Journey to Brave: The Realities of Daily Pain

{Art journaling by Jennifer LeBlanc 2012. All Rights Reserved.}

Pain is an opportunity to practice courage.

People have told me how amazed they are that I continue smiling through the pain. That's not always the case, and this picture was taken to prove that. I post it with trepidation. It's not pretty. Neither is severe pain or living with it.

The picture on the left was taken on my way to church with my family. This is what people often see. I'm done up and out. I look 'normal.' I am likely in significant pain even when I look like the left picture. What people don't see is the effort it takes to get the pain under control and get myself looking like this and get out the door. The picture on the right is what people rarely see. This was taken the other night while I was in a severe episode of Costochondritis, a frequent symptom I have, when the inflammation flares in my sternum, rib cage and chest. This particular attack was my spine, ribs, chest, sternum, all the way around, front, back and sides. I literally felt "IN pain." I was inside of it and it held me in its clutches as if I were a bird in a cage. Costochondritis is commonly described as feeling like you are having a heart attack or an elephant is sitting on your chest. It's incredibly painful and makes every breath painful as well.

If it helps you to understand better, check out this image.

The chest is made up of many, many bones and joints. I could feel every single one.

I do not write this for your sympathy or pity. I do not write this to complain. My reason for posting this is to help raise awareness. Because I am just one of the mass of people out there living with daily pain. 

If you are one of those with chronic pain, I write this for you. I write this to say, "You are not alone!" 

{My daughter drew this picture to illustrate an elephant on Mommy's chest}
Pain takes its toll, especially severe pain. It is difficult, and sometimes not possible, to live a normal life of responsibilities and activities when pain is part of your daily reality. 

Please understand that we are not lazy if we sleep more than you do. We are not "lucky" to have frequent rest times. I cannot tell you how frustrating it is for me, as a person who thrives on being productive, to have to rest while life all around me doesn't stop.

And because life doesn't stop for chronic pain and illness, as it might temporarily pause for those who take a sick day from work, I have to learn what I can and cannot manage. I have pain every day, 24/7. I honestly can no longer remember what pain-free feels like. So please understand if I cannot watch your kids, lead out in activities or events, or if I have to cancel our afternoon get-together or play date.

I cannot express what a gift it is when people don't judge. When you say, "I'd love to get together but please feel free to cancel if you're having a bad day." When you're at the store and you text me to see if I need something picked up. These are real life examples of things my friends have done for me in the last week. You are a gift to me. Your understanding, or willingness to try to understand, is not something I take for granted. Thank you!

I firmly believe that if you just look for them, there will always be more blessings than struggles.


Did You Miss It?: (in)RL Conference Materials

If you missed the inRL virtual conference, I have great news! Dayspring and (in)courage have teamed up to make the event's videos and workbook available for sale. Through the end of this month, you can save 50%. 

The videos alone are worth every penny, not to mention the study booklet. I know I will watch the videos again and again, even though I attended the event.

These videos include authors and bloggers including Ann Voskamp, Holley Gerth, Lisa-Jo, and many, many more. Also, the very touching 30 minute video tribute to Sara Frankl, our friend who lived bravely despite severe pain and limitations and left a legacy of Choosing Joy, is included.

Now through the end of the month, save 50% using code INRL50.

I highly recommend you purchase these materials, enjoy them, and share them with your Bible Study girls, church library, mother, aunt, sister, and all of your friends.


Many Blessings: Looking Back and Looking Forward

I remember shopping for rubber stamps in the months before my diagnosis with Ankylosing Spondylitis in 2010. I wandered the aisles of Craft Warehouse and selected a package that inspired me. The stamps were of cherry blossoms and soaring birds, with words like {Many Blessings} and Bloom and I decided right then and there in that aisle that I would do just that.

I decided that no matter what came with my health and my joints and ability to walk, I would keep growing and live joyfully and I would try to live my life in such a way that people watching could be inspired.

Because we all have battles, don't we?

Today I was doing some journaling. I got out some stamps and ink pads, and stamped the words from that package of stamps on heavy ivory pages and I remembered that time so clearly. I remembered the fear and the worry, the new symptoms that popped up frequently (autoimmunity is like a circus, you just never know what new and colorful thing will surprise you next), the months between when my primary care doctor said she was certain I had AS and 3-4 months later when my rheumatologist confirmed the diagnosis.

I remembered reading posts by Sara Frankl, and being strengthened by her attitude of daily joy regardless of the circumstances. I filled myself that summer, reading inspiring things, feasting on outdoor beauty, and journaling my own feelings and declarations that no matter what came, I would grow and I would fight and I would live my best life.

For me, it's important to look back and remember the milestones. It's important to regularly think about the choice and commitment I've made to find a way to weave beauty, inspiration, courage and my dreams into my reality.

I'm thankful for books and blog posts that have kept me inspired. I'm thankful for the example of how others fight their battles.

I feel buoyed by the realization that I have done the best I could so far, and that I have kept a joyful, thankful outlook. I'm thankful for everything and everyone and the One who have helped me do that. I'm also thankful for grace when I can't fight for a day or two and need some time to just grieve what the reality is.

I choose again today to continue to live with as much courage and strength as I can muster, to offer grace to those around me and to myself when needed, to use my words to heal and uplift, not to harm.

I choose again to keep fighting to make my dreams reality, even when my reality is heavy and hard.


The Friend in My Pocket

"Make new friends and keep the old,
One is silver and the other gold."

She is a new friend that feels "old" in the best possible way. A treasure, precious; gold.

I tuck her in my pocket and carry her around with me throughout the day -- sometimes almost literally -- our words connecting our hearts via texts from iPhone to iPhone carried in pocket and purse.

I text to report on what my body is doing today -- maybe hips are limping, maybe a spine is stiffened, maybe hands are swollen. I tell her what my heart is feeling -- maybe stressed and maybe blessed. Often, as authentic life goes, a measure of each. I tell her what my girls are doing, what our day is holding.

She tells me things back.

One of my kids acts out in public and I go home, deflated. It never ceases to amaze me how my girls' behavior can thrill me or undo me.

I text her, my phone making a little whoosh as the message of "My day just went south" zips its way through mysterious channels of technology to ding into her phone.

I am returning Redbox DVDs, comfy in velour pants and ballet flats, comforted by the silence of no children on this errand; inspired by the fresh air and lighting of dusk when my phone alerts me of her reply.

I hold my breath as I read in my parked car. She is new after all. Will she judge my motherhood; my babes (grown in the protection of my body, in the space beneath my heart)? My babes I've spent nearly 24/7 with since their birth? Motherhood is of utmost importance to me -- the desire to put in the time, do the work, give it my best (which so often feels like not good enough).

She says the perfect things, her words a balm to a bruised Mama-soul.

Her message lightens my load as she volunteers to help carry it. I find comfort in her understanding and non-judgment.

She is new, but she is gold.

Thankful for a pocket friend tonight.


For the Woman Grieving Her Baby

In 2005 I lost a child at 10 weeks gestation. I had no symptoms of anything going wrong. I went in for an ultrasound and discovered that our baby had no heartbeat. They told me this was called "Missed Miscarriage." It was a type of miscarriage I didn't know existed.

In the years since, similar things and worse have happened to women I know -- neighbors, college roommates, childhood friends. And I've learned that no matter how much I hurt for them, our experiences are not the same. I want to help and I want to say the right things -- ideally one exactly right thing that will bring comfort or an ounce of peace.

Sometimes I plan tea parties in my mind. I daydream an event in my home where I would gather all these women on my couches and tuck warm blankets around them. My home would be clean. The coffee table would hold boxes of the softest tissue. My kitchen island would offer cookies and fresh fruit and tea and coffee and hot cocoa. Big, big mugs to hold enough hot liquid to help swallow down each other's stories; to wash away the hurt.

I would design them all a journal. I would hand it to them, wrapped in tissue paper and string, with a sprig of Forget-Me-Nots. I would say, "It's okay to remember. It's okay to process the loss of your sweet baby, your child, until you have nothing else to say. Until the brutal mourning transitions into a fragile, yet beautiful butterfly that flies free and simply lands on you from time to time, a reminder."

I would lend them my books on miscarriage, stillbirth and infant loss. I would offer anything at all to ease the grief.

Most of all, I would say, "Please don't think you are alone."

I would say, "Find safe people to talk about your baby with. Find people who will listen and not try to minimize what you're going through."

I would say, "People will tell you, 'At least you have your other child(ren).' Yes, that's true, you do. You have someone else to get out of bed for and to pour your love into and to hold when your arms throb with emptiness. But children aren't replaceable. Your living children do not replace the unique bond you formed with the one who died. You have every right to remember and grieve and miss the one who isn't here. And you have every right to love the lost and carry the memory of your sweet baby in your heart, even though your arms cannot do the holding."

I would say, "Grief has its own timetable. Even when you think you've already grieved your loss, it may come back. It may hit harder two years down the road than when it first happened."

I would say, "Miscarriage is not a heavy period! Miscarriage is the death of a living, growing baby. Your baby." 

I would say, "In the darkest pockets of sorrow, you may feel you're going crazy. Grief and madness are not the same, but on this journey, they may feel that way. You will survive this. However, if at any time you have thoughts of hurting yourself or others, or if you begin to make plans or fantasize about your own death; if you can't get out of bed for days on end, please tell someone you trust. Please say the words, 'I need help.'"

As much as it's cliche and as much as you might not want to hear it right now, I would tell you, "It gets better. I used to think that perhaps those further down the path of loss -- further healed -- hadn't had as strong of a connection to their baby as I had to my Jordan. But no matter how long it takes, no matter how many times the grief comes rolling back in -- the strongest ocean waves threatening to suck you under -- it will get better."

You will always remember. You will hold that baby in your heart and carry them your whole life. You will not forget. But eventually, after enough tears and hard work to process this huge, huge hole in your life, the memory of your baby will not bring pain. It will bring a tender, sweet joy.

It's okay to do exactly what you feel will bring you healing. It's okay to write down what you're feeling and not mince words. It's okay to crouch in your closet and sob. It's okay to find the innermost part of the forest and scream. It's okay to sleep with a teddy bear when your arms feel so empty they might detach from your body. It's okay, friend, to do what you intuitively know will help.

Maybe that's planning a ceremony. Maybe that's a memorial service. Maybe that's making messy art. Maybe that's buying a baby blanket even though you have no baby to swaddle. Maybe that's starting a blog. Maybe that's training for a marathon. Maybe that's raising money for organizations that fight for children. Maybe that's sponsoring a child.

In our family, there's a day every fall that we call Jordan Day. It's not a birthday and it's not a celebration, but we make a special meal -- always Mexican food, as that's what I craved when I was carrying Jordan -- and we light candles and eat as a family, and we remember and acknowledge the missing member of our family.

Healing will come. You'll never forget. You'll never feel it didn't happen. But healing will come. It will leave a scar, but you will heal.

Until you heal, please know I am crying tears for you and with you. Because I know the depth of my love and longing for Jordan, I can imagine the depth of yours. So when you need me, let me know. I will walk this path with you.

You are not alone.


Reflections on (in) Real Life

(in)RL.... sigh. Do we really have to wait a year for the next one? I would gladly welcome fresh content every single weekend. It was that good.

For those who don't know, (in)RL stands for "in real life" and it was (in)courage's first conference event. 

(in)courage is an online home for the hearts of women, and part of Dayspring, the Christian subsidiary of Hallmark.

It's about encouragement and courage and friendship and community and authenticity. And it's oh so good.... like Black Raspberry Chocolate Chunk ice cream.

From its sweet beginnings, (in)courage has nourished me and fed my spirit.

One video section of (in)RL was Sara's Story. I've written about Sara in this space many times. She was homebound due to Ankylosing Spondylitis, the same painful inflammatory disease I have that attacks the spine & joints, and severe complications. She blogged at gitzengirl.blogspot.com and she changed the world.  Go spend some time at her blog and you will understand. Sara passed away September 24th, 2011. She was in her thirties.

Please take 30 minutes, or come back when you have the time, and watch this video, a beautiful tribute to our Sara.

One of the other favorite parts of the weekend were the videos of bloggers reading their posts aloud. There was something so powerful about hearing the voices of these women whose words we usually just read. One of my favorite posts was this one by Amber Haines. A week later I still hear her voice saying, "You are all Jesus to me."

Such a powerful, needed, encouraging weekend. Thank you, thank you (in)courage!


Brave Enough

Over the weekend, I had an unexpectedly severe flare-up of pain related to the chain of surgeries I had following my miscarriage years ago.

It's amazing how that pain can take me right back to the raw grief of losing our baby Jordan. It's like scent... how certain smells will put you right back in your grandmother's kitchen on Christmas morning.

I was in terrible pain Friday night and was unable to rest until about 4 in the morning. I got up Saturday, desiring to go to church with my family.

I was emotional, as I always am when I've been in that level of pain -- that pain that flashes me back to the reason for the surgeries. The pain that represents sweet beginnings and possibility scraped out, leaving years of physical and emotional complications.

Our daughter Hannah is an old soul. She is a compassionate girl who has grown up with a Mama who struggles with pain. It hasn't always been something I can hide from her and she has consistently handled my rough patches and my heart with a tenderness that astonishes adults.

This is the girl that told me when I was in the dark spaces of mourning Jordan, "Grief is like when you get something in your eye, and you have to cry and cry to get it out." She was 4 years old.

This is the girl that curled up next to me when the pain literally dropped me to the floor and smoothed my hair while saying, "Medicine takes a long time to kick in, sweetheart, but it will kick in." She was not yet in Kindergarten.

Saturday morning, I hugged her, apologizing for my tears as I explained to her, "Mommy had a bad night."

"It's okay, Mom," she told me, hugging me back. "I think God chose the right children to have a pain mama. Me and 'Nally' are okay with it. We're brave enough to have an arthritis kind-and-loving mother."

We're brave enough...

With tears in my eyes, I tucked away her reassurance and that phrase into the pocket of my heart. Brave enough. And I decided that I could be brave enough too. I took my girls to church, and I smiled through the pain. Not to discount it or try to hide it, but because life is beautiful and life is good. Every day, even the hard, is another chance to love and to form relationship and community with those around us.

Let's be brave enough to do that.

Let's be brave enough to do hard things, and not give up, and rest when we need to, and make memories regardless of our current physical ability, and encourage those around us, and grow. Let's be brave enough to keep on when it would be easier not to, and to believe in the good when good is hard to find.

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