Steamed Milk & Second Chances

Very little matters to me at the end of each day and the end of this life, if my girls don't know and feel, clear to the cellular level of their beings, that I love them. If there was a way to genetically imprint this message into their DNA, I would. 

I LOVE YOU. 

Sometimes things happen and maybe it's as inconsequential as a rainy Monday when the errands didn't go right and I end up in tears when we get home. Maybe it's bigger and I vent frustration, and while my words are accurate, the timing or the delivery misses the mark and a little girl gets tucked into a warm bed -- safe, fed, yet short on the connection she's come to cherish in our relationship.

It was a night like that, after a rainy Monday like that.

I closed their bedroom doors, and went to rest, somewhere past the point of totally exhausted. I put them to bed early because after a rainy Monday when you're past the point of totally exhausted, it's the easiest thing to do. 

But kids are just like adults, in that when things aren't right with their relationships, it can be hard to sleep.

Daughter #1 made a valiant effort -- lying quietly in her bed long past when I thought she was for sure asleep. Long past the point that Daughter #2 had been allowed back up for snuggles with the mama-with-the-half-mast-eyes. 

There might have been a bit of classic Winnie the Pooh on DVD in the big bed. 

I was ready to send them back to bed when I heard a little voice say, "I hate to tell you this, Mommy, but I'm hungry."

....deep breath....

We went back to the kitchen. Sat back down at the wooden table inherited from my paternal grandma. Two little girls in pajamas, one holding a doll, one, a bunny, both of which are well-loved to the point of Real.

My legs throbbed from referred spinal pain. It felt more like 2 a.m. than 10 p.m. 

I got out the toaster. 

A gallon of milk.

Two small glass tea plates.

Something in my spirit shifted, and I set about making a little late-night snack of cranberry-orange toast and warm vanilla milk.

I told them memories of visiting my maternal grandma and how she would heat milk for me to sip before we turned in.

Their sweet faces brightened, and their eyes began to glaze with dreaminess as they munched their toast spread with cream cheese, and drank their cobalt mugs of steaming milk.

At that moment, I knew this was the right way to parent. This night, for these girls, these hearts. The right way to love them was to send them to bed with hearts dosed full with love and nostalgia, warm, full tummies, and snuggles in the rocking recliner.

I'm grateful for the times when bad days get second chances, and second bedtimes lead to sweet dreams.

Wings: The Perfect Accessory

If you follow Live Art.fully on Facebook, you've no doubt noticed a theme over the last months.

WINGS

What does it mean when I say Use Your Wings, Rest Your Wings, Put On Your Brave Wings?

A couple of months ago, I had a week where my sacroiliac joints (the joints that connect your pelvis to your spine) were really flaring. They were swollen, which made them feel as if they were trying to jut through my skin. The pain was impressive. It was a week of Keep Going, just like almost all weeks -- do the laundry, do the dishes, clean the house, vacuum the floors, drive daughter to dance, pick up daughter from dance, take other daughter to the library, get groceries, rinse and repeat. 

Sometime during that week I realized that it felt like giant metal wings were trying to grow out of my back. Perhaps that's graphic, but as a writer and as someone with chronic pain, it often helps me to put my pain into words. I find it helps separate the pain from my self, if that makes sense.

As you can imagine, having metal jut out of your body isn't a good feeling. I've had this description crop up even in my sleep. Once I was having severe chest pain in my sleep. I dreamed that I was in a lot of pain, lifted my shirt and there was a bunch of metal that had erupted through my chest. In the dream, I very calmly noted this wasn't good, went to a doctor, told them I had Ankylosing Spondylitis and showed them my metal/chest. Ha!

So back to the Giant Metal Wings week, I realized that if instead of thinking, "My back is in such pain!", I thought of the pain as Growing my Wings, I could handle it better.

I wrote a little poem that day which included a line that said "my back grew wings." It was a symbolic, positive way of expressing my pain without spelling out the horror.

Famous artist Frida Kahlo was severely injured in a trolley accident in college and spent the rest of her life battling severe pain. She's quoted as saying, "Feet, what do I need you for when I have wings to fly?"

That quote has become one of my favorites. When I'm having trouble with my mobility, I tuck that in my proverbial pocket and choose to "fly" for the day. It then doesn't matter if I'm in pain or if my feet aren't working properly or my hips or my knees, because I have wings. It's a mental game really; it's how I {Rise Above}. I find these mental games, and word phrases and images are a vital part of my pain toolkit. Maybe it's because I'm a writer and words hold such power for me, but I find that if I can just determine the right way of looking at things, I can soar.

Now when you see things in my art about flying, soaring, or wings, you'll know what it means. For me, more than anything, it's realizing the power of a positive attitude, and putting on that attitude like armor.

I may wear lounge clothes, a dress, or jeans, but I often add an invisible accessory, my wings!

She Chose to {Rise Above}

{Original Art Journaling by Jennifer LeBlanc 2013. All Rights Reserved}

Inspiration for my various creative interests hits intermittently. This week I was driven to the Mod Podge and messy art to hammer out a theme that was floating around in my thoughts for the last two weeks:

Rise Above

I don't know any women who aren't battling some kind of personal war. Maybe it's a health condition (I personally know women with Stage IV cancer, CFS/ME, Fibromyalgia, thyroid conditions, Rheumatoid Arthritis, Diabetes, Ankylosing Spondylitis, Interstitial Cystitis, chronic debilitating dizziness, migraines, chronic pelvic pain, and the list goes on...). Maybe it's navigating the waters of divorce, single parenthood, raising a child with special needs. Maybe it's depression, anxiety, financial stress, job stress, toxic family members, going back to school, or loss and grief.

What's incredible is that most of the women I know consistently deal with more than one challenge at once. And they show incredible strength and courage as they do so.

{Rise Above} is a spread that wanted to show that process. How it looks in my life. Your Rise Above spread would likely have different stones of difficulty at the bottom, and different clouds of creatively rising above.

Some of the stones in my life are Ankylosing Spondylitis (AS), miscarriage, multiple surgeries, pain, missing my child who never reached my arms, and severe fatigue.

What are your stones? What stones do you see women around you overcoming?

I love the layers of meaning in this spread. The lady has lassoed her dreams that are seemingly unattainable. She is holding them like balloons or flying them like kites. They are pulling her up, hot air balloon style, in her cage of difficulty, helping her soar above the stones that could trip her.

She's using her dreams to help her rise above. 

Another thought I had while working on this spread is that our stones of difficulty can either be stumbling blocks or stepping stones in life. Which are yours? 

You might use this as a prompt for journaling or an art project. What are your stones and how do you rise above? Or take a few minutes to jot a note to someone you see fighting to rise above. Tell her you admire her strength, offer help, or drop off flowers or cupcakes at her door. There is perhaps nothing more inspiring than women coming alongside other women. 

A Different Kind of Love Story

"How could one person, not very big, leave an emptiness that was galaxy-wide?"
{Sheldon Vanauken, A Severe Mercy}

Dear Jordan,

Seven days ago I was walking around, alone, in Target... something that rarely happens. I passed the baby section and felt it again, that pang of loss. That deep ache of missing you. I have had the gift of giving birth to two healthy babies, your sisters. I have had the experience, twice, of caring for a newborn, of nursing and sleep deprivation, and I have raised them past infancy, past toddlerhood, past the preschool years. Your sisters are now six and nine. I don't take that gift for granted. But it doesn't erase the pain of what I missed out on with you. You are unique and I lost you.

There's just one you.

Which is why the tag on a small soft elephant designed for babies slays me. The tag that says Just One You. Carter's is so right. Each baby is a precious, irreplaceable individual. That's why the part of my heart that belongs to you will always be empty. Because you aren't here to fill it.

You are forever a baby in my mind. I cannot imagine you as a school-aged child. You are only what you ever were -- a tiny baby unblemished by the hardness of life. You are only love.

To talk about you is to validate you as real. You were not a dream or a nightmare. Seven years down this road, when I mention you, people may assume I have not healed. This is untrue. I write about you to honor you as my child, and to record you as part of my legacy. I talk about you to untangle the ethereal thoughts and emotions, to sort what can't always be sorted.

I speak of you to give myself the gift of loving you out loud.

Ours is a different kind of love story.

Joy in the Brave

I’m going home from a nearly three week long trip. I’ve traveled from the west coast to the east coast, from the Pacific to the Atlantic, by plane, car, and ship, and I’ve learned some things about myself and about traveling. I’ve learned some things about life. And it’s good.

I’ve been so eager to share with you all. You strong women who battle hard things on a daily basis and maintain your joy and humor through it all.

You whose child has autism, you who has constant dizziness, you who lost your mother and is still learning to navigate life without her, you who is fighting cancer they say may be terminal, you who lives with severe daily pain, you who fights the urge to starve your body or overeat, you in a stressful workplace;  you who lost a friend, you who is a single mother while your husband is deployed, you who grieves the loss of a child, you who is climbing the mountains of your own war.

You the collective brave.

You are strong women, and it’s my humble pleasure to hear from you, to learn your stories and trade encouragement.

I’m writing this post on a seven hour flight. My daughter is beside me, her arms embracing two stuffed bunnies and a cat. I sip cranberry juice and peer out the window at clouds beneath the wings of this mighty metal bird.

I think of each of you and your stories, and I am grateful. I’m grateful to have gotten to know you, and grateful for your emails and support of Live Art.fully, my cyberspace corner. Live Art.fully is like a little cottage where you’re welcome. You’re invited in for warm muffins and hot drinks in the winter, and lemonade in the summer. You’re welcome to recharge here and tell me your story, and I’ll tell you mine too. As Pooh and Piglet agree, “It’s friendlier with two.”

As I told you in my Attraversiamo post, traveling hasn’t been a strength of mine. I’m not afraid. I know people who suffer from anxiety when flying or driving, and that isn’t my problem, it’s just that I feel off-kilter and unbalanced when away from home and what’s familiar. The last few times we flew, I had a baby along each time, and my idiosyncrasies and weaknesses became amplified by jet lag, time zone changes, and sleep deprivation from a teething baby or a toddler unfamiliar with her new sleeping quarters.

To tell the truth, I was afraid of my own ability to handle traveling so far, for so long, staying in a house with so many people and not having the solitude I’m used to. I was worried about my pain levels and whether I’d be too ill to manage two cross country flights. I didn’t want to be problem for those around me. I didn’t want to be miserable. I didn’t want to make a scene.

It’s with relief and deep gratitude that I share that the trip went well. AS didn’t stay home; I still had pain every day. I still had to manage stiffness and fatigue. Some of that was worse, given the beds that weren’t my own. It was hot where we went, at least compared to what I’m used to, and muggy. I was thankful for air conditioning and ceiling fans in the rental house we stayed in with my husband’s family.

We ate out and cooked in, and rode the ferry and swam in the ocean, and stayed inside out of the mid-day heat some days. We got grape slushies and ice cream, and visited the marina to look at the water and boats, and walked the island and looked in shops.

One day, our last full day on the island, my sisters-in-law and mother-in-law and I went shopping. My knees were bothering me and I was running low on energy. I found a public hammock and “hung out” between stores. Only on an island can you do that, a shopping mall just doesn’t have that same perk!

After shopping we found a restaurant screened in like a porch.

“Four for dinner?” asked the hostess.

“Four for dessert,” we replied, giggling.

It was a special time, sipping our decaf coffee and laughing. We ordered all four desserts on the menu and split them each in quarters to share. It was the day after International Chocolate Day and we celebrated aptly with mocha swirl cheesecake, chocolate chess pie, and chocolate pecan fudge cake. It was glorious, the hours of being with women and only women.

“It’s so much easier [browsing shops] without the kids,” I commented to my sister-in-law.

“I know,” she replied, "I haven’t had to tell you to behave yourself even once.”

I got to meet nieces and nephews, and get to know my husband’s siblings better. I loved that.

I wore a swimsuit and went without makeup and got in the water and did many things outside my comfort zone. And you know what I realized? I realized that there is joy in the act of being brave. Not just relief in getting through it, not just pride in having done it, but JOY on the other side of the fear. You might get knocked over by a wave and get water up your nose and scrape your knees on the abrasive Atlantic ocean floor, but when you come up out of the water, you haven’t drowned. You’ve survived.

If you pass by your chance to be brave, you may miss the unexpected joy that is waiting for you.

Some of this may seem trivial, but another thing I realized is that fear is fear. My fears and discomforts may be vastly different than yours, but they are no less scary and uncomfortable. When I rise above my fears, I am being brave, even if the same thing would not require courage for you. It’s good and right that we celebrate our victories, big or small.

There were hard times and good times, magical moments and moments I was desperate to go home and could not.  It was a long journey. But I found my joy on the other side of being brave, and that was perhaps the most unexpected gift of this trip. It was my gift by the sea.

Attraversiamo: On Traveling with Chronic Illness

Attraversiamo. In Italian, it means "cross over."

That's exactly what we did last week. My husband and our two girls and I, we crossed over the country.

We traveled from sea to sea; from the northwest to the southeast. We started  in a region of tall, green trees, rain, and coffee and ended in a region of bugs, humidity, and sweet tea.

This journey far surpasses any I have taken in years. It consisted of two cross-country flights, a rental car, two nights of hotel stays, two weeks of beach house stay, and two days of driving.

Even before chronic illness reared its ugly head, traveling was not my strong suit. I do well with home, with the familiar.

Months ago, when we first began planning this trip, I began trying to change my way of thinking. Instead of thinking of worst case scenarios that could happen while traveling, I began to consciously look forward to specific things -- the beautiful pictures I would take, my girls' excitement to see a new place, getting to know my nieces and nephew, and spending time with my husband's family. I allowed myself some new stickers and papercrafting supplies to document our travels. Instead of feeling stressed, I tried to change that feeling to excitement.

It didn't completely change my normal ways of thinking about travel, but it helped.

In the airport, being pushed in a wheelchair to save my hips and knees, I remembered the reason for this journey. Gorgeous piano music in the airport was playing, "It is Well With My Soul."

In the middle of a long day of travel, somewhere in Nevada, I hit the wall. Going on about 1.5 hours of sleep the night before, I was exhausted, hurting, and still had hours to go before I could find a comfortable chair or a place to lie down. I began to cry and felt myself slipping into my old ways of thinking: I'm not good at traveling, I can't do this, I should've stayed home, I want to go home.

I went in the ladies' room and cried for a few minutes in a stall, and then I dried my eyes and reached way deep within for strength and inspiration. I remembered that I am Brave Enough, and we trekked on.

And we made it. Here I am in the land of bugs and sweet tea; on an island with beautiful warm water.

Here I am, crossed over.
I call it a gift -- the opportunity to do this trip. I call it an adventure. And for myself, I call it brave.

Attraversiamo -- how will you "cross over" your fear?

Willingness to Grow

"Allow events to change you:
You have to be willing to grow.
Growth is different from something that happens to you.
You produce it.
You live it.
The prerequisites for growth:
the openness to experience events
and the willingness
to be changed by them."
 {Bruce Man}

On Grandpa and Things That Don't Come Easy

It's a cold and rustly February night and I lie in bed. I am sandwiched between heating pads, swaddled in ivory flannel pajamas and a fleece throw. I wear glasses and my knees rest on two pillows. I hear the constant trickle of the fish aquarium and the fainter, distant hum of the bathroom fan. I still and concentrate. Other than occasional rumblings of traffic, this is all I hear. I've gone to bed early, a hip throbbing and a mind too busy for such tired eyes.

Today I got a cane.

I think about canes and I remember Grandpa Jim. I remember his cane propped here and there; hanging from the handle of the Safeway cart. But he was in his eighties. I am exactly half a century younger than he was when he died, six years and one day ago.

I miss him. I miss his Eeyore personality and his big knuckles. I miss our chats which were slow and speed-bumped. I would sit and know that there is value in things that don't come easy. I miss his world of blue.

So I am 32 and I own a cane. How to feel about that?

Is it necessary? No.
Will it allow me to be out more? Maybe.
Will it help my joints not take so much strain? Yes.

So it's a good thing then.

There is value in things that don't come easy.

Story Made Beautiful

I want to thank you for being here with me Thursday, as I used some of my courage to not only remember our baby {that is so easy to do} but to speak his name.

Jordan.

Your comments and your tears were a gift, and I thank you.

6 years. Shocking that it has been that long, but as you know if you've read this story before, I had a healthy child afterward, in the midst of some years which are easiest to describe as the years of Perpetual Operations.

Not only was she healthy, she was hearty -- born pink, crying, 9 pounds and 8 ounces of second chance.

Today she is tall, lanky, and turning FIVE this month. A "rainbow baby", or baby after a loss, she is my breathing representation of grace; a symbol of God's presence in my story.

We named her Natalie Kate.

Having children was my life-long dream and there were a few times when I thought it might not come true. Life threw obstacles. And yet, here they are, these little women, my dreams come to life.

So humbling. So humbling that He saw fit to allow me to be a mother, their mother. So humbling that it worked out, in spite of, despite, the obstacles.

I am so grateful. Soaked through to the bone with gratitude. This was what I yearned for, and they are here. Not all three, no...

Not all three, and that is hard.

But these two, Hannah and Natalie, they are here and they are breathing and growing, and I breathe thanksgiving and grow faith.

He has made my story beautiful, even with not-so-beautiful ingredients.

Breathing gratitude today.

Not Good Enough vs Just Right

As hard as I try to convince myself otherwise, there are going to be some days in which I can't succeed like I want to; success won't look like I envision. I won't be able to make my life look like what I think it should. It will be exhaustion and low-grade fever and pain that's hard to bear.

It will be a cottage full of Mama Bear and Baby Bears in pajamas at nearly 3 p.m.

That's chronic pain for you. That's chronic illness.

It will also be a chance to slow down that we wouldn't otherwise take; a chance to wear fuzzy pink slippers and bathrobes and pile into a big bed that's just the right size and read a big pile of storybooks.

It will be time to learn some Spanish. Time to discuss manners, sibling relationships, trying new foods, the science in the natural world.

It will be time for cuddling close -- for a 4 year-old head on my shoulder, and a 7 year-old hand, tanned brown from summer sun, resting on me.

It will be time slowed down.

And this evening when Papa Bear comes home from work, the house may not be clean, the table may have gone unused for schooling, but we will be calm and loving, and we will have learned and grown today, and we will be a little bit closer for this time we told to slow down and the hours we cuddled close and knit our hearts together.

Isn't that the success I envision?

What's Next in This Chapter?

After years of slavery, the people of Israel have escaped from captivity in Egypt and run into a big problem -- the Red Sea. The Red Sea lies between them and their freedom. Their hearts sink. There's no way for them to get through it or around it. They feel defeated.

But then they call out to God, questioning His plan.

"Why did you bring us out here to die in the wilderness?"


And Moses tells them:

"Don't be afraid. Just stand still and watch the Lord rescue you today. The Egyptians you see today will never be seen again. The Lord Himself will fight for you. Just stay calm."


{You probably know what happens next. God performs a miracle. He uses the Israelites' faith.}

He instructs them to get moving. To pick up their staffs and raise their hands over the sea and walk in.

So they do.

Let's just stop there a minute. This whole story could've ended another way. The Israelites might not have listened. They might not have used their faith, listened to God, and walked forward. The Egyptians would've caught up with them and re-captured them.


But they listened. They did what God was instructing them to do. They held onto their faith and their staffs and they moved forward.


And God performed a miracle. He divided the Red Sea into two parts, with an aisle of dry land between two mighty walls of water. The Israelites walked through, unharmed, and then God returned the water to normal and it swept over the Egyptians who were chasing the people of Israel and the Bible says that not a single one survived.

In the same chapter as the Israelites thought they would escape, the feared they would not. And then they were delivered.

Their Deliverer showed up!


And in the very first verse of the next chapter, the people of Israel are praising God for rescuing them and for granting them true freedom.


How does this apply to your life today?

In your current chapter of life, where are you? Are you trying to be free? Are you facing a huge barrier that seems insurmountable? Have you called out to God with doubt? Has He answered you yet? Is He rescuing you? Has He delivered you? Are you free?

A lot can change in just one chapter.


Just hang on -- the Lord will fight for you.

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?

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.

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.

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?

Guilt and the Chronically Ill Parent

From the age of three I longed to be a mother, and it never occurred to me that for reasons beyond my control that might prove difficult.

I have lived with chronic pain since before my oldest daughter was two years old. By the time she blew out five candles, I'd been to the Operating Room five times.

Throughout my life, despite a loving, stable family and good upbringing, I have encountered health challenge after health challenge. Just as I had prior to motherhood, I fought to rise above and not let my health overcome the person I wanted to be and the life I dreamed possible.

I searched for treatments that would fix the problems and continued to fight to overcome, or at least diminish, the pain so I could be the best mother I could be, not offer my daughters only a portion of my attention, love and energy.

Sometimes it feels that as soon as I rise above one problem, another surfaces. When my oldest was six and my youngest three, I was diagnosed with a disease that had also attacked my father when I was a child, Ankylosing Spondylitis.

As difficult as it is to be elderly and stiff, in pain, and have trouble getting around, imagine those problems when you are 30, with a job, a household, and small children. Arthritis, unfortunately, does not only effect the old. Diseases like Ankylosing Spondylitis and Rheumatoid Arthritis typically strike between the ages of 15 and 50.

And so it is that I am raising my young daughters in constant pain with a body that operates like it's 80.

Determined not to feel guilt over the worry and strain my disease places on our young marriage and family, I become very clear on exactly what I want my daughters to remember, on the childhood memories I want them to have, and most of all, the mother I want to be, and then I work twice as hard and resolutely to be that mother, to create those memories, and to make the love I give so strong and the legacy I leave so rich that it overshadows the pain and the slower pace with which we must live life.

Guilt is easy to feel when you are a parent and even more so when you are a parent with chronic pain, but I will continue to do what I do best: love my girls. True love defeats fear, defeats guilt, and will defeat chronic illness. I will be a good mother because I will make it my biggest priority to love well.

The Story of Live Art.fully

The year I turned 30, between two trials in my life, I adopted a way of looking at the world. It is a perspective, if you will, that is much more than two words can contain. I dubbed it Live Art.fully.

To Live Art.fully, bare bones, is to live fully, using art. But how do you live fully? And what if you're not an artist? Then what?

I spent most of my life convincing myself I was not an artist. I was creative, yes. I was a writer, or at least wanted to be. I doodled, wrote poetry, and scribbled endlessly in spiral bound books. I read voraciously. I loved hearing people's stories and at times, liked to tell my own, especially through the medium of writing. I loved drama & acting. I dabbled in music, learning three musical instruments and singing, but mastering none. I liked taking pictures. Through school, personal, and professional endeavors, I learned elements of design, layout, formatting, writing, editing, and publishing.

But I was not, absolutely not, an artist.

What I have learned is that what I do, all those outlets of creativity, is art. My life is an artful life.

Everyone faces obstacles in their lives, some more than others, and everyone has their own tragedies. I am not exempt from that, and have experienced many things in my life that were painful. You have read about some of them in previous posts.

What I learned, and still learn nearly daily, is that growth is a choice. We can take these hard things and let them help us grow. It's not easy. It's not pain-free. It's very difficult sometimes. But I can use my...

courage

resilience

honesty

positivity

faith

writing & art

...to heal, to grow, to process, to learn, to truly live an artful, authentic life.

If and when I fall, I get up. And so do you.

Bumper Cars and Spaghetti

The thoughts in my mind today are like bumper cars. Just as I focus on one, another comes from behind to jar it out of the way, leaving a bit of whiplash. Knowing where to begin to process and learn is like searching for the end of the spaghetti noodle in a twirly heap of saucy mess. Here is my attempt at separating out some spaghetti and making the bumper cars stand still for just a moment.

Never underestimate the value of parents.

Never underestimate the value of the family we choose.

Never underestimate the power of words ... how they can inspire, lift up, tear down, and create that "aha" moment that helps us understand ourselves and our tragedies and victories.

Learn to apologize when necessary and forgive when necessary and let it all go, knowing that the good always outweighs the bad, and life is always worth living.

Appreciate the balance of good and bad, effortless and difficult. For it's when the hard comes that we more fully appreciate the easy.

Always value life. Know that every year will bring new goodness and new heartbreaks and it will all offer lessons.

Search out and celebrate the small things, like a steaming cup of tea, or the daily requests of a sweet 4 year-old for morning pots of healthy oatmeal, dotted with fruit and cream. The heaping baskets of warm clean clothes, the perfect shade of lipstick, the lingering hug and the laughter that slips out unbidden.

Life is a grand gift, and the hard times help us learn, help us grow, help us become.

So write your story. Sing your song. Make your mark. There is only one you. And remember too, that you influence those around you, so guard your words and your actions and focus on the building up, which is always its own reward.

Never take for granted the people and the abilities of today. It is all a gift.

The Art of Letting Go...

Throughout the years I have had opportunity to learn how to let go. Of dreams, of capabilities, of loved ones, and even a child.

Now I am learning, again, how to let go. Throughout these last 16 months I have not been physically capable of doing things I want to -- I have missed a school field trip I wanted to attend with my daughter, I have not been able to take my walks anymore, I have not been able to drive myself and my daughters long distances anymore, due to pain and fatigue. I am not able to domestically whirlwind through the house anymore, due to lack of energy and limping. For now, I have let go of journaling retreats. I can't even sleep normally anymore.

I had a thought today... What if every time I have to let something go, I pick up something new?

What if I install new dreams and new goals and new activities that I can do?

What if when I lose out on one child, I gain another? What if since I can't have more kids due to my health, I sponsor one due to the love I still have to give?

What I'm learning is that this is the art of letting go. This is how to retain joy when sorrow comes knocking. This is how to reinvent myself. This is how.

Thoughts over Coffee by the Sea

My husband says, when his black Americano turns out to be really bad; burnt, "Cream and sugar are the great equalizers."

And so it is with attitude and perspective -- they are great equalizers in a disease that is really bad and burning my joints through with fiery inflammation. Leave it alone and it's really bad, add the great equalizers of a good attitude and positivity and the cup of disease is drinkable.

If this disease is going to make things worse for me physically, I need it to make me better some other way, so I choose, everyday, to stay as positive as I can. To focus on the beauty of the present, wherever I can find it.

I may not be able to find any beauty in the fact that my mobility is adversely effected, so instead I focus on the sound of sea gulls calling, foghorns bellowing, the feel of hot sun on my aching back, that my hands work to use this pen, the cool breeze on my bare feet, the smell of salt in the sea air; that my view from this cafe's sidewalk is brilliant blue dynamic ocean, rippling and ever-changing with the blue sky reflecting off it, making shimmery silver areas of surface and tide. Puffy white clouds punctuate the sky like polka dots on indigo fabric. A planter box of blooming flowers grow in the midst of contrasting concrete.

I have a fever today and I'm tired and I had the option of staying home and taking a nap, but I chose to go out and sip a latte and see the ocean. When put like that, of course it sounds like an easy choice, but it's not always. Everyday there's at least once when I think, "I'm not sure I can do that." But everyday I say, "I'll try."