Monday, January 30, 2012

With These Hands

I used to play violin, piano, mallet percussion
With these hands
I used to do cartwheels, back handsprings, all sorts of gymnastics
With these hands
I used to make friendship bracelets and other crafty things
With these hands
I used to write volumes upon volumes
With these hands.

I caught my babies as I birthed them
With these hands
I cloth diapered, ec’d, bathed babies
With these hands
I put tiny clothes on tiny bodies
With these hands
I peeled apples, cut off crusts, and kneaded dough
With these hands

I held hiking sticks and fishing poles
With these hands
 I threw balls and Frisbees
With these hands
I flew kites up to the heavens
With these hands
I held on tight at the amusement park
With these hands

I support myself with canes
With these hands
I propel myself in my wheelchair
With these hands
I struggle more often than not
With these hands
I type words of frustration and inspiration
With these hands

I still
Nurture babies and children
With these hands
Make nourishing meals
With these hands
Hold little hands, and big ones
With these hands
As I live with psoriatic arthritis
With these hands.
Can you find my hand?

Wednesday, January 25, 2012

Waking up...

Floating on four inches of memory foam, wrapped in a cushy warm blanket, I dream of good and wondrous things. An intruder, usually in the form of a smallish person, rarely in the form of my alarm, jolts me out of bliss and transports me to the world as it is. 

I resist waking up. 

Like most people, I'd simply like to get more sleep. Like many people, I don't look forward to leaving my warm, comfy bed. Like some people, I don't want to leave the land of dreams. 

For the many few of us, waking up means something more.  It means becoming acutely aware of the pain. It means leaving a body that works in the land of dreams to return to a body that doesn't in the world that is. It means facing the reality, once again, that I am limited to what my body decides it's capable of that day. 

When I sleep, I dream of hiking and biking and running after my kids. I dream of writing and painting and digging in the dirt. 

When I'm awake, I dream of hiking and biking and running after my kids. I dream of writing and painting and digging in the dirt. 

Many people who are diagnosed with a life-changing chronic illness resist waking up to the reality of what their life is going to be like. They live their lives for a while in that state between asleep and awake when you're not quite sure if it was just a bad dream and hope everything will be fine when you open your eyes.

Waking up with a chronic illness is difficult. Waking up to chronic illness is more difficult. But as with life, we have no choice other than to wake up. I suppose we can hit the snooze bar a few times, living in denial and pushing ourselves beyond our limits, but eventually we need to deal with life as it is. 

On my journey with chronic illness I've learned that dreams aren't dead in the world as it is. The dreams I had for my life before getting seriously ill haven't vanished - they've changed.  I may not be hiking through local hills any time soon, but I can find other ways to enjoy nature with my family. I may not be able to write with paper and pen for very long without it becoming illegible, but I haven't found a way yet to type illegibly, unless I'm really not paying attention. More importantly - I AM writing  - writing for myself and hopefully inspiring a person or two along the way. I may not be able to run after my children, but let's just say that a wheelchair can be a really fun mode of transportation. Lacking the ability to do lots of down to earth type things, I've found more time to dream - and new dreams to which to aspire. 

May your sleep be sweet and your dreams inspirational. 

Tuesday, January 17, 2012

A Date with a Vampire...

Today was the day. I'd like to say I sprang from bed after a good night's sleep and was ready to go on time., but I won't considering Skella Girl was up from shortly after 1AM until shortly before - or possibly shortly after, I lost count - 4AM. First she was up because she had a bad dream in which something bit her finger, which meant she needed to 1. climb in bed with me and tell me about her bad dream in full detail for 20 minutes; 2. exclaim that her finger hurt in real life and she needed a cold cloth for it; 3. get settled in to "bed" on a mattress on the floor because she was too squirmy to sleep with Mama and Daddy. Then she realized that she was going to "the vampire" in the morning and proceeded to ask 127 times if she was really going to the vampire and really going to see her own blood come out of her body and quintuple check that they would definitely not let her take a vial of her own blood home with her. This took hours. 

Skella Girl bounded into the vampire's office. Her legs swinging as she sat in "the coolest green chair that camouflages with the totally green wall," she jumped every time someone moved and asked if it was her turn yet. Exclamations of joy were most likely heard in the parking lot when her name was finally called.

The vampire checked one arm, then the other, then back to the first arm. Skella Girl didn't so much as flinch when the needle pierced her skin. She looked on in awe as her blood spiraled through the tubing into the vial, and exclaimed her need to see the vial of blood before the vampire took it away. Two stickers and one lollipop in hand, she left a stunned vampire behind as she skipped out of the office exclaiming that this was the best day ever

So ends Skella Girl's date with the vampire. If only her brothers fared so well...

Friday, January 13, 2012

Friday the 13th: The 16th!

Sixteen years ago, sunlight danced off icy branches as a new day unfolded. Standing on the porch of my childhood home, I took a few moments before appointments and preparations to breathe, to pray, and to enjoy the dawn of a new chapter of my life.

The morning was a blur of activity during which I didn’t have time to think of more than what needed to be done in that moment. All of a sudden, there was quiet and calm. In those moments of silence before taking those first steps, my thoughts filled with thankfulness for the blessings in my life and wonder at the things I survived to get there. At the first strains of music, my heart leapt in joy and anticipation of spending the rest of my life with my best friend.

My Dad walking me down the aisle; my beautiful maid of honor and the “nice Amish boy” (if they only knew!) best man; the flower girls in gorgeous handmade dresses; the ring ninja protecting the rings from any and all threats; musician friends playing and singing, even if they couldn’t find the Radetzky March; family and friends who braved ice and snow; my best friend who couldn’t make it but who was beside me in spirit; a pastor friend from out of town who hours earlier was mopping the entryway floor at my parents’ house; and so many more – what a wonderful group of people to be surrounded by as we publicly committed to forever and always.

And our reception – Mr. D's band ;  my former band director/father of one of my flower girls (whom I used to babysit) on trumpet; the (married) Pastor catching the garter after the sea of bachelors parted; the band egging on the young man who finally caught the garter as he put it on the leg of the drummer’s daughter, whose mother hovered over them; an awesome performance of New York New York; my grandparents dancing to "I Found My Million Dollar Baby at a Five and Ten Cent Store," and singing Christmas carols with my friends are among the highlights of a truly special day. 

But the best part? The best part has been the sixteen years since. We’ve had our ups and downs and have come through them, sometimes not with flying colors, but have come through them. We’ve lost three babies, but we’ve gained five amazing children. My health has dramatically declined, but our understanding of what is really important in our lives and our marriage has just as dramatically increased. I was going to say that the one constant through it all has been our love for each other, but that, too has grown. When I married Jim, I loved him with my whole being. That much hasn’t changed. But now I not only love him as a person, my best friend, and my husband, but I love him as my family’s provider, as the father of our children, and as my caregiver. 

I always dreamed we’d one day be two old fogies rocking together in a porch swing watching our great-grandchildren play. Now I’m sure, God willing, we’ll do that some day.  I figure if I can put up with him for sixteen years, what’s another sixty? Besides, I’m partway to fogydom already – I’ve got the arthritis, the canes and the wheelchair. If I don’t keep him around, who’s going to push my wheelchair, heat up my rice socks and bring me water in which to soak my feet … or laugh with me about things that only we find funny, agree with me that life just wouldn’t be as entertaining without our children, be just as scared of our three-year-old as I am, or be crazy enough to deal with my insanity?

So thank, you, honey, for everything you do for me every day – especially the millions of things I forget to thank you for. Thank you for laughing with me when my body fell apart, even if I almost peed my pants. Thank you for putting off a certain procedure long enough for us to have the five children I told you we’d have when we got married instead of the two you had planned on. Thank you for supporting me in all facets of our lives: natural-duration breastfeeding, babywearing, homebirthing (although it took you a while J ), homeschooling, having a crazy number of children in our house on any given day, and all the other radical and not-so-radical life choices we’ve made. Thank you for wearing those pants in college and for letting me stalk you and still talking to me when I quite awkwardly approached you in the computer lab and told you that I knew you from somewhere. Thank you for being an overprotective puppy dog. Thank you for loving all of me. Always remember…

Sunday, January 8, 2012

Epiphany Pageant

Did you know that angels spin in the light of distant stars (or ceiling lights) while the shepherds guarding their flocks by night discuss the happenings in Bethlehem?

Can you imagine anything more adorable than three little angels proclaiming loudly, "Glory to God in the highest, and on earth peace, good will toward men"?

Did you realize that there were two magi, both girls, one of whom dropped her treasure, but neither of whom dropped a line, and that for once presented their gold, frankincense and myrrh at the proper time?

Don't you wish you were there to see a visit from an angel, Cinderella in a manger, three comedic yet informative shepherds, and the miracle of only one of the numerous children needing a bathroom break in the middle of the pageant?

Me? I feel blessed to have been there to witness the holiness, preciousness, and spontaneity of every minute of it. Even if several of the minutes were spent in the bathroom.

Friday, January 6, 2012


The most exciting thing is going to happen next week. Alia has been waiting forever and it's finally going to happen. She's going to the vampire! She gets jealous every time I need to go, as she's fascinated with the human body and therefore thinks that blood being sucked out of one's veins would be a really awesome thing to witness. And now she gets to have blood sucked out of her veins. What could possibly be cooler than that? Well, other than having x-rays of her own skull, that is. 

Who knew the prospect of getting a blood test could be so thrilling to a three-year-old?

Oh...and she's a bit sad she doesn't get to bring home a souvenir vial of blood...