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.