Grief on Hold

IMG_0143When the news came that schools would be closed two weeks ago, I went into action mode.   I started checking off the list in my head of things I needed to do.  I wanted to stay ahead of the panic, I ordered groceries, a bidet (in case things got really bad), and thought of ways to hunker down through it with my family.

late Sunday night I developed a sore throat and a headache.  My mind went back to the week before at our Mexico mission retreat when I had treated a young girl from another state with a fever.  I had isolated her in the nursing cabin, I was the only one in and out of there.   I stayed home from work, not wanting to possibly share what I had.   Tuesday I went through the drive-through testing facility, I had developed a cough with my sore throat and being an employee at a hospital I qualified for a test.   Wednesday and Thursday my cough got worse, and my throat and secretions turned dark.

By Friday I was having shortness of breath and by Saturday am I could see my tonsils had evidence of a secondary bacterial infection.  I messaged for a virtual appointment, I couldn’t be seen until Tuesday.  I tried to contact my doctor’s office and it was closed.  I rummaged through my mission bag and had a full script of an antibiotic for traveling abroad that would also treat bacterial bronchitis and tonsillitis.

Saturday night I could not swallow more than water, I felt like an elephant was on my chest, I had been taking an expectorant with Tylenol and decongestant for days.  I had taken a Nyquil and was so sleepy.  It felt like too much energy to decide if I needed to go to the ER.  What if I exposed them to Covid-19?  What if I had exposed my entire family and my exchange student?  I had spent the last week as far away from them as possible, bleaching down surfaces and wiping doorknobs that hadn’t seen a disinfectant in awhile.

I started to silently cry, with no test results and I had every symptom listed.  Would I continue to breathe in my sleep?  I could hear myself wheezing.  I had been using my old sports induced asthma inhaler, most likely expired.  With a Hail Mary, I decided to take my steroid I had on hand for emergency RA flare-ups.  I knew as a nurse it would reduce the swelling in my throat, but taking a steroid was not recommended if I had Covid, I went with the urgent swelling in my throat and tried to go to sleep.

As I tried to sleep, I tried to imagine what it would be like to see my daughter again.  How I missed her.  I thought of how much I wanted to see my girls walking down the aisle.  I remember the one-time Mikenna tried on a wedding dress, how beautiful she looked and  I am thankful I got to see her in one.  Then I prayed, I prayed for my family.  I prayed that my family does not suffer any more loss as it already had including our family members most at risk, some over 70.

The next morning, I woke up, my throat was back to normal, just slightly sore, my secretions clear, my cough still ongoing.  The antibiotics had killed the secondary infection and steroids had reduced the swelling.  I spoke to my rheumatologist and kept her up to speed, she was at least communicating with me, unlike my primary or virtual doctor.  Tuesday and Wednesday went by.  Still no results from the hospital testing center.  I was burning through all my sick time waiting for test results.  My husband started developing a cough.  I started to feel horrible for not sleeping apart.   three teens in the house, one young adult, along with my husband and I.  No one could see anyone or go anywhere.  What if I had the virus? It had been ten days since testing.  I agonized over putting toast in the toaster.  How do I not touch anything for ten days, maybe 14.  I tried to watch a show with my student.  Covering my face, soon my cough came on and I retreated to my room.

Finally Thursday afternoon my test came in.  Negative.  I had an upper respiratory infection but not Covid-19.  I ran into my student’s room and told her, I hugged my sleepy daughters, so easily falling into the pattern of staying up until the wee hour of the night and sleeping in until almost lunch.  I hugged my three little black cats, in my defense I only had two, my oldest daughter had brought one home with her.  I hugged my fat, lazy puggle who had loyally would lay on me everywhere I went.

We had developed a bit of brain fog over the last two weeks.  The lack of routine and direction causing a feeling of helplessness in the house.  I realized the house needs structure, walks to take, chores to do, projects to do.  I started pulling out things for the teens.   I had let myself fall into the same zombie-like days.   I thought of the non-profit projects left unattended.  Did they have to fall away?  I could adapt.

I awoke today to my grief.  I had a dream last night where I saw my daughter.  Her hair lighter and longer, she said she was bored.   She was in a dorm-like school, she wanted her movies.  She had a great collection, Pirates of the Caribbean, Harry Potter, The Notebook.    I say this is the only place I can see you, that I would have done anything for you and I wake.

I open my phone as it sits under my pillow to a Facebook memory alert on my phone.  There she is on my phone, eating fondue with her sister, in purple.  The Pandemic had put my grief aside.  I contemplated the ability of our brains to compartmentalize.  I had even considered last week the fact I hadn’t had any moments stricken by loss, but quickly put the thought aside.    Distraction is a coping technique, one I had learned well before my loss.

My heart aches today for those suffering losses around the world.  Alone, isolated and some unable to hold religious gatherings, funerals, memorials, or even proper burials.  We may see many having to put their own grief on hold, compartmentalizing to deal with their own health and needs, since loss knows no time anyway.

 

 

 

Silent Superheros

C5E018B1-1079-4FFE-87F9-084A8D766EAFBefore the pandemic hit our doorsteps a few weeks ago I had the opportunity to go to Seattle and stay with my friend’s family.  I wanted to show my exchange student from the Netherlands our sister city.    My friend’s cousin, Katie has a daughter Sam.  (The names are altered here for privacy.)

I knew immediately there was something different about Sam.  As soon as we walked into the door she talked a million words per minute.  Did I want to see the rocks she collected today?  Would I like to glue the rocks on a paper plate?  What kind of rocks do you think they are and so on.  I could tell also by the vibe in the room she had worn everyone else out hours earlier.  Her step-father retreated to his room, after being polite and hospitable to opening his home.   Her mom went about making home-made pizza and serving it to all of us, even though she looked exhausted.  I immediately regretted not offering to pick something up on the way to their remote little beach town.   The bottle of wine I brought instantly feeling like the wrong choice for the occasion.

We settled down pretty quick to our rooms, Sam tucked in the living room couch giving up her playroom and bedroom for all of us to share.  We were instant best buds so there were many goodnight hugs before mom sternly warned of one more visit to the bathroom, or visit her room to see the “big girls” or visit the sink for water.

Up early to catch the ferry we said goodbyes until later that evening.  She was to remain home.  We had a lovely unexpected rain-free day in Seattle filled with vendors booths, the original Starbucks, seafood and the disgusting gum wall, (or should I say gum road?)  We grabbed some salad and bread for an easy pasta night and headed to the house.  Sam greeted us with open arms, hugs, and pictures to color for hours.  I noticed Sam’s vocabulary extremely advanced for her age. Her mom fixed pasta and told me how after her husband had passed form a sudden condition she had built the house with Habitat for Humanity.

She explained how she actually had helped build the house and some of the houses nearby.  To be awarded a House for Humanity, you have to actually help build the house.  I couldn’t imagine building a house, grief-stricken and left with five children, two of whom had already moved away and started lives and families of their own.   I was immediately impressed looking at each stair as I walked up to it, wondering if she had built the stairs, cut the baseboards and imagined myself with power tools, but there was more to the story.

During dinner, Sam went on to tell me all about getting her make-a-wish granted and how her brother was not so happy to go on a trip.   Sam’s brother was 13 and had barely visited us from his bedroom.  I assumed, of course, it was because of being a 13-year-old boy.  I was confused about how the make-a-wish foundation granted wishes to children that had lost a parent.   I remembered at bedtime how she had more meds to take than my 70-year-old patients.

Katie went on to tell me how Sam was born with a congenital heart defect and had a heart transplant as a baby.   Her husband had died not long after the transplant surgery. She couldn’t just sit and be in her grief.  She would go on and spend many nights in the ER, with what should be a routine ear infection and sit with her daughter in the children’s hospital fighting off what should be a routine cold/flu virus.  Though Katie tried to send her daughter to regular school, fighting through the red tape of having the school try and alert her to any illnesses spreading through the school, she eventually had to submit to homeschooling. Sam was already far behind her classmates missing so many days and weeks from school.    Her vocabulary now making sense since she spent her days with adults.  She told me how Sam was recently playing around in the kitchen and fell on her knee.  She had a small gash and Katie put ointment and a band-aid on it going about their day.   Days later Sam ended up very ill with an infection just from the cut.  Her immune system was extremely delicate to any outside bacteria.

The make-a-wish was for Sam.  I felt a little silly for putting it together hours later.  Children that survive the first year of a heart transplant can expect the heart to survive between 10 and 15 years.  Then they will need another heart transplant.

As I lay down chatting to my friend about the unfairness of what we get dealt with in life, she told me how Katie’s new husband was Katie’s husband’s best friend.    I could see how people might have difficulty with that from the outside, possibly criticizing her, but anyone doing so would not know what I know.

No matter what Katie did, she could not bring back her husband.  She was left to carry her grief alone, losing the love of her life, her childhood sweetheart, the father of her five children.  I do not know what that is like, but I know what losing a part of yourself feels like after losing my daughter.  She was then left with the impossible task of caring for her ripped apart family, children going through grief and loss and puberty.  Something you cannot take away from your children or fix as a mother.   As a mother, our instinct is to protect our children from pain and to watch them ache and heal their scars is almost unbearable.

She was left with a new heart transplanted child.   She will struggle daily with wondering if the other shoe will drop, and though I do not know how it feels to have an immune-compromised child, I know what it is like waiting for the other shoe to drop.  Worrying about things you cannot control.  The fall-out of grief not being over when someone dies and the repercussions of a heart transplant not being over with the surgery.  Every decision, every choice she will weigh when it comes to her daughter and her family.

She had a house to build and she built it.  She found love and companionship that I believe was a gift.  She is a survivor and one of the strongest women I have ever met, though you would never know it.  I wanted to share a tiny piece of her story because so many of us have one.  Sometimes we have no idea why a mother might freak out over being unable to take her child to school because so many are unvaccinated, why she carries five bottles of hand sanitizer in her purse.  Why the women sitting at the park cries uncontrollably.  These secret superheroes walk among us every day and I am thankful for getting to know and recognize one.
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Pitfalls of Celebration

24D512FB-1AFA-438B-8275-72CBA1DFC75DA few days ago I kept daydreaming about my birthday.  I could go away for the night with my husband, maybe I could once again meet up at a nearby wine bar with my girlfriends.  I thought about getting my hair done or eyebrows, but when the day came I found myself in a puddle of tears.

 

Facebook has a way of reminding you of all your birthdays gone by.  My birthdays always consisted of Forced Family Fun.  A day when my children were forced to do something with me.  It didn’t matter what selfish teen stage they were in, it was Mom’s birthday, therefore they were stuck bowling or shopping or whatever Groupon event I could find.

Every once in a while, my husband and I would go off to our favorite spot in the mountains and I looked forward to the fireplace, the sunshine on the white pristine snow.  This year we literally could find not one night our schedule allowed for a night away, even if that was what we wanted to do.  I spend a couple hours with the girls the day before my birthday having waffles and window shopping.

When I woke up today to Happy Birthday texts, all I could think of was how do I feel Happy?  How can I have a happy birthday when all I can think about is being tired of being bereaved.  I am tired of being ok for a few days and then waking up sad, like today and wham!  Today is your birthday be happy but nope wham I am hit with the fact all my girls aren’t here and I am a puddle.  Why is my dumb birthday now a trigger?

613b9bfc-3c7e-4770-a130-e88e8f2b56baI should have recognized the pitfall and seen it coming.  It doesn’t matter if it’s my day.  Any special day with all your loved ones that now has a piece missing will be a trigger, a hard day.  Maybe I shouldn’t write about it, but this is the problem I have been trying to bring into the light in society.  The things we hide, the things that make us sad, the things that are awkward and we aren’t supposed to talk about.

As I sit here I also realize I was trying to celebrate like the old me.  The woman that wanted shopping and beauty treatments, special desserts and romance.  That person has gone.   When I get a message about a Happy Birthday, I think to myself I just want a peaceful birthday.  One without my cortisol racing.  A day without drama.  A quiet day where maybe I can lay these tears aside at what is gone and just appreciate the pink buds on the purple plum tree my daughter used to lay under while covered in falling blossoms.    I can appreciate that while I live in the Northwest and every February is wet, that today there is no rain.  There are puffy white clouds I can stare at and imagine different shaped floating by.  I can wander down to the river and her bench and feed the ducks as they waddle by.  I can gather around my girls tonight and make a wish that they ALL feel my love throughout all their lives and beyond.

“It’s no use going back to yesterday because I was a different person then.” Lewis Carroll1D9A85D1-D9A6-4B34-87AE-955607B0752D

I cannot unjoin this club.  I cannot quit it because I’m tired of it and don’t want to have pitfalls, triggers, and the fear that happiness is not a feeling I know how to exactly feel anymore.   I want to go back to birthday toasts, and ignorance and bliss.  Where bad things only happen to bad people. I want the life I planned please and thank you.  I want small talk and planned birthday parties.   “Because this randomness, this roulette wheel of tragedy, is heavy” -Elizabeth Thoma

 

Today, my birthday, the person that I am today, needs to appreciate the day in a new way.   I celebrate in reflection, in thankfulness for quiet moments, and for the love around me that I have been blessed with near me and far away.  When I thought of all I wanted for my birthday.  All I could think of was expanding my little non-profit and wishing and praying for healing for my earthy children.   The days of wanting trips and clothes seem like memories from someone else though in truth I wouldn’t turn a good birthday gift away.

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.