He's right. Soup is perfect in January, yet because I'm healing from consecutive knee surgeries, I still think twice before venturing out. Winter and crutches are a tricky mix, but a bright blue sky and sunshine on glittering snow were the boost I needed to head to our local food co-op.
I love our co-op. It's perfect for me; small with just four aisles, great organic produce and kind employees. I run into friends and never find myself at the back of the store, zapped of energy, wondering who hid the kryptonite and how in the world I will make it back home?
In the first aisle, a young man noticed a grocery list by the spices and asked if it might belong to me? Two small miracles; I had brought a list and I still had it. As I was checking out, a cashier came over to ask if I might have dropped my list? Surely a special place for this was the second time I had been asked if the list was mine? After declining a kind offer to carry my groceries to the car, I left the store warmed by these simple acts of kindness.
I carefully made my way along the sidewalk, still smiling, passing an elderly man who smiled back. He stopped and asked , "May I help you with your bags?"
I hesitated, unsure if it was any safer for him to attempt the task, but there was something special in the way he asked and I accepted. Blessings would come with my acceptance.
He helped me to my car and my small bag of fingerling potatoes triggered a summer memory. He told of a visit with a friend who sent him home with fresh garden vegetables. Tucked among the corn and zucchinis were fingerlings. He marveled at those delicate potatoes and for a moment we shared an appreciation for life's simple pleasures.
We said good by.
He surprised me yet again when he began pushing my cart into the store.
"Thank you for your kindness!" I called.
He waved, smiled, and with a twinkle in his eye, left me with these words, "We're supposed to love one another."
On Saturday, January 19, 2013 the U.S. celebrates the National Day of
Service in honor of Dr. Martin Luther King, Jr.. I suspect my new friend celebrates it every day.
With the country so divided as tomorrow's elections approach, ugly emotions abound. Stress is probably one of the biggest "bad guys" for chronic illness. As many are looking forward to a wrap on this election, the truth is, the strong emotions that have surfaced will not simply disappear. I hope after Tuesday, we find the grace to remove physical reminders like yard signs and empty chairs that will only add salt to raw wounds as we try to move forward.
On this day of uncertainty, I remind myself of how fortunate I am. We live in a beautiful place, one that values community. Where Halloween feels like a neighborhood party. A town where we dance in the streets at the Holiday Open House and drop our own New Year's Eve ball at 9pm so all can enjoy. A place where "buying local" is a priority. We're blessed with vibrant independent booksellers and local businesses that support our community in countless ways. Food banks, soup kitchens and paper pantries help many through difficult days. We're blessed by local farmers who provide us with delicious fresh food and schools that foster excellence. We're blessed with excellent stewards of our environment. We appreciate one another. We're there for each other.
And we love our arts. A few of our family's local favorites... The art of food
Heritage tomatoes and apples, root vegetables, artisan cheeses, morels and chantrelles, farm fresh eggs and milk, maple syrup, lavender, honey...ah, the joys of eating simply are truly delicious! I have a deep appreciation for our local organic farmers, especially after becoming so sensitive to additives, preservatives, pesticides and finally gluten. You simply can not beat fresh food prepared simply! Catch Farm to Frame: Ripe Moments Through the Lens, a juried photographic exhibit at Crooked Tree that showcases the journey of our local foods from beautiful farms, to vibrant markets and finally to our tables.
The art of dance
Our beautiful Crooked Tree pre-professional dancers enchant us with their talent and dedication. What a joy to watch their beauty and grace! We celebrate their achievements as they fledge around the country; to Chicago, New York, and beyond and smile at the tiny tots in tutus who look up to them.
Vibrant children's and adult theater
performances keep us coming back again and again, making it easy to
support our local schools and Little Traverse Civic Theater productions.
There's always something special in the works. We're looking forward
to The Wizard of Oz this weekend and LTCT bringing The Christmas Carolto life this holiday season!
The art of music
So much to celebrate: PHS Marching Northmen and beautiful concert bands, PHS Steel Drum Band, youth orchestras, the Great Lakes Chamber Orchestra, PHS choirs, Little Traverse Youth Choir, the Little Traverse Choral Society and the Northern MI Chorale. A special thanks to the many dedicated and talented performers, directors and teachers who make this so memorable!
Our home is at its best when filled with music. This fall I found the courage to join the Northern MI Chorale. The joy of singing with a group of people ranging in age from 14 to the upper 80s was a blessing that far outweighed the physical challenges. My doctor was thrilled, citing current research supporting singing as good for your health. From improving memory and balance, to boosting your immune system and fighting stress. All great tools for someone fighting chronic illness. Recently, I suffered consecutive knee injuries, a real bummer. Singing helped lift me above this new pain and frustration. This weekend I sang in my first vocal concerts. So healing to be surrounded by beautiful voices and so poignant to hear the voices of our daughter and her friend soar in their duet, God Help the Outcasts. So very grateful for the opportunities that let us transcend disease.
Wishing you grace, strength of spirit, and blessings in the days ahead!
Our girls. Our amazing girls! Their courage and perseverance inspiring! This past weekend our oldest daughter rose above the pain of complex regional pain syndrome in her right hand, with the help of her pain specialist and acupuncturist, to compete in her award winning marching band's final two competitions. Little Sis, who has been wrestling with neurological complications from the syrinxes in her spinal cord braved the trip to cheer her on.
There is no such thing as an easy day. Chronic Lyme brings a multitude of challenges and each case unique. One child with serious health issues is enough to turn your world upside down. Two almost overwhelming. This week my own health pushed me to the brink, yet when I picked up my daughter's iPad, a reminder she had left for herself splashed across the screen, "Today is the BEST DAY EVER!!!!!!!!!!!!!!!!!"
It is the final rehearsal for Narnia tonight and she is a fairy. A reminder once again that you're most challenging days can still be your very best!!
I really needed that reminder today. My tower of cards has crashed yet again. A week and a half ago I injured my left knee. On Sunday, my right knee gave out under the additional strain. I have had multiple ACL reconstructions and meniscus repairs on the right knee in the past. I'm facing surgery again, likely multiple surgeries. I don't remember if I've ever written about hypermobility syndrome, mixed connective tissue disease and Lyme? It's a chicken-egg kind of thing. Does hypermobility and MCTD make you more susceptible to the effects of Lyme or does Lyme weaken your connective tissue? At this point in my life, the answer makes little difference. When my knee gave out on Sunday, our cantata rehearsal was just beginning. The pain excruciating. I couldn't move without screaming so I stayed in my chair. As the choir, most unaware of my predicament, stood and began singing, "Where hope was lost, a seed was found; a tender shoot, from barren ground," the tears, tucked deep inside, quietly spilled over. Today, they spilled again, but Lil Sis is right. It can still be the best day ever. It just takes extra effort to make it so!!
I am ten. I love to write, bake, and sing. I have a one year old scaly spiky friend. Her name is Rubye. She is a bearded dragon. Now you may think I spelled her name wrong, but I didn't. You see, Ruby is a common name, but I thought that since that was a common name I would make it an uncommon spelling. I love Rubye because she is really curious and fun to play with.
Marley is a great dog, too! He always knows when something is wrong and sometimes when Mom tries to hug me, he jumps between us and lies on me and pushes Mom away. It's really funny and it always makes us laugh! He always finds me when I am sad or hurting. He gives me a Marley hug and curls up with me. He always makes me feel better. He also likes it when I read him stories, especially ones where the character's name is Marley and he is a dog. Rubye likes stories, too! I am so glad I have a pet patrol in my room!
Lately, I have been feeling pretty icky. Sometimes I have to stay home from school for part of the day because I am hurting. Sometimes I am so tired, I can't wake up. When I do, I feel worse than in my dreams. We are planning to make a chart of my body so I can circle where I am hurting. Today, even my teeth hurt. I have been wearing my neck brace because it is helping me not hurt as much. I have a shunt and have had surgery on my brain. I have two syrinxes in my spinal cord that make my body hurt or feel funny. Sometimes I have a sharp pain that feels like lightening in my back. It is pretty scary. Some days I wish I could meet another kid like me.
My big sister is having some big problems, too. Sometimes I wish I could have a way to go back in time. I would tell the doctors that we had Lyme disease from the start and maybe they could have found a cure for us sooner.
Lyme is not stopping me from doing what I love to do most. Yesterday I started to write a book. A lot of the kids in my class want a copy when I'm done. It makes me feel good that people appreciate what I'm trying to do and also I can't wait until we bake cupcakes or when a birthday comes up. Finally, I have a couple groups I love to sing for and I love to be in plays. My music teacher is the director of some of my plays. We have a lot of fun! I love my friends! I love it when my cousins are in my plays too!
I love my new iPad because I put a bunch of learning apps on it and it is helping me with learning. Even though I may have problems I don't let them stop me.
I've been wrestling with writing, missing the May deadline for a Lyme Awareness post. Yesterday our Border Collie cracked the writer's block.
A family of rabbits lives in our backyard, darting and hopping; very playful. Giving the illusion that Richard Adam's Watership Down's warren has sprung straight from the pages into our yard. Our Border Collie has a different take. To Marley, it is more like Cynthia Rylant's Mr. Putter & Tabby Feed the Fish.where Tabby, is driven crazy by goldfish. Yesterday, Marley flew into a frustrated frenzy, shredding every piece of bedding down to and including my side of the mattress. Fortunately, no quilts were damaged, but UGH! Suffice it to say, between medical expenses, student loan payments and life in general, new bedding and a mattress are not in the budget. So what to do beyond providing love and reassurance to one very remorseful BC who just happens to be draped over me as I write?
Well, there are two traits that come in handy if you're going to survive Lyme. You must be adaptable and a great problem solver. At bedtime, my husband carefully laid out the sheets, making sure the tears didn't overlap and fell quickly asleep. Sewing machine repairs could wait, but what to do with the rather large hole in the mattress on my side of the bed?
Wool roving? I replaced a piece of mattress, stuffed roving around it, then used a pad from a brace to hold it all in place. Good enough. Just as I drifted off to sleep, it hit me that the shreds of fabric were a simile for our lives.
Life as we once knew it in shreds or we're holding on by a shred? A bit of each I think. Dear ones facing cancer and congestive heart failure. Shared grief from recent losses. On the Lyme front, our nine year old is adjusting to life with a shunt and the remaining syrinxes in her spinal cord. Painting, singing and writing bring much joy. She has loved rejoining her classmates at school. Our 14 year old recently developed complex regional pain syndrome after a knee injury. So painful and debilitating! Music remains her solace and inspiration. As one world opens up a bit, the other shrinks. The ebb and flow of chronic illness.
A friend recently asked if I was keeping my head above water? I laughed, "Nose and lips."
Daily antibiotic infusions keep me afloat. Infusions to knock down mastoiditis, a stubborn bone infection left over from my Lupus days. I tire easily. A sense of humor, though sorely tested, hangs tough, but please pardon me if I laugh too loudly. The sense of humor is a bit strained and the left ear still messed up, but as our youngest says, "Welcome to my world."
Who can argue with that?
blankets are torn and our lives in disrepair, but shining moments keep
us moving forward and our spirits alive. So here is my May service
announcement in June. As the tick populations grow and spread and
scientists warn of a perfect Lyme storm brewing, please learn what you can about Lyme disease.
Not all ticks are infected with Lyme, but one that is can change your life forever. When I think of the havoc a tiny deer tick caused in our family's
lives, it's humbling. Remember, a bull's eye rash is a definitive sign
for Lyme, but it shows up in a small percentage of cases. Unfortunately, the tests for
Lyme are often unreliable. Lyme disease should be a clinical
diagnosis. A bull's eye rash or a summer "flu" are warning flags. Adequate treatment at the
onset of infection can spare years of suffering later. Closing with best
wishes from our family to yours!
Every once in a while you read a book that touches you so deeply it becomes a part of you. When I was young, my mother shared, Angel Unaware by Dale Evans Rogers. A beautiful tribute to a child who was here only a short time, but who forever touched the lives of her parents, Roy Rogers and Dale Evans Rogers and other special needs children, for which they were eternally grateful.
Our daughter had her own little angel unaware. He came on four legs, not two, but an angel nonetheless. This summer she cared for a super sweet bearded dragon lizard named Paco. She fell in love and began saving for her own lizard and tank. When we learned the seriousness of Olivia's brain and spinal cord issues, our family and dear friends moved forward with the dream.
In our family, we believe our pets chose us. Marley, our beloved Border Collie, a rescue, didn't want to leave when he first met the girls. When our daughter walked to the aquarium where the lizard was housed, he came over and stood on two legs at the side of the tank and looked inquisitively at her. She walked around the store to look for things she would need and when she came back, he was waiting. It was love at first sight for both. We brought him home, much to the joy of all. Little Tuko, nicknamed Taco to rhyme with Paco, helped our daughter immensely in the days leading up to her surgery.
He had not been home long before he developed a bacterial infection in his mouth. The vet noticed signs of metabolic bone disease, unusual for one so young. She suspected his mother had been calcium deficient and he was born with it. A bit of irony as it was one of the diseases our own daughter had been born with. The Lyme disease caused placental complications, resulting in severe intrauterine growth retardation and metabolic bone disease. At six months, she was diagnosed with severe rickets, a vitamin D deficiency. We felt even more empathy for Taco.
Sadly, a secondary respiratory infection developed and his condition worsened. He rallied to join our daughter when she returned to school for the first time after her surgery. He erased the physical pain of her incisions and the emotional worry of her hair. Taco had been a star in the class's get well cards and it was very important to our daughter that they get the chance to meet him. Last night he quietly passed away.
As my heart was breaking for my daughters, our youngest, so wisely reminded me of a line from one of her beloved books Houdini Was written by the second grade students of White Bluffs Elementary in Richmond, WA after their class hamster died. "Don't cry that it's over...be happy that it happened."
So I wiped my tears. Thank you, little Taco, for making some very difficult days so very special.
How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!
Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."
Things like how to add or subtract.
We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.
A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.
The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.
This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."
She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."
When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"
She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.
Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.
In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"
My husband has encouraged me to write a blog for years while I worked on a book about our experiences with Lyme disease. Inspired by "Julie and Julia", I have finally listened. Lyme is real is our family's story.