Ten Days Gone

From my office I can watch the leaves fall upon the deck and melt in pools of red and yellow. They do not fight it. They have served their purpose. They have accepted their fate. Theirs is to fall beneath a constant drizzle and breaths of mist and theirs is to mock me in their peacefulness.

From my office I can see a grave sixteen years deep. My gaze tends to wander there. It lingers from time to time.

The boys have been sick and sad and they are making messes and mischief of one kind and another. Theirs is in the now. Pain and joy are deep and fleeting. Mornings are met with smiles and dreams are embraced with hugs and sugars and the seesaw tones of love and a patience lost.

Miles away my wife drifts in a pool of memories. It ebbs and it flows and it ripples from countless teardrops. She is at the bedside of her father. Hers is a distance measured in sadness.

Her father fades slowly. Her hopes come and go. His breath, it ebbs and it flows and it ripples. His is the fountain of their tears. His is the pool of memories in which they wade with pants rolled high and thick, hard skin slowly finding softness. Theirs is old wounds unhealing and new cuts soaked in salt.

Mine is to be alone, tired and slightly unkempt. Mine is to stare far too long at leaves through windows. Mine is to care for my children and give them strength when they need it and to take theirs when it is offered.

Ours is to make the most of making do.

Old Dogs and Falling Leaves

I opened the door and she was sitting there. She was young and full of mischief and energy. She ran strong and loud and I named her Harley. Harley Anne.

Harley was the worst puppy I ever had. She ate shoes and toothbrushes, hoses and the wires inside the lawnmower. She dug holes and escaped yards. She was a whirlwind of destruction. Sweet, loving destruction.

Harley was the best dog I ever had. She was a gentle giant and stood by me through the growing pains that got me here. Her love was constant and unflinching, even when it should not have been.

She made me a better man. She taught me responsibility when I thought I already knew it. She taught me that it was almost always better to forgive than to fight. She calmed me when I was angry and soothed me when I was sad. I am a man of many edges and she kept me from growing too sharp.

She cared for my sons like some fictional dog from a storybook. She showed them patience when I had none. She was both their protector and their pillow. My boys have never known a day without her.

She was sixteen. She couldn't run or whirl or destroy anything more than the carpet beneath her. She was too frail to protect and too tender to rest a head upon. She was tired.

Despite the loss of muscle and the growing amount of lumps upon her chest she never showed signs of pain, only sighs of frustration at a body that quit before she did.

Yesterday she whimpered non-stop.

Neighbors stopped by to check on her. Dogs stood at the gate and gazed upon her. I sent the boys out to play and I sat with my old dog. Her breathing grew labored, her eyes distant. She died in my arms, no longer young or strong, but old and tired and leaving a life well-lived. A life well-loved.





And in the end, the love you take is equal to the love you make.

Her legacy is a tribute to her. Everyone that met her left a little happier than they came. My sadness is tempered in this solace. My loneliness finds comfort there.

Today I will stand beneath a grove of trees surrounded by friends and neighbors. I will place my dog in a hole in the ground - one that she would be proud of, and I will say goodbye. She will rest there forever, beneath falling leaves and drops of rain, and the occasional tear when memories lead me there.

Rest well, Harley Anne.

Always Home & Always Cool

Kevin of Always Home and Uncool has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife's birthday.


Thanks for sharing, Kevin.

________________________

Our pediatrician admitted it early on.

The rash on our 2-year-old daughter's cheeks, joints and legs was something he'd never seen before.

The next doctor wouldn't admit to not knowing.

He rattled off the names of several skins conditions -- none of them seemingly worth his time or bedside manner -- then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn't know much.

The biopsy of the chunk of skin she had removed from our daughter's knee showed signs of an "allergic reaction" even though we had ruled out every allergy source -- obvious and otherwise -- that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blond cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift -- a diagnosis for her little girl.

That was seven years ago -- Oct. 2, 2002 -- the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter's first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn't tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don't know.

I do know that the fourth doctor, the one who brought in others to see our daughter's condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.