Flying Through the Storm

"The wise man in the storm prays to God,
not for safety from danger,
but deliverance from fear."
{Ralph Waldo Emerson}

What Support Looks Like

While my aunt was battling breast cancer, my uncle (who travels for work a lot) put a magnetic pink breast cancer awareness ribbon on the back of his car. With tears in her eyes she told me how much that meant to her.

I was diagnosed just over a year ago with Ankylosing Spondylitis, a chronic inflammatory disease that attacks the spine & joints. I live with pain, stiffness, low-grade fevers, swelling, sleep difficulty, limping and more, depending on the day.

About a month ago, I received a package in the mail that an Ankylosing Spondylitis support group mailed me. It contained a tee shirt and a couple of Lance Armstrong "Live Strong" style blue wristbands for Ankylosing Spondylitis. Blue for arthritis {AS is an inflammatory form of arthritis, like Rheumatoid Arthritis}, with the words Stand Tall etched on the band.

I dumped out the contents of the bag and was surprised when my husband Jonathan snatched up one of the blue wristbands and immediately put it on his wrist. Since that day he was worn it every day, no matter where he goes. He wears it to work with khakis and a button-down shirt, church with a suit and tie; at home, in jeans and a tee shirt. 

 

People ask him what it's for. He replies something like, "Well, blue is for arthritis awareness, and this particular wristband is for Ankylosing Spondylitis." He goes on to say what AS is, and that his wife has it. People have replied with, "Oh! I wear a purple one for Lupus" and "We know what Ankylosing Spondylitis is, our daughter was diagnosed when she was 21. She's 41 now."

He is spreading awareness. And that's powerful.

But what it means to me, I can't fully explain in words.

I didn't ask him to wear it. I didn't expect him to wear it. He just chose to.

Whenever I see him wearing it, I feel a strong sense of support. I feel less alone in my battle.

It reminds me of wedding rings. When I see him wearing his wedding ring, I feel loved and affirmed in his sense of devotion and commitment. But wedding rings are a societal norm. They're expected.

Awareness and support wristbands and car magnets are not.

When Jonathan chose to marry me, I wasn't battling disease or pain. When Jonathan chose to wear the wristband, I was still me, but I was a different version of me, too.

Society didn't expect him to donn a wristband to show his support for me. He just did that on his own. To me, it means that despite disease and pain, he still chooses me and is more committed to me than ever. He is choosing to stay by my side, no matter what comes, and walk this journey with me.

It means the world to me.

Sara at Rest

{click twice to enlarge the picture}

He Watches Me

While struggling with pain, nausea and sorrow this morning, He sends this song to mind:

Why should I feel discouraged,

Why should the shadows come,

Why should my heart feel lonely

And long for Heaven and home,

When Jesus is my portion?

A constant friend is He:

His eye is on the sparrow,

And I know He watches over me;

His eye is on the sparrow, 

And I know He watches me.

I sing because I'm happy,

I sing because I'm free,

His eye is on the sparrow,

And I know He watches me

His eye is on the sparrow,

And I know He watches me

"Let not your heart be troubled,"

His tender word I hear,

And resting on His goodness,

I lose my doubts and fears;

Though by the path He leadeth

But one step I may see:

His eye is on the sparrow,

And I know He watches me;

His eye is on the sparrow,

And I know He watches me.

Whenever I am tempted,

Whenever clouds arise,

When songs give place to sighing,

When hope within me dies,

I draw the closer to Him,

From care He sets me free:

His eye is on the sparrow,

And I know He cares for me;

His eye is on the sparrow,

And I know He cares for me.

{lyrics written by Civilla D. Martin in 1905}

To hear our sweet friend Sara sing it, click here and scroll down to "His Eye is on the Sparrow"

He gives strength for today, doesn't He?

Gratitude for Every Season

There is a time for everything, a season for every activity under heaven.
 A time to be born and a time to die. A time to plant and a time to harvest.
 A time to kill and a time to heal. A time to tear down and a time to rebuild.
 A time to cry and a time to laugh. A time to grieve and a time to dance.
 A time to scatter stones and a time to gather stones. A time to embrace and a time to turn away.
A time to search and a time to lose. A time to keep and a time to throw away.
A time to tear and a time to mend. A time to be quiet and a time to speak up.
A time to love and a time to hate. A time for war and a time for peace.
{Ecclesiastes 3, New Living Translation}

We go through seasons in life -- the weather changes, both literally and figuratively. For a long time, I only enjoyed certain seasons. But as I've grown (both older and hopefully wiser), I've begun to realize the beauty of every season. There are certain comforts that can only be appreciated during times of harsh weather.

Gratitude is the perfect accessory for every season. It looks great with shorts and flip-flops on a sunny beach day.

It layers perfectly with boots, jeans, a cardigan and a scarf for fall, the time of the year where some coldness and darkness creeps in.

Gratitude tucks easily in with the layers of winter, to keep you warm.

And in the spring it works like an umbrella to shelter you from the downpours.

I may live with chronic pain. I may be chronically ill. But I can also choose to be chronically grateful.

Just as there is beauty to be found in every season, beauty year-round, there is always something for which to be grateful.

In good times and bad, I can choose to be filled with joy, not just pain; filled with gratitude, not just limitations.

What are you grateful for?

A Night in the Life of Chronic Pain and Gratitude

 

I go to bed with a heating pad and a special pillow and I close my tired eyes and try to quiet my mind which is running in a way I no longer can.

The pain in my chest keeps me awake and my cheeks are damp from knowing she is nearing the end of her time with us.

I toss and turn but even that is altered now -- it's a process to turn over and there's pain if I lay on my back and pain if I lay on my hips, and if I lay on my side my ribs ache.

I give up for now, and push aside the covers, reaching for my glasses on my bedside table, and quietly get into a sitting position and then stand and grab a sweatshirt and slip out of the bedroom as silently as I can, trying not to wake my husband.

I put on the tea kettle and flip the knob to high and watch as the burner glows red in the dark kitchen. In the dark night.

Opening the microwave, I ball up a second heating pad and place it on the rotating glass plate and press "3." The appliance hums to life loudly in our silent home and I hope, like so many previous nights, that I am not disturbing the rest of the three gifts God has given me -- my husband Jonathan, and our daughters who sleep with well-loved bunnies and dollies in a shared bedroom lit by soft nightlight.

I pad over to my recliner and sit with my now-hot heating pad placed against my chest, where it feels like a heart attack is brewing right along with my tea. Costochondritis, inflammation of the chest wall, is just one of my symptoms with Ankylosing Spondylitis.

I rock and sip and wait for medication to kick in, and remember when my oldest was only 4 and she would find me balled up on the floor and tell me, "Medicine takes a long time to kick in, Sweetheart, but it will kick in." She would squat down and stroke my hair and sing me a little song.

My family has lived with chronic pain for several years now. It has come in different forms -- first, after a miscarriage, as pelvic pain, and then as spine and joint pain.

It wasn't invited, but it's here nonetheless, and although we didn't ask it to come, we have learned our way around it. We have learned, every single one of us, how to take better care of each other. We have learned, from 6'2" Jonathan to 44" Natalie Kate, how to be more compassionate.

We have learned how to love better and how to be more patient and we have absolutely learned to be flexible with plans, as I don't know from one day to the next how I will be feeling. Because of that unpredictability we've also learned how to seize the day. Mama isn't limping today? Let's take a family walk!

I sit and rock and sip and wait for the heat and the medicine to soak in and through me and I wipe away a tear that represents the grief I feel over Sara's life ending soon. More tears swell up and pool in my eyes that represent this profound love I have for my family and friends and life itself, and my gratitude that I am here to experience all of this, the good and the bad.

Eventually I head back for a second try at sleep. I slip back under the covers, fold my glasses back onto my bedside table, adjust myself with two heating pads and a special pillow, and finally drift off to sleep with my chest hurting and my heart aching.

I don't enjoy the pain, and I resent how it effects our family (especially when I see the hurt and worry in my daughters' eyes), but I relish these sweet gifts it has taught me:

Live this life you've been given. It's precious!

Sweet Sara

Along with so many others, I am sad today as a dear friend, Sara Frankl, is nearing the end of her life.

Sara has inspired thousands of people through her blog Gitzen Girl, about her journey with Ankylosing Spondylitis and her daily decision to Choose Joy. I found Sara's blog years ago and was fascinated to read her posts as she was the first person I had ever heard of with AS, other than my dad. She was a woman (AS used to be thought of as a men's disease) and she was just a handful of years older than me. I loved her red curls, her beautiful eyes and smile, her heart, her story, and most of all, her attitude.

She has been such a blessing to me, especially since I began my own journey with AS. Little did I know, those years ago, that we would share this disease.

While Ankylosing Spondylitis is known for attacking the spine and other joints, it can also become systemic and effect organs such as the heart and lungs. That is what happened in Sara's case.

Sara has been very ill and recently found out that her organs are shutting down. She is at home, with hospice care, surrounded by her large, loving family and her sweet little dog, Riley, who has been her constant companion.

Sara, you are so loved. You will be missed. We will not forget what you've shown us about life.

No more pain, no more sickness, no more tears, Sweet Friend.

Soar Anyway.

Be still, sad heart, and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.

{Henry Wadsworth Longfellow}

The Gifts in the Pain

Last time I wrote about my health, in this post, I said that in a future post I would tell you about the hidden gifts found in chronic pain & illness.

To do that, I have to go back a bit.... back to 2005 when we found our tiny family going through something we never thought we would face. At an ultrasound towards the end of the first trimester of an uneventful pregnancy, we were told there was no heartbeat.

Losing that baby has been a defining event in my life. Just like marrying Jonathan and giving birth to Hannah and Natalie, losing our {very loved, wanted, and anxiously awaited} baby helped shape the person I am today.

Miscarriage was not something I knew much about. I did not have any close friends who had been through it, my mom had not experienced it, and although I knew it was a disappointing, sad, awful thing, I had never heard of the type of miscarriage that happened to me: Missed Miscarriage, meaning that for whatever reason, a woman's body does not catch on to what has happened when the baby stops developing or dies, and does not begin the process of passing the baby.

So when we went in that day, we were happy, jovial, silly, and frankly, naive to the realities of what women go through in doctor's offices and ultrasound rooms every day.

Just moments after we were calling the baby by both names we had already chosen (one for a boy and one for a girl), we were told there would be no baby after all. No baby coming home with us the following Spring, no baby sibling for Hanny, no baby kicking soon. No baby to use the Winnie the Pooh nursery decor I had just purchased.

No baby.

I had a procedure and it was supposed to be over. My body, they said, would heal quickly and we could wait a few months and try again, have another baby.

But just days after I thought it was over, the complications began...

In a nutshell, over the course of the next few years, there were infections, antibiotics, ER visits, ultrasounds, hospital stays, surgery, bedrest, no lifting, surgery, no lying down, a new pregnancy, PAIN, a healthy delivery, PAIN, surgery, PAIN, PAIN, surgery, PAIN stretching on for days and weeks and months and (literally) years.

I have no idea how those years looked from the outside, all I can tell you is bits of how it felt from within, but even that is a blur and graphic and a mixture of joy and grief and severe daily pain that is indescribable if you have never experienced it. I've said it before and I'll probably say it again: it's amazing how much pain the human body can endure.

The gifts in the pain of those years is still a stretch to identify, but I remember how light I felt when it finally began to back off. I felt like I was flying. I could run. I could lift my daughters. I could sleep without heating pads. I could mother without medication. I could truly live.

I vividly remember how good it felt and how I knew I would never again take for granted life without pain. I remember it well because it was not long ago -- not long before I began experiencing increasing levels of pain and stiffness in my spine, neck, jaw, hips, shoulders, ribs, chest, wrist & hands, knees, ankles & feet. Not long before I was diagnosed with an autoimmune disease (a chronic disease) called Ankylosing Spondylitis. A disease that could  hunch me over and fuse (lock) my spine, a disease that could rob my ability to run, wreck my ability to walk, and devastate my ability to function daily.

It's been almost a year since I was diagnosed with AS, and some of the gifts that I had already found, thanks to experiencing deep personal loss, are firmly planted in my heart and outlook: a passionate desire to love with intention, to love well and consistently and to use my words to express that love before it is too late. I know now, and have felt all too keenly, the fragility and frailty of life. I have lost friends and classmates to car accidents, I have lost my very very dear and special Grama, completely unexpectedly and suddenly to a massive stroke at a young age. I have lost elderly and sick grandparents. But the most difficult, for me, has been the loss of a child. It's been nearly 6 years, and I still feel the hole in my heart and our family every day. It gets easier, yes, but it does not go away.

I believe one day I will hold that baby. Some days that is the only way I bear the absence of a child that was never here.

So what are the gifts?

I don't take those I love for granted.

I love with intention.

I use my words.

I use my creativity to heal.

I turn it around -- instead of asking every day, "Why am I going through this pain?" I look for the beauty around me, big or small, the overlooked things in nature, everything I can do that day, and I feel awe and wonder at it all and remember how very blessed I am to be alive; to be able to live this day.

I simplify. This was born out of my fatigue and pain levels, and serves me well as I limit what I do outside of our home so that I can better love and care for what and who is inside my home.

I slow down. This was born out of my inability to walk quickly, to stand for as long as I would like, etc... It's still hard for me, but I try to remember to take more breaks to rest, to snuggle my girls, to sit down and read to them, to make memories.

I do when I can -- When I can walk, I walk. When I can hold my girls without pain, I hold them. When I can get up early and be SuperMom, I donn my proverbial cape. I am so much more eager now to say YES! to life; to getting out in nature and being with those I love and to truly living.

So these are the gifts. They are beautiful, profound, sometimes-not-learned-until-late-in-life-or-until-it's-too-late gifts. I honestly feel very blessed to have been given them early in life, so I can better see what's important  and what's valuable and what truly matters.

These are the gifts. I hope they inspire or comfort you.

Want to Fly?

2 years

I began Live Art.fully two years ago today. I started it in response to a new way of looking at my world; a perspective of choosing to look for the beauty in every day.

I began the blog with the intent to write about journaling, creativity, and living inspired. I have touched on those topics, but the posts are tied together with a broader theme. Maybe the theme is only clear to me, but I hope as you journey with me you see glimpses of what I am seeing and learning and that you can see the art in every day.

There are a lot of awful things in the world and it took years of experiencing some of them to form this new outlook of searching out the art in the natural world, the beauty all around me and making sure to incorporate that into my life -- good day or bad day.

Thank you for coming along with me as I Live Art.fully!

 around my little red house these days, I am...

starting 2nd grade and Pre-Kindergarten with my two little learners (loving homeschooling!)

journaling

writing a book (memoir-style) on loss and love

organizing our entire home, including garage (this is wonderful! we have a small house and not a lot of storage space in it, so in order to keep it tidy, there can't be too much. we have made major progress in the last two weekends and I am loving our new & improved nest)

gearing up for fall & cooler weather (while my soul adores this time of year, my joints do not. my hands are already beginning to swell and ache again). there is something about fall that I find so inspiring. I feel myself turning inward as the weather begins to change. I head home, both literally and figuratively. I am washing up blankets and thinking about mittens for these aching hands. I am remembering all my favorite hot drinks: Bigelow's Apple Cider tea, Mexican hot chocolate, Pumpkin Spice lattes, and the list goes on.... I am dusting off the recipes for my favorite soups and breads. 

currently reading: under a wing by reeve lindbergh, daughter of famous aviator charles lindbergh & writer anne morrow lindbergh

and you?