Evening Hours

we tuck in little girls and fulfill requests like
more light, less light, music, fresh water.
we hug, kiss, pray.

we close the door with "goodnight little girls":
"mama loves you. tomorrow is ballet and we'll make art," i say on a monday night.
"i love you, you can wake me up in the morning and we'll play Wii," he says on a saturday.

there may have been baths and hair braiding first,
a pile of giggling in the recliner over Junie B. Jones
or chapters of  The Jesus Storybook Bible, Mama reading through grateful tears.

we may be at the end of what we have to give,
or we may reluctantly tuck them in,
wishing there was more time in the pockets of today.

the evening comes every 24 hours
and it looks different, yet the same
because no matter what, there is love,

always love


and the winner is........

Sheila wins the DaySpring giveaway for $20 off a $20 or more purchase. I will be contacting Sheila with the code and details.

Thanks everyone for participating and congratulations to Sheila!


Using Your Words: Sending Cards to Encourage a Heart

{my little 5 year-old writing a Happy Birthday card to her sister}

I have always loved writing notes and trying to encourage people. When I was little, whenever we would get together with my cousins, I would always rope my (just younger) boy cousins into creating cards and notes with me and then we would hide them for our moms, aunts, etc.... to find. We once hid one in my aunt's mini-van gas tank (not in the tank, just tucked in there behind the door, so that next time she had to get gas, she would find encouragement. Yes, so very sweet of us....

I am a big fan of cards and love to mail them. I could spend hours in card stores, and have.

So when (in)courage gave me the opportunity to blog about DaySpring cards in exchange for some of their beautiful collections, I didn't think twice.

The afternoon that FedEx pulled up to my house and the delivery driver handed me a box was a good day indeed.

I received these beautiful cards -- the So True collection, designed to encourage women in your life. This collection of ten GORGEOUS cards (I hesitated to mail any I loved them THAT much), includes cards for birthdays, thinking of you, encouragement, praying for you, and general friendship. Each card has a hand-made element included like a hand torn layer. They are truly above and beyond what I expected and I am sure I will purchase this collection when I've run out. Also, did I mention the envelopes are a recycled looking brown? LOVE. I also received a pack of Thank You cards and a beautiful card organizer.

I have been a fan of DaySpring for many many years, but I have to say -- the quality of these cards is truly impressive. These are just fabulous.

I sent one to a friend who has recently experienced a devastating loss. I earmarked one for my aunt's birthday and one for a friend battling cancer. I can't wait to drop one in the mail to a friend with chronic illness and to a friend of little kids who is still in that "in-the-trenches-survival" mode. (Who am I kidding, I still feel like that sometimes too.) I also have one set aside to send to a friend who is quietly loyal and supportive of me, my health, my journey and all of my creative pursuits. Everyone should have a friend like her.

You never know how God can use your words to uplift and encourage a heart.

If you're not a card person but you adore the So True collection designs, check out the entire collection, which includes calendars, mugs and journals.

So I was lucky to receive this collection free in exchange for my honest review, but it's your lucky day too, because (in)courage and DaySpring are offering one of YOU $20 off a DaySpring order of $20 or more. So we're going to do a Giveaway!!!! To enter, leave a comment to this post (and maybe share about Live Art.fully on Facebook, Twitter, or your blog, if you're feeling generous). My girls and I will do a drawing on Monday, January 30th and post the winner. I will then get in touch with the winner via email with the code DaySpring gave me. When using the code, the winner will be responsible for shipping charges. The code expires on 12/31/2012 so you have almost a year to use it.

So are you in? Let's use our words to bless someone this week.


Physical Therapy & Finding the Balance with Ankylosing Spondylitis

Several months ago I wrote a blog post outlining my current condition with my hips and walking. My post ended with a declaration that I would keep fighting to find the balance. I've been meaning to write a follow up to that post, to tell you what's happened since then and what I know now that I didn't know then.

In that post, I had a lot of questions. I wanted to walk outdoors for exercise and to help my joints. I discovered very quickly that didn't help, but caused a spike in pain, fever and limping. I had a lot of questions about the condition of my hip joints and at that time was dreaming frequently about limping, hip replacement surgery, and treatment options for Ankylosing Spondylitis, the form of inflammatory, autoimmune arthritis I have that attacks my spine and joints.

I wanted to know if my hip joints were damaged.
I wanted to know if I pushed through the flare ups caused by walking, if I was damaging my joints or helping them.
I wanted to know what might be in my future, as far as mobility. Would I need a cane or wheelchair, would I need hip replacement surgery?

Since that post, I have had a CT scan of my pelvis and hips, a physical therapy evaluation, and 3.5 months of weekly (sometimes twice weekly) physical therapy. I have some answers and insights now, and the dreams about hip replacements have stopped.

I learned from my scan results that my hip joints are still in good condition and that my SI (or sacroiliac) joints (the joints that connect your hip joints to your lumbar spine) are showing damage.

I learned from my physical therapy evaluation that my SI joints were extremely unstable. I was walking very sloppily, my joints too loose in their sockets.

I learned that my hypermobility (fancy word for joints that are way too flexible) on its own would eventually cause problems, but paired with Ankylosing Spondylitis will increase and speed up the damage to my joints.

I learned that with the level of inflammation in my body, any extra walking (especially if I am already in a flare, having hip pain or limping) is not advised and will damage my joints.

This was and continues to be, very helpful information for me. I began to work hard in PT to strengthen the muscles that surround and support my joints. I worked to improve my posture so that if my spine fuses into a locked position, I will be less likely to fuse stooped over. I did exercises at home. I faithfully went to my PT appointments in all kinds of weather, limping or not, with a fever or not, exhausted or well, to tell the truth, I'm almost always exhausted.

I strengthened my muscles. I improved the stability of my joints. I improved my posture (but I'm still working on that and likely will be for the rest of my life). I had evaluations of my shoulders, spine, chest bones.

I 'graduated' from physical therapy about a week ago. I adored my therapist and will miss her.

So how am I now? I still limp sometimes, but when I walk more than usual (say at a mall or Costco), I am less likely to be limping or limping as dramatically afterward. I still have hip pain, but I have less sleep disturbance due to hip pain. My hips, which had referred pain from my SI joints, and pain from inflammation in the actual hip joint, are causing me less worry. You can no longer find me Googling "Hip Replacement Surgery."

I still have pain in pretty much every joint in my body -- from my jaw to my toes. I still limp sometimes. I have spine pain every day. If I use too much energy, walk too much, or am on my feet for too long, I pay for it. I still run low-grade fevers fairly often, especially when I am in a flare, or have been pushing too hard.

I cannot walk for exercise, as much as I crave my old routine.

The ideal forms of exercise for me are low, to no, impact. That means mild exercise in the water, home physical therapy program designed specifically for me, etc. I cannot and/or should not walk much, run, jump, skip, hop, play most sports.

I can deal with most of that, but I gotta tell ya -- I MISS WALKING.

If you can walk, will you do me favor? Will you go for a walk sometime in the next week or two for me and take a picture of yourself? Will you post it in a blog post and link up in the comments of this post, or post it to the Live Art.fully Facebook page? Will you breathe deeply and look for things like birds, sunsets or sunrises, black tree silhouettes against sky, clouds, or natural bodies of water? Will you take a picture of any beauty you find? Will you enjoy your walk for me? I would love to hear about your walk through beauty.

So where do I go from here? I keep doing my home exercises, I keep working on my posture {STAND TALL!}, I breathe deeply to expand my chest and rib cage regularly to hopefully prevent that from fusing. I try and listen to my therapist and work on energy conservation and resting and asking for help and accepting help.

And maybe, when spring comes, I will swallow my pride and get a wheelchair and let my family take me on their walks. Someday my disease process may run its course and allow me to walk as much as I want again. I am hopeful for that. But for now, in order to take care of my body the way it is currently, I will try not to damage it further by causing it extra wear and tear.

I will live with hope. I will watch my daughters learn the graceful art of ballet. I will stand tall. I will breathe deeply and keep smiling, because life is beautiful and every moment is a gift. And yes, as always, I will keep fighting to find the balance.


Eight Candles

you make art
you dance
you love without condition
(like so many other things, you got that from your daddy)

may you always see life creatively
may you always express yourself
may you be loved as well as you love others

happy birthday to my firstborn
eight years old today
hannah elizabeth

a little girl who taught, and teaches, me
so much about life and beauty and
how to love with my whole heart


Staying Awake to Life

My word this year is more active than last year's. Last year I chose Still. This year I choose AWAKE!

I want to stay awake to the moments. I want to wake up and not just dream dreams but take steps to make them reality.

So far so good this year....

I have dreamed of enrolling my oldest daughter in ballet classes since she was about two years old. She is turning eight this week and she and her sister will attend their fourth ballet class.

From the age of five, I have loved reading. I read voraciously through my childhood and when I stopped to take a breath, around the age of twelve, I realized I was also a writer. For years I have dreamed of writing a book. In 2007 I started one. I began to tell a story about a man who experienced heartbreaking loss and  unconventionally learned to love again. That man is my late grandfather. I write in fits and starts, around other dreams, goals and responsibilities. Last summer I was on a roll. This year I dove back in, and finally chose a title, after 4.5 years and many working titles. I emailed a NY Times best-selling memoir author and teacher. I got serious about telling this story.

This year, I want to learn to stay awake to life: to invest in what will help us grow; to continue to capture the moments and the beauty all around; to say YES to life!


Christmas Moments

It seems Christmas season rushes past faster and faster every year. I tried to stay awake to the moments this year (not easy with chronic pain and fatigue) to take a snapshot (literal or mental), to jot down something the girls said, to remember how that mug of peppermint hot chocolate tasted and how the sound of the music and the glow of the lights came together to make the magic I look forward to every year.

Now that it is over, the lights and ornaments packed away in their Rubbermaid bins, the naked tree discarded behind the house, the cupboard absent of the mugs sporting snowmen, doves, holly berries.... Now that it is over, I want to look back and remember some of our Christmas moments.

There was the annual Sunday morning that begins with pumpkin pancakes and coffee and the buzz of beginning-of-the-season excitement. We went to the tree farm and made small talk with the owners and chased little girls through tree acreage and snapped pictures. I kept reminding us all to "think small" because we have a little house, practically a cottage, and every year we end up with a tree that is far too big and Jonathan has to trim it significantly to get it to fit. The Think Small mantra worked and when we got our tree home it was the perfect size for our cottage... not too big, not too small, but just right.

There was the shopping trip where we found the perfect matching Christmas jammies for 5 and 7 year old sisters. There was that moment in the girls' clothing section of Target when I closed my eyes and breathed gratitude for my family and for Christmas and the meaning behind it, and felt the anticipation of the coming weeks and all the precious moments we would share and the memories those moments would make.

There was the afternoon that my older daughter and I went to see a local production of The Nutcracker and I sat in a flip-down red auditorium seat and ignored the pain as best I could and observed the art of ballet and the wonder in my daughter's eyes.

There was the moment, later that night, that we created a new tradition -- the First Annual Sisters' Christmas Tree Slumber Party, where we set up sleeping bags on couch cushions as near to the glowing Christmas Tree as possible, and we put on our pajamas and got cozy and watched Christmas movies and drank peppermint hot cocoa and giggled until hours past bedtime, and then I tucked them in and stayed quiet at the other end of our little cottage while they fell asleep to Josh Groban's singing and the smell of noble fir.

There was the moment before Christmas Vespers, where I curled ringlets into blonde hair and the moments later that night where Hannah and five other little girls represented angels in a live nativity.

There was the moment when we left Christmas vespers and I said, "I have a fever," and I got home and I did, and I could barely limp down the little hall to my bed that night. But those aren't the moments I want to remember, they are just the moments I want to rise above. However, if someone with a chronic condition has any tips for how to make a magical, memorable Christmas for kids without going into a flare, I'm all ears.

There was Christmas church wearing red and black all together and standing in the front of the church with my parents and my daughter and singing "Go Tell it on the Mountain" with a big smile on my face.

There was time with my parents and my sister and good food and moments all hovered around the island laden with Mom's traditional goodies like fudge and English toffee, while we snacked like happy vultures and joked. 

There were many Christmas movies and many Christmas CDs and the Gingerbread house and the cookie baking.

There were many resting moments where we pair a heating pad and recliner with snuggling time.

There was the moment we captured when Natalie helped Daddy prepare Christmas dinner yams.

There was Christmas day when the four of us gathered around a candle lit dinner, and I snuck a bite of yams off Natalie's plate (because they were yummy and I wanted to see if she'd notice), and she non-nonchalantly leaned over and very quietly and sweetly whispered, "Can't you use your manners?" and twelve days later, randomly on a Friday afternoon, she again asked, "Mom, next year when we are eating Christmas dinner, do you think you could remember your table manners and not snitch food off my plate?" 

There was the ear-piercing scream when Hannah unwrapped the Veggie Tales DVD she wanted, and the smile that could split a face when Natalie pulled a bunny Pillow Pet from a package.

Presents are fun, but for me this year, the best gifts were the moments that became memories.

There may always be pain, but that's no reason to let the joy go. On the contrary, it's a great reason to fight all the harder to find the joy, create special moments, and capture them into memories.


This Year

in 2012 I want to...

read more books
take more breaks
use my time more efficiently
stress less
love better
make time for myself so i can be more giving to my family
be more present
keep taking stock of gifts and beauty around me
keep being grateful
see the ocean more
listen to more music
write more
worry less
encourage more
laugh a lot more
take better care of myself -- again, so that i can take better care of my family

what do you want more and less of in 2012?


Celebrate the Moments, Release the Expectations

It's been about a month since I was here last, typing in this space, and I've missed it. The month of December is overwhelming in almost every way, and add in a chronic illness that flares and it becomes quite a challenge. Having said that, I find it the most magical time of the year and I had a great Christmas season. I will share some of our moments with you soon.

For now though, we are starting a new year and I am trying to choose my One Little Word for 2012. I started this tradition in 2010 with the word Nest. I chose that year to focus on our home and family. I wanted to create a cozy, warm, artful home and focus on nourishing my little chicks.

In 2011, I chose Still.  I was diagnosed in 2010 with a chronic autoimmune disease, and I wanted to remember in 2011 to slow down, to rest (both physically and mentally), and to remember that no matter what, God still has a plan and a purpose for me.

This year I want to continue to learn how to celebrate the moments while letting go of expectations. I don't want to live on auto-pilot. I don't want to do things because I should do them or because they are expected. I want to spend my days on things that my family has chosen and implemented because we feel they are worthwhile.

I want to slow down in the moments -- unlearn multitasking every moment and remember that sometimes multitasking doesn't lead to getting more done, it just leads to frenzy and not really being able to focus.

This year I want to practice the art of being present in each moment. I want to give the person or task in each moment the undivided attention it deserves. Life is a gift. Every moment of life is a gift and it won't be back. We spend it while we live it -- whether we are present and absorbing it, or wishing it away, or too busy to notice it slipping by. I am still trying to determine the best word to use for that. Any thoughts?

So are you choosing a word for the new year? I would love to hear about it in the comments. If you've written a blog post about it, feel free to link to your post in a comment. And if you haven't chosen a word, but have something you are resolving to do or improve at, tell us about it. I'd love to hear where your heart and head is as you are starting your new year.
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