Team Elle, Wide Open Spaces

It was as not an easy decision to move East.  For one, I grew up on the west side of the state, the side of the state where inhabitants hardly acknowledge there is anything worthwhile east of the Cascades except for possibly Chicago and New York.  Seriously.  Also Monti, my best friend since 6th grade, lived close by as well as my mom and her sisters, my grandmother Bonnie, and extended family.   These women have been my core group for as long as I can remember.  These are the women that birthdays were celebrated with, the women that gave me advice about college and boyfriends, the women that gathered every Fall to make Black Cake in my mom’s kitchen in preparation for the holidays.  These women may be a little cray-cray but they are still my tribe…  The roots run deep on the west side.

Since I was my mom’s only, her teeny tiny as she use to call me, when I weighed in at  5#11oz one early June morning,  it made this move eastward even more complicated and painful for both of us.  But in a way, I often have wondered if it was also a relief for her.  Out of necessity, my mom had created an orderly and compartmentalized life.   Her new husband never wanted children of his own and he made that known in the ways he interacted or did not interact with me.  She always did her best, the best that she knew how, to keep every thing together.  I followed her lead.   I learned to strive for perfection at all times, to remain quiet and to never rock the boat.

Just as with any situation, there is good and bad.  The good translated into a very nice home, nice cars, a lake cabin, gourmet dinners crafted by my mom every night, except Wednesday nights when we went out for Mexican food.  Otherwise our week night dinners were complete with place mats, folded cloth napkins, and music to accompany the regional cuisine (not kidding).  I also was the kid that got to go to 2 weeks of horse back riding camp, a 6 week summer ballet school at Pacific Northwest Ballet and the majority of my high school years at Annie Wright, an all girls Episcopalian boarding school situated on the cliffs above the Puget Sound south of Seattle.  A fairly privileged life by most people’s standards.   But what was missing, which sounds so cliché as a step child, is the feeling that I was wanted or that I belonged.  I knew my mom “wanted” me but I also knew her marriage made things complicated.

Years later, when my husband worked for my step dad, it became increasingly more difficult for both my mom and I to navigate our relationship.   As you can imagine my step dad held the gold, he ruled.  When you are a young and dependent on your parents to survive, this framework for living underneath someone else’s domain is acceptable, it is all you know.  But as life goes, as you enter adulthood, the task becomes to fly away from the nest and to build your own.  Tim and I were not living authentically.   We lived on the land that was gifted to us by my step dad, my husband worked for his company… we had to graciously break free.  I am sure every one was ready for us to do so including Tim and I;  however,  I would imagine for my mom, breaking free did not necessitate us moving all the way to Spokane.

She has displayed her displeasure in some pretty hilarious ways over the years.  For example, when she comes to visit us and meets new people (my Spokane friends) she will usually ask them how they ended up in Spokane ?  As if living in Spokane would never be a chosen destination.  She has honestly stated that people who chose to live in Spokane must be genetically “different”  because why would you migrate west and land just east of the cascade mountains, as most sophisticated people would feel genetically pulled toward the ocean, which the west side of the state clearly offers.  I am serious!  She also knowingly changes the names of our landmarks.  Comstock park is Compost and she calls Manito Park, Maniteee or Maneeetooo Park.  Initially her attitude contributed to my insecurities and made me question my decision to live here;  however I have learned to just smile and laugh when ever she comes up with a new nick name for one of our beloved destinations.  And to her own surprise, over time she has come to acknowledge and boast of the treasures of the Inland Northwest.  She loves the easy access of our airport, les jardins francais at Maniteeee Park,  our Episcopal Cathedral, the Rocket Market on 43rd for the organic produce and men in tight bike shorts, and Luna’s wine list and pizza.  However, she still despises our long winters as do I.

It was July 2003 that we launched.  My mom gave me a long hug good bye, we both tried not to cry.  I knew she did not want to let me and her sugar cookies out from underneath her wing… not yet, not ever.  And I did not really want to leave her, not yet, not ever.  But sometimes we have to do things that we don’t want to, so that we can get to where we need to be.   Painful, so painful for me still as I write.  With my light blue Passat wagon loaded down with clothes and household goods as well as Amelia, Elle, Bubba our firsts family yellow lab, and June my Persian cat, we slowly rolled out of the driveway as we waved good bye to Dragon Fly Ranch.  My mom and Tim stayed behind to finish packing up our home.  Tim would be meeting up with us a few days later in Spokane.   As I turned the corner toward I-5, I turned on the radio… ironically, Dixie Chicks Wide Open Spaces was being broadcasted.  “Turn it up momma!”  Amelia shouted from the back.  I obliged.

At that time, in my mind, Spokane held the promise of unconditional and uncomplicated love which translated to a pack of cousins for Amelia and Elle, the hope of having sisters to share in the raising of Elle as I did not yet have the courage to go it alone, more sunshine than rain and long snowy white winters, and a sense of belonging to a big loving family.   For the first few years, our hopes were realized.  Tim’s family welcomed us in, we partook in several magical back yard BBQs with cousins splashing in the pool as well as gourmet holiday dinners at my sister-in-law’s home.  But as things go in life, circumstances shift, cousins grow older, and lives take different directions.  Our family has not been spared.  I would be lying if I did not admit that this has been painful;  especially since I am usually having an internal battle with my need to be with my mom and near the water.   And as I have written in previous blogs, I know I have high expectations of myself and those around me.  This is both my strength and my curse.  It is such a delicate dance when you are not blood related but still have a stake in the game.  I think mostly what I have learned over the years is that Tim’s challenges with his relationship with his family ( we all have them, no one is immune ) existed way before I arrived into the picture and it is not my place or my job to fix or compensate for HIStory.  Additionally, with the extra burdens we have faced in raising Elle, I know that I have not had any extra energy or room in my heart for complicated dynamics.  I am tapped out.

Ultimately we all just have to do the best that we can, assume that every one else is doing the best that they can, and take care of our own little family unit… nothing else really matters.  My grandma Bonnie has said to me on many occasions “Count your blessings and don’t borrow trouble Dear Girl ” .

 

 

 

 

Team Elle, Fields of Gold

The first several months, and I mean several, after Elle’s diagnosis, Tim and I were lost. We both were acutely aware of how the earth had shifted from beneath our feet and everything that we had dreamed about for our lives together was no longer going to be our reality.  I remember one summer day, in our attempts to hold onto the notion of what a “normal” family looks like, we took our two girls to a small summer festival north east of Seattle.  Face painting for Amelia, food stands, and music… just trying to be a normal family doing a normal activity surrounded by normal people with normal lives…  We were outsiders in disguise.  

We found a place under some trees, laid out our blanket, and sat down to listen to blue grass fiddles while Amelia snacked on cotton candy.  Tim lifted Elle out of the Kelty backpack and sat her down between us on our blanket.  I don’t remember all the specifics of this moment, but I do remember that at one point we were both observing Elle, how she was holding her body, tilting her head,  the fact that she had to wear glasses to correct her lazy eye.   It seemed to be one of those moments where the gravity of our situation set in for us both at the same moment in time.  We looked at each other, and we just finally knew at the deepest level our lives would never be the same again.

From the beginning, Tim has always been my rock, physically and emotionally.  If you know Tim, you know he is built like a line backer but has the softest of hearts.  His blue eyes and dimples stole my heart in the beginning but it was his mental out look on life, his love of adventure, and his emotional strength that has kept me by his side for over 24 years.  When we were first trying to make sense of what was happening with our 2nd born daughter, every book I read about having a special needs child warned us that our marriage would must likely suffer and that we had a less than stellar chance of staying together as one.  Apparently it was not enough to grieve over our daughter’s diagnosis but we needed to also prepare to sacrifice our marriage too… double blow.  I eventually just stopped reading all those books and have learned over the years that I already hold my own answers, my truth…

At the time, I was not really clear what or how my husband processed his feelings about his luminous blue eyed daughter.  Men can be difficult to read.  During that time he was working for my step dad’s company spending a few days most weeks in Portland drumming up business.  I was alone a lot or at least it felt that way.   Although we lived in a newly constructed custom home in the country, I longed to be in a cookie cutter suburb with other mothers and kids to surround and distract me from my pain.  I desperately needed other women to help me to learn how to be Elle’s mother.  I needed someone to share in this experience of being her mom as it felt too heavy for just one mother to carry.

It is strange how in the midst of grief it feels as if your life is frozen in time while everyone else in the world continues on without you enjoying vacations and family gatherings.  One summer evening while Tim was away in Portland, I decided to take Amelia and Elle to a field of sunflowers on the edge of the Skagit Valley.  As we drove out this long country road to our destination, my mom and step dad passed me by going the opposite direction.  I don’t believe they even noticed that they had just passed us.  But I do remember thinking they must be on their way home from dinner and how the fuck can they be out enjoying themselves when I am so alone and scared.  Perceptions are deceiving.  I had a lot of work to do, soul work.  The sunflower fields helped though…

In early Fall, when the Valley is at it’s most bountiful season and when the Cinderella pumpkins are ready for choosing,  Tim arrived home from one of his business trips in Portland.  “Shelley I have something I want you to listen to after we get the girls to bed tonight.”   he said.  A little while later after I had finished nursing Elle and Amelia read Go Dog Go to her daddy, Tim took my hand and led me to our den.  “I discovered this pretty amazing musician while driving home today and wanted you to hear it too..”  he said.  I settled down on the pull – out couch while he queued the music on our dial up internet.  It took a few minutes.  Her voice began to sing the melody of an old Sting song, Fields of Gold.  Angelic, haunting, and soothing all at the same time.  I looked over to Tim and his eyes were wet with tears, which immediately made me cry … again.  “Will you stay with me, will you be my love among the fields of barley, I swear in the days still left, we will walk in fields of gold….”  Her name is Eva Cassidy, he said.  Tim went on to tell me how Eva had fought a long battle with skin cancer and it was not until after she had passed away that her close friends released her music for the world to hear.  Eva’s rendition of Fields of Gold is second to none.  I learned that summer night that music was one way that my husband processes his emotions.

After we listened to a few more of  Eva’s melodies together,  we came to the decision that we needed to make a move to Spokane where Tim’s sisters lived with their husbands, kids, and his mother.  He described to me his memory of arriving to Colorado to be with his family after his grandfather had passed and that by being with his family  he was finally at peace and knew everything would be ok, in spite of the loss of a  man he adored.  I was also ready for a change.  Even though my mom and I were very close, I needed to find my own way for awhile, to find my own wings.  It was not an easy decision, but Tim and I both felt like we had arrived to a place with clarity and peace.

The Inland Northwest is surrounded by Fields of Gold.  Many years have passed since those early summer days among the fields of barley.  Tim and I have seen our children run as the sun goes down among the fields of gold.  I’ll always remember you, and how you were my rock, my love, when the west wind moves upon the fields of barley.  You can tell the sun in his jealous sky when we walked in fields of gold.  When we walked in fields of gold, when we walked in fields of gold…

 

 

 

Team Elle, Into the light

If you have lived in Spokane for more than two years, then you remember the wind storm a few weeks before Thanksgiving in 2015.  No one escaped the ominous grasp of mother nature that night.  I remember getting the text from my oldest that her high school was releasing the students a little early, so they could all arrive home before the storm hit our little city also known as the Inland Empire.  The message traveled fast and businesses and clinics were closing early, except for the one I worked at.

After I saw my last patient, I swiftly gathered my things and headed to my car.  The wind was howling like a screaming cat and particles of dust and leaves were swirling in the air.  The drive home felt much like a scene out of Wizard of Oz.  Thick dark clouds, trees bending into perfect right angles, broken branches swirling.   Flying monkeys were all that was missing from this extra ordinary scene.  I needed my ruby slippers in a hurry.  Or a broom… huh… which one ??

A little back story.  Starting in mid October, I had begun a rigorous work schedule, more rigorous than it already was.  One of the 3 nurse-midwives in our group had abruptly quit, leaving the two of us to cover clinic and call 24/7 with approximately 20 mommas ready to delivery during each month.  We kept  our promise to our patients that they would have a midwife attended birth as compared to having our back up physicians share our call.   Our new schedule consisted of one midwife in clinic for the week while the other midwife took call for the week and then flipped schedules the following week.  Total Insanity.   Clearly, I had not learned one of life’s most valuable lessons, self preservation.  Looking back, I had spent the last 10 years pushing hard to follow my dreams and to have “it” all at once.  A perfect career and a perfect life.  Admirable but not sustainable.  I know better now.

All my littles were home safe and sound by the time I arrived.  They had already begun to gather flash lights and candles piling them on the kitchen island.  My husband made it home about an hour later, just as the lights went out and total darkness set in.  Elle was becoming increasingly agitated and frightened by the change in her environment.  Quite typical for autistic children.  I was mentally preparing for a very long night.  We made up a tray of summer sausage, cheese and crackers and gathered around our gas fireplace to discuss our survival plan.   Where was the safest place to sleep?  What about our gas tank in our pool house – if a tree falls down could that cause the fuel tank to ignite and explode?  My husband was ruminating on all the potentials and what ifs in an effort to keep his tribe safe.  I love that man.

While we sat around the fire place, I noticed Tim’s hands were clammy and he seemed to have a light sweat emerging on his forehead.  He had been complaining of lower abdominal pain for the past few days.  Shit, I knew this would not turn out well.  After giving Elle a little magical Lorazepam to calm her nerves, we all settled into a restless sleep for the long night.  Tim and I both woke early the next morning and by this time our home felt to be the same temperature inside as it was out, below zero.  Additionally his abdominal pain had kept him awake most of the night and he did not look well.  Within a few minutes he was out the door on his way to Sacred Heart ED for help.  The girls were still asleep but Charlie was up and we decided to go get coffee (COFFEE FIRST) and explore the mess Mother Nature left behind in her furry.

We made it approximately 100 yards before we became fully aware of how much damage had been done during the darkness.  Pine trees blocked our neighborhood streets in every direction, power lines down, and the hum of generators could be heard in the distance.  Charlie’s eyes were wide open, he had never seen anything like this before and neither had I.   Luckily, the wrath of mother nature had preserved Starbucks, miracles do exist.  Vente Americano with extra cream please, I knew it would be a long day.  Next stop, Home Depot.  Armageddon was ON!  Frantic people were hording batteries, flashlights, mini generators, and water.  The power was down city wide, it was below freezing, and Avista crews were broadcasting it could take 5 to 10 DAYS, not hours, to restore our power, our lives.

Time to make a game plan, an action plan!  Time to call the Grande Hotel.  Within minutes I had reserved a room for our little family.  It is one thing to survive a few days without heat and electricity as a self sufficient adult, but quite another when you are responsible for 3 kids, including one with special needs.  It did not take long before our bags were packed with only the essentials including electronic devices and chargers.  Modern day necessities.  Fortunately, our care giver for Elle at the time, Miss April, was one of the few people in our city who had not lost power and she agreed to take Elle until we got settled in our new home away from home and also at night so my call schedule would not disrupt her even more than she already was.  On the way down town, we stopped in the ER to see how daddy Tim was coming along in the ER.  Not good.  After several blood tests and a CT scan, he was admitted to the 5th floor for a contained micro perforated diverticulum.  Ugh.  I was on my own.  Not a problem, keep moving.  We all gave him a quick kiss and I told him I would come see him later during my evening rounds.  Sink or swim, I always choose swim.

My midwife partner and I switched schedules so my odds of being more available to my kids during these unforeseen circumstance would improve.  At the time, she was a DINK (double income no kids) and living the free life.  Pas moi !   Now I would be on call for births as compared to being tied down to long clinic hours.  It was a gamble as to which option would be best as a pseudo single mom, but I rolled the dice anyway.  There were several women about to deliver including one woman in particular that had become some what of a “soul” sister over the course of her pregnancy.  Free spirited, boundless energy,  beautiful, yet she faced some of the same dark troubles I had in my younger days.  She was one of my patients that I had helped to guide back to her center, dust off her wings, and prepare her for life with baby.   There was also another woman I knew was due any day now.  She was the type of patient that no one else could really deal with but me.  Very opinionated, talked a lot and only came to appointments when she felt like in spite of her elevated blood pressures.  I had cared for during her first pregnancy so I think she knew she could trust me.   When she did show up for her scheduled visit, she often brought her 3 yo daughter, the one I had caught a few years back.  She called her Athena.

We were without light and heat for 4 days and 7 hours.  These were some of the most atypical, stressful, and beautiful days of my life.  The Grand hotel spoiled the displaced Spokanites with lowered rates, fresh hot coffee, and 5 star service.  No matter what time of day or night I went to the lobby I always came across a neighbor or co-worker who had also made The Grande part of their survival action plan.  Every where you looked, hotel guests were sharing their storm stories and giving each other hugs and words of encouragement.  Spokane is an awesome community to be a part of.  Lucky.

Every morning at about 5am, I snuck out of my hotel room without waking Amelia to make my way up the hill to our home to see if our power had been restored.  Charlie had moved in with a school friend that still had power and Elle had been spending the night with Miss April.  Serious Team Work and proof that it takes a Village.   Stop lights remained down, huge trees still blocking the neighborhood side streets, and homes that I had become use to seeing with a warm glow from the windows remained dark for days.  It was a very peculiar feeling to walk through our home each morning.  It was a time capsule for our lives before the storm.  Dirty dishes in the sink, stacks of untouched mail and unmade beds.  On day 2 there was a fed ex box on my door step which contained emergency battery operated lights my step dad had mailed over the day before.  These lights saved me.  It was impossible to see where I was walking at 5 in the morning during November.

On the fourth night I was called at midnight to attend the birth of my soul sister, she was expecting her first baby.  The late night- early morning calls are bitter sweet for every OB provider.  Fighting the urge to stay in the land of Nod, finding the strength to trade my warm comforter for chilled leather seats in my vehicle and to wake up enough to safely catch a baby is a serious fucking challenge.  On the other hand, attending one of life’s greatest miracles has been one of my greatest honors and privileges.  As I left the hotel lobby at about 1am, with a warm cup of fresh brewed starbucks and a prewarmed car compliments of the hotel valet service, I remember thinking to myself that I could get use to hotel living.  It’s a thing right?

Jen had made quick progress during her labor and was ready to receive her baby not long after I arrived.  Her husband and the nurse anxiously cheered her on in the few minutes leading up to the birth.  Just as I was about to put on my blue gown, I heard the familiar text ringtone from my phone.  Normally I try to ignore interruptions during these sacred moments but due to the fact that all of my family members were displaced by the storm, I took a quick glance.   It was my neighbor letting me know that the power had been restored to my home.  I smiled and shared the good news with Jen and her husband as I prepared to catch their precious baby.  Only pure joy and gratitude filled the delivery suite as I skillfully guided the baby from within Jen’s body.   Just as my midwife had told me when I gave birth to Amelia, I instructed Jen to reach down and take your baby.   Jen looked shocked but followed my lead and began to sob as she reached down and pulled her beautiful baby boy from her body and directly to her heart.  Tears flowing all around, me included.  Whitman was born from the darkness and brought into the light by the shear strength and perseverance of his mother.

I am still amazed by this thing called birth.  Just because two people have sex/make love … 9 months later a perfect new human is born.  It is a true miracle.  And the sheer strength and perseverance women go through during this process, is beyond admirable and completely selfless.  Women amaze me.  My only wish is that women as a whole, truly knew how amazing they are.

After sneaking a few more hours of sleep, I drove up the hill to confirm my neighbor’s text was not just a dream.  I was so excited to start of the heat, turn on a few lights and start the dishwasher.  Ahhhhhhh, the simple joys of life that we all take for granted until they are stolen away.  It was time to go make morning rounds, check in on Tim and then return back to our true home.  Tim was definitely looking much better and his doctor gave him discharge orders for later that day.  Things were starting to return back to normal.  Thank the lord.  I took a few of Tim’s belongings with me including some beautiful flowers his mom had sent him during his hospital stay.

Before I could return to the hotel to gather up our belongings I had to make one last stop on the mother baby unit to see Jen and baby boy Whitman.  I also needed to round on Athena’s mother, she had delivered the day before.  Once I had done by due diligence, I made my way out to the parking lot feeling buzzed on adrenaline and caffeine.  Just before I climbed the stairs I saw little Athena skipping towards the hospital entrance with her grandma on their way to meet her new baby brother.  I heard her grand mother say “Athena look, that is your mommy’s midwife.”  Athena’s long dirty blonde hair was blowing in the cold wind and the sun was shining bright on her.  “Hello Athena, remember me ?”  I said as I walked toward her and kneeled down to her level.  She had beautiful deep brown eyes that seemed eerily familiar to my soul.  Athena was precocious and wise beyond her years.  Just like my Amelia.   “Those are really pretty flowers.”  She stated.  “They sure are pretty Athena, just like you.  And you know what, these flowers are for you.  Congratulations on becoming a big sister.”  I said.  Her eyes grew big and she giggled with joy as I handed them to her.  As I stood back up her grandmother was starting to tear up.  “No one has ever done anything like this for me or my granddaughter before.  Thank you so much.”  I gave her a hug and told her how proud I was of her daughter and looked forward to seeing them in a few weeks.  And with that special moment sealed in my life treasure vault, I began the journey of putting my home and my family back together again….

In spite of our challenges, our circumstances, there is always goodness and richness to be found.  You just have to remain open to these gifts.

 

 

 

Team Elle, Phoenix

Not sure what I want to write about this morning.  I do want to say I am really pleased by the overwhelming show of support and love for our journey with Elle through my writings.  I have had feelings of validation from all the facebook comments and private messages and excited to hear too, that my readers believe i have a gift of writing… that’s cool.  The down side to starting this blog is that instead of going to GD Phyzique in the mornings, I am using my time to write.  But my soul sister Marci told me that I was still exercising, exercising my brain and that that counts too.  So great to have friends that understand us, isn’t it!  A life without close friends would be unimaginable, we need each other.  I need you guys.

If you have time and if you feel like sharing, I would love to know your story too;  and if by me sharing mine, it has made an impact on your perspective of your own life challenges.  Coffee date, wine date, or facebook post… what ever.  I know I am not alone in facing and overcoming unforeseen circumstances.  And what I am finding is that by shining a little day light on my challenges, the darkness is not as dark any more.

I think for the most part, men have a “go it alone” mentality.  But not us women.  It’s not that we can’t handle our challenges on our own, of course we can and we do every single day.  But women have an innate need to connect with others like them, to know that they are not alone in their secret battles, and to take time out to celebrate life.

As a nurse-midwife I am in a unique position to hear stories all day long told by women younger than Amelia, my oldest daughter, all the way through to women as old as my grandmother Bonnie.   Sometimes I am exhausted by it all and try not to totally check out but for the most part I spend my working hours being constantly reminded of the strength of the female spirit.

As life goes, we all face times where we must dig deep and  remember that we were meant to do hard things.  Often times in clinic, my patients arrive broken.   Fatherless babies, a secret alcohol addiction, ashamed of their bodies, and fear over contracting an infection because they just found out their husband of 9 years has been cheating with other women since they were married, a breast cancer diagnosis … all very trying circumstances …  Countless stories.  And in a strange way, these are some of my favorite patient interactions… not because I enjoy seeing other people in emotional pain… obviously.  But because it is an opportunity to guide a woman back to her center and to help her find her wings so that she can rise again.  Phoenix.   As the old saying goes, nothing more powerful than a woman on a mission.  I am on a mission in case you have not noticed… a mission to tell my story in the hopes of finding some peace and hopefully to help others to know they are not alone…

 

 

Team Elle, a warrior in training

Early Intervention turned out not to be an invitation to the club for moms with disfigured kids and miserable lives.  I was wrong.  Early intervention is more like the opening scene of one my most recent favorite movies this summer, Wonder Woman.  If you have not seen it, I highly recommend it.  I found the opening scene of that movie to stir my inner goddess warrior.  The big screen is filled with muscular bronzed women engaging in training for battle and perfecting the art of protecting their own.  Amazzzzzing.  I must have been reincarnated from that era.  I was probably one of the only people in the theater that quietly cried during the opening scene of Wonder Woman….  kind of embarrassing to admit.

In the beginning of our journey with Elle I was like one of the young Amazon women, a warrior in training.  I would say at this point, I have become some what of a matriarch of my early intervention tribe.  It has been my mission knowingly or not, to help younger moms who face extra ordinary circumstances, to find their strength to carry on and to help guide them on their path towards strength, acceptance, and  love.

As a midwifery student, my clinical mentors (goddess midwife warriors) insisted on the following approach to learning any difficult yet necessary life saving skill:  watch one, do one, teach one.  Repeat.  I have found that this is what I have done through out my journey with Ellie as well.  Although each of these phases was drawn out over several years, as compared to a few months in midwifery school.  Let’s just say I was in the watching phase for a few years.  I observed countless speech, OT, and physical therapist attempt to evaluate and elicit typical development milestones from my little one.  Just as with any profession, some of the therapist we came into contact with were burned out and their hearts were not into it any longer.  However, without a doubt, those therapist that still possessed their passion to guide and heal the wounded, were some of the highest quality people I have ever met in my life .

Fortunately, Elle and I came across one of these angels very early on.  We were still living in Skagit Valley at the time and would drive out a beautiful country road just east of Mt. Vernon where she kept a small physical therapy studio in her walk out basement.  Every week she worked with Ellie for just under an hour watching how she moved her body and mindfully giving me instruction on how to encourage developmental progress as part of normal play time.  Unknowingly, she was also sneaking in therapeutic messages for my broken heart.  She always highlighted all the things that Elle was doing instead of focusing on what Elle was not….  She knew I was struggling.

Towards the end of our time with her, just before Tim and I were preparing to move to Spokane, she invited one of her colleagues, to observe Elle during her physical therapy session.  She was a sensory specialist of some kind and was employed at a well known clinic near Lake Union in Seattle.  She mostly watched Elle through out the 50 minute session, interjecting here and there.  And then, at the end of the session she began to provide her summary of what she saw as Elle’s needs moving forward.  She went on to say as she firmly took my arm into her hands, “Shelley your job as Elle’s mother, is to show her WHO she is, WHERE SHE IS in relationship to her body and physical space.  To TEACH Ellie WHERE SHE BELONGS… all through deep touch, consistency and love.  Tears started to trickle down my cheek.  “That is kind of ironic because I am starting to believe that this is what Elle has been teaching me for the past few months.”  I replied.

And it was.  Elle’s purpose on earth was slowly being revealed by something or someone bigger than I.  Before Elle, on the surface, my life appeared “perfect”.  I was married to my college sweetheart, I had a 3 year old precocious and darling little girl,  lived in a custom home built on one of the most serene pieces of land in Skagit Valley that was gifted to me my by my step dad and a career as an OB nurse which I enjoyed very much.  But underneath the water’s ripples, I was unwillingly in what felt like an eternal battle with my inner self.  My brain.  Was I good enough, had I made all the right choices, I should have gone to medical school, what if I become mentally ill like that unknown grandfather, do I really belong in Skagit Valley, maybe I should have become an attorney.  This was the daily showing that I did not intentionally purchase tickets to.  But because I was thrust into the Early Intervention Club, my brain slowly began to glide into a new gear and I was beginning to discover a different way of being with a purpose much bigger than all the fears my brain had focused upon in the past.   I wasn’t helping Ellie, she was actually saving me.  Elle was showing me WHO I was, WHERE I was in relationship to my body and physical space, and TEACHING me WHERE I BELONG… right there with her.   Elle’s presence in my life was leading me to a deeper level of consciousness and guiding me to my inner warrior.  Grateful.

 

 

Team Elle, to be a teacher

June 28th 2002, the day after my birthday, I was on the phone by 8:55am following up with the referrals I had received the day before from our pediatrician.  Meeting Dr.  McGlauphlin was high on my list because I was convinced that he being the expert, would correct the course of my daughter’s life and navigate our sails back to the itinerary we had already planned for our life with Ellie.  She was suppose to be Amelia’s little sister, she was going to chase Amelia’s around the house in her jammies on Sunday mornings with sticky fingers from our Sunday waffles.  And Amelia was going to have a little sister that she would whisper sweet secrets to when her momma was not looking.  I  was going to sign her up for ballet class and watch her perform in the end of the year recital with her big sister.  And someday she was going to grow up and go off to college where she would study whatever her heart and mind desired and officially make her parents empty nesters since she would be our youngest.  That was the plan I had taken for granted.

Thanks to my innate ability to be persistent it was not long before I had managed to be at the top of Dr. McGlaughlin’s waiting list.  My mom arrived by 8am with her Apple bag filled with activities she and Amelia would do for the day while Tim and I took Elle to her appointment at Children’s hospital.  This was no ordinary tote.  It was an old cream colored canvas bag with a picture of a large red apple and a green stem on the front that my mom had used in her previous career as an elementary school teacher to carry her school supplies back and forth from her classroom to our home.  Even to this day when CeCe comes to visits, the kids always ask her if she has brought her Apple bag.  It has become one of our family traditions to see what treasures our CeCe has managed to collect for her sugar cookies since her last visit.  Lucky kids.  My mom is a remarkable grandma (which she does not like to be called… hence the name CeCe – a version of Catherine she gave to herself once becoming a …shhhhh don’t say it).

As always, Tim did a perfect job navigating us from Dragon Fly Ranch through the morning rush hour on I-5 to Children’s hospital.  Normally, I actually like the hospital environment, a place where everything is clean and orderly.  But this day was different.  This day my daughter was the patient and I had no control over her care or outcome.  I remember the nurse stripped her down to her white cotton onesie, weighed and did the dreaded head circumference measurement.  I prayed her brain had miraculously grown over night and today Dr. McGlauphlin will apologize for all the hassle we had been through and diagnose her as “normal” so that we could get back on schedule for the itinerary I had already planned for my life with Tim and our kids.

We were brought into a private room by the medical assistant and a few minutes later a small collection of professionals including the nurse, the medical student, a resident and Dr. McGlauglin entered the room.  I don’t recall the specifics of the conversation but over all it wasn’t good.  He reviewed her records to date, asked us a few questions, did a brief exam of my luminous blue eyed baby girl and then formally diagnosed Elle with microcephaly with developmental delay.  He told the nurse to make sure to send orders to get Elle enrolled in early intervention… what the fuck is early intervention I thought.  And then I realized it was an invitation to join the moms of kids with special needs club.  The club that I refused to be a part of.  That club consisted of disfigured kids and parents with miserable lives.  That club was a club where the mothers all must have previous drug histories and took shitty care of themselves during pregnancy and that is why their child had issues.  That was not me…  that was not going to be my fate with my daughter.

“Do you have any questions Mr. and Mrs. Northern?”  he asked before he left us to be alone in udder despair.  With tears streaming down my cheeks, I asked if he thought she would ever have the potential to be a teacher.  What is her brain capacity going to be ?  Now obviously teachers are very bright people and I have no idea why I framed my question in that moment in that way…  But looking back I knew she would most likely not have the brain power to someday cure cancer but desperately wanted reassurance she would at least be able to have a simple and fulfilling life? Dr.McGlauphlin replied that we have no way of knowing at this time what her future will look like and that there was still a chance that she could some day become a teacher.  And with that he directed the nurse to stay behind and help clean up the mess he had just made of our lives.

Tim was quiet and wrapped one arm around my shoulder while I held Elle against my heart and broke down…. again.  The nurse was so kind bringing me water and tissue as my fought my bodily urge to bellow uncontrollably.  She spent over 45 minutes in that room cleaning up the mess that Dr. McGlauphlin left behind.  She even shared her story, that she had a grown daughter with special needs, and that this experience had taught her how to love what is not perfect.  Eventually, Tim led Elle and I out of the chamber and out to the waiting area.  He told me to stay right there with Ellie and he would go get the car.  I still remember to this day, holding Ellie tightly against my body while leaning up against a pillar in the spacious lobby.  A blur of families scurrying around me all sharing one thing in common, their babies were not normal.  Tears continued to stream down my face and I could not catch my breathe.  Hurry Tim, don’t leave me in this waiting room with Elle one second longer…

This was a really sad day.  I am crying as I am writing this and this happened over 15 years ago.  But here is the thing.  Here is that golden nugget that my readers need to hear so that they can go on with their day…   Ellie did grow up to be a teacher after all.  In fact, I often tell acquaintances and friends who want to know more about my life with Elle, that she has taught me more than I ever could have taught her.  I am not just saying this to make myself feel better or to lessen my pain.  It is true.  And for those people who have remained by our side through out this unforeseen course, I am confident Ellie has taught them many invaluable lessons as well.  God must have heard my plea that day at Children’s hospital.  He must have some how been alerted by the angels that I had cast my wish for my daughter to grow up to be a teacher one day….

My wish was granted.

 

 

 

 

Team Elle, Hope

Charlie truly has been a mighty blessing in our lives.  His birth was a significant turning point in my journey moving away from darkness and toward the light.  For the most part my pregnancy was worry and stress free which I directly attribute to the messages I had received from my angel in the sky.  Also, my OB doctor at the time, was like a big sister to me.  She made time for my concerns, she always made me feel comfortable and at ease,  and she ordered as many ultrasounds as needed for peace of mind that Charlie’s brain was developing on schedule.  In fact I am probably one of the few mothers who celebrated the ultrasound which showed her baby’s head circumference was in the 90th%.  After all my years as a labor and delivery nurse, I knew a woman’s body was more than capable of recovering from a difficult delivery but I did not have the same confidence my heart would ever be whole again if the gods deemed I should become the mother of two children with special needs.

The first year of Charlie’s life was equivalent to any Spartan Race all my exercise crazed buddies are competing in these days.  The first leg of the race included breastfeeding Charlie while simultaneously spoon feeding Elle.  (She was 3 years old at the time)  The next obstacle on the course was positioning Elle on my left hip while awkwardly carrying Charlie in his car seat with my right arm up steep flights of stairs and down long hallways to Ellie’s speech and OT therapy sessions at Milestones therapy services.  Last but not least, the final heat of the race included double diaper duty for what seemed like eternity.  It took serious team work between my husband and I.  Some how we managed to not give up.  Again, sink or swim, we dug deep and swam hard….

There are two main lessons from that first year of Charlie’s life.  Number one, when you are thrust into a world where nothing comes easy your ability to truly appreciate the smallest of life’s milestones grows immensely.  Second, the old saying that God works in mysterious ways, is fucking true.  August 10th 2005, Tim and I threw together a simple first birthday party on our back deck on Hamblen street.  This party was nothing like the champagne brunch we had had for Amelia’s 1st birthday party.  When Amelia turned one our lives had not yet been turned upside down and our innocence had not yet been stollen.  We were living a dreamy first year experience that every parent takes for granted, including ourselves.

By the time we got to Charlie’s first birthday, we were a different family.  Our hearts had been broken, we were busy patching things together the best that we could and we did not have much extra energy for throwing a special birthday party for Charlie.  I still remember this day very clearly because something extra ordinary happened.  After 6 weeks of intensive physical therapy during the scorching summer months, Ellie stood up all by herself and took her first steps in the middle of our deck in front of all of us.  She was 3 years and 8 months old.  I think my jaw must have hit the floor.  I remember we all cheered and celebrated this occasion and the fact that Elle chose this special day, Charlie’s first birthday, to give us one of the best gifts we could have ever asked for.

No matter if you call “it” God, the Universe, Buddha, Allah, She/he, or Love….  we are not alone in our life quest.  We are never alone.  Too many extraordinary things have happened to deduce that “God” does not exist.  How is it that out of all the days in the year, Ellie took her first long awaited steps on the day we celebrated Charlie’s birth.  It is as if she wanted to bring the best present to the party and she and God were in cahoots together scheming the most special gift a family could ever ask for…. HOPE

 

Team Elle, A Mighty Blessing

That’s the thing about this experience of being my daughter’s mother, I have demanded of myself to never stop working towards creating something beautiful for her, for her siblings and for Tim and I.  Although our daily struggle is real I know without a doubt that something much bigger much more powerful than I am, has been following right along with me whispering words of encouragement, sending me messages of strength and aligning me with earthly experiences that can not be explained.

November 2003, the day after Thanksgiving was one of those days that can not be explained.  We had just moved to Spokane in July with the high hopes of providing Amelia a close relationship with her Northern cousins since we knew she would not have a typical sibling relationship with her little sister.   We also desired for Ellie to have a pack of cousins to grow up with, who would love her unconditionally because we knew the world would not be so kind.  

The morning after our first Thanksgiving dinner at my sister-in-law’s home,  Amelia and I boarded an Alaskan shuttle back to Seattle.  It was a family tradition with my mom and aunties to kick off the holy jolly season at the opera house in Seattle for the Pacific Northwest Ballet’s Nutcracker.  After Amelia and I took our seats, a flight attendant who was on her way to her hub sat in the seat next to me.  We exchanged the usual niceties while trying to not engage in a lengthy conversation about nothing.  As our jet left the gate, she reached into her duffle and pulled out the bible and began reading scripture.  My first thought was what does she know about this captain or this jet that I don’t know.  Should we exit the aircraft while we still can ?  Does she not have faith we will make it SeaTac.  Huh.

We lifted off the tarmac and into the heavy clouds.  Amelia and I occupied ourselves and discussed how excited we were to be meeting Cece for the Nutcracker.  About 3/4 of the way into the flight, the flight attendant started a conversation with me about nothing. And then she shifted gears and made direct eye contact.  She stated you are going to have a baby soon.  I thought this was one of those moments where someone thinks your pregnant when you are actually just “curvy”.  “Oh no, I am not pregnant.”  I proclaimed.  I was kind of annoyed as I had just lost a few pounds with weight watchers.   She went onto explain, ” Oh no, you do not look pregnant.  You are going to have a baby and he will be a mighty blessing.”  she said.  Pause.  “Who are you?”  I inquired.  I assumed she was like my woo-woo auntie from Port Townsened, the same type of person that believed you can telepathically heal, see chakras, and feel energy vibrations.  I presumed that this was the universe she was coming from and it did not unsettle me one bit.  I actually find this way of thinking slightly intriguing.

She replied that ever since she was a little girl she had a special gift in which she believed God used her to convey messages to others in need.  She went on to say that as soon as she boarded the plane she felt drawn to sit in the seat next to me in spite of the fact that she recognized a former high school mate towards the back.  She explained that she never knows when this gift will appear but when it does she takes head.  

“Well is he going to be ok?”  I asked out of curiosity but mostly fear.  I had so much fear.  I wanted to have another baby but not because Ellie was not perfect.  I believed that rational to be unjust and simply not morally sound.  How does a mother “try again” because the last child was not what she had wanted.  It was never in our plan to have three children and  I was confident in knowing that had Elle been typical I would not be entertaining the idea of a third.   I also was scarred to death of “this” happening again.  And how on earth would I survive two children with a severe disability as I was barely finding my way with having one.

“What do you mean she?” she replied.  I went on to give her the short version of my journey thus far with my daughter.  A few seconds passed and then she proclaimed  “God wants for you to know that your daughter was sent to you as a gift.  He wants for you to stop trying to “fix” Ellie and to understand that she was sent here to heal you.”  My heart stopped and inner core began to tremble again.  She went onto say she did not know when this boy was going to arrive but that he would be strong and that he would be a mighty blessing.  She also conveyed that we are all “ok” in god’s eyes and that Elle is “ok” too.

We had a smooth landing at SeaTac and she gave me a quick hug as she told me that her name is Shelley and lives in Liberty Lake.  She often is called upon by the police department to help solve missing people cases and she and her husband also owned a K-9 training facility Sharp Command.  Really, her name is Shelley.

Two weeks later I had a positive pregnancy test (a little pre-turkey love).   Four  months later I had an ultrasound confirming a baby boy which brought my husband to his knees and together we wept.  And on August 10th 2004. surrounded by my husband, mom, mother-in-law, and best friend I gave birth to Charles Vincent McChesney Northern.  A mighty blessing indeed.

Team Elle, Goldberg Variations

There are certain pieces of music that have resonated with me in particular along this journey with Elle.  Somewhere Over the Rainbow and Fields of Gold are definitely in my top 5 list.  But probably my favorite piece has no words at all and was composed by a man who walked the earth over three hundred years ago.  You may have heard of him;  Johann Sebastian Bach born March 31st 1685.  What a timeless gift he has left behind for all of us 21 st century humans.  Most of his music was composed for the piano which I happen to believe to be the most beautiful instrument to this day.

Since the age of 7, my mom shuttled me to ballet class several times per week.  Most of the ballet schools I attended were in run down buildings with rickety wood floors, brick walls and lofted ceilings.  Four days a week including Saturdays you would find me at class, perfecting my body alignment in tempo with all the greatest classical composers including Chopin, Mozart and Bach.  In most ballet studios the music was compliments of a scratchy turn table however, by age 14, I had managed to be invited to take first position at the ballet barre at Pacific Northwest Ballet in Seattle, WA.   

There were no turn tables to be found at PNB.  Every class consisted of a retired professional dancer to provide precise instruction, a weathered older man or woman who had the gift of spontaneously matching the next exercise with the most beautiful piece of classical music, and 15 to 20 adolescent girls with hair pulled tight into a low bun, the class color leotard, pink tights and satin toe shoes.   This is where my affinity for Bach ignited.

Fast forward 30 years.  As a mother, one thing I have always tried to instill into my children is an appreciation for the the arts.   This has not been an easy task for me as my husband is what I like to call a sports-a-holic.  Not that he does not appreciate things outside of the Denver Broncos;  it has just been a little bit of an extra challenge to take time out from our packed schedule of basketball, football, and soccer for the theater and the symphony.  Plus it is not cheap for a family of 5 either.  My answer to this challenge has been listening to  classical music in my car while driving our kid’s to their activities whether they liked it or not.  Of course Ellie always loved it, she is a lover of music, a musicophile.

One Sunday morning during what I like to call “church” the CBS Sunday morning show highlighted a woman, Simone Dinnerstein.   Her story is quite amazing.  She attended the Manhattan School of Music with some of the greatest pianists of our time and then went onto Juilliard, but dropped out and was written off in the world of classical piano.   It was not until she was in her 30s and after becoming a mother herself, that she self – financed and released her recording of Bach’s most famous Goldberg Variations, BMV 988:  Aria..   One of the most striking statements she made during her CBS Sunday morning interview, is how she attributed her experiences of becoming a mother to directly impacting the level of which she played her instrument.  As if becoming a mother, and all that has meant to her, deeply and profoundly affected her ability to play at her highest level… and this is what launched her into the stratosphere with regard to her career.

Of course I immediately purchased her CD on Amazon and looked forward to the next opportunity when driving down Freya with kids in tow so that I could hear her gift first hand.  And I did.  One Fall morning after going through the drive thru to pick up my PSL at Starbucks, Amelia, Elle and Charlie all in the back seat of my ruby colored Honda Odyssey (yes I caved and drove a mini van but only for 4 years… ) I hit the play button.  Her music first began to fill the space in our car and then began to work it’s way into my being.   It is in the first piece of the Bach’s Goldberg Variation… which starts off slow, but steadily builds, takes unexpected and never ending turns, and still climbs but not too fast… and then starts the crescendo all over again in a different key.  It is as if Bach was now trying another path in his life journey but never giving up in his strive toward creating something beautiful.  Tears welled my eyes and I could feel the familiar tremble of my inner core.  A bodily cue that something important is happening or about to happen for me in that moment of time “Are you crying momma ?”  came a little voice from the back, it was Charlie.  “No.” I replied trying to wipe my tears away and pull myself together.  “Don’t cry momma., don’t be sad” he said.  “I am not sad Charlie, I am actually just happy.  This music we are listening to just reminds me so much of our life path here on earth.  The ups and the downs, the twists and the turns, never giving up and always working  toward creating something beautiful.”  “Oh.”  he said. “OK., I like this music.”  He said.  “Me too.”  I replied.

Team Elle, the turning point

I wish this was the turning point in our story in which I could reassure my readers that we swiftly found the magic potion for Elle to drink while simultaneously switching to a gluten free diet like all the celebrities with autistic kids have spouted to be their answer to saving their child from the dark side but this has not been our story.  Don’t get me wrong,  I obsessively searched for that elusive magic potion under every boulder, walked down many a dark alleys, climbed the highest of altitudes and swam to the bottom of the sea searching for the answers, searching for the reasons, searching for Ellie’s remedy.

As any good mother would do, I also blamed myself for my daughter’s fate. I was scarred to death that her microcephaly was caused by something I had done during my pregnancy and it was too late to take it back. When you google search causes of microcephaly the most common contributing factors that scientist have determined so far are maternal exposure to infectious diseases such as toxoplasmosis, the one you can get from cleaning the cat litter box.  Other potential known causes are genetic mishaps and exposure to environmental toxins.  Environmental toxin such as drugs.  Drugs.  Drugs ? Fuck.

No, I was not a drug user.  I did not smoke weed, drink alcohol, except for a few cold sips of my husband’s Hefeweizen, and I was not a closet meth or heroine user.  In fact I was afraid of drugs and medications, especially anti-depressant/anxiety medications.

Ugh.  Here is where it becomes harder for me to tell my story.  This is personal.  No one walks this earth without their fare share of bumps, bruises or scars;  myself included.  And I have no interest in rehashing my childhood in a public forum.   In spite of our current cultural norm to share everything with everyone on social media, I still believe that some things should be protected and kept sacredly private.  Let’s just say I had an unusual childhood.  Extraordinary opportunities as well as unmentionable, complicated and confidential challenges.

As with everything in life our childhood experiences, good or bad, become the framework of our adult human existence whether we like it or not.  The good news is that as adults, we have the choice as the sun rises each morning, to deconstruct aspects of our framework that no longer serve us or add value to our lives.  Not easy but definitely a goal worth working toward.  For me personally, I had some serious rebuilding to do.   A strive for perfection and power, combined with a sprinkle of “genetic tendencies” equaled an obsessive mind that zeroed in on irrational fears.  Fears of mental illness because an unknown schizophrenic paternal grandfather whom my grandmother had escaped when my father was a toddler .  Stifling fear of passing any exam while studying nursing at Hopkins and midwifery at UW.  Fear  I was not good enough;  not my body, not my chosen career, not my income and not my life partner.  These thoughts were never invited, they just showed up at my front door every day ready to play.  And many nights, the nights that I was able to fall asleep soundly, these fears sometimes haunted me in my dreams leaving me feeling anxious, insecure, and preoccupied the next day.   Sink or swim.  I always choose swim.

As with everything in life, the flip side of this coin was the gift of a brain which relentlessly produced the drive towards being my best self, to set goals and go after them systematically and to encourage all of those around me to do the same whether they liked it or not.  Just ask Tim….

It has taken me years to learn to how to work with my brain and I hope and pray for the most part my mind, heart and soul has figured it out.  Therapy, yoga, journaling, best friends, exercise, water, and Unisom have been key players in my life game.  But when I was newly pregnant with Ellie I had just started on a SSRI in an effort to magically fix my obsessive patterns.   It was one of the older ones, Paxil, which was supposed to ameliorate symptoms of OCD.  As always, I would obsess about taking the medication and only take the smallest amount possible, half of a half of a half.  Seriously.  As soon as the pink + + was revealed on my home pregnancy test, I was off of Paxil and carried on as I had done in the past learning and working with my brain in an effort to find the peace my mind and my soul were begging me for.

Inevitably in the first months after learning of Elle’s fate, I was convinced it was the Paxil that caused Ellie to be microcephalic.  My husband and my best friend tirelessly and repetitively tried to reassure me that it was not the cause and that even if it was the cause, it did not matter.   They loved Ellie just the same.  But I was not having it!  Bullshit.  It fucking mattered to me because how on earth could I continue to exist if it was my fault Elle was “not normal”.  I had my blood drawn to confirm I had not recently been exposed to toxoplasmosis.  My mom had our well water tested to prove that there were no unsafe elements in our well water.  So it had to be my fault.

As time went by I began to rationalize in my mind that thousands of women taking anti-depressants in pregnancy and their babies are not microcephalic.  This concept seemed to settle down my brain and I began to most heavily lean on the idea that we just don’t have an exact answer.  Not an easy feat for an obsessive mind to achieve.  Every once in awhile I would fixate on my use of Paxil during the first few weeks of embryonic development but was able to move forward and let it go.  Until one day.  One day when I was a baby midwife and finally had made it to the big leagues  at one of the most highly acclaimed OB-GYN practices at Sacred Heart.  As part of a long lived tradition, the private clinic that I worked for flew a group of their providers to Seattle in early December for a Washington state OB conference.  They spoiled us with accommodations at the down town Hyatt and we wined and dined at the finest restaurants.  I was thrilled to be a part of this experience and felt validated for all of my hard work climbing the ranks in the medical world.

One morning as we were all sitting in one of the conference ball rooms, the guest medical researcher made a statement that froze my heart.  My senses went into over drive as I put down my porcelain coffee cup and listened to her following theories.  Babies of mother’s with anxiety may go on to develop neurologic conditions affecting their development.  Right there.  She said it.  My deepest fear was confirmed.  My heart was no longer frozen, now it was pounding and I began the mental check list I had implemented countless times in the past, to calm myself down.  I started doodling on the handouts, redirecting thoughts to the Holiday season, and rationalizing the fears that persisted.  It did not work.

After the talk, we all gathered up our belongings and headed to lunch at one of Seattle’s finest seafood restaurants.  I was fairly new to this group but had grown to feel comfortable with all of the doctors even though I was “just a nurse-midwife”.  (Fear of not being good enough).  Wine and appetizers were flowing and everyone was making small talk.  As much as I tried to quiet my brain after the statements during the morning lecture, my insides were spinning.  Finally I worked up the courage to engage with one of the doctors across the table from me.  He was sort of like an older  brother, always kind but also in a way, untouchable.   I definitely had a lot of respect for him and knew that he was a straight shooter.

Before I knew it, I was sharing with him amongst the chatter at the table, what had upset me so much during our morning session.  It was at that moment, everyone stopped talking and turned their heads in our direction.  I began to tremble from the inside out.  He locked into my words and with out missing a beat stated what I so desperately longed to hear.  “There is no way that you caused Ellie’s condition.  This is what upsets me about these lectures.  Broad and generalized statements being made with out any scientific facts or evidence to support.  Don’t you for one second believe that you, or anything you did, had anything at all to do with your daughter’s diagnosis. ”  I could feel the pressure valve release immensely while the tears filled my eyes.  Then, an older physician who was sitting to my left also became tearful.  He took my hand,  looked deeply into my soul and fed me the spiritual medicine that every ounce of my being craved.   He said we don’t always no why these things happen, and it is certainly has nothing to do with what a beautiful vibrant healthy mother like you did or did not do during her pregnancy.  There are just some things in life we can not explain and our humanly task is to learn acceptance until one day god reveals to you the answers you are seeking.

I am forever grateful for this moment on this journey.