Life Lessons Learned From Hair Loss

In 2013, I was officially diagnosed with Frontal Fibrosing Alopecia (FFA).  When I was diagnosed with this hair loss condition, I had never even heard of it.  Somehow, after my diagnosis, in my internet search, I was able to find an online support group for those suffering from alopecia.  Within the online Alopecia Foundation site, I found a group specifically formed to support those diagnosed with FFA.  It was by participating in this internet group that I first found answers to the questions I had  regarding my hair loss journey.

June 2013 My hair right after diagnosis for hair loss.

If you have recently been diagnosed with scarring alopecia, or if you have been suffering from it for years, I am writing this post for you because I hope that you will find support from others whom have learned to live with this disease.  If you have not already done so, I hope you will one day be able to look back on the journey and say, “I am a better person because I have this disease than I was before I had it because now I have learned so much about who I really am as a person.”  

When I was first diagnosed with this condition five years ago, I never would have believed I would one day lose over 50% of my hair, nor would I believe that I would be able to say that I that I have gained more from having this condition than I have lost.  The process of getting to this point has taken much time, many tears, much pain, and a lot of searching for answers. 

June 2014 My son’s wedding I thought I could still hide my hair loss, but then the wind would blow!

 It was not until at least a year after my diagnosis that I first learned of the Cicatricial Alopecia Research Foundation (CARF).  It is a nonprofit organization dedicated to providing patient education and support for this little-known condition.

In June of 2016, still searching for answers, searching for a cure, and searching for that silver bullet that would give me the solution that I believed had to have, I registered for the 7th International Patient-Doctor Conference in New Orleans, Louisiana, that was sponsored by the Cicatricial Alopecia Research Foundation (CARF).  I was interested in participating in CARF, a nonprofit organization dedicated to providing patient education for the little know condition of scarring alopecia or cicatricial alopecia, because it is dedicated to providing “education and patient support,” while also raising public awareness of this baffling disease, and the organization is also dedicated to promoting research into the causes and potential cures for the disease.

 

June 2016 My hair loss when I attended the CARF Conference could still be camouflaged  by wearing a headband.

Determined to find answers for this strange and baffling condition that had turned my life upside down, I was just sure if I attended this particular conference and had a chance to learn from all the experts in the field of scarring alopecia, I’d find what I was looking for: a cure.  

And so, in 2016, my husband I journeyed to New Orleans, the first time we’d ever been to this wonderful city, so I could learn more about the disease itself, find answers I had about treatment, and gain the support I needed to live with this rare condition that had struck me seemingly out of nowhere.  

While, the world of hair loss was still a very new world to me, I wasn’t a complete novice.  I’d learned a great deal about my condition from the previously mentioned support group for those suffering from Frontal Fibrosing Alopecia that was sponsored by the Alopecia Foundation online.  

I’d even written a blog post about my journey with hair loss that I had posted in the online support group.  From that post, I’d made a new friend, one whom was not a part of the online support group, but she was one whom was very knowledgeable about the condition and led a support group in a major city on the West Coast.  She had directly responded to my blog post in writing and gave enough identifying information that I was able to track her down by sending an email to her support group.  She responded by calling me.  I think we spent nearly two hours on the phone the first time we chatted.  Finally, and for the very first time, I actually was able to speak with a real live person who had the same disease I did, and who knew so much about it.  She was involved in helping with the CARF Conference, and she encouraged me to register and attend.

My ever-supportive husband also encouraged me to attend the conference.  He said he would accompany me and would spend the time I was at the conference exploring New Orleans.  And, so when the conference time arrived, off we went to NOLA.  

I remember not long after we checked into our hotel, Jim left the room to get ice, and returned saying, “You know you are at an alopecia conference when you start seeing bald women.”  I was horrified.  Bald?  My worst fear would be realized if I went bald, I thought to myself.  

Later that night, the night before the actual conference was to begin, anxious and yet hopeful, I put on my rather new custom-made hair piece that I had recently started wearing to camouflage my hair loss, and boarded a bus hired to carry fellow scarring alopecia sufferers to a pre-conference reception that was being held in a meeting room at a fancy restaurant near the French Quarter.  Before I’d even left the bus, I actually connected with women I’d already met online.   Conversations with these women soothed my nerves and made me feel less alone as I faced actually walking into a room where other conference attenders had gathered for a reception welcoming them to the conference. 

 

Custom made topper 2015

As I walked up the stairs to the meeting room, my mind went back to so many other receptions I had attended during my career in education.   Those meet and greet gatherings were always so enjoyable because I had a chance to mingle with colleagues that I knew and respected from my professional world.  I always looked forward to the conversations we would have that helped us form more personal connections, but this meet and greet with others afflicted with hair loss petrified me.  My confidence in socializing and in meeting new people had always been high, but after suffering from hair loss, I found social gatherings had suddenly become stressful.  I had lost a great deal of the confidence I had always possessed.  I felt very alone in my struggle, and I also felt very alone as I attended the function.  I only knew a few others because of “conversations” I’d had with them online, and I knew my friend I had spoken to on the phone, but she had many duties that night in making sure that all went well for conference attendees, so I didn’t feel I could latch right on to her for support and encouragement.

I’ll never forget entering that meeting room because as looked around, I was struck by how beautiful the women in that room were.  I don’t know when I’ve ever been in a room filled with more beautiful, gracious, and well-put-together women.  And the hair!  I saw the most amazing hair!  All I could think was, Why are these beautiful women with these amazing heads of hair attending a conference for those suffering from hair loss?  Soon, I was being introduced to others by the friends I made on the bus and by the friend that I made on the phone because of my blog post.  The women I met were so authentic and confident, I found myself asking myself as I studied each woman’s hair style, hair line, and hair color, Is that hair real, or is it a wig or hair piece?  Those of you who suffer from hair loss will probably chuckle when you read this because that is what we do.  We study hair lines, don’t we?

Soon, I learned each woman there was there to learn the same hair secrets I wanted to learn, and I learned we were there for each other.  In fact, by the end of the meet and greet, I was actually asking others, “Is that your bio hair?”  “How much hair have you lost?”  “What has your journey been like?”  “How have you disguised your hair loss?”  “Where DID you get that AMAZING hair.”  Others were asking me the same thing. 

Suddenly, I had a whole new group of friends who knew and understood the journey I had been on.  I could relate to them.  They could relate to me.  We were interested in each other’s stories.  Finally, I was not alone. 

The next morning, the conference finally began.  There was an impressive list of doctors and experts in the field of hair loss listed as speakers.  Always the student, and having attended so many educational conferences during my professional life, I was ready to learn as I entered the conference presentation room armed with my registration packet, a newly purchased composition book, and writing utensils

The first speaker gave an overview of the basics of cicatricial alopecia.  I took few notes, as I already knew the basics:  cicatricial alopecia is a form of hair loss accompanied by scarring.  I knew this.  I was attending the conference to learn more than just the basics about this condition, or so I thought.  Really, deep down inside, I was attending because I was just sure I would find a cure, a solution, something to STOP this dreadful disease from playing havoc with my life, my appearance, and my emotions.  

The speaker giving the overview had my attention, my pen was ready to take notes, but my mind could not seem to accept what I heard her say, “permanent and irreversible.”  I wrote those words down almost against my will.  Even as I knew these words were true, I could not fully accept them as truth.  As she spoke, I found myself thinking: She is a specialist in the area of hair loss, chairman of the board, and she knows all there is to know this awful condition, so how could she start off the entire conference program by saying scarring alopecia is permanent and irreversible? Wasn’t there something she could say that would give me hope?  I didn’t come to the conference to hear that I had a permanent and irreversible condition.  Those words confirmed what I already knew but could not accept.  

In truth, once scarring has taken place where hair once grew, the condition is permanent and irreversible.  The goal is to stop the progress before scarring has occurred.  There was so much unknown about the condition I had that I just could not begin to process it all.  Perhaps, whenever one is diagnosed with a disease that is life altering, it takes time to process what the condition or disease means to the person with the disease.  Words on a screen after doing an internet search that describe a disease or condition or disorder do not convey the full impact that diagnosis has on one’s psyche, nor do those words speak to how difficult it may be to accept and live with a diagnosis.  

Case in point: I attended the CARF Conference two years ago, and I am just now able to write about the impact it had me on my blog.  As a blogger, I had written about my family, the death of my daughter, health issues I had regarding my heart, and about a disastrous fall I had taken which resulted in six months of putting my life on hold, but I could not write about experiencing hair loss.  I had to process much of what I learned for years before I could write in depth about it.  I sank into a pretty deep depression.  I cried.  I hid.  I spent money on wigs, toppers, scarves, headbands, and hats, but I could not write about it all.

When I attended the CARF Conference in 2016, I was sure I would find the perfect treatment option for me so I could stop the devastation that comes from losing one’s hair, and so I could stop the sometimes “severe itching and burning” in the scalp that accompanies this disease.    

I did not find a cure for this disease at the conference.  No one has.  I did not find the silver bullet that would stop my hair loss.  My hair continued to fall out.  Today, much of my scalp is now covered with scar tissue that is permanent and irreversible.  

At some point in my journey, I decided that if I could even find a treatment or solution for the itching and burning that accompanied flares to the scalp that I’d be happy even if the hair continue to fall out.  Somehow, I did finally come to a place where most of the time I do not often suffer from intense pain, burning, or stinging in my scalp.  My scalp rarely feels like it is crawling these days. In fact, my dermatologist recently told me that my scalp is the “quietest” it has been in all the years he has been treating me.  But, I am not cured.  I may finally be in more or less remission, or my disease may have more or less “burned out.”  Only time will tell.  

I do not know what caused me to be at this stage in the physical manifestation of the form or scarring alopecia that I have now apparently entered.  I dabbled in using many of the drugs known to help with the disease, but reactions to the drugs, or unwanted side effects caused me to not use the treatments.  I stopped all medications and treatments except for the rare days when I have flare.  On those days, I apply a small amount of clobetasol solution, or tacrolimus to inflamed area on my scalp. 

When I was diagnosed, my disease was so advanced, and there was so much scarring that really there was little I could do about the condition. I had an advanced case before it was ever treated because I was not diagnosed until I had significant scarring.  Early diagnosis and treatment is thought to give the patient with scarring alopecia a better chance for stopping or at least slowing down the progression of the disease.

Since those early days in my journey into the world of hair loss, I have learned there is more to this journey than just finding the right medical treatment.  This journey involves doing a lot of work in the innermost parts of the mind, the heart, and the emotions.  As I have sought healing for this condition, I have learned healing is an inside job.  I have learned I must heal from the inside out.  

February 2015 My 70th Birthday Wearing a hat which is pulled down to hide my hairline at the beach in Florida.

As I look back on the nearly two years since I attended the CARF Conference, I have to ask myself what I have learned about myself.

• I have learned that my journey with hair loss is similar to the journey of loss that I experienced after the death of my daughter.  Certainly, the loss of one’s hair can never be compared to the loss of a loved one, but the journey itself is one also marked with five to seven stages that have been identified as the stages of grief.
• I’ve learned that my identity is not found in my hair, my appearance, or how I present to the outside world.  Learning this truth, is a gift.  I have more freedom in self-expression now than I had when I had a head covered with hair.  My identity has nothing to do with how I look or how others see me.  
• I have learned that I am resilient.  Resiliency can’t be taught.  Resiliency is only achieved when one goes through loss, trial, or hardship.  Resiliency is also a gift because according the definition to resilience in Mirriam-Webster, it allows one to adjust to and easily accept misfortune or change.  I don’t think that most of us actually easily accept misfortune or life altering change, but I do think that once we learn that we are resilient, we find it much easier to be resilient each time we meet misfortune.
• I’ve learned that the fear of losing most of one’s hair is much worse than actually losing a large portion of one’s hair.  Quite honestly, in those early days after I was diagnosed with FFA, and after I saw the photos of what might happen to my hair, I was consumed by fear.  After the initial shock of the diagnosis, I went into denial.  I told myself I would have a different outcome than the poor women in the photos illustrating FFA which can be found in the literature about this disease, yet when my appearance began to resemble that which I feared most, I no longer was afraid over how I might look.  
• I have learned that as in so many other areas of life, acceptance is the first step in getting on with the hard things in life.  Acceptance itself is a process.  It takes time.  It takes making peace with those things over which we have no control. 

 

My New Wig November 2017

Recently, as I spoke with another hair loss sufferer, we spoke of how we are almost thankful that we have had to have this journey because we have learned so much about ourselves on the journey.  We have learned resilience and authenticity.  We’ve learned to adapt and live life to the fullest anyway.  We’ve learned that reaching out and helping others along the journey gives us joy and enriches our lives.   

I am passionate about being involved in educating others about this disease.  Beauticians and doctors are on the front lines when it comes to being the first to observe what might be happening when a woman first begins to show signs of losing hair, but unfortunately most beauticians and many, far too many, doctors have never seen scarring alopecia and don’t recognize its symptoms.  I consulted the first dermatologist six years before I was diagnosed.  During those six years, I consulted three more dermatologists.  None recognized my disease until I finally insisted on a biopsy.  By that time, I had advanced and significant loss.

I am passionate about research for this disease because I do not want my daughters, my sons, my grandchildren, my nieces or nephews, my cousins, my siblings to have to suffer from this terrible condition.  I don’t want anyone to go through the effects of this disease.  It breaks my heart when I read of each new diagnosis.

I am passionate about providing support for others whom have been diagnosed with scarring alopecia.  I am so very grateful for those whom went before me because of the way they have taken an affliction and turned it into ways to help others.  There are so many of you out there that have led the way for me.  Thank you.

For all these reasons, I intend to write more about the hair loss journey I have been on. I will add my voice to all those others suffering from little known orphan diseases.  Scarring alopecia or cicatricial alopecia is just one of many immune disorders that qualify as orphan diseases. 

This is my disease.  I own it. I will not let it own me.

Girl Friend Party Christmas 2017 Wearing a wig and my favorite boots - a winning combination.

On Being A Mom

I'd always dreamed of being a mom. Always.  Being a mother has brought me more joy than any other experience in my life. I love being a mother.  I guess we all were quite naïve when we entered motherhood.  Perhaps it is best that way.  Looking at what motherhood might cost a mother might have scared me from walking down that path more than half a century ago, but I doubt it.  I think no matter what, I would have chosen to be a mom.

Amy, Keicha, Ryan, Julie, Jonathan

Now, as I look back on my life knowing the pain, the sorrow, the grief, the heartache that being a mother has brought me I still would not change a thing.  Truly, all grief I’ve ever experienced over the death of a child has been tempered by joy and gratitude for being a mother. The journey through motherhood is one I would never want to miss. I would do it all again. 

In fact, sometimes I wish I could go back and live all those days with my children over again. Just one more time, I'd love them ALL under my roof again.  ALL of them.

Julie, Keicha, Mom, Jonathan, Amy, Ryan 2007

 I’d listen to their banter, and laughter, and I'd laugh with them.  Oh how we laugh when we are together. I'd watch them chase each other around the house teasing and taunting and acting like a bunch of pups frolicking in the joy of having spirited, like minded playmates and likely call out, "watch out or one of you is going end up crying." 

The household in which I raised my children was anything but quiet. When the children were small they roller skated and rode their tricycles in the house.  They practiced their high jumping skills by moving the family room couch to the middle of the room so they could run towards it and jump over it.  The result was that Julie in particular could not only jump high and wide enough to clear the couch.  She also learned to stop running quickly before she ran into the fireplace.  Her track coach once told me he loved how wide she jumped when she ran the hurdles event.  “She learned that at home,” I said with a laugh.

Garbage bags or sleeping bags provided were repurposed to slide down the basement stairs.  An old bedframe with only springs and no mattress perched under the apricot trees in the back yard provided a unique trampoline, a place to build forts with blankets, and a place for summer night sleepovers.  My kids were inventive, resourceful, and imaginative when it came to turning found things into just another way to have fun.

If I were together with all my adult children, I'd listen to their informed and insightful conversations that would include very divergent points of view.  I would, and do, rest assured that no matter how different they all may be from each other, they love and respect each other so much that they will remain a pretty tight group.  They may have their squabbles, but I truly doubt anything could ever destroy the bond they have with each other.

These bonds and this devotion to each other was hard won.  Even though the early years of my children’s lives together were spent establishing and creating childhood bonds with me and with each other, our family was split many years ago by a judge in Utah. 

It happened when my children’s father and I went through a divorce.  My five children ranged in age from fifteen to five.  In those days, custody of the children was not an issue in most divorces.  In the case of my divorce, custody was not even discussed.  As a stay at home mom, I was the major caretaker.  In fact, at the time of the divorce, I didn’t even have a job.  The home in Utah was awarded to me, and so was the custody of the children.

A year after the divorce, I decided, after much urging from my parents, to find a job in Colorado. I had no restrictions on the custody I had been awarded, and the children only occasionally saw their father, so I proceeded with my plans to rent out my home in Utah and move my children with me to Colorado.  Once their father learned what was happening, on a day when visitation rights were to be established for him, he instead surprised the court by filing for custody of all five children.

After a hearing, the judge could see no reason why I should not maintain custody.  He then did a very interesting thing. He asked my thirteen-year-old daughter and my fifteen-year-old son what they wanted to do.  Both said they wanted to stay with their father so they could stay with their friends.  Probably most teens would have said the same thing.

And so, the trajectory of our family was irrevocably changed.  After that fateful day in court, my two oldest children remained in Utah with their father while I flew home in a state of shock and devastation with my three youngest children.

Through absolutely no fault of my own, I lost children legally before I was finished raising them, loving them, and being with them as a mother should be with her children.

Being a mom has brought me some of the greatest emotional pain in my life.  I am not the only one who suffered because of this legal decision.  My children, every single one of them, also suffered immeasurably from this judge’s decree.

In the years when our family was divided down the middle with two children living with their father and three children living with their mom, so much was lost.  I think of all the time I lost where I could have been involved in those teenage years with my two oldest children and my heart nearly breaks.  I wasn’t there to watch over their schooling, their choice of friends, the way the spent their time, or the choices they made.  I didn’t get to make or help pick out prom dresses, or even a wedding dress, for my daughter.  I wasn’t there to advise, console, comfort, or admonish when two teens needed a mom in daily attendance.  So much was lost.  One never gets back time once it is gone.

My younger children also lost all those times they could have spent with their older siblings.  One never gets back the occasion once it has occurred.

To that judge in Utah that ruled to split my family down the middle, I would like to say, "You, with all of your legal power, hurt my family more than you will ever know.”

I wonder if he ever again wondered about the welfare of our family as a whole, or of each child as an individual.  I wonder if he ever even thought of us again.  Did he really consider the financial, the emotional, and the spiritual costs that his decision would place upon all of us?  Did his decision ever wake him up at night?  Did he spend sleepless nights wondering how to restore all that was lost by his decision?

When faced with making, as my daughter has said, a decision worthy of the wisdom of Solomon, this judge abandoned his responsibility and asked two minor children to decide their own custody arrangements.  These children were not old enough to vote.  They couldn't be licensed to drive.  Under law, they still had to go to school, but this judge left a decision, that they could never have had the skills to make in their hands.  I would say to this judge all these years later, “You did great harm to them and to all of us.  The legal system failed my family dreadfully, and each of us paid the price."

All those years ago, when my family was shattered and broken into two distinct pieces, I wondered how all the problems that were created for all of us as a whole and for each individual would be resolved.  It was ordered that all the children spend as much time together as they could.  The order seemed to place precedence over the children visiting each other over the children visiting with the parents.  Or so it seems to me now.  Perhaps, what really evolved from the situation was that the children spent more time all together with their father in Utah then they spent individually or collectively with me.

As a single mom, I had to work to provide for my children.  My earning capabilities were severely limited due to a lack of education and a lack of experience.  I worked as a very poorly paid secretary school secretary.   The irony was that while I had spring breaks and summer breaks off, I did not end up having those times with my children because their father, a teacher, was also off of work and the two teenage children were by that time beginning to work.  They seldom were able to come to visit me or spend time with me.  The three younger children spent every summer with their father and siblings.  Spring and winter breaks were also nearly always spent with their father.

Practicality was not the only deciding factor that led to the visitation arrangement that developed.  In my heart I had determined that I wanted my children to spend as much time together as siblings as they could.  The relationships they forged with each other was of great importance to me.  I wanted them all to experience and create a sense of family that would surpass the limitations that time, money, and a legal decision had placed on the family unit.

Early bonds are not easily broken when they are carefully established.  My children and I have endured as a family.  We love being together.  Each family gathering is a cause to celebrate each other and the family we are.

The law has great power, but it can never have the power that love has.  Love wins.  It always wins.

My children have lost a sibling and I have lost a child to death.  That loss was another loss that was painfully woven into the fabric of our family.  As a family, we experienced much of the sorrow, the shock, the pain, the grief that came from the death of our dear Julie together, or by sharing our grief with each other.  This experience gave us another thread that has sewn our family together into a beautiful covering to provide mutual love and healing for us as a family and as individuals.   

 

Ryan, Keicha, Amy, Jonathan 2016

Death is often seen as the ultimate show of power, but death cannot destroy love either.  Again, love wins.  Love always wins.

When I think back to those years when I dreamed of being a mother, I wonder what I thought being a mother would look like.  When I brought my first born home from the hospital, did I have any idea of all that being a mother would bring to me?  If I had, would I have had children?

The answer to the first question is: No.  I had no idea what being a mother would mean when it came to how I lived out my life. None of us ever do.  The answer to the second question is:  Yes!  I would not have wanted to miss out on being a mother.  I love being a mom.

Somehow, my children navigated those teenage years and became successful adults.  They are pretty amazing as far as I’m concerned.  There are no other adults I enjoy hanging out with as much as I enjoy my children. 

I have been blessed beyond measure by each of the lives of my beautiful, bright, articulate, funny, complex, and thoroughly delightful five children.  Knowing the pain, the sorrow, the grief, the heartache that being a mother has brought me would not change a thing.  I’d do it all again.  I’d do it and savor every single minute of it.  Thank you Ryan, Keicha, Amy, Julie and Jonathan for being my children.  Thanks for letting me be your mom.  XO

Name It. Sit With It. Grieve It.

Name it.

Sit with it.

Grieve it.

Yesterday these wise words were spoken to me by one who has helped me on my journey through grief.  Knowing that today marked the fourth anniversary of my daughter's death, these words were spoken to me after this wise woman inquired how I was doing on what she knew was a very difficult holiday weekend for me.

"I've been so busy living, and celebrating life's happy milestones this past month that I've actually been doing quite well." I replied.

I then related how I had resolved that I would not let grief interfere with living this spring.

I resolved that I would fully and mindfully participate in the many life celebrations occurring in our family during the month of May.

And so,

I've been doing that.

I've been so busy living, loving, and spending time

with my children and grandchildren that I've not even taken time to blog,

write in my journal, or keep up with friends for lunch or coffee.

Yes, I've been celebrating

the living,

and life.

To my friend, I acknowledged that from the Friday night of Memorial Day Weekend

until

May 29th, 

I'm never fully sure of what day it is.

She said, "If those feelings of loss come, remember: 

to name them,

sit with them,

grieve them.

  Grieving is such hard work.

After all these years, sometimes I just want a break from processing feelings.

 I resolved that I would "grieve well" after the death of my daughter four years ago today.  

It seems strange and really quite unacceptable to resolve to grieve well,

 and yet, that is what I resolved to do.  

Why?  

Was the resolution one of self preservation?  

Was it made because I had read somewhere that this is what one must do after great loss 

in order to heal?  

Was it because I resolved not to go into denial about a loss that threatened to level me?  

Was it because I knew of no other way to honor the gift my daughter had been to me then to fully acknowledge her death and embrace the memories I have of her as I embrace the pain of losing her?  Embracing the pain allows for the letting go of what no longer is.

Thankfully, my daughter Keicha came to spend this week with me. We've had such fun.We've had very special mother/daughter times this week.Yesterday, she went to spend the day with her sister Amy and with Julie's boyfriend Jason.

Before I was out of bed today, I had a text from Keicha.  She was at Jason's house spending some time with Phoenix.  Phoenix is Julie's dog.  Phoenix lives with Jason.  Keicha said in her text that Phoenix is so old and so skinny that it makes her cry.  I asked for a photo.  The photo came via text.  That is when the tears started.  They flowed all morning.  I thought I wouldn't cry today.  I thought it would just be another special day with my daughter Keicha, but I was crying.  Why?

Name it:  Phoenix, the rambucous pup, the alpha dog that always overpowered our dog Buster, is now barely able to get up.  He is getting old.  He is one of the last tangible reminders of days with Julie that belong uniquely with Julie.  Julie loved Phoenix.  She got him as a pup, and he was always a handful for her.  He was also an expense because he had ACL problems and hip problems and at one time she almost lost him to an episode of twisted stomach.  Phoenix is the one who was by her side when she left us.  Phoenix was her loyal companion.  She never married.  She never had children.  She had Phoenix.  Seeing how much Phoenix has aged since Julie died reminds me how much time has gone by since she was with us.  Seeing a photo of Phoenix just brings up way too many memories of Julie to not make me cry.  Julie is now ageless.  She belongs to the ages. In our memories, she remains 34 years old. Phoenix was left behind to age and grow old just as the rest of us were.

Julie and Phoenix April 2010

Julie and Phoenix April 2010

*These two photos above, were among the last I ever took of Julie.  I took them the last time I saw her alive.

Sit with it:  I've learned from many sources that while many may think that people who are suffering great loss may think that they must just push through it and carry on, in reality, it is really necessary to  take time to sit with one's grief in order to heal.  Some call this "soul work."  One must be willing to mentally and spiritually visit some dark, lonely, and confusing places that threaten to overwhelm the emotions when sitting with grief and letting it wash over one's physical and spiritual being.  One must trust that healing will come.  Some fear that if they start crying, they might never be able to stop.  In reality, no one ever cried forever and ever.  I sometimes suddenly find myself sobbing over a remembrance, but once I've expressed the emotion I am feeling, I am ready to move on with my day.  I feel better.  I am grateful for the memory that brought the acknowledgement of the treasure I have lost.  I am then able to see other blessings that surround me.

Grieve it:  Julie was one of the great treasure of my life.  Losing her brought what C.S. Lewis and others have called "the dark night of the soul."  It is in the dark night that one learns that one truly has a soul.  In this dark night of the soul, I discovered more truth about life, and love, and faith than I learned in any other experience.  I am grateful for others who have also grieved deeply who have shown me the way to walk through this valley.  I learned I must deal with my grief or it would deal with me.

And so today, I've taken the time to let grief wash over me.  I've also celebrated the life that was given to me for 34 short years.  I hold Julie's memory in a special place in my heart.  I grieve her, my sweet Jules.  It was her strong, beautiful, intelligent, funny, spirit that once brought such great joy and richness to my life. Her depression and illness also brought me great worry and pain.  I grieve over the pain that she suffered in her life.  I wish she could have known healing and peace in this life.

 In my stillness today, I allow grief to wash over me.  I would never deny my soul the need to grieve the loss of the treasure that was my beautiful Julie.

Valentine's Day Reflections on Love and Loss

A Reflection on Love and Loss

So many words will be spoken about love today.

Some will be forgotten by tomorrow.

Flowers will be sent.

Candy will be received.

Cards will be picked out that the sender hopes will send just the right message.

Love is in the air,

or so it seems.

I would not describe myself as a romantic.

Generally, I don't read romance novels.

In fact, if the truth be told,  romance novels grate on my nerves.

I do love to read great love stories.

I like love stories that read like real life.

I like stories that tell how love survives no matter what life throws at it.
Or I like stories where the love may not survive,
but the person survives the loss of love and thrives after that loss.

I guess I'm too realistic to be a romantic.

I've learned real love outlasts dazzling romance.

When my husband and I married, 

I had a song sung at our wedding by Michael Card.  

The lyrics to the song are taken from the Song of Solomon.

"Arise, My Love"

I love the words of this song because they speak truth.

They speak of a love that honors the loved one.

The song speaks of seeking that the love one has for the other be sealed on the loved one's heart.

Set me like a seal on your heart,
For love is unyielding as the grave.
The flash of it is a jealous fire,
No flood can quench,
For love is as strong as death.

Even though we were "older when we married,
we had not idea what life would bring us when we married.
 No one does.

Jim and Sally 1992

Since those early days of marriage, we've aged.

We've been through good times, very good times.
We've been through rough times,  very rough times,

Today, more than twenty years after our marriage, I rejoice that I can say

My beloved is mine, and I am his.

Song of Solomon 2:16 NKJV

Jim and Sally 2013

Our's is a romantic story, but it is also a story of faithfulness in times of trial and loss.
It is about two people who deeply love and respect each other.
It is about two people who are as different from one another as any two can be.
It is a story about how differences between two people give strength to the relationship.
Where I am weak, he is strong.
And, the vice versa is also true.
Our's is a story of how the relationship between two people created a great team.
It is a story of deep companionship.
I have learned a lot about love from this man that I married.

Loss has also taught me much about love.
The biggest lesson of all is:

Love does not die.

As I look at this photo that Julie took of Phoenix on her last Valentine's Day on this earth,
I am overcome with grief in many ways.
(I also apologize to her siblings if this photo causes them too much pain when they see this.)
Certainly, I am so overwhelmed with a sense of loss today that tears have been silently falling from my eyes nearly all morning.
News that a friend of Julie's just learned of her death just sent all of us back into new waves of grief.

Grief is like that.
It assaults you, the griever, when you least need or want its presence in your life.
Today, my bereavement feels as fresh as newly fallen snow.
Bereavement ~ to be torn apart.

I mourn anew.
…mourning is the outward expression of grief.

So what am I to learn about love  on this day dedicated to love?

I've learned that I am shifting and moving to a new place.
I am moving from the relationship of the presence of my dearly loved daughter being in my daily life
to
the place where
I have a deeper relationship with the memory of her.

I see the photo above and I smile.
I remember an exchange with her about the photo and the heart that she claimed Phoenix drew for her in the snow.

I am learning that my love for her has only gotten stronger as time passes.

The loved one lives on in the heart of the one who loved him or her so deeply.
For me, my love for my daughter is always fresh and new.

Not all memories of her are happy.
Sometimes, the memories are filled with anger, pain, and deep sorrow.
Other memories make me laugh.
Some memories of her fill me with so much pride.
Memory honors the loved one best when it remembers them as they really were.

The memories of Julie are sharp at times, and blurred at other times.

I no longer focus on the death of my daughter as much I remember her life.
This is a healing place to be.

Silly picture of Julie making faces with Phoenix

I feel blessed because Julie was so deeply loved by so many.
She had so many friends.
They continue to love her.
The memory of her has not died.

Oh, how I wish she were still here making memories with us,
but, she is not.

She remains safely sealed with  love in my heart.
Love is stronger than death.

Love remains.

The Vicissitudes of Life Encapsulated in One Day

At times during the day, I've been at loose ends.

I flitted from one attention grabber to another.

I couldn't settle on one activity because another would call my name.

I was distracted.

At one moment, I have been sad, crying, and in mourning.

During the next, I would find myself rejoicing over the beauty of the day.

I couldn't settle on reading a book.

Couldn't seem to pick up my journal and begin to write even as thoughts tumbled through my mind.

I don't want to eat dinner,

yet I am searching for a snack.

I don't want to talk to anyone,

even as I long for a good conversation.

I want to be alone.

No, I really think I want companionship.

I have many tasks that need to be completed.

My desk if piled high with papers and books to be sorted through.

I don't think I even made my bed today.

Did I?

I don't know.  

Does it matter?

It is nearly time to go to bed again.

I've been tired,

but heaven knows I could never settle down to go to sleep.

Do you ever have days like that?

Today, 8.08 began at 8:08 A.M.

when I finally awakened enough to look at the clock.

Damn digital clocks.

Even they send reminders of Julie.

Julie,

as the story goes,

once said her ideal man was BOB.  

Digital watches were the new "in" thing when she was in high school.

8:08, meaning BOB, became a symbol of Julie's life.

Memories of her began to flood my mind.

I wasn't alone.

Many of us were reminded of her today.

In my memory

I vividly saw her twirling her hair around her slender fingers.

I saw her showing the grandchildren how to hula hoop.

I've been missing her so much lately.

I've needed her humor, her silliness, her kindness, her take on life that could be wise.

Julie, Amy, and Mom

I grieved because I can't be her to her sister Amy.

I know Amy needs her in her life so much at this time.

I called Amy to tell her that I wish I could be her sister to her,

but of course, I can't be.

Only Julie could be Julie to Amy.

Only, Julie could be Julie to any of us.

She was our family lynchpin.

She is gone.

What will hold us all together?

Grief no longer incapacitates me.

Or does it?

I went on with my day.

I had lunch with my sister.

I made tea for my husband and served him tea and cake on the porch.

This evening,

the two of us,

my dear husband and I,

took a walk in the neighborhood.

The air was crisp and cool, reminding us of an early fall day in the mountains.

We followed a beautiful buck in velvet who was just ten feet ahead of us on the path.

Peace and beauty filled my soul.

It was a good reminder that:

Life is full of vicissitudes.

And yes, there are days when those vicissitudes are encapsulated all in one day.

Thankfully, at the end of this day, I could agree with a quote from Jerry Sittser's book on grief.

I had experienced the ups and downs that come when one continues to grieve.

I could also honestly say, 

I was struck by how wonderful ordinary life is.

Simply being alive became holy to me.

~ Jerry Sittser

A Grace Disguised:   How the Soul Grows Through Loss

Unpredictable Seasons

In life

much is unknown.

I once thought I would navigate only smooth waters through life.

Now, why would a mountain girl think that she would sail through life?

I know nothing about the water.

I didn't grow up around it.

I know the mountains.

I know the seasons in Colorado.

I know that mountains can be tough to scale.

 I know that at any time a storm can blow in over the mountain bringing rain, sleet, and snow,

all in one day,

no matter what date is on the calendar.

Pikes Peak from Garden of the Gods
April 21, 2013

Early in my life, before I went to school, I would step outside to look at my beloved mountain,
this very mountain, Pikes Peak, that lived at the end of my street,
to see if I needed to wear a coat to school.
Silly me.
In the morning, I might have seen blue skies behind this peak,
and so I skipped off to school without a coat.
By afternoon, I walked home shivering in the snow I had not seen coming.

Living in the mountains makes you tough.
The air is rarified.
There is not as much of it up here in my neighborhood.
Living in the mountains has taught me that one is not in control of the seasons.

This season of my life has not been an easy one.
Certainly, I never could have expected that when I turned 65,

Celebrating my 65th Birthday

a day I had long looked forward to, (that was because I would no longer have to COBRA my insurance.), that my life would turn upside down just three months later when I lost my dear daughter.

Since that time,
I've needed all the lessons I ever learned in life to take me through this season of grief.
I've learned that grief, like the weather, is very unpredictable.
I've learned that it can make you question everything you ever believed about
life,
faith,
hope,
love,
and
God.

I've learned that you find out who your friends are.
And, I've found out that I have many.
From my friends, the true ones, the ones who have prayed for me,
walked with me, cried with me, and laughed with me,
I've learned what true
compassion,
kindness,
sympathy,
and mercy look like.

I've experienced the grace of God in ways I could never have known if I had not suffered such great loss.

Loss has taught me that
life is precious
and I hope to live it victoriously.

Loss has taught me that faith is the only thing that gets me through the day,
and the only way I will live victoriously is by faith.

I've learned that while there is life, there is hope, but mostly, I learned that
as Rick Warren recently Tweeted,
Optimism is psychological.
Hope is theological.

I've learned that love means a whole lot more than I ever thought it did.
I've learned that I love my children, all of them, more than life itself.

Keicha, Jon, Julie, Mom, Amy, Ryan Jim's Retirement 2007

I've learned that I never would have made it through these last three years without the love of one person.  That person is the man I married.
He has carried me through it all.

The love of my life

This journey has take a toll on my dear husband,
but he is faithful,
and kind,
and loving.
Thankfully, he has his best friend, the other one besides me,
to one who never asks for anything,
the one who never gets bogged down by grief, loss, sadness, or illness,
to comfort him and bring a smile to his face.

Jim & Boston His buddy and best friend

And so, in this season of life,
the one we thought would be filled with retirement dreams,
my dear husband and I are experiencing day by day struggles with illness, pain, all those other physical side effects of aging.

The seasons of life are unpredictable.
That is certain.
Since one can never really predict the weather, or the aches and pains of aging,
on good days,
we take off to enjoy the beauty of nature around us.

Jim & Boston walking in the Garden of the Gods

The skies are sometimes threatening, and cloudy, but that does not keep us home.
We are blessed to have such great beauty just several miles from our home.
We've learned that you can't wait for the perfect season, or the perfect day, one must enjoy each day as it comes and give thanks for it.

As a native born mountain girl,
I am taking the lessons I've learned about the seasons to heart.
Spring does not always come when the calendar says it should.
On the 30th of April, we had blue skies, and warm sunny weather for our walk in the neighborhood.

On May 1, I ventured out on the deck to take a photo of our bird bath covered in snow.

One just never knows what to expect from one day to the next with the weather in Colorado!

I am optimistic about the weather.  That is a psychological term that I am applying to the coming days.
I know we will soon have blue skies, and sunny, warm days.

I have hope for the future.
I know I can't predict the future any more than I can predict the weather.
But I have hope.
I have hope because I know who holds my future.
He is the very same One who has held me through all the seasons of my life. 

A Year Later ~ A Remembrance Service

Today while I was shopping for flowers, someone I didn't know asked me if I had attended any of the commemorative services held at the local cemeteries this past weekend.  At first, I was quite taken back by the question, not because the woman wasn't being friendly, but because I had held a memorial service for my own daughter on Saturday, May 28th.  Instead of telling this kind woman that I had made two trips to the cemetery in the past week, one for a service and then a return trip to actually bury my daughter's ashes, I just said, "No, I didn't attend any of the public services."

A year ago when Julie died, a number of factors prevented us from actually holding a burial service.  We decided that we would hold a service a year later in Colorado Springs where she would be buried.

It has been a very difficult time for me over the past few weeks as I have questioned my wisdom about waiting a year to actually commit my daughter's earthly remains back to the earth.  I have been torn to pieces inside as I sometimes felt I was reopening a wound that had just begun to heal.  Despite these feelings, fears, and questions, deep in my spirit, I knew it was time for me to take her urn out of my study where it had been for a year, gather loved ones around me, and place her remains in the earth.

Thursday of last week, my oldest daughter and her daughter flew into Denver from Utah.  The next day, my oldest son and his daughter flew in from Utah.  My youngest son was unable to come from the Boston area.  We gathered, surrounded by close friends and family members, at the cemetery on Saturday afternoon to remember our dear beloved Julie and to try to bring another measure of healing into our lives.

My son Ryan 

My daughter Keicha

It was a beautiful, touching service that only lasted about 30 minutes.  We had a box near the grave site where those who wished to do so could leave a letter to Julie.  These letters were then buried with her urn.  We listened to a few remembrances of a beautiful, dearly loved woman who left us too soon and in a way that broke our hearts.  We were blessed to have a few words of scripture read to us by a kind and compassionate pastor.  Our hearts were then deeply touched by the words sung by Sarah Woods in the song which she wrote when she was only fourteen years old entitled "Little Red Balloon."  We then held a balloon release.

My granddaughter Hannah

Sarah Wood singing, "My Little Red Balloon"

After the service, we all gathered for lunch at my niece's home in Colorado Springs.

My niece Cristy

Another milestone has been reached by my family.  Each of us has been on an individual journey, but the time we had together this weekend was precious.   We  have been greatly blessed by such supportive friends and family.  I am strengthened and encouraged by those who have stood beside me and my family this past year.

Now that this past weekend is behind me, I'm glad we chose to have this simple service.  Grief is a process.  We are all at a different place than we were a year ago.  We are no longer numb with shock and disbelief.  Yes, it was painful to go through this past weekend, but it was also very healing in some ways.

Release is an important step that I had to take in my journey toward healing.  As I placed my darling daughter's earthly remains in the earth, I was reminded that we all subjected to the law of ashes to ashes,  dust to dust.  I am also able to lift my eyes to heaven and continue to believe that she is now, and always has been, in the hands of a loving God.

Never the Same Again

"There is that phrase again," I said to myself this morning as I watched Al Roker interview a survivor of  the devastating, destructive tornado that ripped through Joplin, Missouri this past weekend.  The man had just witnessed his hometown ripped to pieces in moments.  He was searching for his neighbor.   Everything he owned was gone.  All he could say was, "It will never again be the same."

How I have fought against that phrase.  I have refused to believe it.  In fact, one of the first thoughts that came to my mind after my daughter's death was hearing a dear friend tell me that her mother was never the same after her sister's death.  "I will not be that person," I said to myself.  I will not change.  I will continue to be who I am.


Now, a year later, a year after the black line that went down the record of my life clearly dividing my life into two parts, I know that it is not possible to be as one was before a devastating, shocking, unspeaking loss.  I am changed.  I am not the same.  Sometimes, I don't even know who I was before.  Jerry Sittser  in A Grace Disguised:  How the Soul Grows through Loss, writes, "Catastrophic loss is like undergoing an amputation of our identity."

One may hope to remain the same after such loss.  I now believe this is not possible.  One's life has forever been altered.  When that happens, one changes.  In the past year, I have made peace with this truth.  Sittser tells the grieving soul that catastrophic loss is to be compared to a massive flood that is "unrelenting, unforgiving, and uncontrollable, brutally erosive to body, mind and spirit."  One cannot survive such a flood and come through to the other side without being changed.

In the end, I am thankful I will never again be same.  I would not have chosen this path for my life, for my children, or my grandchildren.  I would have done anything to stop the horrific loss that we suffered one year ago.  There will always be a hole in my heart, a gap in our family circle, a missing link, a link that brought so much joy, laughter, and delight.  Why did I think that I would not change?  How could a mother lose a child and not be left bereft?

A day of celebration for me and Julie when she earned her hard earned BA in English.   

"Recovery is a misleading or empty expectation.  We recover from broken limbs, not amputations.  Catastrophic loss by definition precludes recovery. It will transform us or destroy us, but it will never leave us the same."  Even as I read these words of Sittser's last summer, I was repulsed by the thought as I wrote in my journal, "There it is again.  We are never the same"  Now, I see that I had a choice.  I choose to submit to transformation.  I have chosen that course.  I refuse to be destroyed.

I have been changed.  It has been a transformation.  I am learning why loss can be 'a grace disguised.'  Yes, despite the hole that will never really heal, and despite an amputation to my family, to my life, to our futures, I am learning that the soul grows through loss.  For that, I am grateful.  I would not have wanted to remained the same after such loss and not learned this truth.

After A While

April is National Poetry Month.  I am dedicating this poem to my beautiful daughters who have had suffered so much loss this past year.  They are strong women who are dealing with much besides the loss of their dearly beloved sister.  This poem speaks to me about them and all they are learning.

Keicha, Julie, Amy April, 2010

After A While You Learn

By Veronica A. Shoffstall

After a while you learn
The subtle difference between
Holding a hand and chaining a soul
And you learn that love doesn’t mean leaning
And company doesn’t always mean security.
And you begin to learn
That kisses aren’t contracts
And presents aren’t promises
And you begin to accept your defeats
With your head up and your eyes ahead
With the grace of a woman
Not the grief of a child
And you learn
To build all your roads on today
Because tomorrow’s ground is
Too uncertain for plans
And futures have a way
Of falling down in mid- flight
After a while you learn
That even sunshine burns if you get too much
So you plant your own garden
And decorate your own soul
Instead of waiting
For someone to bring you flowers
And you learn
That you really can endure
That you are really strong
And you really do have worth
And you learn and you learn
With every good bye you learn.

Julie's Tree

Planted Summer 2010

First bloomed 

April 8, 2011

On what would have been Julie's 35th Birthday

Small Mementos

The time spent in my classroom teaching international students is truly priceless.  No price tag can be attached to the healing that I experience as I teach.  Even when I am teaching grammar, I am happy.  I get excited teaching such topics as the one we covered today:  past progressive.  I'm in my element when I do this.  I explain.  I draw charts to show the concept.  I give examples.  I ask for the students to give examples.  I wear myself out.  It feels good to teach again.

When I am teaching, I laugh a lot.  I listen to my students making their first few sentences in a classroom that is taught in a language that is not their first language.  I learn about their cultures.  I learn about each student as an individual.  I see growth.  I experience healing.

My mind is not on my loss.  My heart does not feel quite as broken.  I see the future that is in my students' eyes.  I am a part of something that is bigger than I and my sorrows.  It does feel good to teach again.

On a day like today, I leave my classroom feeling upbeat and happy.   I walk across campus to my car grateful for times of peace, joy, and accomplishment .  Our class had just had a small Valentine's Day Party.  As I walk to car,  I see a young mother approaching me.  She has her darling sleeping daughter in her arms.  The young toddler is dressed so cute in a little hat, coat and boots.  I wonder if she can even walk in those cute boots.  She seems so small.  Suddenly, I find I am weeping.  Babies still do that to me.

I think of my darling Julie.  I see her in her dressed in her cute little pink coat and her Raggedy Ann hat.  I see her impish little smile.  I think of how many nights I walked the floor with her because of her persistent earaches as a toddler.  I remember her finally falling asleep in my arms only to wake when I put her down because of the pain in her ears.  I remember what a sweet baby and child she was.  How could I have ever imagined that one day she would take her life.   She was a such a sweet, fun-filled, vibrant, loving child. I want to go back to those days when I could hold her in my arms and make whatever was bothering her all better.  I want to hold her.  I want to carry her.  I want to have her curly head tucked on my shoulder.

After the wave of sorrow washed over me today, I came home and made a hot cup of tea.  I drank the warm comforting brew from a tea cup that Julie gave me a number of years back.  I have not been able to use that cup since her death.  I have been afraid that I would somehow break it.

I've always loved that cup.  Julie knew that I like to drink my tea from china mugs.  She found the perfect one for me.  I always think of her when I use it.  After losing her, I just couldn't risk losing the cup that I loved using.  It is the special tea cup that she had picked out just for me.  Today, I knew I had to use this small memento.  It seemed that the only comforting thing I could do was drink some hot tea from the cup that had been a gift from Julie.

I brought the tea up to my study, settled into my favorite chair, and sipped the tea.  I looked at the rainbow rock that has always been on my reading table.  Julie painted the rock when she was about four or five years old.  She would paint rocks and try to sell them to the neighbors.  She gave her rainbow rock to me.  It has been one of my favorite treasures ever since.  It has always kept its place of honor beside my favorite chair that I have used for reading.  My Julie rock painted with rainbow colors always makes me smile.

My favorite family photos, books and keepsakes are found in my study.  That is where I also have my favorite chair.  This place is the place where I go for relaxation, reading, and reflection.

Julie smiles at me from the photo made on Amy's wedding day.  She smiles at me again from the photo of her, Amy and me that was taken just before a Christmas season parade in Lafayette, Colorado a number of years back.

I then looked at one of Julie's small wallet sized senior pictures.  The photo shows my dear eighteen year old Julie.  She looks so happy.  The truth is, by then she was already suffering from depression.  Usually she was the life of the party.  She had loads of friends who adored her.  She was successful in school.  She ran track and cross country.  She also was just beginning the long, difficult struggle with a disease that would haunt her until her death.

Not long after Julie's death, I decided to reframe this particular photo, one of several that were her senior pictures.  The old frame had become tarnished.  I found a frame that I thought the photo would fit.  It had hearts on it.  The photo was just a bit bigger than the frame, so I trimmed a small amount from each side.  That is when I noticed writing.  Quickly, I turned the photo over and realized she had written on the back.   She had written:

Mom,

This is one to show my happiness & I would like you

to show it to me when I'm down

to show me that a smile

lights the world.

Even though you make me feel better just being around.

Love,

Julie

Thankfully, I have these small mementos.  I can pick them up and remember the beautiful child that gave them to me.  I won't ever have new photos of Julie.  I won't ever receive another card with her sweet message written inside.  I won't ever be able to make it all better for her like I tried to do for so long.   I won't ever see that smile again, but I promise you, that beautiful smile did light up my world. 

All I have now, are those mementos, many photos, lots of cards, and my precious memories.