The Leprosy of Loss

Kaylee (left) Mikenna (right)

In the late hours of 2015 Mikenna got mono.  It came as a surprise to us because in 8th grade her best friend and her shared everything and they both tested positive for mono.  This was the first time I learned that although the virus lays dormant, some people have it reactivated.  Those people are usually physically and/or emotionally stressed.     Mikenna had just moved back home from college, was dealing with an eating disorder and we now know most likely the onset of bipolar depression.  She was unable to hardly move out of her bed for weeks.   Fast-forward a year later from then and I would find myself dealing with a preview of what it might feel like to live in grief, I just didn’t know it yet.

A few months after Mikenna, I also developed mono.  It seemed ridiculous at 44, but my Epstein-Barr virus was off the charts and I was suffering from flu-like symptoms that had lasted for weeks.  It wasn’t a feeling of being tired, it was severe body fatigue that did not ease with sleep. I could barely work.  After two months I went back to the doctor.  They couldn’t figure out why I was still feeling like I had acute mono.  Months went by and I was tested for everything including infectious diseases.  Finally, I was given a steroid, and the flue-like body aches subsided.   As months went on, I would wake up with pain in my wrists, hands, feet, and ankles.  Some days my wrists would be swollen, other days, my thumb would feel like it wanted to come off.  That summer I planned a rafting trip for all of my co-workers.   The weekend of the trip, I woke up completely unable to use my hands, I couldn’t hold a toothbrush.   During this first year, I felt crazy.  I work as a nurse, I have over 8 years of advanced education, and I felt insane.  Nothing on the internet made sense.  My family physician was baffled and was one of the most intelligent physicians I had ever known.   She referred me to rheumatology as a last-ditch effort, hoping they could figure it out.

One of the first things the Rheumatologist said to me after labs and my examination was, “you are not crazy. you have an autoimmune disease.”   She explained to me it wasn’t uncommon for mono to accelerate the autoimmune process.  She explained I already had the syndrome where my hands, feet, and face would not tolerate extreme cold and would turn blue or purple, was in my chart from years earlier.  Something I hadn’t thought much about, I’m a colorful person.  I’m the ice queen and my husband is a furnace.  It never bothered me much.  It wasn’t that uncommon.  I didn’t really pay attention until then, that these were early markers of an autoimmune process. A process already set in motion by my own genetics, accelerated by extreme stress and mono or more precisely the Epstein-Barr virus.   She diagnosed me with Sicca syndrome (dry eyes, nose, and throat) and the early stages of rheumatoid arthritis, RA.   I at least had something to research.

As I went down the rabbit hole of autoimmune diseases, causes, treatment, and symptoms, I realized it was an invisible disease process.  Similar to my youngest daughter’s Asperger-like learning disabilities, they are complicated, invisible, and even in the modern world of science, some people believe they are unreal.   I was thankful enough to join a few online support groups.  I found a world where other people were being treated for RA, and Sjogren’s (Sicca).   We were from all over the world, but we shared the swollen joints, dry eyes, and lack of understanding from the world around us.

I learned to stop talking about it too much around other people.  How holding scissors for more than a few minuted might make my hands go stiff.  How I cannot sit criss-cross without my ankles and knees swelling and then being unable to walk, I cannot paint without being unable to use my hands for days later, I cannot wear heeled shoes ever again.  I wear orthopedic unattractive shoes at work.   I take a mild cancer medication weekly, it keeps my symptoms from getting worse and I am thankful.  The medication causes IBS symptoms and I have to be careful about the day I choose to take it.  I take another medication for the all-over body fatigue, it also causes an upset stomach, so I have to take it at night and if I stop taking it, the flu-like symptoms return.  This medication causes severe sun sensitivity so I have to wear long shirts and sunscreen always.  If I am in the sun and become overheated, I get sun-sick and I’m down for days.  The cold intolerance of Reynaurds, has me in multiple layers below 60 degrees and stiff, but I am lucky, I do not have Parkinson’s, cancer, or MS.  I am lucky because of my rheumatologist, recognized right away what I was dealing with.  There are people that wait years, some wheel-chair bound before they are acknowledged. Some people do not have medical insurance to cover appointments and medication.  It is an invisible disease process, but I am fortunate I can work, I can play, maybe a little less, but more than so many and I am very thankful.

Outside my on-line group, I know a few people in my life with autoimmune diseases.  All different kinds.  One of my best-friends carries on with one that is more severe and with a worse prognosis.  Ankylosing spondylitis (AS) is a type of arthritis in which there is long-term inflammation of the joints and spine, pelvis and hips, shoulders and it becomes worse over time).  I don’t dare tell her when I am having a bad day with my joints, hands or feet.  I know every day she can walk is a good day.  I noticed most people with autoimmune disease don’t talk about how they feel. They don’t want to appear whiny.  They quietly soldier on, only talking to others with the same disease not wanting to seem weak or incapable.   This was a glimpse as to what was to come next.

Then my daughter passed.  I entered the world of mothers who had lost a child.  A group no one asks to join.  Not only that but my daughter ended her life, under the influence one night, suffering from anxiety and depression, in a rocky relationship. It didn’t matter she was insanely gorgeous, a straight-A student with multiple scholarships, from a pretty normal loving family.  I couldn’t even say the word suicide at the time.  It left a world of unanswered questions. I felt people back away from me, uncomfortable.  Another alien world.  People did not know what to say, or how to be a comfort.  In this world, talking about your grief, after the initial loss, makes people uncomfortable.   In this world,  it is unacceptable to talk about your child that passed on a regular basis.  (Even though they will always be a part of your life).  On-line, parents seek each other out, like with autoimmune diseases,  to have a safe place to express their sadness and questions, and experiences.    People around us, secretly thankful it didn’t happen to them. They rationalized why it happened, parents didn’t see the signs, or major depression, drugs or alcohol, lack of faith, whatever.  The truth is there is no one correct answer. It is a combination of factors.   They theorize without realizing that they are doing it,  why it happened and how it won’t happen to them,  I know because I used to do it myself.

If I raise my children right, if I love them, if I teach them x.y.z nothing bad will happen to them right?  We live in a broken world.  That doesn’t mean we give up, it means bad things happen to good people.  It means a person, who eats healthily and gets exercise might still get an autoimmune disease or cancer.  We still try and eat healthy, hedge our bets.  It means at 4am a young heartbroken girl, might impulsively choose to close her eyes.  I will still keep trying to prevent this from happening to others.   It’s a messy, messy, world.

I have learned so much through these processes.  How we categorize people quicky.  Right, wrong, healthy, crazy.   How we avoid what makes us uncomfortable.  How we choose to not talk about physical or emotional pain for fear of judgment.  If there was anything good to come out of such a horrible tragedy, it would be this new knowledge.  My eyes are now opened to how we shun those that make us uncomfortable, and how that makes the people we are moving away from, even more, isolated and vulnerable.

-Mikenna’s mom, Forever 19


Signs and Butterfly Kisses

15CAF31A-0A8F-4561-B7AF-0F15F94FF2F5.jpegIn nursing, we learn to look for signs and symptoms that lead to nursing diagnosis.  If you follow the clues, they usually lead to the problem or the source.     What if you were broken and lived in a world where you asked your source for signs?    It’s like an equation in my mind.  Move one piece around and the same pieces fall into the spots.

My friend at work who lost her best friend and had the butterfly on her wedding dress recommended a book.  Signs the Secret Language of the Universe.  She explains in the first part of the book that the source is God and everything comes from him.  She tells a story about giving a speech at a conference and asking for confirmation that it went well by an orange.   She walks out into the area where they are preparing lunch and there are crates and crates of oranges everywhere.  She didn’t get one, she got thousands.

I find this concept fascinating.   Do we psychologically pick something that will make sense later or that we invite into the world as my daughter’s boyfriend suggests? I don’t know, but I was determined to give it a try after a week of trying to hold myself together without losing my emotions around my family.

I was contemplating this while finishing up a procedure at work.  What would be something relevant to Mikenna that I could ask for as a sign?  I thought about a song I used to sing to her when she was little in her bed at night after butterfly kisses on both cheeks, or when we were hiking and she would complain we still had quite a way to go.  I would sing a version of Frank Sinatra’s, High Hopes song.  What can make that little old ant, think he can move a rubber tree plant? Everyone knows an ant can’t Move a rubber tree plant. But he had highhhh hopes.  He had highhhhh hopes.   He had high apple pie in the sky hopes.  So every time you’re feeling down and you start to frown, just remember that ant!

So I asked for an ant.  Riding home on the train, I got an email from my 23 and me about a second cousin.  I reached out to my cousin on my father’s side and told her about the ancestry information.   She said it was too bad I didn’t have any contact with my biological father or his sister since she had had all of our ancestry information.   I hadn’t talked to my bio dad in 18 years or his sister.  In fact, I noticed I had tried to reach out to her by facebook 2 years ago and hadn’t had any response.  My cousin also sent her cell info so I sent her another message and went about my day.  About an hour later, to my surprise, I received a very detailed message from my Aunt including information and contact information about my biological father.  As I look at the phone I thought, wait a minute, is this my ANT/AUNT?   I was given an aunt, interesting.

Still considering this as my possible sign, I went back to work the following day and I was the head nurse for the day.   Sometime around lunch, I got the strangest call.   In the operating room, all the air is filtered and all the gowns and drapes are sterile to prevent the patient from infection.  Outside boxes, bags, and shoes are not permitted in an operating room.    The surgical assistant called me into the room because for the first time, in anyone’s experience, an ant was on the surgeon’s surgical gown.   No one could explain how it got there.  Crazy.

Still pondering the idea of asking for confirmation that I am on the correct path,  I straightened my hair before going to my first high school to present a suicide prevention video.  It wasn’t just any school, It was the school my daughter that passed and my eldest daughter attended.   I couldn’t come up with anything that would be a decent confirmation that what I am doing is worthwhile.  The author of the book used an orange.  How about grapes?  I had nothing else I could think of so grapes it was.  Being a nurse I figured I had the ability to put my emotions aside and talk to the students as a professional.  Nope.

I entered the building and immediately remembered bringing Mikenna there for her orientation.  I remembered being a parent sitting at the round tables signing up to volunteer.  I shook hands with the principal and felt a lump in my throat.   Luckily the representative for AFSP was there.  I asked him to do all the talking so I could watch him facilitate and I could know how to run a presentation for the next school.  I wouldn’t have to talk.  (Or so I thought.)

The presentation got started and I sat down.  I looked around the room and noticed they had painted the entire inside of the common room where the presentation was.  The same room I had sat years earlier with Mikenna.  I turned around and asked the counselor if they had recently painted the inside of the school.  She acknowledged that they had.  I said, “it is such a dramatic color”.  I was thinking I know that color well, It is one of my favorite colors, the color of my nonprofit, Mikenna’s favorite color, but more specifically it is the exact color of years of making sandwiches, it is the one side of a PB and J) I love it I said, “It’s GRAPE”.


A few minutes later and the principal askes me to stand up and share my story.  Crap.   I stand up and after a brief shaking of my voice, I share a little about Mikenna and her struggle.  I made sure to do her proud and mention being second in her class with a 3.99999.  Valedictorian was taken away from her the day before her speech by her runner up.

We made it through the presentation and I thought about the 170 kids that had just heard it.  I’ll never know if we reached someone enough to get help.  If we kept another family from walking this path.  I came home and fell apart and hugged my husband. I have to keep trying in her name, I am thankful for the people that have joined my crusade and walk alongside me.  Maybe following the signs is part of my own psyche.  A way to cope with the impossible.    I choose to believe and have faith that God knows I am trudging through quicksand and will give me what I need to continue on.  To celebrate getting through this hurdle of speaking at her school, I have chosen to have myself a PBJ, here in the kitchen, with all my memories or four little loud girls rushing out the door sack lunches in hand.













Kintsugi, The Art of Being Broken

99DF6423-4D1E-4142-AC4D-4672AD9DB263.jpegI walked into work in my normal groggy, grumpy mood.  It was 0615 and my coffee hadn’t kicked in enough to care about whatever shenanigans were going on with the assignments for the day.   The operating room assignments for the nursing staff can be an unfun task for the head nurse and I was thankful that wasn’t me.


I downed the last of my Americano before reaching the red line.  That’s the line you must stand behind to keep all the germs, stray hairs, and apparently crabby nurses behind.  The head nurse, or charge nurse as we call them, rounded the corner with his clipboard in hand looking way too stressed out for this early in the am.  He started with, “I’m sorry your assignment has been changed.”  Since I had no idea what my assignment had been, being off the day before, I mumbled that’s ok and went to figure out what operating room I was in for the day.

Scrolling my eyes down the board I see my name in a usual spot and the recent apology becomes clearer.  I am in Urology.    To be clear, I haven’t worked in Urology in many years,  the basic set up is the same, water for irrigation and a camera for the bladder.  But it’s dark, cold and wet, not the combination I usually like. I was a fish out of water so to speak.

Being a surgical tech/ assistant before I could legally drink, means I have been around a while and I am used to basic surgery.  General surgery where you can see everything that the surgeon is doing.  I just realized this could tie into my control-freak issues, but that’s a blog for another day.  Normally I work in oncology or cancer, my favorite surgery is removing breast cancer.

I accepted my assignment with only a little trepidation, the surgeon was known to be extremely nice, and the assistant could do the surgery practically herself.   I went to set up the room.  As I walked in the music blared and I chuckled at the selection.  Something about love rekindled played and I joked with the surgeon this was the perfect music for a vasectomy reversal.

As I bopped around the room, feeling more caffeinated and ready to go meet the patient, the surgeon remarks that the music is actually not very fitting.    Many times the patients undergoing this type of surgery were in a new relationship and were excited about the possibility of starting another family.  In years past, I had actually had couples ask me to take their picture with the surgery hat and gown, hoping it could be one for the baby book.

The surgeon told me this was a unique couple that had gone through a tragedy recently and they had lost both their daughters in a car accident.  He paused briefly to look at my face, he was checking to see if I was going to be ok, the realization that I had also just lost my daughter, had just occurred to him and didn’t know if he should say something to me.  He kindly apologizes and I said, “it’s ok.”   In a not-so- confident shakey voice and I head off to great my patient.

Walking towards the private room, I see the couple and I stop a few feet short before walking in.  I see the face of the mom and I have seen that face many times before, it’s the face of grief.    I walked in and said my basic introduction, feeling the feeling that only a person who has been through this pain can feel, it was a tangible heavy feeling in the room.   The wife excused herself to use the restroom and dry her eyes, as I typed on the computer.  As I looked at the patient I told him I knew a little of his story and why he was there today.  History being something I reviewed, it wasn’t a surprising statement.

I then said to him, “I have a similar story I lost a daughter also.”  I squeezed his hand and I expected that to be the end of the conversation.   He hadn’t said much to me except the usual information.  Noticing the religious marking he had, I told him I had originally not been assigned to his room, that I normally do not work in that service but not to worry I would take good care of him, that I felt like I was meant to be his nurse.

At that moment, he turned to face me and he asked me how old my daughter was.   I told him she was 19.  He sat up a little in his chair and said, my daughter was also 19 and the other 15.  I felt a pull on my heartstrings.     As I was showering this morning, and praying he said, I felt my daughter’s with me.  Searchingly he looked into my eyes for reassurance.   Surprisingly I heard my own voice ask, would you like me to pray with you now?  Through tears now sliding down his face, he nodded gratefully.   We waited for his wife, and we joined hands and prayed.  I am not sure what I said as the words tumbled out of my mouth.  I gave a squeeze and left to prepare for surgery.

Before work, as I was driving in, I had listened to my normal radio station.   The word for the day came on and it was kintsugi, the Japenese art of repairing broken pottery by mending the areas of breakage with dusted or mixed with powdered gold or silver.  It is the philosophy that exposing the breakage and repair as part of the history of an object, rather than something to disguise.  It did not seem to be an accident that I felt like I was being used as a kintsugi, that my brokenness of loss gave another couple a moment of peace, that they were not alone.




Into the Storm

The longest drive

I was driving home from visiting my oldest daughter for her birthday.  It’s a long tedious drive I had done dozens of times.  After losing her sister, only 20 months younger than her, and her best friend, I count every birthday as a blessing.   She finally looked like my beautiful girl again, except now she was a 23-year-old woman.  Grief has given her a maturity in her eyes too young for her sweet face, but on this day, the circles under her eyes seemed faded and I could now see hope and possibilities shining from within her.

The house she lives in still holds recent memories or her sister.  Bittersweet to look at, but I am still so thankful to look at them.  The funny thing with grief, there is no right way to view loss.  I say it again, THERE IS NO RIGHT OR WRONG WAY TO VIEW LOSS!  Some people need to put every picture away to cope through their day, some people need every item and picture their loved one held in their presence.  I live somewhere in the middle, I need to keep certain things, and all the pictures, but I have learned that I need to find uses for some things, I need to give it a purpose.  That is just me, I made boot planters, I had blankets made from clothing, I had bears made, I made Christmas ornaments from sympathy cards.  It has given me a feeling of purpose to give things a purpose.

At some point in therapy, even before my daughter passed, I learned most of us carry around these past hurts and feelings we let drive our actions.   We have an emotional feeling about a situation and we impulsively act on it without acknowledging the feeling, processing how it makes us feel and letting it move past us.  My family of the ADHD  variety has always struggled with impulsivity, some of that changes with maturity luckily.

Through losing M, I have had to do this a lot.   Process.  As I was driving home I made the analogy it is like driving into the storm.   Why would anyone want to do that?  Driving into a dark ominous mass that is right in front of us gives us the opportunity to come out the other side.   To try and run from it, ignore it, or pretend it isn’t there does nothing for us.  It eventually catches us off guard and unprepared.

The kind of grief I have been dealing with is called complicated grief.  It’s the only name they can give someone that has suffered through an unexpected trauma.  All grief is different, complicated grief means I didn’t get a reason for my loss like cancer or a car accident.  The passing of my daughter is complicated, to say the least, so what I am doing to keep myself together? Just about everything.

I was driving home thinking about an unpleasant conversation I was going to have about her passing.   It wasn’t a conversation I wanted to have, but I knew that if I didn’t have it I couldn’t put this storm, this dark cloud behind me.  I have been focusing on the positive, how to help others in her name and this felt icky.  Just like cleaning out her closet, this needed to be done.  I needed to feel how it made me feel, acknowledge it, have the conversation and move forward.  I made the call as I pulled over at the rest area.



IMG_4421.JPGAlmost home I see the evening sunset after the rain. The grey clouds moving in the direction I had just come from.  The conversation wasn’t wonderful but I had made it.  I could take a deep breath without thinking about what might be said or what should be said.

Thinking about my recent visit to my daughter, I remember and appreciate the little white butterfly that said hello when I first arrived.  It may or may not have been a little hello from heaven, but I appreciated it all the same.  I have realized we get the signs and messages when we need them, maybe not always when we want them.

My friend at work recently got married.  She had a beautiful wedding in a beautiful private place in either Alaska or Canada.  The wedding she planned as a young girl with her best friend.

The most beautiful couple

Every young girl these days most likely has a wedding Pinterest site.  When I was young I cut up pictures of gowns and saved them.  My friend from work had done the same I am sure.   She had everything she ever wished for, the most beautiful place, the most beautiful dress, the handsome groom, but she didn’t have her maid of honor, her best friend, who had passed a few years earlier.  On that day, as she stood in the most beautiful place, in her expensive dress, looking into her handsome groom’s eyes, a monarch butterfly circled her and then landed on her white dress.  At that moment she was breathless.  Heaven had sent her a little gift.  Her best friend and maid of honor had sent her love.  Here is the picture of that moment as she stood in the sunshine, still shaken by the storm but surrounded now in light and love.




Defining Moments

Camp Wi-ne-ma

If you’ve ever seen the movie Yes Man, with Jim Carrey, then you might relate to this bizarre phase of grief and healing I have been going through.    In the movie, the main character has suffered the loss of his marriage and has a negative outlook on himself and life in general.    He attends a seminar and is inspired to say yes to everything and besides some minor chaos, he changes his life and the life of random or not so random strangers lives, even to go so far as to save a man from suicide.   I didn’t really have this movie in mind, but honestly, I was fighting for my own life when I determined this might be the way to save it.

After the tragedy of losing my daughter and one of my best friends who we shared so much in common, I could barely breathe, and still have moments where I have to focus on just putting one step in front of the other, one moment at a time.   It has felt at times like I have been struggling to hang on to everything I hold dear like it used to feel when I would attempt rock climbing and would decide to stick my hands between a crack to hold myself on a narrow footing.

The first “thing” I said yes to was a walk for suicide prevention.  It didn’t make everything better, but it was like putting ice on a bee sting, doing something positive in her name took the sharp pang away, even if for a little while.  Then we did the first Hike for Hope, and the nonprofit, the with ongoing projects, then the Mexico mission with my family and church and then recently  I was asked to be the camp nurse while in Mexico.  I didn’t want to say no, I wasn’t sure the reason I needed to go, especially two weeks later after my Mexico mission, but like the Yes Man movie I went.

Heart shaped clouds the entire drive even my daughter notices 💜

My thoughts were that I would pass out a few bandaids, I hadn’t been a camp nurse in a long while.   The first night I was there, a young girl came in extremely upset for the physical health of her sister.  We talked for a while and she left.  I remembered nights past of my daughters worried for one of their sisters, and it broke my heart for her.  I hoped that telling her some resources would be enough.  I also wondered was this an isolated thing or would more campers come to talk?

Over the week I got to know kiddos with different mental health issues, relationship issues, transitional living type situations and in general, as a nurse, emotionally a lot more difficult to treat than a just an icepack or a bandaid.  They came in for their meds or vitamins, or feminine products, ice or bandaids, looking for candy or snacks and stayed just talking life with me.  I then watched as some of them formed friendships with each other, interestingly enough, the kids with the most difficult hardships seemed to find each other and connect.

During my time as a camp nurse, two of the campers who were best friends got into a fight.  Emotions ran high and in the heat of the moment, one of the boys hit a wall.   After Xrays, ice and Advil he was extremely remorseful.  He was ashamed of himself and wanted to go home.  In another situation just a couple days later after another angry outburst, a different also embarrassed wanted to go home.  In both situations after they cooled off and with major coaxing from different counselors, they both stayed and went on to enjoy the rest of the camp.  I heard one counselor say, “one impulsive act does not define you”.   I  contemplated that statement for days.  The truth is, one defining moment does not define you, it may change your life forever, but it is not the definition of the person you truly are.  It is one moment, one choice.  I think about the beautiful soul my daughter was and how one tragic moment ended her life, but it did not define the beautiful person that will always be her.

From hugs to the brokenhearted, that I felt so deep it broke mine also, to gathering personal hygiene items for teens in need, to a nap in a quiet area for the anxiety-ridden camper labeled as being “drama” by other campers, to explaining to the neurodiverse (not neurotypical) teens that they aren’t alone at camp or in life.  I didn’t have a sign like Lucy in Peanuts but the campers just came and needed me to be present and listen.  I will be honest after the first young lady visited, I thought to myself this isn’t what I signed up for, but it was what they needed and ultimately what I needed to give.

Above my door a mama bird tucks her baby bird in while watching me closely. Oh how I relate mama

One of the first moments there I found myself face to face with my daughter that passed away’s, youth leader.  He reintroduced himself.  What he didn’t know is that I harbored some unresolved feelings towards him.  Why hadn’t he connected in the last 18 months?  As he fumbled for words of telling me how sorry he felt, the words forgiveness filled my heart.  I struggled with questions of what-ifs.  I knew that before this event I would also struggle with reaching out to someone in my shoes.  I now know that any effort is worth giving and I feel like it’s my life’s mission to make that effort when I see the need, but I would have struggled in his shoes before the tragic event of losing my daughter.  I was thankful he had finally talked to me and thankful I was able to not let that hurt define me, and I was able to let go.


Below is a craft of beach shells my daughter had gathered and a few I added from the dollar store:


two pieces of small scrap wood

two nails

shells assorted

hot glue

staple gun

attach the two small pieces of wood into a cross with the two nails and hot glue all of the shells until all the surface is covered   Attach a step in the back with the staple gun if you choose to hang it or place in your garden











Come Closer and Stay Away

Along the Oregon City side of the Clackamas River

Isolation, the result, and the enemy of most of us, is also sort of a commodity.  To not have to answer questions about how you are feeling, what you plan on doing or what you did over the weekend.  The truth is that my feelings changes from day to day, hour to hour and minute to minute. For instance, over mother’s day, I couldn’t stand to talk to anyone, only to then regret not making plans later that day.  


Did I isolate myself, by not having the energy for small talk, by sitting alone at lunch, (if I even took my lunch)? Did I isolate myself by not reaching out to relationships that weren’t in my immediate small circle or was I isolated by being softly pushed away by those around me that felt uncomfortable with my loss, my trauma?  It has been 16 months, but the first few months, I wasn’t really up for lunches and coffee dates but I was asked. I realized recently that unless I reach out, I am no longer being asked to social engagements. I am not complaining, I am just noticing the results of going through something traumatic. Honestly, I don’t really mind not doing things for the most part, things that now can seem meaningless, at times.  Like I used to go to every event I felt obligated to go, versus only going to things  I really want to go to. I used to care more about what I wore, now I wear only what makes me feel comfortable.  Things that I used to not make time for, now seem extremely important like walking, writing, and working on my projects.  Worrying about what others think of me, if I was invited to go to a social gathering or not, seems unimportant now, though it would be nice to be asked and to at least consider the event.   Oh well, as my husband says, “I know who loves me,” and that’s all that matters.   (Sometimes he’s so smart.)

My favorite path is blooming purple flowers

The other day, my nurse anesthetist and I had a case cancel and had downtime. (I work in the operating room at a nearby hospital)  She started talking to me about the trauma she has been in over her daughter’s critical health condition.  The condition was life-threatening and her young child had to undergo intense surgeries. During the process she realized she felt somewhat alienated from others, She also felt co-workers might not understand the ongoing stress of the condition.  I completely related. The PTSD I still battle with over the loss of my daughter has had me miss random days, including therapy for myself and my other children. I have stepped down from many of my leadership positions, I don’t pick up extra shifts or take others shifts.  After a while, the feeling of guilt tends to make us trauma mammas feel like we are supposed to soldier on, pretend everything is fine, we don’t want to be viewed as a slacker, pitied and avoided.


I was thankful for the conversation.  It was like a sense of relief to talk to another mom about how stress affects your career, your family life, and your relationships.  She has written about her experience through online journalling and I am thankful for people like her that aren’t afraid to be open and to share their experiences.  We cannot empathize or help each other if we have no idea what others are going through.  

Loss, grief and trauma does strange things to people. We in some ways become the most empathetic people in the world, but in other ways we are so engulfed in our own stuff, that we have a difficult time seeing someone else’s circumstances.  For example, my neighbor just had a baby. My old self would have made something for her.  In the aftermath of loosing my daughter, I’ve had a difficult time paying attention to what’s going on next door. Another example being my friends child was recently diagnosed with a severe learning disability.  I know that’s difficult and I empathize having a child that has some learning challenges myself, but I haven’t been able to reach out yet, and I’m not sure why.  

One connection that I have to other parents that have also lost children, is that many of my online friends in the support groups, look for signs.  It is a common understandable thing to do when your heart has been ripped to pieces.  They look for signs from God, for comfort, messages from their children or loved one, anything to ease some of the stabbing pains of loss.  Sometimes  I read about the most amazing signs, and I have found myself feeling happy for them but down for myself, that I wasn’t getting the same types of signs.  Looking back on my blog posts, I have been given many moments of comfort (signs) and I am thankful, I’m not sure why we instantly forget them.  I realized that all of our Spiritual relationships are different, and all of our relationships with our loved ones were different, so any messages, thoughts, or feelings of comfort, will also be different.

Four purple flowers cut and laying one at a tome along my path.

Last week I was waking with one of my daughter’s best friends and I looked down and there were four purple flowers along our path.  It gave me a little heart squeeze. It could be Coincidence that I have four girls and my daughter’s color was purple, or not, it still made me smile. As we were walking I had just finished telling him about going to get my nails done the day earlier, for the event we were having for her birthday, and telling the nail guy to choose any color out of his 100 different colors.  He chose purple.

I said choose any color

Sometimes I think that the types of signs  I get are ways to encourage me to keep going, messages to keep working towards reaching out to others no matter how difficult it might be.   Sunday I got a call from a friend of mine that someone posted in the Portland and neighboring cities neighborhood news that they were selling their daughter’s dresses and donating the money towards the American Foundation for suicide prevention. This is the same group we have been working with and donating to also.  My friend said I should reach out to her. I did so at first reluctantly, wondering if this was now my mission, reaching out to other parents that were dealing with loss. (I didn’t really ask for it) I sent her a message and then my youngest daughter and friends wanted to go get tea in the neighboring city so I decided to take them forgetting about the message I had sent.

As we were leaving the tea shop, I remembered messaging the gal with the dresses and looked at my phone to see what the address was, what city it was in and how long it would take to get there. I realized we weren’t driving distance, we were actually 300 feet walking distance.  How crazy that the obscure tea shop was a stones throw from the sale address.  We walked to her sale and when I saw the mom, she instantly hugged me with tears in her eyes.  She told me about her daughter, her love of unique dresses, her love of vintage items, her passion for teaching. She also told me that her daughter graduated from the same college as my oldest daughter and had lived in the same city.   I wondered how often she was given the chance to talk about her, to say her name, to show her picture. I thought this was the best sign of love I could have been given on this day. To witness a mother fighting to survive and give back after loosing her precious daughter. That is what inspires me I thought to myself, maybe I don’t need small talk and coffee shops anymore. Wouldn’t it be wonderful if we all could just be real, vulnerable, and open? Imagine the things we could learn from each other.

Deer seem to visit my oldest daughter in many different places 💜


One of my few and closest friends joined me on my walk today.  For some reason I found where I walk so much more beautiful today with all of the wildflowers blooming.  I felt like the purple flowers bloomed just for me. I know that I may not feel this way tomorrow. Tomorrow I might  not like being around anyone, something might make me feel extremely sad, or maybe it won’t, I never know.  For today though I appreciate the beauty around me, and for now, I can just breathe.

Wildflowers amongst the weeds along my path.

Kora Vanek, Mikenna Vanek Project

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If We Loved People Like We Loved Trees



Mikenna goofing around in the trees

Staring at the rhododendron in my memorial garden I realized it was going through stress.  My neighbor, concerned a limb would hit his roof, had cut some of the limbs from the large oak back to the main branch.  The tree was not harmed, but the purple bush below it now was exposed to the full sun.  The leaves drooped, the bush leaned toward the shade, and the stems of the bush became longer with new growth somewhat stunted.  I couldn’t stop contemplating the similarities of a tree or bush in shock or stress compared to humans.  The slowing of new growth and the withering of leaves being two of the main symptoms.  One of the most common reasons for shock is that the tree loses part of its root system.   A tree affected by severe stress such as drought, improper planting, improper fertilizer, or any severe weather condition, can take two to five years to recover!  When I read this I thought, If we can allow a tree 2-5 years to recover from stress, shock and losing part of its root system, why can’t we allow humans?  One online friend said she was told to move on after 8 months?! What is wrong with people????

Why can’t we allow our friends, our families, our co-workers time to overcome the stress of trauma, loss, or injury and the time it takes to adapt to an unfamiliar world.  A world where your dreams and expectations are all different now, a world possibly without a loved one, a world seen differently because bad things really do happen and it cannot be controlled.  That perceived control of your world bubble has been burst.  Can you imagine?

Why do the people who have not experienced the same kind of pain feel the need to insert their opinion and lack of empathy or patience towards those trying to recover from an unimaginable barrier?  I pondered this thought over and over for weeks.  Rolling it around in my mind.   I even posed the questions to my online groups.   Have you been told to stop talking about your loved ones, to move on, to put all their items away?

Our family running Hike for Hope suicide prevention on Mikenna’s Birthday 💜
My youngest daughter’s northwest hope rocks leaving inspirational messages in urban areas #nwhoperocks  some of these were in remembrance  of loved ones at the hike

In all four online support groups, there were a few people that had family members walk away from them, who couldn’t stand to see them grieve anymore.  Thank goodness for support groups! Many people believe it is our own culture problem.  If you think about other non-western cultures, grieving is embraced, expected, and not talking about their loved in most other cultures would be odd.   Everyone has their own way to work through it and it may take years or maybe a lifetime.  What some outsiders may not realize is that losing a loved one puts you in a category of losing your own life.   Finding a way to move through the pain is necessary to survive not just physically but mentally.  To criticize how someone tries to cope with their pain to me is almost cruel.

I am one of the only females in this group for leadership training if you can find me.

What if we lived in a more empathetic world?  My friend from high school lost a fellow soldier to suicide from PTSD.  When I read his story I thought back to when I came home from Desert Storm.   I was alone, no one understood my sadness and it took a couple years for me to really transition back to civilian life mentally.  I look back and I really could have used more support.  Counseling, group support, military support and people around me giving me grace, anything.   I felt awkward when I first came home like I didn’t fit in. Everything around me felt strange.  I had lost the people around me that I had lived with for a year, learned to sleep through the sound of Scud missiles, learned to eat the same thing every day, wear the same clothes, look at the same terrain.  This was only with one tour, our soldiers have been going for multiple tours.  They come home to an impatient world, but the human mind and heart take time to heal.  Could we just learn to emphasize more and for longer even to situations we do not relate to? When people are in stress and shock they need more support, not avoidance and isolation. We tend to scoot away from unpleasant people and situations as if we will catch their sadness or their pain.  Like I said, we give a tree in shock two to five years of support and nurturing to return to thrive.

I have a friend who lost her son to an illness when our kids were in second grade, about 9 years ago.  I remember when it happened secretly being thankful it had not happened to my family.  It was hard to wrap my head around, it seemed to come out of the blue.  As a parent, you start to rationalize how to keep your own children safe.   You think if I do X, and Y and Z my children will be protected from whatever.   We still need to do those things, we still need to try to protect our families, but I was so wrong, bad things happen to good people.  It’s not contagious, and hiding and ignoring problems in our society don’t make them go away.  Bringing light to the darkness does.  Talking about taboo things like grief, suicide, depression, PTSD has been proven to actually help that affected heal.  I wish I could go back in time and hug and walk with my friend when she went through what she did.  I sent her my condolences, saw that she had people around her so I didn’t think she needed my help, or that is what I told myself.  If you are reading this now Deana, I apologize from the bottom and deepest part of my heart.

amour_house.jpg (300×225)
Amor ministries, a newly made house


Here’s something not everyone knows or gets.  Helping others actually heals you!

Before I even started the nonprofit, or read the amazing book, It’s ok to not be ok,  a book everyone should skim through that knows someone going through grief, especially family members, I talked to multiple people about how they were coping with losing their child.  The people that were doing more than merely surviving seemed to be finding a sense of purpose or legacy, anything from planting a tree in their child’s name in a much needed reforested area or place they loved, a book drive in their child’s honor, buying a birthday cake on their child’s birthday for someone else or paying it forward.  When talking with Deana, she had spent valuable time and money to bring change to medical procedures for other children suffering from her child’s same illness.  My other friend who lost her six-month-old to SCID runs a fundraiser every year on his birthday.   Their entire family is involved every year, they are helping others with their child’s same disease. I am very proud to know them and their story, I now realize how important it is to talk about and share our stories.  Thank you, James and Stacey, for what you do

According to psychology, helping others helps heal ourselves.   It’s the reason I felt led to take my family to build houses with our church in Mexico next month.  I knew we didn’t have the resources to go, but as I walked into my small group, I asked for a sign or answer if we should go.  Ten minutes later as we talked in our small group, my family was given half the funds needed to go by another couple that couldn’t physically go themselves.   I had my answer.  I don’t expect it to completely heal the root we are missing from our tree, but I believe it will help as we learn to grow a different direction.

Since I have lost my daughter, I have been extremely blessed by the support of most everyone around me, but I have had some things said to me and about me that have been unkind, though I now know, they do not know, how unkind these words truly are.  I have had people, that are my closest friends not utter a word to me, (you can just give me a hug, you don’t have to say anything its ok friend.)  I have been told to put my pictures of my daughter away, (By the way they will be out until I die so get over it), that my blog just throws my grief in everyone’s face, (Um, Don’t read it), that my non-profit for depression awareness isn’t healthy for me or my family. (That’s totally against what all of the psychological community says, but o.k.)  This is where I have to thank my online community. When I asked honestly if these things were healthy or not, you all gave me honest answers and reminded me to follow my heart to heal, and that awareness, even if it only keeps one family out of this grief club, is worth it.  At first, I was angry at these comments, but how can I be angry when in the past I am guilty of it too before I walked this path? Now I know its fear and ignorance to this world I sometimes wish I was also ignorant to, along with people carrying their own baggage, thinking they know what’s best.  They don’t.  Let’s try empathy on first.

I just read that Michael Phelps struggled with depression and in the past suicidal ideation. When you look at someone so talented and with so many followers we think they have it all.  We think we know what kind of life they have.    The one thing I can say that has come out of all this grief is that I have realized you never know what the person next to you is going through.  The irritated old man in line may be mourning the loss of his wife, maybe today is their wedding anniversary.    The young man in line covered in tattoos buying beer at 9am might be suffering from PTSD.  The lady crying in the flower aisle at Costco, and moments later snapping at the clerk for the mismarked prices of flowers might be trying to decide what color roses to bury her daughter with.



Defining Grounded

IMG_5944The conversations around my house for weeks were centered around Prom.  You can blame Disney, social media, or our culture, but being a pretty princess is somewhere in our DNA or at least part of our little girl daydreams.   The talk was on dresses and shoes, clutches and nails, dinner and transportation, make-up and hair.  What we should have discussed with my introverted daughter, was skills for feeling overwhelmed when 250 teenagers are bumping and grinding in a dance circle.   All and all she did well, she spent more time in the bathroom than the average teenager, but she went, she took pictures, she talked to the people she felt the most comfortable with and next year when she goes again, she’ll know what to expect. She will have ideas on how to navigate the dance circles and awkward conversations.  Honestly, the most difficult things in life are the unknowns.

The day after prom I found a post in my feed about grounding.  It was called,  “Tips to Help with an Anxiety Attack.  Look around you and find Five things you can see, four things you can touch, three things you can hear, two things you can smell, and one thing you can taste. The post continues to say this is grounding.  It can help when you feel like you have lost all control of your surroundings” -The Anxiety Therapist.   The first thing I thought was the person that wrote this has never had an anxiety attack.   When you are feeling anxious, your body gears up for a fight or flight response,  your heart beats faster, you can be agitated or restless, and mostly you have impaired concentration where your mind goes blank.  Not to mention in an actual attack, your vision can become narrowed and your hearing can feel overstimulated.   This made me chuckle to myself.  I just envisioned myself at nursing school breathing heavy with my head down asking, “I’m supposed to touch something, or smell something? Five of what and four of what?  I’ve only had a couple of these anxiety attacks, one in nursing school many years ago, and the other when my daughter passed unexpectedly,  I do, however, see the merit of teaching yourself or a friend the concept of grounding, taking your shoes off or holding an inanimate object.  It is supposed to help with bringing you back to the present moment.  I think that might be a teachable concept that someone can remember when they are feeling anxious if you keep it simple.

Later I was dusting and noticing how the dust was everywhere.  It was on every crevice, top, bottom, sides on all the knick-knacks on my shelving unit.  Two analogies came to mind. First, dust is like a loss.  It is everywhere, there is no hiding it.  It touches everything, every part of your life is touched by loss.    Second is that loss and grief scatters a person like dust in the wind.  I have never felt more fragmented than the months following the loss of my daughter.  My thoughts were scattered, my emotions were scattered, and the concept of time was also scattered.  I am just now slowly piecing myself back together. The concept of grounding comes back to me and I think about different forms of grounding.

Months ago I noticed some people, that were years out from their loss, seemed to be doing a tiny bit better than others.  There were some that were still having a hard time functioning on a day to day basis and others that struggled but seemed to be functioning.  I met with a few of them trying to understand what it was I was going through, reaching for someone who understood the terrible pain.   I started to notice a theme.  My one friend and husband organize a charity for children with the same disease as their son, Another set of parent went on to battle in courts to change a law that would save other children, and another couple works around the clock running a non-profit for wilderness therapy.  A father, I haven’t met in person, collects books annually because his child loved to read.  These people were also still married to their spouses after suffering such a loss, I believe the father was a single Dad before the loss, but he was writing and functioning a few years outside of the loss of his child.  One study indicated that divorce rates among bereaved parents are as much as eight times the norm ().  What did these parents have in common?  A sense of purpose, a focal point, a different form of grounding to the here and now.  Their pieces that had been broken and scattered to the wind brought together for a sense of purpose they had found.

Sitting in my Sunday morning coffee bible study group, somehow the subject of grounding came up, (probably I brought it up).  One man discusses the importance of using grounding wire, it keeps you from blowing your circuit and from the electrical current being scattered everywhere. We talk about how having faith is like being grounded.  Faith helps keep a person from being scattered, it brings light to the darkness.

Our group leader then reads Psalm 119 verse 105: “Your word is a lamp to my feet And a light to my path.” Without anyone near the light switch that we could see, the rest of the conference room lights, at that same moment, turn on.  Luckily, this time, it was in a room full of people, and one of my friends that was with me the last time I had a similar experience, was there.   God has such a funny way of getting my attention, I felt like I got a “right on” and I can’t help but think my daughter’s sense of humor could also be at play here.  





The Wordless Color

IMG_8309I have found myself over and over again contemplating grief.  There isn’t even a medical condition for it.  There is no physician coding, there isn’t a medication you can take to cure it or its symptoms.  The most hilarious encounter I have had throughout this process was applying for intermittent leave, while I was explaining my “condition” to the family medical leave office.  I needed to assess how many times a month I would have this “condition” and for how many hours in the day they wanted to know?  I actually laughed at the poor women over the phone.  “How many hours a month, might I be stricken with grief, over the loss of a family member, to the point I am unable to function at work you ask?”  Let me just consult Jesus, and I’ll get back to you, is what I wanted to say.   I mean, I am also very curious how long I’m going to feel so crappy, that I serve my children dinner out of the back of the freezer.  On most days I can’t muster any more emotional energy to cook dinner.   I have so many piles of laundry, I’ve renamed them new urban living.  I have also secretly contemplated ordering my groceries from an online store to be delivered and hopefully put away by elves.  Truthfully, I also still ignore almost every happy event posted by anyone I know on social media.  So, I’ll get back to you when I figure out the answers to your questions medical leave office.

The days of feeling completely unable to move, from the shock, might be gone after the last few months, but now I am left with the reality of grief.  It hits in waves of unexpected bombshells.  It reminds me of the scud missile attacks during Desert Storm. You are just walking in broad daylight not thinking about anything and then see an image, or hear a song, or hear someone talk about something their family member did reminding you of your loved one, and BOOM you’re hit, you’re down, apply pressure, it’s going to sting for a while.   The part I didn’t realize is that grief is emotionally AND physically exhausting.   That is the reason that simple tasks seem to take everything out of you when you are in this state.   It also seems to be very difficult to actively engage with people who are not aware of the grief situation or didn’t have a close connection.   It means the person experiencing grief either has to act as if everything is ok, or they have to explain why they aren’t feeling like hanging out at happy hour or whatever it is.   I have decided this is why other cultures, for centuries, wore black for a year.  No one asked the person in black mourning clothes, “Hey Martha, what have you been up to? Did you have a nice weekend? How ya doing today?”   Martha, dressed in black from head to toe, before Goth and Emo were even a thing, would then say, ” I’ve been staring at pictures, wandering around my house from room to room, I can’t remember if I shaved both my legs in the shower, and this weekend I served left over lasagna from the back of the freezer to my family hoping if I dumped a can of sauce on it they wouldn’t notice,” or something like that.

Most people mean well when they are asking, I think it’s just exhausting to lie is all I am saying and say the typical I’m good, great, fine.     I had a tutor working with my daughter when she was younger.  The tutor explained to me that when my daughter came home from school she was physically and emotionally exhausted from having to work so hard on focusing her attention all day, with her A.D.D., that she was on fumes when she came home.  It occurred to me, that wading through the grief process, while functioning in the world moving at a faster pace, can be similar.  My hope in sharing this blog and these thoughts, is to help people, on the outside of grief, understand why months or even a year later, a grief striken person might rather enjoy cat videos to social gatherings, why they might be seemly fine and then instantly become grief bombed unable to function, or why they might wander around room to room with one hairy leg, online shopping.