Will's Peace

My third child, William Harris McKie, was born on July 28, 2002, a lovely Sunday.  We had no idea he would be born with CHARGE syndrome.  Even my earlier pregnancy problems didn't foreshadow the news.  Will was a twin, but his twin (the younger of the two) died at the end of the first trimester.  I grieved the loss and worried whether I would also lose Will.  I dealt with some of my grief by focusing on the health of the child I was still carrying and on the reassurance my doctor gave me that it wasn't unusual to lose a twin.  After all, now we have wonderful technology which lets us peek inside giving us the "It's twins!" news before birth.  

I had done everything "right".  I  weaned myself off caffeinated beverages, starting taking prenatal vitamins, and limited my consumption of fish all before I was even pregnant.  I already wasn't eating lunchmeat, was eating lots of vegetables, and was exercising by running an average of 5 miles several times a week.   When I found out I was carrying twins, I did some reading and added chicken and extra dairy to my diet to make sure I was getting enough protein for three and stopped doing sit ups or lying on my back to sleep.  It stuck like a bone in my throat that I did everything right and still Will was born with physical deformities.  It stuck sharpest when I saw healthy babies born to women who smoked, drank, or did drugs during their pregnancies.   Please understand, I was happy for them (especially for those babies who needed all the breaks they could catch), but resented that Will and I didn't have the same good fortune.

The first sign of trouble was immediately after his birth when the neonatal clinician tried to suction Will's nose and couldn't pass even the narrowest catheter.  She reassured me his nose was probably swollen from delivery.  Will had a lusty cry and any concerns that glimmered in my mind faded.  After I was able to look into his beautiful face, speak softly to him, and touch him to prove he was real, Will was shuttled to the term nursery.  I volunteered to hang out a little longer in the delivery room in order for my tubes to be tied and my abdomen and uterus to be stitched closed.  All three of my kids were delivered by the zipper method even though I did everything but stand on my head to try to deliver them naturally.  Seriously, I did things I won't discuss here or with my closest friends.

Once my doctor was done with me, I was moved to the recovery room where I began to recall where I was (in a hospital) and why I was there (having a baby).  Those are some kinda drugs!  I even was beginning to resent the lack of hospital compliance with my well thought out and constructed birth plan. By now, Will was supposed to be with me for the very important first moments of bonding and breast feeding.   As I was working up a goodly amount of righteous anger, I caught the attention of the first warm body to wander past and demanded to see my child.  I was gently informed that my doctor would be by soon.  It wasn't the words, but the look in the eyes which caused a cold sweat to trickle down my back.  What was wrong with my son?  For several agonizing minutes, I fluctuated between a nauseating worry and thoughts of clawing my way out of bed and to the nursery (my lower half was still numb from the epidural and not under my control) and comforting thoughts that Will's cry was loud and strong and he looked fine to me.  I was losing the battle when not my doctor, but the Neonatal Intensive Care doctor who I had worked with for years arrived to tell me Will had been moved from the nursery to the NICU because he turned dusky.  The doctor reassured me Will was stable on only a small amount of oxygen and listed the tests they would run.  He reminded me how common it was for babies born by caesarean section to have short-term breathing problems.  I nodded mutely with tears running down my face.  Not only was it painful to be separated from my son who (I don't care what anyone said) so obviously needed me, but I hated to cry in public.

I focused on one thought only, "I can handle this."  I repeated this to myself as I was wheeled down halls and into the NICU where I worked (when not giving birth).  Kind, compassionate eyes met mine as I passed the beautiful people I was blessed to work with.  I swallowed repeatedly willing myself not to cry in front of them.  My stretcher finally came to rest near the warmer where my son lay under an oxygen hood.  Will's nursery card announced his weight as 6 pounds and 5 ounces.  He was the smallest of my children.  His slow weight gain had concerned me as my pregnancy progressed because I knew each subsequent child tended to weigh a little more than the first born.  I had certainly gained plenty which was normal for me and often joked (especially when I stood on the scales for my checkups) that my body didn't get the message we were down to one passenger.  Why was Will so scrawny?  He also had a small penis, ahem, was microphallic.  This was pointed out by his nurse which I was sure was code for something, but my brain wasn't functioning.  He looked comfortable and unperturbed by the additional attention he was receiving.  Having assessed for myself he was stable, I promptly started weeping and embarrassed myself further by throwing up.  Those ARE some kinda drugs.  As a side note to all anesthesiologists everywhere, NEVER promise a pregnant woman that you have some new anesthetic which won't cause vomiting.  It's just not right to get her hopes up!

After I composed  and cleaned myself up with help, I was able to hold Will for the first time.  It was awkward as I had to manage his small body swaddled in a blanket, tubes from an IV, wires from monitors, and the oxygen hose.  Paradoxically, it was a very powerful moment for me.  A warm peace radiated from Will's body and engulfed mine.  "It's going to be ok," a strong voice spoke in my mind.  My back ached from being propped up at a strange angle on the hard stretcher, my mouth tasted of bile, and my heart ached, but I didn't want to move.  I wouldn't move.   I stayed as long as they let me.  When I handed my beautiful boy back to the care of his nurse, I thought I would break.  

The next stop was my postpartum room where I was moved to a slightly more comfortable bed and instructed to sip liquids slowly.  No kidding!  I could hear the other babies crying in other rooms around me.  I was now the woman I had often felt sympathy for as I discussed her child's progress in the NICU...and I didn't like it one little bit.  I threw up twice more and I wasn't sure I could blame the medicine.  I was emotionally wrecked.  That day, and all the many more days that followed, as I reached the dark abyss, my mind snapped back to the promise "It's going to be ok" and the feeling of peace I felt from Will would wash over me again.

The next days of my hospital stay consisted of hobbling to the NICU to hold my son and listening to yet another finding of something wrong with his body and another test they would run.  By the time I was discharged, the NICU doctors had a good case for CHARGE syndrome and a long list of appointments with various other doctors.  It was a harrowing time and I was sustained by the thought  "It's going to be ok" and the sense of peace I felt when I held Will.  I had started to think this was part of his nature.  I focused on this when I was discharged and wheeled out of the hospital with flowers and balloons.  My arms were achingly, glaringly empty.  I kept my eyes on the floor in front of the wheelchair, "It's going to be ok".  The looks of compassion and pity which had warmed and soothed me earlier were now turing my stomach.

The next week was spent pumping the life sustaining breast milk from my body, cleaning the pump equipment, running back and forth from the hospital to visit and feed Will, and tending my loved ones at home.  All I wanted to do was sit in the unit holding my son.  Thankfully, I had many people bringing food, so I was spared from an additional task of cooking.  I was beyond tired and stretched past my limits.  I repeated "It's going to be ok" frequently and was rewarded with a warm peace.  I started running again (even though I wasn't supposed to), because running had helped me heal old childhood wounds and sustained me through a previous miscarriage.  I hung onto anything I could.

When Will was eight days old, he had surgery to create patent nasal canals.  Not being able to pass a catheter through his nose and turning dusky was caused by a bony occlusion.  Once his recovery from the surgery was assured and with stents in place to keep his nares from swelling shut, he was allowed to come home.  Now, I was nursing, pumping, cleaning equipment, giving him his medicines, suctioning his nose several times a day (my record was 10 times in 24 hours for a process that took 20 minutes at a time), tending loved ones, and trying to sleep.  Will didn't sleep much his first 6 years of life.  You read that correctly...his first 6 YEARS of life.  I sustained myself with the comforting warmth of his very alive body and the thought "It's going to be ok."

The next few years were a blur of tending children, visiting doctors, giving medicines, doing research (thank God for the world wide web!), changing doctors, being very angry at doctors, overcoming my brainwashing from nursing school and the medical establishment, and looking for answers for Will.  It was one of the most stressful times of my life.  I was getting very little sleep.  I often had to park the van quickly while in route to an important somewhere and jump in the back to give Will oxygen because he was screaming, turning blue, and his oximeter was blaring.  I would repeat my now constant mantra, "It's going to be ok."  However, at this point, I wasn't feeling the peace so much.

Now the belief "It's going to be ok" was driving me to constantly seek new doctors, new treatments, and new answers when things obviously were not ok.  I learned a lot in the process and met some amazing people.  We were blessed with warm, wonderful, brilliant therapists (OT, PT, speech) and I very smartly befriended them!  Yet, things still glaringly were NOT ok.  Will was pervasively developmentally delayed (significantly delayed in more than one area of development) even more than his CHARGE limitations could explain.

I struggled to reconcile my belief with my perception of what was.  I believed deeply that Will would be ok, but he was not ok by my assessment (as well as OT, PT, and speech therapists and numerous doctors would attest).  I struggled to find the missing piece.  There was something I was supposed to do or learn which would magically change the situation from absolutely NOT ok to perfectly ok.  What was it, what was it, what the hell was it?!

Several years later and many, many miles down the road as we are, I have learned much, met many amazing people, and cleaned up a lot of poop.  All because of Will's definitely NOT ok situation.  Will has changed and touched many lives which wouldn't have happened if his path had been different (a leap of wisdom I made gracefully a few years back).  Yet, the biggest gift of grace had been staring me right in the face, nose to my nose, but I couldn't see it.  The problem was an inaccuracy of semantics really.  All along the grace and the truth was that Will WAS ok and always had been ok.  It was I who would eventually be ok.  I had judged and found Will lacking when in truth it was I who was lacking...lacking in patience, wisdom, self acceptance, and compassion.

I still have to work very hard (and let me tell you when I say it's hard work, I mean the hard work of scrubbing poop out of acres of rug and off walls and windows cringing and sobbing with self loathing and self pity) at letting go of judgement...judgement of self, situations, and others.   When I do let it go, that now familiar and much loved feeling of peace washes over and warms me...a gift from Will and, then, I know, eventually, I will be ok.

What judgements do you need to release?  Let me know and, please, hear me when I say "It's going to be ok."

Shadow Sucks...Or Does It?

Along the narrow, winding path through brambles and beside beauty that has been my spiritual path, I often encounter my shadow.  The shadow is an archetype as defined in Jungian psychology.  It is those aspects of ourselves that we judge unacceptable.  We cast these miscreants into our shadow bag that stretches out behind us.  We rejoice in our lantern aspects and the light of these cast the shadow that follows us like a faithful dog.

We are right and they are wrong.  This is good and that is bad.  The judgements fall from our lips effortlessly and often without thought.  We repeat what we have learned and embraced as truth.  Yet, we give little consideration to what these judgements cost us.  All the energy and pieces of our being stripped and thrown out as waste leave us fragmented and stunted.    

Consider the Zen koan "Everything is Best":  When Banzan was walking through a market, he overheard a conversation between a butcher and his customer.  "Give me the best piece of meat you have," said the customer.  "Everything in my shop is the best," replied the butcher.  "You cannot find here any piece of meat that is not the best."  At these words, Banzan became enlightened.

I have noticed that the more I try to run, putting distance between me and my shadow, the harder and quicker it snaps back and slaps me in the face as if attached by a rubber band.  I was slapped pretty darn hard last Thursday and I didn't like it one little bit.  My mantra since Thursday has been "It's all good."  This has helped me short circuit my usual pattern of self-judgement and recriminations.

Consider my experience several years ago when I was first in therapy.  I was having trouble going to sleep, feeling anxious and irritable.  I wanted to crawl right out of my skin.  I would fidget, toss and turn, fluff my pillow, take deep breaths all to no avail.  Finally, I would hop out of bed and rush downstairs to sit on the couch and rock rapidly back and forth.  After about 30 minutes, the emotions would abate and I could go back to bed and sleep.  After several weeks, the situation had reached an intense pitch and rocking wouldn't help.  I jumped off the sofa and started pacing back and forth.  After a few minutes of this, I had the distinct impression that someone was following me.  The hair on the back of my neck was standing up and butterflies were spinning in my stomach.  The quite and dark of the night added to my fear.  I paced more quickly as though I could escape whatever or whoever was pursuing me.  I was convinced that it was a ghoul or witch who meant to harm me.  I paced more quickly still.  At some point, logic kicked in overcoming my fear.  Taking a deep breath, I spun quickly to face my would be "attacker". For a brief moment, I was afforded a glimpse of not a witch or a ghoul, but a beautiful woman hovering above the ground with her long, wavy hair blowing as if in a wind.  She was me.

Jungian psychology describes our shadow as the wildness of character with a flavor of the exotic.  My shadow was pursuing me those long ago nights.  Ever since, I have attempted to embrace that wildly beautiful and defiant part of myself.  On my good days, I feel her presence and I feel whole and powerful.  On my bad days, I repeat my mantra..."It's all good."  Take it out for a spin and let me know if it helps you!

Namaste!

My Spiritual Journey, Chapter 1

I have talked with my husband about blogging for about the past 6 months.  Can you say procrastination?  I kept waiting to reach enlightenment, become more wise, have more to share, find my "true" voice, have my house more organized, become a real writer, be a better mother and wife, be more compassionate, heal my son, toilet train my son, hear someone say "Kim, why don't you write a blog?", etc.  No kidding, these were all of my reasons for not doing what I knew I deeply wanted to do!  Ego, ego, ego!  

Yet, today I read some of Bea Johnson's blog about Zero Waste Living (zerowastehome.blogspot.com) and had an AHA! moment:)  Why not share my journey to enlightenment?  After all, that's what Bea was doing with her topic.  Thank you, Bea!  Side note:  I was also inspired to work toward eliminating material waste!  So, here I am working toward letting go of anything that no longer serves a purpose in my life...physically, mentally, spiritually and sharing it with you as openly and honestly as I can.  Join me and together we will find our way home!

Before I sign off for the day, I want to share a little about my journey thus far.  I will try to keep it brief , because trust me, I have accumulated a lot of journey in my 45 years!  

• Until I was 4, I saw and talked with my two angels.
• I had several traumatizing events beginning when I was about 2 leading me to have a death and rebirth experience. 
• I made a conscious decision to live a spiritual life as a mother instead of as a nun or priest (girls couldn't be priests anyway) when I was 8.
• I started reading the Zen books on the library shelf near my study spot and thought they made sense and realized that I was no longer Catholic...I was spiritual.
• I saw my first born and after 9 months of worrying if I would love her, thought, "I know you!" when I was 23.
• I buried my beloved brother, Todd, and briefly joined Eckankar to escape the pain and learned about the power of sound.
• I spent 7 years (off and on, give or take) in therapy with a wonderful therapist, Deborah, and learned how to turn my trauma into grist for my spiritual mill.
• When I held my last born, I felt peace and knew that even though a lot was wrong with him (CHARGE syndrome) everything would be OK.  I was 36.
• While I was out running near a local river and canal, God told me to pick up the feather I saw and throw it in the river.  I learned that I would never be "mainstream".
• I knew I found my soulmate when I saw his soul (it looked like an Indian Chief) when I was 42.
• I learned energy work from my Lakota elder friend.
• I learned energy work from my Cherokee Chief mentor.
• Attending a Jin Shin Jyutsu course, I learned about David Hawkins book Power vs Force.
• I read David Hawkins' book and started to wonder what happens to the rest of us chickens who can't study with a guru in a cave in India?  Answer:  You find spiritual growth in whatever Now you have happening.
• Raising my son and looking for a healing for him, I found a healing for me.  He's perfect:)
• Cleaning up poop out of the carpet and off walls for the gazillionith time this past fall, I realized that "poop" washes off.
• Reading Martha Beck's books Expecting Adam and Finding Your Way in a Wild New World, I realized that I wasn't the only crazy out there!

So, that should catch you up on my spiritual meanderings to date.  Where has your spiritual quest taken you lately?