret here isn't the medication being used.

So PLEASE for the love of God and/or mankind STOP JUDGING ME.
It comes out in all manner of nasty ways, and I do NOT deserve it.

Don't add insult to my injury with cold indifference and self-awarded superiority. Be just a little bit kind to me in my darkest hour. Even though I seem to have too many darkest hours to be real, I promise, THEY ARE ALL TOO REAL. Still, if all I look like to you is a waste of time, energy and bed space that could be put to better use for someone who is "really sick," then look for Christ in me. Care for the Christ who is lying in this filthy bed in my place, looking just as disgusting and unworthy of your compassion: cold, hurting, scared, confused, wronged, naked, unfairly judged and in desperate need of help. (see Matthew 25:31-46)

"Therefore let us not pass judgment on one another any longer, but rather DECIDE never to put a stumbling block or hindrance in the way of a brother." (Romans 14:13)

Would Jesus Eat Supper With Me? Living & Dying Alone

And so, with as horrible as I was feeling, it was little surprising when all of a sudden my ER room was empty and I found myself completely alone with all that bright beeping and without a call button in reach of my undeserving fingers, without a way to communicate with anyone except for trying to shout through closed doors (and no shouting could have been done through my throat which had been ravaged by hours of uninterrupted-vomiting). I knew the staff expected me to sleep, and I was exhausted, but I was still more scared than ever and oh, so horribly sick. No one had explained what was happening to me yet, no one told me when I could expect to feel better, or how they were working on getting this terrible medication out of me, or what I could expect to happen next. All they kept saying was that "my doctor knew," and I hadn't even seen him yet by the time everyone felt else felt confident enough to leave me alone in my misery.

I assumed that since no one was with me, I wasn't going to die after all, but no one had yet told me what was happening to me exactly. There were so many tubes going in and out of me that I couldn't turn onto my side much less get up and find someone. I felt trapped. How could I get someone's attention? The doors were closed and the curtains were drawn. I knew everyone had other things to do, but the (hopefully unintended) result of their unspoken abandonment was...

...devastating.

Psalm 22:11

Couldn't someone have explained that they all had to go but would be back every half-an-hour or whatever to check on me? Couldn't they have given me a call button? Couldn't they have reassured me before they left? Couldn't someone have simply said goodbye?

It was that moment in that sterile ER in which I began to feel obligated to apologize for being there, for taking up space, time, medicine and other resources meant for the truly needy. So I began to apologize to anyone who happened to be nearby, thinking that if I admitted I was wrong (even though I wasn't), they might be nicer to me, maybe answer my questions with more than, "Your doctor knows," maybe not find me so intolerable and disgusting and stay with me for a few minutes or find a chaplain or someone else to hold my hand for a while.

I told everyone that I was sorry for being there, that I was sorry for wasting their time. I told them I was sorry for my medical history, for my invisible, chronic pain and my long, long list of unmentionable and bad medications, for my failure to beat my disease after so many years of trying so hard, for my intense fear of dying and leaving my daughter without her mother, and for the fact that I took this latest new medication as prescribed and that I had reacted so badly to it. I actually apologized for what was happening to me: I apologized for what had been done to me and for what was being done to me, I apologized for my doctor's oversight and my broken body's overreaction even though I did nothing to cause either. I might as well have been apologizing for having freckles and green eyes, but to be honest, if it would have stopped all the harsh judgment, I would have apologized for that, too.

While strapped to that bed by more tangled tubes and wires than I could even count, the medical staff's treatment of me led me to feel like I ought to apologize for being a sick person who needed help in a hospital.

...like I was an inconvenience to this institution instead of the reason for its existence, like I was an interruption to the  staff's day instead of my medication reaction being an interruption to mine. I felt like I ought to thank the ER staff every time they took a second to glance my way, and I did. I felt like I was 100% in the wrong and that might be one of the reasons God chose to give me such an awful reaction to my medication.

Judgment, especially when help is so desperately needed and the subject is judged to be unworthy of that help, is contagious. If we are told and shown how worthless we are over and over again in word and in deed, we will begin to believe it. Like the ER staff, when I offered apologies that should never have been offered, I'd forgotten that compassion is not meant to be earned. It's the Law (God's Law, that is, not man's). It's mandatory. It has to be, or else we'd never offer it to anyone because no one apart from Christ could ever truly earn it.

Reason's Last Stop: I'll Take That Impossible Path Instead of the Paved One with All the Signs and Friendly Passersby.

What we all can say with 100% certainty is that even if ER patients are not dying, even if they are on every drug--legal and illegal and in between--they are still in agony (with a few who are living in an even deeper agony of exaggerating their suffering in order to achieve some brief high that has sadly what they live for, a worse agony than I can imagine). Yes, drug seeking happens, and yes, drug seekers still deserve our compassion BUT like with the Disability fraud, the majority of people seem to think it is so easy to perpetrate, that most people on narcotics are drug seekers and not genuinely sick, when in reality, it's the other way around.

Why? Because who in the world would ever want to be treated so poorly
if they didn't really need the help??

The unending piles of confusing paperwork, the personal and nasty snap-judgments of total strangers, the rudeness and inexcusable incompetence of the people involved and the hatred by all that is thrown the way of the disabled with billboards and Facebook posts calling us "users" and "liars" and "lazy" and "drug-seekers" and "frequent-flyers" and worse. All this hatred and judgment on top of being so ungodly sick is just too much to endure.

It is far less work and far less painful to be healthy and have a full time job, and it is far less work and far less painful to NOT need pain medication on a daily basis.

I have been in both places and I promise you, THAT IS A TRUE STATEMENT. One that I cannot believe isn't so blatantly obvious it isn't glowing above my head Vegas-style. Who wouldn't choose to be healthy over being unhealthy? Really? Who wouldn't choose to take their kid to the park on a nice day? To go to a job they spent years in college and graduate school learning to do and make $4000 a month instead of $800? Who wouldn't choose to feel good and have energy over feeling blah and tired and woozy all the time??

Do you really think I chose this life??
Do you really think my life is easy??
Then let's trade for a day. Or even 5 minutes.

The next time you meet someone who is on disability, or on pain medication, and you decide for yourself within a few minutes of conversation that she just doesn't want to work or he just wants to get high, and all their doctors are liars and all the judges are idiots and the system is so easy to fool, turn back (Acts 3:19). This time, use the kind heart that Jesus gave you in your baptism and ignore the one your politician has implanted in you with all of his or her nasty, hateful tirades. Pray that the truth will out, if it has not already, thank God for your own good health, err on the side of grace and just BE KIND. Leave it at that. Those snap judgments and sinful criticisms are bad enough to endure coming from talk radio and TV news and from my Facebook "friends"...

But few things in this sick, sad, unfair world can compare to being judged as some lazy drug-seeking addict in the walls of a hospital when all you are is a seriously ill human being in extreme pain who can't get anyone to listen to you.

No sane person in their right mind would subject themselves to this level of contempt and misunderstanding if there was any way to avoid it. Yes, some people manage to manipulate doctors and the paperwork and the system and really are "faking it." But most are not. As for the few people who are faking it, you don't know who they are. You wouldn't want a banker treating you like you had bad credit the second you walk in the doors for a loan, would you? You would want him to give you the benefit of the doubt until he has good reason to dismiss you. That's what we all would want.

The fakers are still people, and they are most certainly ill in a different way. They are still created by God and are still loved and redeemed by that same God, and that alone makes them worthy of our compassion (albeit not the kind of compassion that ends in enabling, but rather a much more difficult compassion that ends in a rehabilitation or perhaps even jail). (Matthew 18:21-22)

No level of compassion can ever be reached by a cold shoulder.

The fear of enabling an addict is perhaps where some of this common mistreatment of chronic pain sufferers finds its inception, but from where I'm laying, there is very small merit in the good intentions of erring on the side of caution when it means treating an innocent, truly ill person like dirt. Everyone who comes through your ER doors ought to be treated with respect and kindness, in the spirit of "first do no harm," if you wish, or in the spirit of "innocent until proven guilty" if you wish to look at it that way, or by the call and command of Christ to treat others as you would want to be treated (Luke 6:27-36), to not judge one another (Luke 6:37-42), and to be kind to the least of society's members (Matthew 25:31-40), if you wish to look at it in any of those ways. If any of these assumptions could underlie the judgment and subsequent treatment of people with invisible chronic pain as patients who are as worthy as all others, the problem might be abated a bit.

And yet there I laid, alone in your cold bed, shaking from closest I've ever been to real death while conscious, the call button too far away and myself too afraid of your hate to ask for a simple glass of water.

Is that how you would want to be treated, how you would want your child to be treated,
if by the grace of God, you (or they) were in my shoes?

*

"Jesus also told them a parable: “Can a blind man lead a blind man? Will they not both fall into a pit? A disciple is not above his teacher, but everyone when he is fully trained will be like his teacher. Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? How can you say to your brother, ‘Brother, let me take out the speck that is in your eye,’ when you yourself do not see the log that is in your own eye? You hypocrite, first take the log out of your own eye, and then you will see clearly to take out the speck that is in your brother's eye." (Luke 6:39-42)

Sometimes We're Forced Into Directions...

...that we ought to have found for ourselves.

"Seated Beggar and His Dog"
by Rembrandt
1629

The Rich Man and Lazarus 

Jesus said, “There was a rich man who was clothed in purple and fine linen and who feasted sumptuously every day. And at his gate was laid a poor man named Lazarus, covered with sores, who desired to be fed with what fell from the rich man's table. Moreover, even the dogs came and licked his sores. 

The poor man DIED and was carried by the angels to Abraham's side. The rich man also DIED and was buried, and in Hades, being in torment, he lifted up his eyes and saw Abraham far off and Lazarus at his side. And he [the rich man] called out, ‘Father Abraham, have mercy on me, and send Lazarus to dip the end of his finger in water and cool my tongue, for I am in anguish in this flame.’ But Abraham said, ‘Child, remember that you in your lifetime received your good things, and Lazarus in like manner bad things; but now he is comforted here, and you are in anguish. 

...And besides all this, between us and you a great chasm has been fixed, in order that those who would pass from here to you may not be able, and none may cross from there to us.’ 

And he said, ‘Then I beg you, father, to send him to my father's house—for I have five brothers—so that he may warn them, lest they also come into this place of torment.’ But Abraham said, ‘They have Moses and the Prophets; let them hear them.’ And he said, ‘No, father Abraham, but if someone goes to them from the dead, they will repent.’ He said to him, ‘If they do not hear Moses and the Prophets, neither will they be convinced if someone should rise from the dead.’” (Luke 16:19-31)

* * *

I FIRMLY believe God does not lie. This is His promise to you: to relieve your suffering once and for all through the suffering and death of His one and only Son, who died in our stead so that we might live eternally, perfect and pain and sickness-free one day. So please, try to get better, go to those doctors, take that medication, do your research, ask those questions. And try to keep that job or get that disability if you need it. Pray for those things, worry some because we don't have a choice their, be disappointed and stressed when they don't work out...

...but please please PLEASE do not ever rely on those things of the world as though they were your salvation. Your happiness does not lie in your health,

nor in your financial security. 

When we're sick every day and can't care for our families as we'd like and can't work and the doctors' bills keep piling up and we're getting nowhere and we feel like we're drowning, we forget that. Why? Because our illness and its costs to us and to those we love make us so incredibly unhappy, that's why. It is so easy to forget that our happiness is not locked up in a cure. It's freely given to us by Christ. So I'd like to remind you:

* * *

 

"The Peace He Left Me With"

by Megan Smith

originally published on August 19th, 2012

at When Suffering Doesn't Stop: A Life With Chronic Pain.

"PEACE I LEAVE with you; MY PEACE I GIVE to you. NOT as the world GIVES do I give to you. Let NOT your HEARTS be TROUBLED, neither let them BE AFRAID." (John 14:27)

Do you ever catch yourself thinking, "Ugh, if only I'd get that loan paid off, then things would be so much better." Or, "Man, if only I'd win the lottery, my stress would be so much less." Or (my personal favorite), “If only I'd get better, then everything would be fine."

"If only I'd get that promotion..."

"If only my Dad would move back in..."

"If only God would get me out of this mess..."

It never quite works, does it, even when that "if only" is fulfilled, because there is one if-then statement we can actually count on holding true: IF it's not one thing, THEN it's another. That's life for everyone, Christian or not. It's true. Going to church won't to get you any better odds in the Powerball.

So why bother going? 

...the world would ask. True peace is something the world doesn't understand. True peace sustains us while we're dying of the cancer God didn't cure, and it comforts us while we weep over the grave of our child whom God let die. True peace is what we strive to find while suffering with pain day after day after day when we know we are never going to get better. 

We have to know--I have to know--that True Peace, the peace that surpasses all understanding, exists even when the pain doesn't go away, that it is a gift given to us by God, won for us by Christ, or we (I) will simply go mad. True peace doesn't come from a cure. Anyone who's beaten cancer once, or more than once, will tell you that. And true peace doesn't come from that one bad thing being taken off our backs or from finally getting what we think we want or even need.

The True Peace of God allows us to be at peace DESPITE the fact that everything around us going wrong because true peace has nothing to do with what's going on around us or inside us or because of us. It's about what Jesus did for us. And so, to the world, we're delusional at best; idiots at worst. And without the gift of the Holy Spirit, you and I would surely turn away from God in our sorrow, too, finding shallow "peace" only on a good day.

If happiness depends on all our "if onlies" being met at the right time, no one would ever be happy.

In our baptism, the Holy Spirit gave us a beautiful child-like faith that--while not left untested--is able to withstand anything the world can throw at us in its attempt to make life unbearable, including death. Through Word and Sacrament, we are renewed day after day after day with that gift of True Peace that surpasses all understanding. 

Don't miss the forest for the trees. With our precarious view of the good in spite of the bad, pray each day for the Holy Spirit to grant you a mustard seed of faith that truly will move mountains. Thank God for the ability to believe the impossible, and for the peace that allowed a beautiful woman to die with neither a troubled heart nor fear of any kind despite the hard life she had to live. (We love you, Grandma).

Suggested verse to repeat if it's a difficult day is derived from Philippians 4:7

Remember to breathe!

"The peace of God -------> 5 count inhale

will guard your hearts.” -------> 5 count exhale

Learning to Be Proud of Who Your Child Is Becoming

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

*

"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

*

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."
"

Submitted by Megan, Ulcerative Colitis