Just Ask

Walking in the Valley

1D9A85D1-D9A6-4B34-87AE-955607B0752DI am not sure when I learned to actually ask for help.  It wasn’t really always in my nature.  I know in high school I went through a serious trauma all by myself in my junior year.  I never told a soul, not a friend or adult what I was dealing for quite a while.  In truth, the entire experience left me alone without one friend or adult I felt I could turn to.   It wasn’t until months later my history teacher, seeing my grades slip, and my head fall knew that something was wrong with me.   He reached out and got me into Teens Involved, a Christian outreach group.   I have looked back and wondered why I didn’t reach out for someone to help me through it sooner? Why did I wait for my History Teacher, whom I barely knew, to reach out to me?    I am still thankful that he did.

Years later as I was given the diagnosis of adult ADHD, I remember feeling stupid pulling out my accommodation paperwork on the first day of nursing school.  Thankfully the girl next to me pulled out hers and that began a pretty awesome friendship.  I was in my mid 30’s and I was just learning to ask for help.   If I didn’t understand something I would force myself to go into the teacher’s office hours and ask for help.  I remember being made fun of for not knowing how to work an oxygen tank by one instructor, he told me in clinical, “even a monkey could do it.”   If I hadn’t asked for help I wouldn’t have made it through school.

I have contemplated depression and when people find themselves in such a dark place they cannot get out.  I wish I could teach people feeling that way to wait through the pain, the darkest hours, to ask for help and reach out and if you do not get what you need to keep asking.   Keep reaching! The deep pit is only tempory, though it feels like an eternity.

I have a friend that has been unemployed for a while.  We have been walking together and today when we walked I took a look at the valley we were walking in and I thought about how she has willingly walked in the valley with me and I have with her.  She is one of the most loved people in my community.  She knows everyone and is involved with everything around town.  Her Facebook friend list is impressive.  She was unemployed for a very long time.  She was in the pit, even with all her friends and contacts.  Depression started to creep in.  She continually prayed and asked her friends for help.  She had two job interviews recently and asked everyone she knew this time to pray.  Not only did she get the job, but somehow all these weird pieces that were nothing shy of a miracle happened for her to become hired.   So many pieces that you cannot deny her prayers being answered.  But she had to ask

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The Valley of Camissia

During the last 23 months of the hell of losing my daughter, I was blessed by the people around me.   Unfortunately, we had other things come up even after the loss of my daughter that left me almost crippled with worry, one being the loss a few months ago to my potential son-in-law.  Taking my own advice, I reached out to a friend from work inquiring about me.   She asked if there was anything she could do during one of these moments of being “in the pit” as I like to call it.   I said yes, “is there any way you would be up for grabbing my grocery list and I can PayPal you the total I had asked?”   She brought dinner that night, she and another co-worker split my grocery bill and wouldn’t let me pay for it.    It was a little thing and a huge thing and it helped me focus on other things.   Many times as we go through loss, tragedy and difficult times we don’t know how to ask.   People will say, “let me know if you need anything?” Honestly, it would be nice if in those times your support people just knew how to help you, but they don’t.

They don’t know you could use someone to pick your kids up from school, that you cannot eat for months but that your family still needs to eat so freezer meals are better. (One of the best gifts, when Mikenna passed, was two huge bags of frozen breakfast burritos.)   That having someone clean your house before everyone arrives to give you condolences is an awesome help, or even someone doing your grey roots before the funeral.

I recently have felt overwhelmed with housekeeping.  With three daughters and my exchange student and now four pets, I find it hard to even know where to start.  I make sure nothing is gross and unhygienic, but I am not sure how to keep up with the deep cleaning or honestly how to even get started.  The dusting, the windows, the curtains.  None of it ever seems very important so I have let it go.   I decided to reach out to my friend who runs a cleaning service as well as her full-time job.  I just need direction and advice on how to get started.    I let go of the embarrassment of asking for help.  I realized a long time ago that I wasn’t Martha Stewart.

If I could get anything into my surviving children’s heads or anyone else for that matter, it would be to Ask for help.   Ask for help and keep asking.  You don’t have to be alone.   Even when you feel like no one understands and you have been hurt beyond taking anymore, someone will listen.  Believing that no one cares and no one can help is a lie.   In American history, for instance, some of our darkest and saddest times, the darkest hour so to speak, have directly preceded some of our biggest progressions.    In grief we isolate.   In depression we isolate.  We just do not have the energy for conversation.  It is ok to say, “I just need someone to sort three bags of unmatched socks with me.”   like me, you might be surprised at who shows up just waiting for the opportunity to do something.

 

 

You Are Here

CFEBC9EC-7A1F-406C-8F9D-236662DC346A.jpegYou are here was what the map said as I stood inside the hospital atrium.   I kept looking at the map trying to compute where I was and how far away food could be.   It had somehow been many hours without food, I remember realizing as I stood there.

Why isn’t there anything decent to eat at 8 pm in a hospital I had thought?  How many times had I passed family members at my own hospital in the hallways with the same worn-out expressions on their faces?  What don’t we provide better nutrition to waiting families I thought?   It appeared I would be subjected to another Starbucks muffin that night, I contemplated, standing there for an unusual amount of time for someone looking for directions.

I stood looking at the multiple tunnels to different elevators, A, B, C, as the floors randomly changed as you walked through the halls.  The hospital I was in was much like the hospital I worked at.  Built somewhere at the turn of the century and then added on as space was needed and procured, but not in any way that made sense if it had been built in the 21st Century.

6F6D2368-18E4-4D63-A5DA-A23D76B68B43.jpegI wandered down the halls in multiple directions looking for the mysterious kiosk that was marked by blue dots on the map, though I hadn’t been quite sure what hallway let to the potential food.  Even in the best of circumstances, I lacked spatial ability.   It was one of the reasons that I would not have made a good pilot overall.   I had spent $18K in my youth after Desert Storm trying to learn how to fly.

Growing up in a family whose funds were limited, parents that when they were around fought all the time, and a mom who worked two to three jobs on average, after many years as a stay-home mom, was why I spent many hours daydreaming about “what I wanted to be when  I grew up,” as I watched my younger sisters most days.

My grandmother filled my head with her stories of being one of the first women in the military.  She told me scandalous stories about young pilots and teaching them how to understand morse code.  She filled my head with her adventures of caring for a platoon of young women until she ran off and married a pilot of her own and had to leave the military.  Women could not be married and in the military back then.  Her daughter, my aunt, had joined the airforce and worked on airplanes.  In my bedroom as a young teen, I dreamed of exciting adventures like theirs.

I joined the military during the pre-Desert Storm era and I was told I could work in air traffic control in a helicopter ambulance unit, but I could not become a pilot with my eyesight.  Looking back, this was one of my first lessons in realizing your plan, is not always “the plan” for you.  Not long after my training, I was sent to Desert Storm where I spent many long nights dreaming of flying at college when I got home.

I got home from Desert Storm and off I went to Bowling Green’s private pilot program.  I was an amazing VFR, without instruments, pilot.  I didn’t need any instruction, I moved the plane as if it was part of my body.  My instructors were baffled. I still remember the feeling of taking off.  The speed and adrenalin as you pushed down the runway and headed up into the air.   I also was a terrible instrument pilot.  My lack of spatial ability had me struggling, my ADHD (at that time unknown), made it extremely difficult for me to focus. Nothing seemed to be going well and I knew I was forcing myself to do something I wanted to do but was not meant to do.  I had spent so long not seeing the forest through the trees.  I was not mean to be there.

During Desert Storm, I had spent months idolizing the helicopter ambulance nurses.  They had the best job.  I worked on maps and the radio and they worked on patients. I went back to military school and asked to be a nurse.  The closest opening they had was as a surgery assistant.  Off I went to school and spent 15 years as a surgical assistant before I went to nursing school. (And now I am here, here reminiscing about how we get to the places in our lives, how to teach my surviving children that life is not all about one dream and one path).

A brain filled with cortisol from stress cannot process a map I remember thinking.  Why don’t we make things less complicated for patients and their families?  It is a thought that hadn’t occurred to me until then.  The information person should be near the map and instead of listing complicated directions that they will only nod to, why not write them down for them? Why don’t we hand out cookies or crackers in the waiting areas?

I wandered through the hallways of the historic hospital, noticing the pictures of benefactors and calming random art placed on stark white walls.  Why are the walls so white?  Why aren’t they a soothing color?  The florescent lights bring migraines on already tired eyes.

You are here.  I had found myself back at the map.  I was thinking about how it would be helpful in life if in times of uncertainty and sadness we could be given a map. A map that showed us where we were but where we were actually going.  We could see that we were not really lost.  The big picture of our life that put that one difficult time period into the perspective of just being that, a difficult time we would get through, leading us on to better things. We could see where we needed to go.  We could understand that even if we are surrounded by only what we can see, such as everything feeling like a roadblock and uncertainty, we have a green amazon forest we cannot see through the trees not far away.

I am pretty sure the cafeteria in the hospital was actually one floor below me that night.  I can see that night with a clearer perspective now that I am not in it.  I write all of this thinking of my daughters that still, and most likely always, are dealing with grief, dealing with being a young adult, and struggling to understand “Where they are.”   I want them to understand that when they feel like they are stuck amongst the trees they should continue to plow forward through the mud of this world, that this is only one snapshot in time, A part of their story, but there is a huge part of their story unwritten.  That they do not need to know where they are going right now, but to know its ok to not have it all figured out, to, “just keep swimming, swimming, swimming,” as Dori says.  That outside the trees where they cannot see is a beautiful, interesting, forest and the path there is not one that is straight, and that’s ok.

 

 

 

 

 

Things Not to Say…

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“Let me sit next to you and hold your parachute”

My youngest daughter, while walking out the door today said she was quitting her internship at the local NAMI art therapy position.    I asked why?  I thought it was a good fit?   She went on to tell me how her instructor for the internship had told her that her losing her sister was meant to be and that she would be stronger for it.    I was shocked that someone working with teens in the school system would say that to her.   How could she not realize she just told my daughter that her sister’s death was the reason that she will do well in this world?  I told her, unfortunately, people don’t know what to say, or how to just sit next to someone and listen.  They feel the need to help, provide advice, even if none of it is helpful or is useful.

22 months ago, when my daughter passed, someone wrote to me in a card, “God only gives you what you can handle.”  I actually had to look up the verse, 1 Cor. 10, because there is no way God would give me the death of my child because I could handle it??   Actually, in 2 Corinthians 1, Paul explains that he and his companions were “so utterly burdened beyond our strength that we despaired life itself.”   I am guessing that it didn’t sound as pretty in condolence cards.   Instead, 2 Cor. 12:9 “And he said unto me, My grace is sufficient for thee for my power is made perfect in weakness.  Most gladly, therefore, I rather glory in my weaknesses, that the power of Christ may rest upon me.”   Again, maybe these words would be more helpful, but what people want to do, is to make themselves less uncomfortable when faced with the unexplainable, like the death of a daughter or sister.

Just recently, as if we haven’t had enough loss, my oldest daughter’s boyfriend unexpectedly left the relationship and then soon after also passed.   The double loss for my daughter is unfair.   Even I caught myself at first, trying to offer lame words of condolence to her, luckily I stopped myself.  The loss is not rational.  Taking my own advice, I just listened when she wanted to talk, I put my hand on hers when her eyes fill with tears at the restaurant.   I cannot take away her pain, or make myself feel better with empty words.  I can sit with her in her grief, acknowledge how she feels once again her life path altered.  I didn’t try and tell her maybe it wasn’t meant to be, or she will be stronger for this, I just sat next to her.

My youngest daughter, who has some emotional regulation issues, burst into tears when she saw her sister walk in the door and move back home yesterday.  She couldn’t express it, but she felt the sadness of her sisters’ new loss and her reaction was an honest expression of her love for her.  She later asked me, why has this happened, again?   (I even had a couple co-workers ask me the same question).  The old me, before the unexpected loss of my daughter, might have tried to justify a loss in a way that could make me feel like it wouldn’t happen to me.   I explained to my youngest this morning, that there is no good answer.  We live in a messy world.   I told her about my 18-year-old patient last week with facial bone cancer.  He has about 5 years to live with that prognosis.  I recognized the parents drained and exhausted facial expressions, like one I have held,  as he was being prepped for surgery.  The boy expressed content at whatever he had left, compelled to live his last few years to the fullest,  the look on his parent’s faces seemed to say they felt differently.   It is unfair and there is no answer.    We can just love and support each other, sitting next to each other in the valley.

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In my garden of remembrance

 

 

 

 

Rethinking Thankful

5F539D02-F442-470C-A9FF-91D647D14E19.jpegThere was a facebook video going around recently where the Dad wakes up and unwraps his wife and kids, then his car and shower and so on.   At first, I thought it was stupid.    Also, I will never get to “unwrap” one of my kids….   I left that thought on the back burner in my mind and went about my day.   Then I was in a small group a couple days later and someone brought up the same video.

With some trepidation of bringing my entire group to a somber level,  I told the funeral owner sitting across from me I was thankful for him and why.    The truth is, with Thanksgiving approaching, I’ve been rethinking Thankful.  It is easy to say, I am thankful for my house, and cars and kids and dog and whatever, but what does it mean to be truly Thankful? How can I feel truly thankful when my child has been taken from me?

I’ve come to some sort of understanding that I can be thankful for what I value, and still be sad from what I have lost.  You can feel both, until now, this never occurred to me. I sat looking at the man that I have spent years discuss bible verses with.  I really do not know him or his wife extremely well outside of the group.   What I do know, is that I am thankful for him and I have never told him or anyone why, until this moment.

The day after my daughter died, she could have been sent to a random facility, as a matter of fact, the hospital somehow had chosen some random place for her to go.  My pastor put me in touch with the man sitting across from me in my small group.   Instead of going somewhere amongst strangers, she went to his funeral home, near our home, he was there with her, prayed for our family and I cannot express to anyone how much that meant to me.  It occurred to me that was the feeling of being thankful.

Many days when I am walking into work, people will ask, “how are you doing today?” There are some days I would respond, “Well I am here.”  This sounds somewhat cynical, but the truth is I am thankful for the days I wake up.  I am thankful for the days I am able to have a job, one that has been understanding of my own battle with grief and mental health.  I am not thrilled with the lack of understanding our world has of these issues, but I do know there are many people without any health care, some of which are my own friends.

How do we move forward being thankful when we have lost a part of us? How do we celebrate a day of Thankfulness?  My advice to others is to do what feels right to you and what you can.   One of the greatest gifts of having a tragedy happen in your life is the realization that petty things or checklists or other people’s opinions really don’t matter.  I already had a bit of that personality, but now, If someone thinks I shouldn’t be doing this or that, I don’t care.  If you haven’t walked in my sneakers, then suck it.  If I didn’t ask for your opinion, then don’t give it.  Too harsh?

Last year my surviving girls asked that I keep the holiday traditions going.  I knew that some things were always going to be different so I kept what I felt was important to stay the same (as hard as that was) and incorporated some new traditions, such as my purple angle tree and my Harry Potter room, holidays are still a work in progress as we enter our second year.

Some people dealing with loss put a place set out for their loved one, some people have their holidays in a different location, whatever they need to do to be at peace with their holidays, should be ok with everyone else.  (and if it isn’t they should keep it to themselves!)

This year, I am thankful for a sweet distraction.   It comes in the form of an almost 6ft, 17-year-old blond, in the form of our Netherlands exchange student.   In truth, it was a very big gamble to know if having an exchange student stay with us only a year and a half after our family being thrust into turmoil.    It was something we had stumbled on and I hadn’t even been sure all the details were going to work out.

She has never experienced Thanksgiving and some of our other American traditions.  Though we are still grieving our loss and having moments and times we are sad, it gives me something to be distracted by.  like when I tried to explain the bizarre reason for Thanksgiving and my 20lb turkey or when I watched her try candy corn for the first time.  I am thankful for her visiting and being the “something different” in our house this season.    I may never walk around with my #Blessed t-shirt or bumper sticker, but I know the value now more than ever of what I do still have and for that I am thankful.36BD5512-F97A-4424-B9AB-E1E3EB6F5E4A.jpeg

The Leprosy of Loss

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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”.

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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.

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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

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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.

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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.

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The Balancing Act of Loss

D615250F-B73E-424D-8F60-1CE74DA93710.jpegWhen I find myself down for days, I know I need a project or something to distract me.  A goal, a craft, something to pour my energy into.   This can go on for days or weeks, sometimes working through meals and long past the hours when I should be sleeping. The tricky part is this can lead to insomnia, and many in loss of any kind, battle with it.

I talk to others going through this process of living with loss, some years further out than myself, and many threw themselves into work or a huge life change to give them something, anything else to focus on.  The difficulty they then found was at some point they had to stop going a 100 mph as the wall of loss hit them like a tsunami wave.  Some people are unable to work the same career any longer after a tragedy.

I didn’t understand at first the, “wait two years before changing careers,” advice of loss.   At times I have hated everything about the place I work, and I would say 75% of people in my type of grief, also hated their jobs and everything about it.  After some serious inner perspective, I realized this really is more about projection, a place to direct the anger of the loss of control of my environment.  Sure there were things I didn’t like about my place of work, but another grief mama and dear friend so sweetly pointed out to me, these were the people that understood my good days and my bad days, the people that knew who I was and what I am capable of, they know my leadership skills and why I stepped down from most of my positions, they also knew I would come back to it when I was ready.

45FE55FD-50BF-43C2-804F-ED48294A2FF7.jpegIn some ways, I had wished I had found the ability to take a long sabbatical, but I think I may have never gone back to work if I had.  The other side of the pendulum isolation. I also completely understand this.  The truth is it takes so much energy to be social, especially now idle chit chat seems pointless.  I have always been someone the would rather just be real with people.  It is probably why I tend to hang out with people that are the same way.  Even before the loss, I wasn’s someone that would go out of my way to meet people of importance to my career, social status, or my children’s social status.   Even growing up I was more of a tomboy, happier to hang and play cards with the guys or have one or two girlfriends I had known since elementary school, sit up all night with me and watch the sun come up over our sleepy town.

Many people struggling with loss just don’t have the energy for any of that anymore, the problem happens when this becomes so much easier.   It is similar to depression in that it’s easier to stay in your comfort zones where your cat and dog can snuggle up to you and no one cares if you watch movies all day in your bathrobe.  The tricky part is, after a while, getting up and out becomes harder and less appealing.  If we are lucky enough, we have friends that come around to drag us up and out, the ones that don’t care how much we talk or what we talk about.

This is called the balancing act of Loss.   Too much distraction all the time is unhealthy for us and sooner or later the tidal wave comes at us and we can’t get back up.   Too little engagement in the outside world and we can stay incapacitated to the point of also not getting back up.   It’s finding the ability to do things that have meaning and putting some energy into those things, while still giving ourselves permission to sit in the quiet spaces.

373FC591-5A5A-4DA8-B6E5-6A62E4440A62.jpegRecently I took my girls camping.  It is something we have done every year since the girls were little.  It almost didn’t happen due to sports and other complications.  I was determined to go even though It took a lot of energy to make it happen.  While we were camping I had the ability to reflect on camping trips past, the games we played, the food we made.  As I reached into my daughter who passed favorite game, Bananagrams, a bag of probably 200 letters, I pulled out four squares.  They happened to be my daughter’s initials M.M.V. with an A.  @MMV is teen lingo for tagging someone.   I don’t think it was random and my oldest daughter watched me do it and stated, “I sometimes think you make this stuff up, but I just watched that happen!”   Of course, I came home and was physically and mentally exhausted, after all the distraction and effort, I need a day of serious downtime.

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The balancing act doesn’t end after 18 months I’ve found.  I kept thinking I would hit some magical date and everything would be back to somewhat normal.  I have decided to stop looking for the day when something doesn’t make my eyes tear up, this is just who I am.  I give myself permission to be sad sometimes, to feel the moment, the memory, to be mindful of it and acknowledge it.

I’ve been trying to figure out how to tell some of my acquaintances, (maybe they will read this) Don’t stop asking if I would like to do things.  I know I said no for over a year to most of the lunches, coffee dates and glass of wine offers.  There might be times I am not up for it still, but there might be times that I am.    People isolate for many reasons besides loss, keep asking, keep calling, keep coming over with your hard lemonade, ice tea or PBR and sitting on the porch.  When the cards are put away, and the tissues have been put back in the cabinet, the casserole dishes have been returned from whatever life event we had, we could still use the company once in a while, hopefully, now we will actually accept it.

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On the beach collecting heart shaped rocks found all in an hour 💜

 

 

 

 

 

 

 

Solving the Unsolvable

69BAE304-8C51-435A-9E95-F2B88CC0F38E.jpegD05BB5AE-E717-4B3E-8458-3AA6A14ABD7A.jpegMy daughter loved puzzles, in her honor, as soon as I find a place the cats won’t push the pieces off, I plan to put one out to work on.   She could sit for hours looking at the various colors and shapes, forming the corners, then the edges and filling in all the spaces in between.

My mother was a sort of a “let’s see how it all plays out” kind of person.  As the oldest and somewhat control freak of a child, it drove me nuts.  I started at a young age, seeing a problem and then working every angle I could think of until I found a solution.  When my parents said they couldn’t send me to the University I wanted to go to, I worked out joining the military and dating it for my 18th birthday so I could eventually go to the school I wanted to go to.    It didn’t quite go as planned, but it solved my problem at the time.

When my husband and I moved up from California, we were newly married with two small babies and no hope to affording our own home.  I was determined to figure out if it was even possible, so with the help of a family friend real estate agent, and living 6 months with my in-laws rent-free, I ticked off all the things she said to do to qualify.

Years later our youngest daughter would be diagnosed with one of the rarest learning disabilities.  Having one side of her brain with verbal intelligence higher than average and the other side that deals with non-verbal information such as where letters and numbers are in space as average causes a disconnect.  No one understood it then and most do not know unless they read about it.  When she was diagnosed years ago it caused me grief to know I couldn’t change it, but I knew I could help her learn to have the best possible odds with it and I set out to learn and advocate for her.

Fast forward a few more years and I battled going back to nursing school with the help of a supportive husband and four kids after being told It wouldn’t be possible to get in.  I ticked off each class one by one, crying through statistics with my husband dragging me through it.

A few more years later and the challenges became harder.  An eating disorder hit.  I tried to learn the cause, the solution, all the ways I could help.  The disease was messy, complicated rooted in genetics and control issues, but we took it head-on and did everything we could.    A couple years later major depression hit my daughter and we scrambled with all the tools and help we could find, unable to see the depths of the depression, I think she wanted to spare us to some degree.

Here I am today in the wake of her passing.   I write, I walk, I cry, I read, I talk, I look for answers from her, from God, and I inch forward with the huge boulder of loss I carry throughout my day, and I try and focus on my children here living and learning as my husband likes to say.

Rumors around the online grief community warned that the months after the first year were in some ways worse.  I couldn’t fathom how they could be worse than the ice pick to the heart pain of the first year.  As I reached the 1.5-year mark I understood some of the comments.  It wasn’t so much that is was worse but more difficult in another way. It was trying to accept the fact the situation wasn’t changing, that there is no solution to this problem, there is no accommodation, nothing to make it better it just is.

As the days and months went on, I was finding it more and more difficult to sleep.  I had genetic test results I had received and I kept trying to understand the pages and pages of alleles, piecing it together with other factors, trying to understand the unsolvable mystery of losing my daughter. When I did sleep I was tangled in some dream of trying to rework the situation in some sort of natural disaster trying to save my family, a flood seemed to be my brains favorite scenario.    Fear of the other shoe dropping somewhere in my life has started causing me anxiety to where I find myself badgering my husband to get his 50year old colonoscopy, skin cancer check, and anything else that plagues me at 3am.

I realized my personality, the control freak, problem-solver, doesn’t compute an unsolvable problem.  I was like a computer with an auto-login just continually rebooting and rebooting until I shut down, or like a DVD left in the DVD player, just playing it over and over not getting a different ending.  The cause of my insomnia was and is the inability to accept the unacceptable.

My youngest girls happened to be out of town for this last weekend as I contemplated my theory.  I had a list a mile long of things we needed to get done around the house.  Instead, thankfully my husband loaded the kayaks on the truck instead of stomping off to home depot with me for the remodel of the girl’s bathroom that needed to be done like five years ago.

0F68EBCD-C75F-4096-8774-F989C033B4E2.jpeg Sitting in the kayak I floated close to the edge of the river, in the shaded side.  I smelled the pine trees on the wind searching with my eyes for sucker-fish along the bottom of the river.  Their whiskered mouths vacuuming up whatever delicacy lies on the bottom of the riverbed, their metallic blue fin shining against the sunlight.  I watched a blue heron fly effortlessly by, though his body-shape not as streamlined as some birds, leaving me to wonder how he moves so smoothly and gracefully.  A butterfly flits by and out of view.  I assess my emotions, for one instance I recognize the feeling, it is not joy, that is an emotion I hope to still feel again someday, but it is peace.  This moment I am thankful for the quietness of my mind and for this feeling of peace, even if it lasts only for the moment.

In the nights ahead I know I will still struggle with acceptance, I am not sure when that will come.  What I will try and recapture is the moment of peace I felt and hopefully, with the help of Benedryl or melatonin, tea or whatever else, I will be able to sleep leaving the unsolvable unsolved, in a dream of tiny jumping fish and hungry blue herons filling the sky.