A Rainbow

In June, my daughter and I traveled with the Little Traverse Youth Choir on its first international concert tour. The choir sang in Kitchener, Toronto, Ottawa, Quebec City and Elmira, N.Y.. Just months before leaving, Lyme and Ehrlichia symptoms flared, making the trip uncertain for either of us. Even a few days before we left, I was uneasy. When you're with people a few hours, you can hide a lot, but ten days is a long time to keep symptoms hidden. There was bound to be "rough water" along the way. Was it worth the risk?

Now that we're home and in recovery mode, I would say absolutely. This was a life-changing experience and I am so grateful we were able to be a part of it! It was not without "rapids", but we survived, with a little (or a lot of) help from our friends. There were times I was caught in mid-fall or offered an arm of support when I needed help walking. Several of the guys helped my daughter carry her suitcase up flights of stairs and one even carried her to the bus in Quebec City, when it was too painful for her to walk. Just when it seemed we were both hitting the wall, we reached Silver Bay and Seneca Lake, a perfect time to recuperate. My daughter slept  nearly 24 hours and was able to physically finish the trip. 

We reached Niagra Falls, with the sun shining and the finest of mists falling on us from the water crashing over the falls, and were treated to a glorious rainbow across the falls. As I was taking pictures, I noticed my daughter crying. One word as she looked up at me, "Grampy."

When Grampy learned he had leukemia, a double rainbow appeared over the Mackinaw Bridge. He grabbed his camera and life went on. When Grampy died just weeks before he was to teach a photography mini-course, my husband and I were asked to teach in his absence. It was an incredibly heart-wrenching week, but each day we were treated to amazing sights: a flock of sandhill cranes, blue-tailed skinks hatching in the warm sand, an eagle flying in front of our van, leading us to our picnic spot. As we made our way back to the cabin on the last day, a rainbow appeared. 

Whenever someone in our family sees a rainbow, we're reminded of Grampy. This rainbow made me laugh. Of course he was there! We had just spent nine days sharing beautiful music, making beautiful new friends and photographs. He loved to travel. He loved beautiful people. He loved nature. He loved photography. I am the photographer I am today because of him. He would not have missed this trip for the world and fortunately, neither did we.

 

Soup for the Soul

 
It started when  Northern Michigan Recipes: Six Soups for Comfort from MyNorth appeared in my e-mail with an accompanying message from my husband, "Yummmmmm!"

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.

In gratitude.

Community

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
Unforgettable 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 Carol to 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!

The BEST DAY EVER!!!!!!!

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!!

A Day in Life of Me

A guest post by my daughter.

This is me when I got my new iPad!

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.

Shreds

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?

Yes, 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!

Angel Unaware

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?

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!"

Gratitude for Summer

Shorter days, cooler nights with frost warnings, reds and yellows sneaking into the foliage, Canada Geese and Sandhill Cranes heading south; all undeniable signs that fall is right around the corner. It is with a bit of sadness we say good bye to warm sunny days, sand between our toes, trips out the backdoor to harvest fresh herbs, kale and onions, flowers in the yard, and amazing memories of special times spent with loved ones. Summer could not have come at a better time and the slower pace for rest and healing was very much needed and appreciated! We loved every minute of it!!






What kid doesn't have a few back-to-school jitters and yes, we've had our share, so what a treat to share in the girls' excitement as they headed off to school this morning! Our youngest returned to a sparkling building anxious to meet old and new friends. For our oldest, it was her first day of high school. She was returning to the building she knew well as a child. I'm hoping it will feel a bit like home to her. The most emotional part of her day will be walking into my old classroom for science. May it be easier than she imagines. I'm hoping the hour will fly by and she will love every minute of it.

And while I'm making wishes, the biggest one I send out today is that our girls remain healthy enough to enjoy life the way they want to be living it. The balancing act has begun again. Hold on, Girls! We'll take it one day at a time! XO

The Question

My husband recently asked a question that had me roaring with laughter. It was a simple question and perfectly innocent. He was sitting at the computer, on eBay, looking at clothes from J. Jill, a long favorite company of mine.

"What style are you going for these days?"

Little did he know it would elicit such whoops of laughter!

Is there a style name for comfy pajama bottoms paired with long sleeve super soft cotton tops? Add fleece when cold? I'm pretty sure I'm a candidate for TLC's "What Not to Wear", though would NEVER have the energy to fly to New York City and shop for three days!!! That's okay because I'm equally sure Stacy London's shoe choices would neither accommodate orthotics or an AFO! As I'm incapable of making decisions regarding money, it truly is pointless to even go down that road.

My clothing is functional. It is often difficult for me to fall asleep at night. Though I'm tired, it is when I experience the most pain so I often catch up by sleeping in the morning. Each day at 2:45pm, I trade the pjs for a pair of yoga pants or khakis and pick up our daughters from school. I had to laugh when our Border Collie leaped to attention mid-morning last week after seeing me change, certain we were heading out. When I shared this memory with my husband and demonstrated with the dog, we were both laughing until tears rolled down our cheeks.

Maybe this is just one of those questions that is better left unanswered? Wishing you the joy of laughter!

If You Give a Lymie Some Laundry

written in the style of Laura Numeroff's "If You Give a Mouse a Cookie"

If you give a Lymie some laundry,
chances are when she goes downstairs,
she'll see a large bin with unused shoes which will remind her that
the elementary school is having a shoe drive for Souls4Soles.

As she looks through the bin, she'll see dress shoes,
but will forget if the drive is only for tennis shoes
so she will head upstairs to look for the memo,
forgetting to add a load of laundry.

She will see her phone,
which will remind her of a friend she wanted to call.
As she sifts through a kitchen drawer looking for an old phone directory
from when she was well enough to teach,
she'll find postage stamps of varying amounts, unsent greeting cards, paper clips, garden seeds, DVDs, business cards, menus, screwdrivers and other miscellaneous misfits.
She will decide to clean the drawer.
When she gets to the bottom of the drawer, she still hasn't found the number she was looking for
and her counter and table tops are now a mess.

Realizing it is lunchtime,
she begins to poach an egg.
Her daughter will ask for one.
When she is unsuccessful in her search for the baking dish,
her daughter will gently remind her to check the microwave,
where she will find the egg she made for herself, but forgot to eat.

When she sits down to eat the egg, she will see the computer
which will remind her that she still would like to call her friend.
She will Google her friend's name and find her on Facebook.
but will be distracted by everyone's status updates.
Eventually she will remember to send a friend request.
Fortunately, her friend "friends" her and sends a phone number.
She calls and a they plan a time to meet.

Thinking this might be a fun blog entry, she sits to type at the table, among the piles of greeting cards, postage stamps and other miscellaneous misfits, and thinks to herself,
Tuesday at 10am. Now, if only she can remember to meet her friend on Tuesday and what will she wear?

The Story

Before last night, I had not heard "The Story" by Brandi Carlile. Nor did I know Sara Ramirez, who plays surgeon Callie Torres on ABC's Grey's Anatomy, was a Tony award winner. As I watched the Grey's episode "Song Beneath the Song", I was deeply moved by Ramirez' powerful performance of "The Story" in the final scene. My husband walked into the room to find me in tears, scribbling the song's lyrics on a scrap of paper.

"All of these lines across my face tell you the story of who I am. So many stories of where I've been and how I got to where I am, but these stories don't mean anything when you've got no one to tell them to. It's true. I was made for you."

How does one capture the emotional and physical journey of years of chronic illness; illness that ages bodies well beyond their time? Years of misdiagnoses? Years searching for answers? Lost careers? The fights to save lives? Years of treatment? Hope on the horizon? In my mind, "The Story" captures all beautifully. Both versions are available on iTunes.

The Story

lyrics by Brandi Carlile

All of these lines across my face
tell you the story of who I am.
So many stories of where I’ve been
and how I got to where I am.

But these stories don’t mean anything
when you’ve got no one to tell them to.
It’s true…I was made for you.

I climbed across the mountain tops.
Swam all across the ocean blue.
I crossed all the lines and I broke all the rules,
but baby I broke them all for you.

Because even when I was flat broke
you made me feel like a million bucks.
You do.
I was made for you.

You see the smile that’s on my mouth.
It’s hiding the words that don’t come out
and all of my friends who think that I’m blessed
They don’t know my head is a mess.

No, they don’t know who I really am
and they don’t know what
I’ve been through like you do
and I was made for you…

All of these lines across my face
tell you the story of who I am.
So many stories of where I’ve been
and how I got to where I am.

But these stories don’t mean anything
when you’ve got no one to tell them to.
It’s true…I was made for you.

The Solo

Imagine you are thirteen. Lyme spirochetes have invaded your spine and you are living each day with severe pain. They've also invaded your brain making it difficult to remember. You're wrestling with horrible headaches. The new medications are working, but your body is experiencing deep fatigue as it works to handle the infection and dying bacteria. You are herxing, causing symptoms to flare. You want to stay in bed.

But remember! You are thirteen. You're in the eighth grade. Singing, dancing, band, musicals, family, friends, school and teachers are your loves. They're the reason you pull yourself from bed each day, even the days that are the hardest you've yet to face. And then, of course there's the solo.

A solo in a band that has received straight ones for the past thirty-five years. Festival is fast approaching and your solo continues to be a challenge. You play the oboe. You're wrestling with reeds. Your best one gives out one day in rehearsal, right in the middle of your solo, shaking your confidence. Your parents send for more, but they're held up in a snowstorm for several days. They arrive just before the pre-festival concert. The bands combine and you're now playing with even more peers. Stress builds even more. We all know how stress affects Lyme. It becomes even harder for you to function. Your mother is questioning her own decision years ago, to encourage you to play the oboe.

You are strong. You don't give up. Your directors continue to inspire and help you. A dear friend comes over before school for more lessons. A wise director tells you the band's rating will not be affected by your solo. The new medication starts working its magic. The cranial-sacral massages are lifting you out of the pain cycle you are in. You play well at the pre-festival concert in front of the parents and your confidence grows. For the next two weeks, you continue to work. You add vibrato and on the day of the concert, the notes bring tears to the eyes of those who love you as they think of all you've accomplished. What you've overcome.

Then the judge steps in front of the audience to talk with your band. He asks you all to look at measure 19 in the second piece. "Where is the oboe player?" he asks.

Hearts skip a beat. You raise your hand. He asks the others to musically step out of your way. He wants your notes to carry through the auditorium, at the same time reassuring you that he could hear you the first time. He wants the piece to be even more beautiful. You play it through again.

Today you learned the joy that can be gained when you face your demons. By daring to dream, you had the courage to soar. You are such an inspiration!!!

A great day!

On 2-11-2011, as Egypt celebrated, I was quietly celebrating what would become one of my best birthdays ever! Our daughter and her science teacher invited me to the classroom to teach a chemistry song, a former student of mine had written years ago. I hung out for a bit of their lab before heading to a wonderful lunch with the dearest of friends. I mixed a gallon of slime for the school carnival and it was there I received my third amazing present!

Three years ago, the carnival was too much for our youngest. She walked into the gym and was completely overwhelmed by the people, the games, the noise. In panic, she asked to go home. With much encouragement, she played the Plinko game in the farthest corner. Two years ago, after her recent diagnosis of cerebral Lyme disease, she missed carnival altogether when she was downstate for a picc line. Last year, I was downstate for treatment, so it was pure pleasure to watch her completely embrace this year's carnival! She had the confidence to play games with friends, have her face painted, won a goldfish coupon when she tossed a ping pong ball in a bowl, and even mustered the courage to do the cake walk until she won. Only I needed to sit and rest. She continued strong to the end. She was so excited and on the way home declared it, "One of my best days ever!"

I have to say, though I was completely spent and rested much of the weekend, it was truly one of my best birthdays, too!!!

Strength, Peace and Grace

Winter is always harder for me. I love it's beauty, but the cold weather brings increased pain and a flare in symptoms. Sleep, medications, cranial-sacral work with acupuncture, a FAR infrared sauna, and a gluten free diet have been my allies in the battle to maintain the ground I've gained.

Our daughters are fighting their own battles. Our 13 year old is wrestling with the pain of arthritis in her spine as we wrestle with how best to help her. Our 8 year old suffered more hearing loss a few weeks ago. Was it the result of drug ototoxicity or a respiratory infection? By waiting a bit to write about this, I can also report that she has regained some hearing. Ototoxicity does not appear to be the factor and she has returned to the drug that was helping her greatly, with careful monitoring. Medication adjustments for both girls brought new herxes and our journey continues.

The chronic Lyme journey brings difficult decisions. Do the benefits of a medication outweigh the risks? Which is more important, sleep or physical therapy; sleep or homework? No book helps you field statements like, "Mommy, I don't understand. When you're not feeling well, I always let you lie down, but when I'm not feeling well, you send me to school," uttered on her first morning back after missing a week of school for a respiratory infection.

My daughter did make it to school that day, after I reminded her how very brave she is.

Sometimes life is messy. It's difficult. We do our best and celebrate the blessings. Wishing you strength, peace and grace as you face life's challenges.

The Power of Caring

Recently, I have found comfort in cranial-sacral massage and acupuncture. As I lie on the table, soft music playing in the background, the experience for me is quite spiritual. I have been sick for so long, I feel as though my body has come to know that as its natural rhythm. During each session, I feel my body is gently wakened to a balanced state. I am reminded of how it should be. I am at peace, my breathing easier and I often sleep deeply after a session. In the few days that follow, I feel a boost in energy. I imagine medications working more effectively. It is not permanent. I schedule two sessions a month.

For those of you who have not experienced acupuncture, the needles are tiny and many pokes are nearly painless. A few are bothersome, but the sensation disappears within minutes as endorphins, the body's natural pain killers, flood the area. Once the needles are in place, I rest. The needles are removed and my session concludes with a cranial-sacral massage; the gentlest massage of the cranial region at the base of the skull and the sacral area of the spine.

Our youngest has experienced three sessions of cranial-sacral massage without acupuncture. Each time, she has fallen into a deep sleep during the session, breathing as easily as I've ever seen her. She feels disoriented when waking, though the time has decreased with each session and it no longer frightens her. Her last session, she ran ahead of me to her appointment, in the door before I. It helps that we place ourselves in the hands of one of the most caring and gentle women I've met when we walk through the door. The visits have been a blessing, but became even more precious when our daughter noticed I was struggling with a headache a few days ago.

"Mom, would you like a caring massage?"

She gently took my head in her hands. My heart melted. Last night her older sister was hurting. Her solution? Another caring massage, remembering each soothing detail as she administered comfort. Her sister went off to bed with a smile on her face. We all did.

This Thanksgiving, our family is grateful for the gift of caring shared by so many who have touched our lives. When it comes to Lyme disease, it often takes courage to care, and to those who have the courage to make a difference in the lives of others, we are especially grateful! Wishing you and your family a blessed holiday!

A Vacation

The idea came as we were returning home from another round of appointments. Some of our symptoms were weighing heavily on my mind, but with each passing mile, I was calmed by the golds, oranges, pinks and reds that paint the roadsides in a northern Michigan fall. Grammy and friends had enjoyed a color tour earlier in the week. Were we up to a similar trip?

For the past eight years, our road trips have been reserved for appointments. As a casualty of our seemingly endless medical sagas, I realized our daughters had never been to Tahquamenon Falls, a few hours north. The girls are pros at travel and I bounced the idea off my husband because he would need to help with driving. Falling leaves prompted our decision and he spent extra time on homework yesterday, making the idea reality. This morning we headed north. Even our Border Collie was excited at the prospect of a sunny day spent together.

The girls' enthusiasm when crossing the Mackinaw bridge bubbled over, making us both smile. We stretched our legs at the Cut River Bridge, and our youngest exclaimed, "I've never gone across a bridge where it wasn't to go to an appointment! Today, it is like a real vacation because I can just have fun!"

Bless her heart. Miles passed as we sang songs from GLEE, soothing a few rocky moments.

Today we took a vacation. A vacation from school, demands of home, and Lyme. We thrilled in the gorgeous colors of fall and the wonders of the Upper Peninsula. For my husband, it brought back fond memories of a biological sampling trip years ago. For me, memories of trips to Michigan Tech. For our daughters, our mini vacation provided the wonder of possibility. Special memories were created for all of us!

It felt so good to capture a bit of the magic of living, the joy reflected in our faces. What a blessing to have traveled this far in our healing so we could enjoy today! Never has the importance of living in the moment been more clear to me. Wishing you a wonderful magical fall and sending you our very best!

A Birthday

Thirteen years ago today, I woke to contractions. I was 34.5 weeks pregnant and scheduled for a hospital visit and pre-registration later that morning. We met my ob-gyn at her office beforehand. I still remember her words, "What do you think?"

"I think we're going to have a baby, today."

My son had been born 9 weeks prematurely. Doctors tried to stop the contractions without success. This doctor was hopeful my contractions would stop. She sent us to pre-registration at the hospital, asking them to check me again at the end of the visit.

We were given a quick tour by a very nervous receptionist. My water broke at the end of the visit and we were quickly moved into the room we had just toured. I was going to have another preemie.

There were several complications during the birth, the most dangerous being the umbilical chord was wrapped around our daughter's neck not once, but twice. Each contraction would be bring a slowing heartbeat. Enter high doses of Pitocin and I dilated from 3 cm to 10 cm in 20 minutes, avoiding a C-section by minutes. Our daughter arrived, weighing just 4 pounds 4 ounces, tiny and blue. Yet, like Kate DiCamillo's tiny mouse, Despereaux, she was "born with eyes open." My husband and I will never forget when she turned her tiny head to look directly at him the first time she heard his voice outside of the womb. The bond formed at that moment was a bond that will last a lifetime.

She was unable to maintain her own body temperature and her heart rate was of concern. She was rushed to the neonatal intensive care unit, her home for her first week. Doctors discovered a reflux that affected both breathing and heart rate and she would go home with a monitor that weighed nearly as much as she. It would be her guardian for the first year of her life.

The reason for my premature births remained a mystery. I did not drink or smoke. I ate well and exercised. I was not severely under or overweight. I was told that if we chose to have a third child, it would be a preemie. The doctor was right. Nearly five years later, our youngest entered the world, at almost the same age as her sister, weighing just 2.5 pounds. It would be many more years before we would learn the reason for the premature births. I was fighting a chronic bacterial infection. I had Lyme disease.

It has been well documented in scientific literature that the Lyme bacteria, Borrelia burgdorferi, can cause miscarriages, premature births and still births. Transplacental transmission has also been documented and we are convinced both of our daughters have been fighting this disease since birth. I would love to see Lyme tests for mothers and infants after unexplained premature births, though I wish we had a better test, knowing that the current test would potentially miss many.

On this day, we celebrate our daughter, a beautiful young woman, who brings so much joy to those who know her. We give heartfelt thanks to the fabulous doctor who saved her life at birth and to the fabulous doctor who has given her a new lease on life as she continues to fight Lyme and its co-infections. We are blessed beyond words.

A Bit of Mourning

Tonight I can't sleep. It is warm and humid and Borrelia do not like heat. Our youngest has awakened several times, anxious and in pain. Though she's finally sleeping, I've given up for the moment and here you find me. At the computer at 4am. Perhaps I'll sleep better in a bit.

Each time I sit down to the computer, I face the evidence my life has changed. In high school, I was blessed with an English teacher who taught me to write well. With Lyme, what once took minutes can take hours. I read and reread because of multiple errors; errors I never made before.

My girls want to learn to play piano. Our teacher encourages parents to take lessons first so they can help their child during the week at home. This week I took my second piano lesson and teared up. I don't know how to explain it other than the piano acted as a magnifying glass to the weaknesses that have developed in my body. The muscles in my hands and arms were screaming their fatigue. I felt there was a wrestling match taking place between my brain and the rest of my body. The piano teacher was patient and kind as I tried to explain my emotions. I learned if I look at my hands as I play, my brain has an easier time communicating with the rest of my body. I sense piano could become a form of physical therapy in my healing. It also raises the question should I look at myself as I walk? I may try this in a safe place in our home as my legs occasionally have a mind of their own.

To face Lyme, it often takes superhuman strength, both physically and emotionally. Perhaps tonight I needed to mourn for a bit the person I used to be, as I feel the need for sleep returning. Sweet dreams and bless you for sharing this journey.

Happy Mother's Day

It is Mother's Day and I woke to wonderful gifts from my daughters, a book and a beautiful mobile of ribbon, Shrink Art, beads and fabric flower petals. The gift of creativity is very much intact. My best gift is the progress we've made in our fights against Lyme.

Lyme disease is tough. The fatigue, joint pain, headaches, cognitive and neurological challenges wear you down. For a mother with Lyme, the challenge can be especially emotional if you're not able to do all you would like. From reading to playing, cleaning to cooking dinner, all have taken a hit at one time or another; most daily. And for those of us who have passed this disease unknowingly to our children in utero, it can be especially heart wrenching as we watch our children face the challenges of this disease on their own. From their tenuous beginnings as preemies, to their own daily physical, cognitive and emotional challenges, it breaks our hearts. I know. Both of our daughters have been fighting this disease since before they were born. It is all they've ever known.

A doctor once said, "We would never wish something like this on a child, but kids that endure grow to be pretty special adults."

We have seen this in our daughters' perseverance, compassion and zest for life. Just last week, our youngest strapped on her roller blades and helmet, grabbed a bag of dog treats and our Border Collie's harness, tossed a treat down the hall and held on for the ride of her life! As we rescued the dog, we applauded her tenacity, her love of life.

And so today, we celebrate all of the amazing women who have touched our lives and the lives of our children. Our inspirations each and every day! Wishing you much love and joy this Mother's Day!