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.

Using My Words

I have been focusing on the memoir I'm writing -- on loss, on love, on what makes a family -- and it has surprised me that the more words I use with my book writing, the less I seem to have for my journal or my blog. I keep coming back to this space, to say hello, or check in, and I just can't think what to say.

So hi and hello! I hope you are all well.

My husband celebrated a birthday last week and I had the pleasure of taking him out for a night. Here's a picture of us, taken in a mall parking lot, but reflecting happiness nonetheless.

We had dinner at Cheesecake Factory and got coffee at Starbucks and held hands and enjoyed hours with no sticky hands to wash or little bodies to buckle in and out of car seats. The girls had a great night having a sleepover at Grama and Papa's house.

I can't get over how blessed I am. Next month we are celebrating 9 years of marriage. I can't wait. I can't wait for that number to be double digits and then double and triple. 

I remember the longing to spend my life with someone, to be completely safe with another person. My husband is not perfect. I am not perfect. We are not perfect for each other. We are, in actuality, quite different. But I am safe with him. I know that I can tell him my dreams and my vision of the world and share my personal truths with him, and he will hold all of that safely.

This summer we're doing lots of reading around here, as all four of us are signed up for the local library's summer reading program. That means that, when I am not mothering and when I am not writing, I am reading. In one month I have read 6 + books and read several hours to the girls. 

We're definitely dripping with words around here, and we're not forgetting to use the ones we feel, like I love you. It's important not to assume that our family knows how we feel. Life is temporary. So we show and tell the love we feel, right now, while we can.

Are you using your words?

At the Feet of the King

Arthritis creeps into my feet and for a long week and counting they hurt incessantly. Trying to keep up with active little girls and domestic chores requires a lot of time on one's feet, and my feet aren't up to the challenge.

I try anyway -- to walk the good walk, fight the good fight, smile through the pain, and remember every moment how very blessed I am.

Because, you see, I have feet. Some people don't. I have medicine. Some people don't. I have a wonderful husband, and some mothers with chronic conditions do not.

At the end of a long week, after a grocery shopping excursion that leaves my feet feeling like they're on fire, I sit in a chair and put them up, because I just can't walk anymore.

My husband makes dinner, bathes our 4 year-old, and because he's not already busy enough, serves me strawberry lemonade.

After I hug them goodnight from my chair, our little girls in footed pajamas are tucked into their beds, kissed, and prayed over.

Jonathan returns and says, "Hey, don't you have a little inflatable foot soaking tub?"

Ten minutes later, he has arranged my chair, crafted a platform out of a Rubbermaid storage bin, draped a towel across the platform, and filled my (now inflated) foot tub with warm water and lavender scented Epsom salts.

My feet slip into warm water and when they emerge, the pain is all but gone.

---

Jesus once did something similar. He filled bins and knelt to wash His followers feet, and I bet that when their  feet emerged from the water; when their eyes met His eyes of love and grace, their pain (both of the flesh and the heart) was gone.

In this life, I may not win the chronic pain battle. People we love will die. But I think often of the day when I will look up and meet His eyes, and my pain (physical and emotional) will be gone. In that Holy presence, all peace, all hope, all love, all grace, all things good will soak through to the heart of His children and I can't even imagine what that will feel like.

I will sit at the feet of the King, and I can't wait for that day!

"And God will wipe away every tear from their eyes; their shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things are passed away."
{Revelation 21:4}

Mindsets and Moments: The Heart of the Matter

I see his coffee cup, left empty by the sink, and I long for a time when we will have more hours together; when we won't live so separate.

And I wonder if this is how God feels about us -- about me. That this is not how it was designed; that we were meant to be together.

Separation is not in the blueprints for sacred life.


Death, disillusionment, divorce: all impostors. None created by the One who only desires the very best for us.

The sacred moments of true togetherness -- when we are not only together in physical proximity, but also in spirit, offers glimpses of Heaven, His design. No competition, no conniving, no critical words slipping out unfiltered.

This is the heart of God: community, togetherness, grace. This is what we were made for.

So until I see him again, this man I vowed to walk through life with, I wash the cup and launder his clothes, and think about how to better show how I feel -- this love. And until I see Him, this God I vowed to serve, I wash out my heart and launder my judgment, and think about how to better show how He feels -- this perfect love.

Thoughts on Chronic Illness

"Is your back hurting you, Mama?" a cool little hand slides up my shirt and rubs my back.

Most mornings, my room is her first stop after waking. She slips in quietly, reheats my heating pad, and returns to tuck it over a nagging shoulder, a back that feels broken, or a throbbing hip.

Heat quiets the pain and promises soothe my fear.

His promise to love in sickness or in health.
His promise never to leave or forsake me.

Chronic illness crept in and changed our lives. It doesn't affect just me. It changes our marriage, our family; the rhythms of everyday life.

Today I sit in pain, as if a cloak of discomfort has been settled over my shoulders and wraps around my entire body. I feel like a turtle that just can't get up to speed. But I sit assured by the love my family has for me, something chronic illness hasn't changed. I'm still his wife, still that girl he fell in love with over a decade ago. I'm still their mama, and despite the limping and fatigue and feeling decades older than I am, I'm still the one who bakes cookies, reads stories, and braids wet hair.

I'm still me, and I'm still loved. Chronic illness doesn't change that.

Taking His Name

I pay for groceries and the check-out attendant says, "Thank you, Mrs. LeBlanc!" Sometimes they pronounce it correctly, but oftentimes they say "La-BLANK" or stumble over it apologetically.

When I married my husband, I wore a white dress, vowed to love and honor him through all my days, and became a LeBlanc. I took his name as my own, changing my driver's license and social security card to make it official.

When we become a Christian, we take the name of Christ and use it to identify ourselves. Lately I've been mulling over the seriousness of that name-change. If we profess to be Christian, we are "taking the Lord's name." We equate the command not to take the Lord's name in vain with profanity, but what if we profess to belong to Christ (we are His church, His bride, part of His family) and the name change is the only change we make? What if people stumble over the idea that I am a Christian; they had no idea or see nothing in me to merit the name-change?

What if His name, when used as my own, contains no value? Is that not vanity? Have I not, then, taken the Lord's name in vain? For nothing?

Jesus paid a high price for us. He has plans for us, for great futures of hope. He remembers us by the marks in His hands.

What can I give in return?

Always and Forever Love

This man I exchanged rings with, tall, dark haired, and broad shouldered, helps me tuck clean sheets around mattress, and tells me he is going to massage my back. This man, who lost sleep last night due to my pain-filled, fitful slumber, wants to help soothe the ache and the pain away, shoo it off so I can find rest tonight. He spends time massaging oil into my back and shoulders, calves and feet, kneading out the tension and soreness as best he can, before tucking me between clean sheets, plugging in heating pad to deliver warmth to my spine, and going to gather my nighttime meds and cold water.

He has always amazed me, this man, with his ability to love me so well. He has taken tender care of me post-op times five, when depression reared its ugly head, through loss & grief, through episodes of extreme pain, and now, when chronic illness came to call. 

And somehow, despite all of my weaknesses, this man, this one I love, is still happy to spend forever with me.

All I can think is that God truly knows my needs. And since He knows the end from the beginning and sees the future, He knew that I would need this man.

This man, with his unconditional love, has been the closest thing I have encountered to God and His “unbreaking, never-ending, never giving up, always-and-forever love.”*

This is how Christ loves us, His bride! Not willing to spend forever without us, despite our flaws and weaknesses.

How loved are we?

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*If you have young children at home, I whole-heartedly recommend the Jesus Storybook Bible.