Advocates on Steps of Congress 2013
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Purple Feet

Yesterday was my birthday, of sorts so I'll tell you a story. Purple (as in the royal purple) had long been my favorite color until it became a literal part of me in ways I could never have imagined.

Linda Robens Fraise.JPG2004/05 had been a difficult season (more of a blizzardy winter from a Winnie the Pooh perspective), sometimes heartbreakingly difficult.  We all have these seasons - no one is exempt - and they will return again and again.  I was blessed with family, amazing friends, a wonderful warm house (important during blizzards), and a job that I loved.  One of my favorite life heroes is my oldest granddaughter who suffered a major stroke during surgery at five.  There had been challenges for many in my family this season – the kind that alters life forever and chips away the unimportant things we humans mistakenly hold on to.  One of my dear friends was dying. We talked every day as I stopped on my way home from work.  He was compassionate, funny, with “cowboy” wisdom and loved life.  He died that February after a horrific battle with lung disease.  His wife held him as I held them and prayed during the impossibly long hours as he tried desperately to breathe.  I still miss him every day. Two days later, my oldest grandchild had another emergency brain surgery and there were other emergencies spinning around my life; not the little bandage repair ones, but “Please God, help me remember you are in control” kind.  I remember sitting alone in my house crying and listening to the extraordinary deafening loudness of silence.  Where was God?

I had been alarmingly short of breath for months and a great thumping in my chest occurred with any kind of light activity leaving me gasping.  Something had been wrong for months – long before my beloved friend died.  My body was becoming less and less my friend.  I developed odd spots on my face and shoulders and the biopsy report came back revealing “undiagnosed systemic inflammation and abnormalities”, but no one knew what that meant. Indescribable random arm pain kept me up at night and in tears. I pulled myself up the stairwell at work – and then the strangest, most terrifying symptom of all…when I stepped in the bathtub, my toes would begin to throb and turn a dark purple almost black.  My fingers had the same dramatic changes as well.  Purple was no longer my friend.  I kept pleading with God to show me what to do.  I knew I was dying.

November 4th nine years later. I spent most of the day with the dear friends as we attempted to piece together the first of two memory quilts for my youngest granddaughters an ocean away.  The fabric was carefully chosen and purchased almost three years ago and these faithful warrior friends of mine had cut the fabric, printed pictures and desired (in the midst of the challenges in their lives) to give me this gift.  Truth be told, they are the experts who applaud my skills as an excellent gopher, ironer, cleaner upper and walker of an exuberant golden retriever while they perform the quilting miracle.  Luncheon prepared, (chocolate was involved) and a project with a quick turn around time, begun.  The really hard work, the integral design, fabric selection, assembling the chosen pictures and cutting the fabric had been completed.  Assembly and sewing were all that was left.  Precious hours ticked by.  We determined that some pieces were missing and the directions not very clear.  We improvised by borrowing material from the second quilt. Desperate times called for desperate measures and we were becoming desperate!  How hard should it be to put together a puzzle with four brilliant minds?   Apparently, the answer was close to impossible, as it took us nearly four hours to determine that two pieces were sized incorrectly and the puzzle would never be completed per the instructions.  Material had been added in places that were not part of the original design and beautiful excess now had no place to call home.  We altered the original design, but now we can visualize the ending and the beauty of our masterpiece. It is far more beautiful then our original design.   As I drove home I thought, this is so like God to use something tangible to remind me of my life. This day reminds me yet again that His plans for me, mistakes included, are woven into the “master design” of my life.  I thought of my friends who never once said to me yesterday, “ You know IF we had completed this project two years ago, we would have remembered the puzzle and it wouldn’t have been so impossibly difficult”.  Instead we laughed and groaned and they reminded me that I haven’t been feeling so well over the last few years and covered my apologies with grace and love. My girls will never know the cost of time given for them (and me) or compare the original design to the “flaws”, but they will see the new masterpiece and know how very much they are loved.

Some people celebrate milestones as birthdays.  The people of Czech Republic celebrate a name day – and so I choose this to be my birthday celebration of God’s faithfulness during this illness.  Systemic scleroderma was named for me on this day. It is a rare autoimmune disease that attacks (and hardens) major organs of the body.  I have been blessed with many miracles and am grateful for every one. There are setbacks and loss.  Loss has also given me a new perspective and the opportunity to walk alongside others with difficult illnesses with an authenticity I did not have before.  It is still very much a part of my life and the disease tries to control many of my decisions regarding what I cannot do, but I try to pay as little attention as possible.  I appreciate each miracle: like eating at night sometimes, the nights I sleep without pain, and the ability to walk.  Nine years ago, my purple feet could not walk up the tiny incline to my house.  I painted liquid bandage on my feet to protect the cuts and couldn’t fit into my shoes from the swelling.  I was afraid of water because of the color changes I would see.   When the body works well now, I tell it “good job” and “anyone can do this for five more minutes” when it is difficult.  I celebrate each victory and mark each struggle with gratitude– or I try at least - and try not to take any for granted, like the victory of the quilt. I am remembering the blessings “of” the hard things, to rejoice in the easy ones, to take snapshots of the perfect moments in my mind with gratitude.  And yes,  I am back to loving purple, again!

 

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