It Never Ends, Until it Does

I cannot believe many things today.

I cannot believe I have not written in two years.

I cannot believe Hayley has been gone 7 years. She should be 26.

I cannot believe it is July 11th.

I cannot believe I feel the same level of suffering for these dates as I did last year.

I cannot believe I am not better.

I just cannot believe.

In July 2022 I had picked up the blog again right after the trial ended. I was finally free to write again. I could tell her story. All of it. I don’t remember why I stopped. But there is a “Part 4” in the draft section that I will complete. Just not tonight. If you asked me how long it has been since I wrote, I would have guessed maybe a year. Certainly not two years. I didn’t know until I opened this page. Everything is different than 2 years ago. Different but exactly the same. I see in my last July 2022 post the Night Terrors were a thing. Guess what? Medication helped with that. I stopped taking the Prazosin. Yet in the last month, the night terrors are back. Is June always going to trigger them? Will it be like this forever?

Last week I woke up to my husband saying “STOP SCREAMING”. I woke up still one foot in the dream and one foot out. I expected that he would give me a hug, a pat on the back, maybe ask if I was ok. Nope. He rolled over and went back to sleep. He did nothing wrong. I had the wrong expectations. The two dogs didn’t even wake up. Had hearing me scream in my sleep become such a part of my sleep routine that nobody was phased. Not even the dogs? My Mom was in the guest room visiting. I wondered if she had heard me. She didn’t, she refuses to admit her hearing may be going. But I am glad she didn’t hear me, she has not slept well for so long. Last year her husband died.

Sleep has been an issue for me since April 1998 when Hayley Storm was born and ruined sleep for me forever. Most babies do. But she was extra good at it. She was an amazing breast feeder. I knew I was lucky, not everyone has a good or easy experience. I swear my left breast could feed an entire town of babies. When my husband stayed home with her for 12 weeks, she refused to take a bottle. Like refused. She did not eat when I was at work. He tried every nipple, every bottle, wore my clothes, tried to hold her different ways. If it was not me it was not happening. She would then cluster feed all night long. We were exhausted. I think it was the last 3 weeks of his leave that she finally gave in. But I was still her pacifier all night long. Everyone said to let her get hungry enough and she will do the bottle. We refused. She had us trained immediately to continue to do everything to make her happy for the rest of her life. My son, he weaned his chubby self at six months. Hayley was 4 and an excellent sleeper and he just wanted to sleep near us. But sleep just got harder for me when I had two gorgeous and amazing little humans to worry about and to take care of.

The nightmares are always different. I never have the same one twice. But it is always the same feeling of not being able to find someone or something. I can’t stop something from happening. The dreams are always complicated. They are always about lack of control and always terrifying. When I say I wake up screaming. It is not a scream, it is always yelling a word or a phrase. One morning last week I had moved to the couch, hoping a change of scenery would make a difference. It didn’t; I just had round two and woke up yelling “Help Me” in the late morning. I felt guilty like I had yelled “fire” in a crowded place. Our main floor at our home on the Coast is a Beach Town and the crushed shell sidewalk is right on the other side of the porch which is right on the other side of the window where the couch sits. I honestly didn’t care if someone had heard me, but I was thankful to not have to explain that on the porch. This time the dogs did notice but probably because I had missed their breakfast time.

I don’t know where to start. Except to start sharing. Between now and August 2022 I have split my time between our original home and a home at the Coast. Close enough to hear the Ocean. If home is where we raised the kids then the Coast is where I feel closer to Hayley. My Ocean Loving Girl. It has been a difficult two years. It just felt like it was always something. After the trial, I assaulted a man in an airport. We built our beach house. We remodeled our home not to erase memories but to refresh the space. It was brutal having to remove everything from the house. Most of it is still in bins in a storage unit. I was in no condition to make decisions on Hayley’s belongings. I have stopped finding her mismatched KBell socks. That makes me sad.

I lashed out at the world, fought battles that did not need to be fought, was taken advantage of (people are greedy) and made new friends to replace the ones that ended their journey with me when Hayley died. It is just how I am built. I was diagnosed with an auto immune disease. That is not uncommon after a traumatic event. I developed a new heart arrhythmia. I unknowingly went through menopause and a hyper thyroid.

I am more aware of other’s pain around me. Hayley’s death has hurt so many. The anger is so real. I imagine what I would do if the people that caused her death were in the same room as me. The consequences of their actions has made ripples that have impacted so many others than just me. I often wonder when I will run into one of them. It is a small world. I wonder if I am ever in the same space as one of the Jurors from the trial. The trial that we regret. The trial that caused a new level of PTSD. The trial that they got so wrong. I hope that the Jurors never find out how wrong they got it. That the lawyers manipulated them. They flat out lied. They dragged us through a slow five week walk through hell. I don’t want them to know. If they did, they would just be another victim of this tragedy. Knowing would accomplish nothing.

I found a counselor this year that I love. I don’t always like what she has to say but I trust her. Grief counseling that I tried in the past was a bust. I thought it was my fault. I wasn’t ready for it. But it was because I had not found the right person. Seeking counseling this year has been the best thing for me. I don’t know what my story will look like this year, but for now it is better than last week, it is better than last month, it is better than last year. Don’t get me wrong it is Brutal with a capital B. It leaves you raw, angry and sad. Making the weekly commitment establishes a schedule that feels a bit like I have control over my life. I wish insurance made annual counseling as important as getting your blood pressure checked. It should be a thing. Without some degree of mental health, physical health is losses on us. Stress kills.

Last year we lost two of the three dogs that Hayley left behind including her baby, “Zoey”. It was traumatic and not the ideal way to have it happen. I still forget it happened and expect that they are at the house I am not at. One of her childhood dogs is still sticking by me in addition to the Golden Retriever that “tricked” us into bringing him home 7 years ago. They are a good reason to get out of bed each morning. Charlie at 14 and not being part of a larger pack now has allowed him to step up. The littles were definitely the boss of everyone. He has always been a good dog. He was just always overshadowed by the bossy littles. He has depths of empathy that were always there but now will be sorely missed when he is gone. They are a part of our family. I will be forever thankful to be able to afford to have them in my life.

I have seen the worst and the best of people in the last two years. Unfortunately the worst are the ones that stand out and stick with you longer than the best ones. I hope that by the end of 2024 I may actually be able to learn to control my need to fix people. No matter how many times my efforts go wrong, sometimes oh so wrong, I still truly believe that I can and should fix everyone else. The problem with that is I don’t fix myself. It is not because I think I don’t need to be fixed, it is because working on yourself is difficult and painful. It is easier to help others.

There is a reason they label a stage of Grief “Denial”. Denial is my friend. It does not necessarily look like I thought it would at the beginning of this path. I thought it meant you would truly deny that your child was dead. But it is not like that. It is standing still. If I don’t move, if I don’t talk, if I just deny it, the pain is tolerable. It is survival. Everyone has some kind of trauma. It is not a contest. I had found myself completely sad and angry hearing someone complain about their child. I think, well they are not dead so there is that. I have softened. I can tolerate this now, even participate in the conversation. I don’t get a trophy for this. There is no #1 MOM mug for this. It is not a contest.

Gratitude is not my thing. I think it is a trendy activity. I remember in the past that people would use social media to post something they were thankful for every singe day until Thanksgiving. My friend and I totally ridiculed those people. (in private). I feel a bit guilty about that. Why does everything have to be a contest? Can’t one thing you are grateful for be enough? I just felt some of the things were made up or they just didn’t have enough to be thankful for that they would be stretching it those last 10 days. Making something happen to be thankful for. Like how I make lists, endless ‘to do’ lists. I will add something I already did, just to be able to have the satisfaction of crossing it off. Gratitude can be like that. Sometimes you have to make something happen so you can check that box each day so you are not 100% miserable. Just 99% miserable. If it works for you, good for you. Gratitude journaling is not for me. It never has been. Because for every gratitude I can find an opposite to balance it. By nature I am snarky. Humor is survival. If I can make others and myself laugh at anything, that is a good day. Denial makes the living tolerable.

It is about how much can you tolerate. Counseling right now for me is about how much pain, self reflection, grief, or emotion I can tolerate at any given moment. Then learning to tolerate more. It will be great if counseling makes my marriage stronger. I will be grateful for that. But what I really want is the skill and ability to tolerate my own existence. I will never be a good partner until I can do that.

I am sure I talked about being Strong in past posts. I no longer respond negatively to someone telling me “you are so strong” or “I could not be that strong”. I have hated that so much. It is like saying to a grieving mother, by being “strong” you really are not grieving your child like you should or like they imagine they would. Again, grief is not a contest. But it is weaponized. I do it to myself. I can’t be happy today because that would not be honoring my lost child. If I find joy in something, I am not missing her enough. Everyone has an opinion about how you should feel, how you should grieve. But you are your own worst critic. I have for 7 years grieved hard. Guess what? I will continue to grieve hard. Not because my loss was bigger than your loss, but because it fucking hurts every second of every minute of every single day. I made being strong a bad thing. It feels like a dig when someone says it. But it is okay to be strong. I want myself and others to stop judging themselves by how “strong” they are after a tragedy. It is not helpful. Everything is a spectrum when you face loss, trauma or tragedy in your life. A sliding scale of many emotions, feelings, moods and thoughts. Sometimes I will say “I am having a bad Hayley day”. Because some days and some moments are just harder than others. You never have the same level of tolerance for the pain every single day. For me a good day is when my tolerance is higher than the day before.

I wondered how I would jump back into my writing. I didn’t know if I could or wanted to. But it is what worked for me. I feel like I have not even started the grief process. First I had to survive when it happened. I had to continue to breathe. Then I had to figure out what happened. Then I had to prove what happened. Then I had to make sure that people were held responsible. I had to make sure Hayley continued to make a difference in the world like she did when she was alive. I had to make sure I didn’t lose my house. Financially tragedies are not helpful. Strong is just breathing each day. But to go to work and make sure your family is taken care of is the next level Strong. Grieving is a full time job. I will never ever consider us “lucky”. We have the means because of Hayley’s death to relieve the financial stress. We can afford a counselor. We can afford two households so we can have our own space to grieve. We can afford to help others. We can afford to grieve. We can help others.

You know how we say “I can’t believe it is July? Where has the first half of the year gone?”. I say where did 2018 to 2022 go? There has always been something else that “has” to take priority over dealing with my grief. I feel embarrassed at how badly I am doing. When someone asks when Hayley died, or how long it has been, I truly do not want to answer. “A few years ago” sounds better than “7 years next week”. Why is that? Maybe we judge grieving people because we are terrified of it happening to us. If we believe that someone should “get over” the loss of a loved one, the loss of a child no less; then we feel like there is hope if it happens to us. We do not tolerate others pain well. We need and want them to get better, complete the steps, complete the grieving process. I swear I feel that I have failed at grieving. It does not feel like 7 years. How long does it feel? I don’t know. Maybe 2 years? I know as a fact I will never not be grieving the loss of my amazing daughter. 19 years of life will never be okay. How she died will never not be tragic. Wishing she was here with me will never stop. I believe that humans have evolved to require a beginning and an end to absolutely every single thing, feeling, thought and existence. Our brains cannot make sense of something that never ever ends. It is our survival instinct. The day is a constant existence of beginnings and ends at any given moment. I am hungry. I ate. I am not hungry anymore. Until I am again. We have to put things in to a cycle, it has to fit into a box so that we can make sense of it.

Hayley was born.

Hayley died.

I grieve.

A never ending cycle. Dates are a tangible reminder. Today was her surgery day. The dates of July 11th to July 24th, they will come every single year. It will never get easier. It will at best get more tolerable. It is not a process that I must complete. I will grieve always. It may make people uncomfortable. It may make people worry about me. It may make people think that something must be wrong with me. People may think I am not living life if I am actively grieving. But that is not true. Grieving is living. It does not end. It will never not hurt. I may never reach others expectations. It may always control my days. The only absolute is that I will always be Grieving. It just is. I will never complete this ‘Process’.It will never make sense. It will never have a silver lining. It will always control me.

Until I am gone.

July 11, 2017

Hayley’s Story, Part Three

July 19, 2022

The night terrors are back this past week. I am sure the calendar is the trigger. I had one last night. On July 17, 2017, at 9:00 pm, Hayley was settled into the Cherry Hill ICU. It had been one of the worse days of my life. We felt better, even though the neurologist did not meet us there to discuss her treatment plan as she promised. We took this to mean it was not an emergency. We knew what was causing her excruciating pain, a blood clot at the base of her brain. They were planning to start the blood thinner, Heparin, at 10:00 pm to break up the clot. The ICU doctor did not tell us anything about her condition. We didn’t know the location of the clot. We didn’t know the treatment plan. We didn’t know that it was a one in a million type of clot. We thought she was finally diagnosis and let’s fix it. She was comfortable and out of pain. Only one of us could stay in the small room. We decided it would be Scott. My plan was to head home to check on Henry. I would sleep a few hours and come back maybe between 2:00 and 4:00. I had no intention of missing rounds. It was time to get answers and see how long it would take for them to fix her. This will always be the most traumatic and tragic decision I have made as a parent.

The episodes at first were very specific. PTSD is like that. It is not one symptom that is the same thing at the same time. People with PTSD haveĀ intense, disturbing thoughts and feelings related to their experience that last long after the traumatic event has ended. They may relive the event through flashbacks or nightmares; they may feel sadness, fear or anger; and they may feel detached or estranged from other people.

According to behavioral health experts one of the five symptoms of PTSD is: Internal reminders of a traumatic event.Ā These signs of traumaĀ typically present as nightmares or flashbacks. Itā€™s important to realize that these are not simply memories. They are unwanted, intrusive episodes in which a person feels as though they are in the life threatening situation again ā€“ like theyā€™re watching a movie or seeing it unfold in front of them. It feels very real to them.

I have nightmares that are so realistic and so detailed about things that had actually happened. It takes hours, even days to shake it. You wake up and you are stuck between the memory and current reality. The most terrifying dreams are when my mind takes me to after July 11th but before July 18th. In the dream I know the answer. I just need to get them to treat the issue before it is too late. According to the experts she could have been saved every single fucking day, all the way to about two hours before she crashed. I ask myself every single day what I could have done to prevent her death.

The dreams are terrifying. The general theme is trying to get help, trying to make the one person listen. I am running out of time. The terror is real. My mind and body truly do not believe I am in a bed in present day. It is like a runaway train, picking up speed. It never ends until I wake up screaming.

Sometimes the dreams make little sense. The one common thread is that they are very detailed and complicated. Sort of like a Tim Burton movie. There are real people in these “movies”. The genre is always the same. I am trying to find something or someone. I am always trying to convince someone or even Hayley herself that she is not dead.

Scott and I have slept in different rooms more and more as the years have passed. Not because I don’t want to share the bed with him. Sometimes it would be one of us snoring. Sometimes it would be moving too much. He has restless leg syndrome. He sleeps pretty soundly. I wake easily. Good sleep has eluded me for years. It has become more important since losing Hayley. I have spent so much daylight sleeping. Sleeping is an escape. I have worked hard and tried everything to make sure I can get as much of that depressed sleep during the appropriate hours. It is a battle I continue to lose. I also do not want him to be present for the night terrors. A year ago I took a trip to Mexico and had two different friends room with me. Both witnessed different versions of my night terrors. Both were very concerned. Sharing a hotel room is no longer an option.

Scott believes that if he does not acknowledge something, it does not exist. His ability to compartmentalize is a skill I envy. He has never confirmed that I wake up screaming. I just know that I do. My mouth and throat is dry, my heart is beating so loud, and many times I am soaked in sweat. Henry has heard the screaming. Everyone on the hospital floor heard it on June 18, 2017. I will never know if Hayley heard me.

On July 11th after the meeting with the anesthesiologist, I waited with Hayley. The surgical nurse came to get her. We hugged and kissed her. I assured her we would not leave that family waiting room. She reminded me that I needed to hit the prime day sale on Amazon to get what she needed for her new apartment in the fall. The nurse indicated how long the surgery would take. Packages from Amazon and home goods from Macys were waiting on the porch or in the house when I came home without her. I actually returned most of the items in a daze. “Why are you returning these?” “My daughter died two weeks ago and she won’t need them for her apartment” I was numb.

We settled in to wait. The amount of time we had been told came and went. A nurse came out to tell us that the surgery was running long. She assured us everything was going well. She turned to leave. Nope. “Excuse me, why is the surgery going long?”. Her response “The procedure got started late”. I groaned to Scott. I hoped that they gave her some anxiety meds while she had to wait. Her nerves must have been off the charts. I had no idea.

Within about 15 minutes of that update, the surgery coordinator came in to see us. She was the one that scheduled the surgery and the appointments. She was the one that dealt with the insurance. She had been a great support system for Hayley and I during the short amount of time we had been working with her. She felt very protective over Hayley. She indicated that she knew someone had told us the surgery was running long. She also suggested that they had not told us exactly why. She wanted us to know that it started late because there had been issues with the epidural. WTF? Evidently the epidural was difficult to place and that she did faint. That was why it was two hours late? Did that mean he worked on the epidural for two fucking hours? That must have been torture for Hayley. I was livid. What that meant to me was he did not listen to a word I said. Or he did listen and then ignored our very specific requests. I was not angry because I thought there would be complications. It did not occur to me that there would be a problem because the surgery went forward. But I was not a happy mama bear. As it turned out this delay and this arrogant man would end up costing Hayley her life.

Hayley’s Story, Part Two

June 2017

Hayley was home from her first year at WWU. Even if you did not see her, you knew she was there because her stuff was everywhere! All of her dorm belongings were piled up. We had about 3 weeks until her surgery. Hayley loved home. She was all about her home and her bedroom. This always made me happy. As a child I had moved often with my family. I went to a different school every year until High School. I was adamant with Scott that when or if we had kids it was very important to me that they stay at the same schools for their entire childhood. It bordered on obsessive. We bought our second home at the end of 1998 when Hayley was 6 months old. We thought that was the place. It was a brand new house and the community, Snoqualmie Ridge, was brand new. We were one of the first dozen houses built. We had been promised that the elementary school would be built in the neighborhood within 5 years. This was perfect, Hayley would start kindergarten blocks from home. This was our goal.

The world held their breath as the calendar rolled on New Year’s Eve 1999. Scott and I wanted a second child. We had made the decision that after 10 years at Washington Mutual I was going to leave. I could not work the schedule or hours required and have two kids. My upward climb had become stagnant. This was such a hard decision. I had started as a teller when I was 19 in 1990. Like so many of the senior managers I worked for, I thought I would be there 40 years and retire with a spectacular party and my name on a building. That job paid for Business School. It was a natural decision to accept the offer of the management training program starting within a month of graduation. I wanted to go to Law School. But it felt like an impossible decision to be 23 and be presented with a well paying job with a well defined career path. Law School was expensive. My academic scholarship had ended and continuing to work full time was not going to work for Law School. The last three years of college I had scraped by working two jobs to get to the end. I did not get to enjoy school like I always had. Scott worked selflessly for me to finish. We met when I was 19 and he was 24. Student Loans were not an option. So I chose my path.

When I started working at WAMU they had 40 branches in the state of Washington, when I left they had hundreds of branches in multiple states due to acquisitions. The growth was exciting. As a financial center Manager I had a front row seat to some pretty spectacular change and growth. I knew the CEO, my opinions were valued and I truly believed that I could climb the corporate ladder as quickly as I wanted. Scott also had joined me at WAMU working in the “back office” in various business analyst roles. He had found his thing and was good at it. I started at a time with very limited technology. We used what really was a glorified tap writer. 50% of what we did was actually on a real typewriter. Not only did the bank physically grow frantically, we lived one of the most significant decades involving technology change. This is why they call us Gen X. This was not going from an iPhone 6 to an 11. This was using savings passbooks, balancing with our brains with a calculator and being so in awe when we got a fax machine. Our phones had cords that kept you from walking more than three feet while using it. As the youngest it quickly fell to me to be the one to learn the new shit and teach it to the rest of my coworkers. I loved this leadership role. I loved to teach. The more I did the more competent I would become. I remember the management standing around behind me while I introduced them to “email”. The system we started with was called Wizard Mail. You would say “I will Whiz you”. Of course we always giggled. We went from thick files of paperwork being hand delivered to the underwriters in downtown Seattle to automated decisions to lend hundreds of thousands of dollars to a customer. If you recall this unprecedented growth and lending frenzy eventually led to Washingon Mutual’s demise.

As the nineties ended, I was a 28 year old Mom of a super fun 18 month old. My husband was an amazing father. He may have been one of the original examples of a true “girl dad”. I had stayed home for 3 months when she was born and he stayed home for 3 months. “Paternity Leave” was not a thing. He cried the day we took her to daycare and he went back to work. It broke my heart. So many times I almost said “you stay home, I will be the bread winner”. But I just couldn’t do it. She was way too much fun. I knew that I would grow to resent him. We compromised, Scott worked four tens and I worked Saturdays so I could have a day off during the week. This allowed us to only have to pay for daycare three days a week. My job was demanding. It was “exempt”. Meaning you are going to work way more than 40 hours a week, you will always be responsible and available when that branch was open. I even had a pager! After ten years I finally admitted reluctantly that I had reached as far as I was going to go at the bank. I denied that my failure to continue to move up the ladder had anything to do with being young and a woman. A woman could do anything. I really truly did not understand that most of the men in the power positions had started their own journey at a time when women were not in the board room. They were willing to tolerate us but not quite ready to promote us. Women could not even have their own checking account when these guys started their careers at the Bank. It just did not occur to me that if I worked hard and had success I wouldn’t meet my goals. Sexual Harassment was a new concept. We took required classes in the late nineties. You really did not absorb the information that Human Resource Professionals were trying to pound into your heads. Their audience was Men that had been “harassing”W omen for their entire careers and the Women, we sort of shook our heads and thought, do you really think I am going to report my boss to you for complimenting me more often on my legs than on my ROI. Do you think I am going to risk my career for a new concept that the men were not ready to hear? Nope.

So there I was sitting in my bed nursing 18 month old Hayley as I watched the ball drop on what may be the end of the world. I had a flashlight ready in case the power went off. Scott had to work that night in case the bank’s computer systems blew up. Which is actually funny, what was he going to do? Hold the fire extinguisher? I remember speaking out loud to sleepy Hayley at that time. I told her two things were about to change. Work was no longer my priority and she was done breast feeding.

In addition to some how coming home with more stuff than she started with in a 100 square foot dorm room, Hayley had decided that it was time for a big girl room. She wanted a full makeover to start her recovery and her new life with a body she didn’t hate. So we moved everything she owned into our “office, bonus room, storage room”. It has always been known as the Blue room. As long as we live here it will always be painted blue. We picked out a new bed. We made lots of fun trips to Homegoods. She chose paint and poor Scott spent many hours and coats covering walls that were either Chocolate Brown with a neon orange stripe or lime green. He had painted that room no less than 5 times in 15 years. Now it was a mature light Gray paint, Kensington Gray. She asked for a comfortable chair in her room instead of teenage lounge seating. She wanted a place for us and her friends to sit while they visited her during her recovery and took care of her every need. She piled her collection of pillow pets in the blue room, that collection was done. The magnet wall paint with the word-magnets to write poetry on was covered with a bookcase and a new tv. Of course, no poetry ever happened on that wall, just teenage versions of mad libs. New art that spelled out the word “HOME” was hung above her bed. Pillows and art that said one of two things was lovingly placed. “You are my Sunshine” or “Love you More”. She loved her new space.

Our plan was while she lounged in bed after her surgery I would start bringing in stuff from the Blue room for her to decide, Keep or Donate. It was only recently and only because of our pending remodel that the blue room was cleaned out. Most of the items are in bins in the garage or were shoved in her untouched room. Her stuff is everywhere in that room. Her Ikea laundry hamper with a few outfits still sits untouched. I am faced with a deadline, I will have to go in there and do what needs to be done before mid August. I wonder if her clothes in that hamper will still smell like her.

The week before her surgery I saw the perfect item in my newsfeed. Those that knew her cannot count how many times they heard her favorite phrase. Not really a phrase but a life motto. I don’t think a day went by that I did not hear her say “I fucking hate people”. It was her snarky response or answer to pretty much anything annoying. She worked at our local cafĆ© as a hostess and table busser. I guarantee that a shift did not go by without that coming out of her mouth. I had found a pillow. Not any pillow but one of those new mermaid pillows that were all the rage. It looked like a bunch of sequins sewed in rows. These sparkly pieces made an image. The magic happened when you took your hand and rubbed them the other direction. The image would change. The pillow I ordered from this thing Etsy that I had never heard of, looked like a pretty floral pillow. When changed it looked like an old fashioned needlepoint pillow you would find at Grandma’s. This one said “I fucking hate people”. I had planned to surprise her with it but it was delayed when I found it was coming from the UK. So I sent her a screenshot. Her response was “I have to have that”. Mine was “it has already been ordered”. Sadly when I left her in Seattle Cherry Hill to save the lives of others, the package had arrived at the house, she never saw it in person.

We spent every day together leading up to July 11th. I was not working. She asked me to spend the summer with her. I agreed I could wait to go back to a new job in the Fall. We made so many plans including time at Seabrook after her post surgery check up. I was excited to show her this place that my cousin and I had discovered in May. I showed her pictures, she reluctantly would say it looked nice but it was no Cannon Beach. I told her it was closer and if she wanted ocean time it would be in this state as I was not comfortable going too far away from her surgeon in case there was an issue with her healing. I had no clue how wrong I was. Her breast healing was never going to be an issue.

The week leading up to her surgery she asked me one of many questions about the procedure. She wanted reassurance from me. I don’t recall where we were. My memory of the conversation feels like we were sitting close. She was unusually quiet. She asked me “Mom, can I die from this surgery?”.

Whoa, where was this coming from? I am not one to lie to my children. Hayley had a low tolerance for bullshit. I looked her straight in the face and I said “No, Hayley, you are not going to die.” I believed it with all my heart. Always one to insist on everything be a learning opportunity, I explained that surgeries always had risks. I had at least a dozen in my lifetime. I did tell her that it was always a possibility but leaving our house every day had risk of death. I explained that a lot of the risk was from the general anesthesia and I pointed out that she was having an epidural. I had never heard of someone dying from an epidural. I asked her do you trust your surgeon? She didn’t hesitate, absolutely he is the best. We both agreed that we did not think he would ever risk his patients lives. We believed it and it was the truth, that this was the reason he chose Epidurals. Lower risk and easier recovery with less complications. Google “can I die from an Epidural?”. A common sentence you might see is “the fact that anesthetic textbooks donā€™t even mention statistics of fatalities related to epidurals probably means that such an outcome is exceptionally rare”. I think about that conversation all the time. What if I had given a difference answer? What if I had dug a little more and found out she was having second thoughts? We could have delayed it a month and would not have had the same outcome. Her entire death was a string of “what ifs”, every single day something could have and should have been done to prevent her death. It was a string of negligence. I knew things were not going well, nothing felt right. I left messages for every doctor I knew that worked in that hospital and some that didn’t. I used her my chart and messaged, “We are in the Issaquah hospital. Hayley is not doing well and I feel we are not getting the care she needs, can you walk over to see her and help us please I am desperate”. Most did not respond, the ones that did said “the hospitalist is in charge of her care, trust that they will figure it out, I can’t get involved”. Really? Her surgeon got involved and he didn’t even have practicing rights there. I was beside myself pounding on nurses station. Why didn’t I walk my ass over to their office, two floor ups, and not leave until someone helped?

On the morning of the surgery, Hayley was so nervous. I thought she was going to back out and I was so nervous that I was fine with that. She had one other surgery in her life and I nearly lost my mind waiting for them to bring her back to her room. I am not good at relinquishing control in general and really bad at doing it when it involved my children. Scott drove us into Seattle. I remember that she wore sweat pants, no bra, what was the point and my favorite zip up track jacket we had gotten on our last Disneyland trip. It was constantly being “borrowed”. I told her once, that is my favorite, that is not yours. She said, I am not taking it I am borrowing it, do you mind if I borrow it? I laughed and asked what was the difference between taking it or borrowing it. She said if I take it, it lives in my closet. If I borrow it I hang it backup in your closet or put it in your laundry basket. Made sense. It made me feel good that she liked borrowing my jacket because it made her feel good. She said wearing it was like having a hug from me. I remember rolling my eyes and telling her that was excellent bullshit, keep it up.

We checked in. She chose to sit on a couch with Scott and I on either side of her. She was not on her phone. She was nervous. When her name was called she jumped. We were led to the back of the surgery center into an exam room. The nurse showed Scott and I a family waiting room just out a door in the hallway where we could wait during the surgery. She indicated that Hayley should undress, put the gown on open down the front and cover her hair. Scott quickly backed out and said he would wait outside. She was no longer the child that walked around the house butt naked every chance she got. I honestly don’t remember when Scott came back in. He says he was there when we met with the anesthesiologist. I must have gotten him. But I don’t remember him being there and I know he did not speak. Hayley and I wanted him to feel a part of this “life altering” decision. She never wanted him to feel left out. Before anyone came back in, she snapped her signature selfie to document the day. I don’t know why but that photo, she chose to make it black and white before she posted it to social media. That was her last post, that was our last photo together while she was alive. It is both a beautiful and heartbreaking photo.

Her surgeon came in. He was happy to see her. She undressed and he quietly started drawing on her chest with a sharpie. It tickled. She was nervous but not shy. We both saw how focused he was and how much of a perfectionist he really was. He was using tools to measure that looked like what an architect might use. He would make sure they were even and absolutely exactly what she would be happy with. There was not much to talk about, we had asked a lot of questions at the Pre-Op appointment. He asked if she had any questions and was ready to feel better. She was ready. He told us we would meet the anesthesiologist next. I asked who it was and had he worked with that person before. That is when he told us he normally has his own nurse anesthetist, but she had already left on vacation. His own summer vacation was starting that week. I had never heard of a nurse anesthetist. Google: A nurse anesthetist isĀ an advanced practice registered nurse (APRN) certified and trained to administer anesthesia for surgery, labor and delivery, emergency care or pain management.

I will always wish she had been there that day. She had been doing upper thoracic epidurals for 20 years. That is what she did every day she worked. I had no idea that the epidural Hayley would have would be any different than what I happily had to give birth to her.

Her surgeon left and said he would see her soon. He squeezed her shoulder and briefly squeezed my hand. I had 100% confidence in him. As we waited, I remember her looking down her gown and making comments about what she thought all the drawing meant, she asked is that permanent? I laughed. A knock on the door. This is the first knot in the string. Every day, if ‘A’ had happened instead of ‘B’, Hayley would be alive. If this knot didn’t stay tied the thread would slide through the needle. He introduced himself. My first thought was “shit he is young”. I remember thinking I was getting old if a doctor was named “x”. It was a young name, it was kind of a fashionable name. I actually said to my friends group chat that day “his name was X”. Which prompted a couple of the ladies to ask how old was he. I remember teasing Hayley after the meeting how good looking he was. Kind of like a Ken Doll. She rolled her eyes, “Fuck, Mom, he is old like you”, grinning as she said it. Always trying to push my buttons. I am not sure if she ever knew that she could not push my buttons and when I acted offended I was always feigning. I pointed out he was certainly younger than me. I was trying to distract her. The tension in the room had skyrocketed during his visit. I know that I told my friends chat that he was “Hot”. I said “hot” not “good looking” or “handsome”. Do you know why I know I wrote “Hot”? Because during the trial on cross examination of me and every chance they got, all of the defense lawyers put an exhibit on the screen. It was a screenshot of my messages that day. They always made sure that image included the line that said “He is Hot”. Why? Were they trying to embarrass me? Were they trying to make it seem like I was not being serious that morning so I could not have possibly made such a detailed request of the doctor? I don’t know. I don’t give a fuck. The first time was humiliating. Every time they showed that text after I held my head up and stared straight at the screen. Sometimes I may have slightly smiled thinking how funny Hayley would find this particular moment. I would look at him and think, you are not so hot anymore, you look like you have not slept in five years. I wonder why?

He had introduced himself and shook her hand. He started to ask her questions. I tried very hard not to answer for her, she was an adult, I did not need to speak for her. It didn’t take very long for her to look at me with her heart in her throat. I asked her if she wanted me to answer the questions for her. She nodded. This didn’t seem to surprise him, she was clearly in that weird time of life where you are not a child but you are really not an adult. He had asked her if she had any concerns about the epidural. He had not bothered to explain to her any details about an epidural but it wouldn’t surprise anyone that I had explained it to her in detail prior to that morning. She had answered “needles”.

I explained to him that she was really concerned about Fainting. He immediately interrupted me and said “she won’t faint”. I thought “arrogant”. But I continued explaining that Hayley had a history of having a Vasovagal response with needles.

A Vasovagal syncope (vay-zoh-VAY-gul SING-kuh-pee)Ā occurs when you faint because your body overreacts to certain triggers, such as the sight of blood or extreme emotional distress.

I shared with him that she had fainted multiple times when getting blood drawn or most recently getting an IV when she had her wisdom teeth out. We had already discussed this with the surgery nurse during her pre-op appointment. She also had blown us off and assured us she would be there the entire time and it wouldn’t happen. I remember saying well that was what the nurse told me at the Wisdom Teeth when I suggested she put the arms up on both side of the chair. I may have said I told you so to her when I had to catch Hayley as she slid off the right side of the chair. That nurse seemed personally offended by the fact that Hayley fainted. (yes feedback was given to the doctor)

Again Dr. Ken Doll indicated it was no big deal. Nope. Not good enough. I explained to HIM that I was familiar with the position she would be in when he administered the epidural. I knew she would be sitting up rounded forward and that it was so important that she hold very still as he slid a needle into her spinal canal. Trust me I was familiar with this rodeo, twice. Again, he blew me off. Nope. Again.

I asked, how will you handle it if she faints? I think he realized this was not going to be a drive by meeting like he was used to. It was obvious he expected it to go like this. “Hi I am Dr. Ken Doll, I am doing your epidural today, do you have any questions, please sign here”. Remember a dozen surgeries here, I was very familiar with the drive by meeting with the anesthesiologist. It often comes across as arrogant and confident. Not necessarily a bad thing. But he clearly had not met me before or dealt with any patient and their mother.

Hayley knew I was getting annoyed, she was not smiling anymore. I pressed him, “what happens if she faints?”. He may have realized that my chair blocked his exit because he finally addressed the fucking question. He told me, if she fainted he would abort that attempt quickly as to not do any damage. I looked at him like “And?”. Nothing. Let me be more specific Ken. “Will you then switch to general anesthesia?”. Remember as a frequent flyer in the surgery ward, I really did not have trepidation about general. I had not had a bad experience. An epidural for surgery was new and scary to me. I had pressed upon Hayley before that day that she needed to try her absolute hardest not to faint and hold perfectly still or she could get hurt. Here is exactly what he said. I have no doubts about my ability to recall this conversation verbatim.

“If that is to happen, which I am sure it won’t, I would have to lay her down on her side to perform the epidural. This is not ideal” insert a long pause, “And why is it not ideal?”. Am I going to have to drag every word out of this fucking guy. Is he an anesthesiologist because he prefers to put people to sleep to talking to them? Seriously, if you have followed my writing at all it should not surprise you that all of this is exactly what goes on in my heard. Yes, it is exhausting.

He says, “because the vertebrae up high where the epidural would be needed are closer together therefore the space I have to thread the needle in is smaller, laying down makes the space even smaller, by rolling forward in a sitting position you are opening that space and therefore laying down would be more risky”. Insert alarm bells in my head. Hayley looked green. Again he said “but I am sure that is not going to happen”. NOT. A. GOOD. ENOUGH. ANSWER.

Here is what I said on the morning of July 11, 2017 and in my deposition over and over AND when I testified in the recent wrongful death trial. Interestingly his recollection of this exact same conversation changed three different times during HIS deposition which I was present for AND in trial. All times under oath. Just to be clear I have watched this man, a man responsible for my child’s death, LIE under oath directly to my face. More than once. More than one different lie.

I said “Dr. Ken Doll that is not going to happen because if Hayley faints while sitting up YOU are NOT to proceed with a risky attempt while she is laying down. YOU are to come back and talk to Scott and myself about other options. We would be willing to consider general anesthesia at that point.” Hayley nodded. I was not yelling, I was not speaking in a negative manner, I was not questioning his credentials. It was just stated if “A” happens you must do “B”. I know I was nice about it I know it was a statement not a question. I remember being a little shocked at my firmness. I had never advocated like that for myself. But it is no surprise that I was not going to just “trust” when it came to my child. I was also modeling behavior for Hayley. This is how you advocate for yourself, are you taking notes babe?

His response? Did he argue? Was he arrogant? No, he was not.

He said and I quote “Duly Noted”.

Again, it’s me.

“Are we on the same page?”

I looked between him and Hayley; both said yes. She signed the consent form. The knot was tied.

Time for Hayley’s Story, Part One

It has been a very long time (February 2021) since I posted an entry on this Blog. It’s purpose will always be to share my grief journey with the hope that it helps someone on theirs. I hope it helps you understand those around you that are grieving a loss. The reason that I had to stop posting is pretty simple, two words, Legal Action. We filed a wrongful death lawsuit on behalf of Hayley in July 2020. This alone has been a huge learning experience that I will get more deeply into at another time. We were able to mediate with one of the parties and chose to take the other two entities to trial. The trial was 5 weeks long, on Zoom and the Jury got it wrong in our opinion after deliberating less than a day. This happened a little over two weeks ago. Almost 5 years to the day of Hayley’s death. The entire battle has taken every ounce of energy I could spare. The trial took everything I had left. It is public now. We provided proof of negligence. Hayley died a week long painful death. Each day she could have been saved. She could have been saved up until an hour before she crashed. By doing that we hope that the medical professionals involved have made changes in their practice and that the hospital has made changes in protocol; both to increase the probability of this never ever happening to another family.

I have chosen today, because it is July 11, 2022. This is the five year anniversary of the elective procedure that Hayley chose to have. I want to tell her story. My plan is to walk myself through each of the days of that terrible two weeks. I hope I find silver linings or even silver dust in each retelling of MY version of the story. (legal disclaimer, this is my own personal opinion based on what I witnessed, information I have learned from legal proceedings and experts that were interviewed for the lawsuit.) If I am very lucky this will be the last time I have to tell this story in detail. But I need to do it. I have sat through days and hours of depositions, testimony and research for the last 5 years. My opinions are educated but they are only my own. Her story started long before July 11, 2017.

In Hayley’s Junior Year of High School after being on a competitive dance team since the 2nd grade, something went very wrong during a performance. She was in her third year as a member of the Eastlake High School dance team, a competitive program with an over zealous and insensitive Coach. By the end of the first year, we regretted making the switch from studio dance to high school sports. Her Studio experience had been a warm and supportive environment for her to enjoy her love for dance and at the same time navigate all the changes a little girl goes through from age 7 to 14. This was thanks to great coaches and kind teammates. This was not the case for her at Eastlake. I had a wonderful High School experience and it did involve a dance team. The difference was we were allowed to be more than a dancer or a popular girl in a very short skirt. I was able to hold student body office both my junior and senior year. I competed in the DECA program. I had high grades that got me into my first choice college. I had friends that were not on the team. We were good at the sport. We practiced a lot and worked incredibly hard. But not once did I ever feel like there was nothing more to me than that team.

That was not Hayley’s high school experience. This can be directly attributed to the Coach and the Administration at the school. This team won. It had a long history of winning. The coach would expect nothing less than for the program. It had to continue to win at all costs. You could not play another sport. At her studio team she was able to participate on a soccer team most of the years. She had a social life and lots of friends during the studio years. On the high school team it was difficult to hold down a part time job. You could not have any other commitments. It was EHS dance 24/7, WSPS. Wolf Strong Pack Strong. That WSPS still makes me want to gag. I am not able to speak about the present, but I can share my observations for the 8 years my kids attended the school.

WSPS. It was a motto. It had good intentions but for most students it was not positive. Only the popular kids were WSPS. It was not inclusive at all. So many students were left out. The computer nerds, the gamers, LGBTQ, the disabled, the bookworms, and so many more. WSPS was meant for an athletic and popular group of students that considered themselves better because they believed in a motto. Being chosen to be in the leadership class at this school was not always because you were a true leader or had the potential to learn those skills. I was very involved with the school. Part of my actual job was working with leadership classes at High Schools on a Heart Health awareness month. I had direct contact with these kids. The teacher was the football coach. Many of the kids I met and worked with in that class were some of the meanest and self absorbed teenagers I had ever met. On the other hand there were many sincere, kind and true leaders. But overall the Motto was a bunch of bullshit to the majority of the student body. A great idea. Poor execution.

The school website says; Eastlake believes that students need to develop the intellectual strength and character necessary for success now and in the future, as captured by our mission and motto Wolf Strong, Pack Strong (WSPS).

There were many positive aspects of the High School Team experience. She made some strong new friendships and strengthened existing ones. They spent a lot of time together and their shared adversities with the program was very bonding. They were a part of the school’s spirit and legacy. They cheered and performed at home football games. It was always a fun time under the Friday Night Lights. In their uniforms they felt special. Plus it was a lot less expensive than Studio dance. For a middle class family living in an affluent community during tough economic times, this was a huge blessing.

When Hayley made the team, at the first Parent’s meeting before the agenda started parents were chatting. I heard from more than one returning parent, “do not piss off the coach no matter what or she will take it out on your daughter”. I scoffed. If an adult in a power position hurts my child or any other child, you can be guaranteed I am going to say something. With Hayley’s guidance I did have to let a lot of battles go unfought. She saw that it was 100% true, piss off the Coach, your daughter suffers. You were not allowed to miss practice on holidays or ones scheduled during breaks. So there goes your family vacations. Her second year, during February mid winter break I took the kids along with my back up mom and her kids to their company house in Palm Springs. It was an amazing time. We had to fly standby on a family members airline benefits, but you do what you have to do to make things work in your budget. After finally getting there we knew coming back was going to be very difficult. The next practice was on Monday, Presidents Day. Just as we were leaving we found out if you missed that one practice you were disqualified from performing in the next competition. This was not even in the rulebook. It was a verbal command from the controlling coach. In the official rulebook you had to miss a certain number of practices for that to happen. We called those demerits back in my day.

Hayley was stressed out about getting back so we decided to attempt standby out of Los Angeles instead of Palm Springs. More options. As Sunday and Monday approached it was clear based on plane loads we were going to have a difficult time flying back in time. I alerted the coach. I let her know that if one seat was open I would be willing to let Hayley fly back on her own for the first time. We did everything we could to make that happen. On Monday morning it was clear we were not getting on a flight until Tuesday. I emailed the Coach to let her know. She did not indicate it would be a problem as it was unforeseen. I decided to be spontaneous and teach the kids to make lemonade out of lemons and took them on a one park one day pass to Disneyland. The coach found out. I didn’t hide it. At Tuesday’s practice Hayley called me on a break, she was very distraught. She had been cut from the dance because she had missed Monday. Others missed Monday but were not cut. I asked her if she wanted me to be mama bear or not. Her choice. She said yes. I went to the door at the end of practice. I motioned to speak to the Coach privately with Hayley. I explained again what had happened. Her initial response, “Well you didn’t try that hard to get a flight because you went to Disneyland instead”. Needless to say it spiraled from there. Hayley was a strong personality, she worked hard, yet the coach had her on her dislike list from the start. Probably because of me and because she was not the best dancer on the team. But she had the biggest heart for it. Long story shortened a tad, Hayley did not get to perform and the rest of her time on the team, that woman treated her like crap along with most of the other girls. These were girls! Not women. This was High School! This was not division one NCAA. This “Coach” treated them so badly. She messed with their psyche. Girls ended up with anxiety, eating disorders and so many injuries. I wanted Hayley to quit so badly. But she would not give the coach the satisfaction. She kept going with a smile on her face and made it her job to entertain and get her teammates to smile during the grueling practices. This won her the honor of being voted “class clown” on the team three years running. The speeches for this award at the end of the year team banquet always contained the line “Hayley is the one we can count on to lift our spirits when we are down”. The first year I wasn’t sure if Class Clown was a compliment. But it was and it really said a lot about who Hayley was.

Don’t even get me started on the costumes. Think little girls in pageants inappropriate. This became a problem for Hayley that year. Despite me being a late bloomer, Hayley blossomed that year. She was also dealing with a hormone disorder that made her gain weight and her breasts became very large. Her flat friends said they wished she could share. Many of the costumes were backless or low cut requiring special dancer undergarments. This meant strapless bras or backless bras. Have you ever seen a Ballerina with triple Ds? They assume dancers will be petite in this area. Hayley was the one that was not. I drove to every dance store in the western part of our state trying to find a solution to this problem. I ordered a pile from online. It looked like it had thrown up nude colored bras on our kitchen table. (Poor Henry) I begged the coach for help. She did not give a fuck. But she should have. During that first competition, during their performance, Hayley’s right breast decided to make an appearance. She came out of the costume. It is hammered in to their heads, no matter what happens you smile and keep dancing. If that hat falls off leave it. If you lose a shoe, leave it. The performance always goes on. Hayley as a rule follower, took this very seriously. She kept going doing her best to shrug, sneak a pull on the top during a floor move, anything to stop this humiliation. I was supposed to video tape the performance, I stopped. I watched her be humiliated for over 3 minutes with an audience of other teenagers. There was nothing I could do. When they exited the floor I ran to the hallway to find Hayley crying outside the locker room. I held her. I told her I was proud of her. Then the Coach walked out and started chewing her out. Then she started in on me for not finding a bra to hold up and work with that awful costume. Yes. She did. I made it clear that I had spent weeks trying to find the solution and thought I had. That she needed to get involved and help her dancer. She was not empathetic or kind. She was mean and humiliated Hayley further.

Hayley and I argued all the way home. I told her she had to quit. She refused. An email response from the coach indicated that they would make a change to the costume for everyone on the team. Many girls thanked us, indicating that they had felt uncomfortable not having better support and coverage. This would allow all of them to wear a normal and supportive bra before the state competition that was a few weeks away. State was the one day they start working towards the previous summer. The routines Hayley had been a part of the first two years had placed first in the state. It was even held in the same venue I had competed in.

As it approached I was not getting an answer as to what the costume solution was. I should have known. The solution was that Hayley was pulled from the routine a week before state and the coach therefore does not have to make one change to her awful costume. This was a win for her. I took it to the athletic director. I took it to the administration. It took a week, a day before they left for state, for them to tell the coach she really should have changed the costume. Thanks guys for taking a week to half ass do the right thing. Hayley, her Dad, her brother and I still went east across the state to cheer the team on. Hayley stood on the sidelines. She was the only team member not allowed to dance in any of the three routines. I was so proud of the grace she displayed.

I went to the administration. I escalated the situation. You cannot in a PUBLIC school penalize a girl for having large breasts, that is not in the rules. You can’t body shame them with tiny costumes. I told the vice principal, “I am telling you right now, that even though Hayley would be a 4th year senior on the team and never had a returner in that situation not made the team, even though they were still required to try out for their spot, the Coach would cut Hayley from the team. She would do this to punish Hayley for daring to cross her. Tryouts were that week. Results would come out on Saturday. I told him if my prediction was correct to expect me to be sitting in a chair outside of his office before he arrived or had coffee on Monday.

Hayley and I sat there at 6:30 am on Monday, eyes red and swollen from a weekend of crying. I even left messages for the coach begging her not to do this. I promised I would never speak to her that year, she wouldn’t even know I existed. No response. Hayley faced after 10 years on a team, not having a team for her senior year. None of the milestones. Last football game, senior night, honoring her parents, nothing at all. She couldn’t go back to her studio team. They had moved on above her ability. There were so many meetings, the district brass was involved, not one person was willing to force the coach to reverse her decision. She tried to say it was not her decision, she had brought in judges from other teams. What she didn’t know was that one of my coworkers knew one of those judges. When asked she gladly confessed that the Eastlake Coach told the judges that under no circumstance was this one girl to make the team. Yes, the Coach was an adult woman. Do you want to know what her day job was? She was a school counselor at Eastlake. Hayley was that “girl”.

Every administrator at the school and the district level were men. The district hired an attorney to do an independent investigation of the situation. At least she was a woman. She looked at the costume. She interviewed Hayley, the coach, other teammates. We were hopeful. We were naĆÆve. The attorney took until the end of December to file her report. Hayley had missed football season. She didn’t go to one game. She had teammates bully her at school when she wore one of her past year’s team hoodies. “You can’t wear that, you are not on the team”. Hayley was depressed. Her weight went up because she went from being physically active for 2 to 3 hours at least five days a week to staying home and being sad. It was heart breaking. She was not looking forward to Prom or other senior year milestones. Her close friends were her lifeline. She still stayed positive in public, she made people laugh, she made people feel good, she was an amazing friend if you were lucky enough to call her that.

The attorney reported to the superintendent that yes, Hayley had clearly been discriminated against, the coach was not a positive influence, had no business influencing teenage girls, and that the administration (men) had botched the entire situation. She indicated we had grounds for a lawsuit. We didn’t care, Hayley had just wanted to dance. By the time it worked its way through the system the team was way into their practices for the State competition. It was too late to make it right for Hayley. The coach won again.

Shortly after the costume malfunction is when Hayley mentioned wanting to have a breast reduction. We were not on board. We understood why she would want this but our fear was that just like tattoos you don’t make that decision unless you have wanted the same thing for more than 4 years. We told her that she may not be done growing. I had gained a cup size when I turned 18. We told her that if she still wanted the procedure after college we would support the decision.

She looked forward and headed off to WWU for her freshman year of college. She had an amazing roommate that she had met online. She loved the school. She loved that she could come home on weekends when she wanted to and work her hostess job at the local cafƩ. She loved that my job brought me near her many times. We were able to go no longer than 2 weeks without seeing each other. We talked many times each day while I was on the road for my job. She was intensely homesick. We were both struggling. My person was not in my house every single day. We had not let her take her car up fall quarter because we believed, rightly so, she would come home every chance she got if she had an easy ride. She was so homesick and probably depressed still. In January we let her take her car. This helped so much. Just knowing she could come home if she needed to seem to reduce her anxiety. She was going to the gym. She was talking about trying out for the school hip hop team.

It was Spring Break when she brought up the idea of the breast reduction surgery again. I had failed to notice that her breasts HAD continued to grow. She was uncomfortable. It was difficult to find clothes to fit. She was in pain. It made it difficult to be physically active. It was keeping her for trying out for the non competitive dance team. Her self confidence was low. At this time my current job was ending. I agreed that we would go see a surgeon and get an opinion and a cost estimate. Her primary doctor was supportive. I found out the name of a surgeon that was highly recommended by several women that had reconstructive surgery after breast cancer. These patients said he was the best, he was a perfectionist but not a man to show his emotions. Just a caring and talented doctor in a quiet way; so don’t be turned off by that, he was who they trusted. I warned Hayley. We discussed the costs. I was going to be job hunting with a kid in college. She accepted that if my current insurance would pay for the procedure that we would move forward, but if not, we would need to postpone and she would need to contribute to pay for it. I really thought it would not be approved.

On our first consult with the doctor, we both thought he was fantastic. He and Hayley immediately clicked. Hayley had a way of connecting with people quickly. She had a way to know who was a good person and who was not. She trusted him and was not uncomfortable undressing. When she did I almost fell out of my chair. I said out loud “OMG”. He gave me a questioning look, I explained I had no idea they had gotten that large. She wasn’t at home now walking around naked like she tended to do. With tears in my eyes I said “Hayley, honey, I get it”. She was a 34 DOUBLE H. Yes, that was two. HH. I didn’t even know there was such a size. Her pain and discomfort was obvious. The doctor agreed that she would benefit extremely from this procedure. He said he could help her and that it would be life altering.

The insurance approved the procedure quickly and she was scheduled for July 11th. He was going to be leaving on a big trip and wanted to get her in before he left so she had the full summer to recover before going back to school. I made sure my insurance stayed in place until the end of July. My job officially ended on July 7th. We felt this was a good decision for her. The opportunity to regain her self confidence, be healthier and dance her heart out.

July 11, 2017. Life Altering.

Just some Reminders for Myself

Many of you may have noticed or not, that I have not updated my grief blog for a long time. It is not because I am not challenged to breathe every single day. It is not because I don’t want to share my journey. The feedback that the blog helps others understand how to support their friends dealing with grief has given me a purpose. I am still writing, just not posting. I will. But this past year has been too sad for everyone. Life has not been “normal” for anyone. People are dying every day and families struggle to feed their kids for the first time in their lives. I feel strongly that my grief, trauma, and sadness is just not appropriate or helpful to share right now. We all have enough to be sad about.Grief has manifested for so many of us to define more than just the death of a loved one. Remember that. We are grieving our loss of “normal”. We are grieving friendships lost due to a difference in politics. We are grieving the loss of trust in our leaders, both sides. We are grieving the loss of traditions. Grief of missing our family members that we can’t see right now. Grieving the challenges of raising children during such stressful times. We are grieving the loss of our jobs. Some are grieving the loss of financial security or our ability to feed our families. Finally there are hundreds of thousands of people that have died from Covid, lives cut short. Regardless of their age, their loved ones grief for the years they have lost. That is a lot of grieving people.I do want to share a couple of tips when dealing with a grieving person. It is okay if you disagree. If you have read the blog some of this will be reminders but some will be new. This is only MY opinion and mostly based on my experience, a lot of it recent. But it could apply to so many right now. Statistically we know it does.I will start with what I know best, the loss of your child. But it applies to all deaths. Never say “I understand how you feel”. Unless you have experienced their exact situation you do not have that right to say that. I have been told more than once and even recently. “I know how you feel I have two daughters.” NO! Unless you have lost a child, never say that to a parent that has. You may mean that you can only imagine. But that is not what you said. When you say something like that you are minimizing their grief and the trauma of losing their child. Not okay. Second, specific to the loss of a child, please never imply that it has been long enough for the parent to be doing better. NO! Every grief journey is different. I know for sure that every single parent that loses a child will never be OK again. They may learn to cope better. But they are not OK. Your child dying before you is just too unnatural in the scheme of life. It is okay to ask, how long it has been since the death, but please be so careful with your words. It is easy to say something that implies they should be doing better. Trust me they are already thinking that and beating themselves up. Professionals and armchair psychologists seem to have put a timeline on grief. That once you have experience each of the formal stages of grief, you are done, you can’t play the grief card anymore. So wrong in so many ways. Would your child cease to exist in your heart and mind after their death? Please do not ask if it is getting easier, it implies it should be. Please just offer your support. “I know this will never be OK. I know you don’t always show your pain, but I know it is there. Please know I am here if you need to talk or just need me to sit (socially distanced) with you. You are not alone”.All of the above advice applies to any death. My mother in law died of Covid. The first question is always. “I am sorry. How old was she?” 85. Admit it we have all thought well at least they had a long life. No, to their family they didn’t. Without Covid, maybe they would have lived to 90. In that time they would have met new great grandchildren, watch grandchildren graduate from college, celebrate life events of the people they loved and the people that they are responsible for creating. At the time of her death, my MIL was enjoying her days. Stop thinking that age should drive at what level we grieve. Every person’s journey is different. When a preventable death happens it is never okay. Would it have been easier if Hayley had been 50 and me 77? No it would not, would I be thankful that I had 50 years instead of 19 with this amazing human I created? Absolutely. I would even be thankful that I would have less years to have to live without her.Grief is Grief. There is not a set path. There is not a timeline. It is never okay to minimize someone’s grief. It is okay to be thankful it is not happening to you. There should be no guilt to feel that way. I would never wish this upon anyone. Don’t forget that in 2020 and 2021, grief has expanded, it no longer has just one meaning. It is okay to feel non-traditional grief right now. Do not compare it to others. It is nearly impossible to be thankful right now for what you do have, but I bet we are all feeling that right now. If Hayley’s life and death made a positive difference in how you live your life, that is a blessing.

A Helpful Pandemic Review

Again, Scott is not chatty tonight. I did get lots of friend time in today. Two of my more spontaneous friends with short notice went to Boehms Candy in Issaquah with me to support a local flower family. We got gorgeous custom farm to vase bouquets for 20 bucks. I figured if I was getting myself flowers for my anniversary I must get chocolate too. We then sat socially distanced in a lovely shady garden and ate hand dipped Ice Cream bars rolled in almonds. For you local folks, you can support New Garden Farms on Fridays, Saturdays and Sundays, 9:30-3:00 in the Boehms Parking lot in Issaquaqh. You can then very safely support Boehms. For more information on New Gardens click here.

I was telling Scott that people seem to really like my Amazon Review Post. I asked him what I should review next. Several inappropriate suggestions were made. One did stick with me; Toilet Paper. I thought about it and decided, why not? It is a pandemic related topic. It truly is a first world issue, but I do live in one of the wealthiest communitys in the Nation, Sammamish, so it seems fitting. This is my Pandemic Toilet Paper story.

In January, when I still had a job with a non-profit that shall not be named, I was scheduled to attend a conference in Orlando during my Birthday week. I knew that there was no way I could fly across the country and NOT go to Disneyworld. Hayley would be ashamed of me. But everyone I asked did not want to fly that far for Mickey Mouse. But another spontaneous friend now lives in Boston, it was worth a try. I was surprised when she said an enthusiastic “Yes”. She has been one of my biggest supporters this past three years in spite of the fact we were not friends before Hayley’s death. We knew each other’s names because our boys were in the same grade. Shay organized a troop of women that first December to come decorate our house. Besides kind, she is very funny! We discussed sharing a hotel room or getting our own. I am not sure if we had even gone out to lunch together ever. But we agreed to go for it, all in. We agreed worse case scenario we won’t be compatible and agreed to be honest if we annoyed each other. Plus we could do anything for three days. This is what a good sport Shay was. I suggested we have matching outfits for our two days at Disney. I offered to plan it. I had hats embroidered that said “Dawn and Shay do Disney 2020”. Found a Disney shirt that said “Made in the Seventies”, we were 1970 and 1971 babies. I also got us two shirts from Etsy that said “I am done adulting, I am going to Disney”. I had Birthday themed Ears. We arrived on the same day, by bedtime we were not sick of each other yet, so we had that going for us. We spent two days at Disney during a record breaking cold front. In fact it was so cold that Iguanas would lose consciousness and fall out of trees. We were super disappointed only to witness this phenomenon on the local news. We waited in line at 6 am to get tickets for the brand new Star Wars ride. Totally worth it by the way, best ride ever. I was sad when she flew home and the conference started. On my birthday my Mom drove from her home on the west coast of Florida and decorated the hotel room. I don’t remember the last time I spent my actual birth date with my mother. She had been really sick in January including laryngitis up until a week before. She had also surprised me by saying yes when I suggested she drive over and go to Harry Potter Land with me at Universal Studio. She doesn’t do rides or amusement parks. She clearly needed to get out of her house. After the conference we moved hotels, I had already started to feel bad. I was losing my voice and felt like shit. We powered through. Guess who wanted to keep going on the new Harry Potter motion ride and roller coaster? My mother! She surprised herself. We didn’t go so far as buying the Hogwarts robes they sell but we had a great time. I was getting sicker. I was due to fly home on a Tuesday night. On Monday I asked Scott to please make me a doctor’s appointment for first thing Wednesday morning. I flew home on January 28th. At that point, Mom and I had seen a story on the news about a powerful virus spreading in a province in China. In fact while heading home the first case was found in Washington State. We should have known. A freeze in Florida, falling Iguanas, grown women doing Disney and Universal without kids, my Mom riding roller coasters; me super sick on vacation, we just should have known that 2020 was taking a turn.

When I went to the doctor I had lost my voice completely, Scott seem to think this was not a bad thing. She said I had a throat infection, two ear infections and a sinus infections. She tested me for the flu, negative. I mentioned this new virus I heard about. She said that she had been reading everything she could find on it. I asked about testing. She suggested I not get testing, but ordered me to quarantine myself for 2 weeks. At that point testing was only available through the CDC. She said it was not going well and by the time the results came back she was sure I would no longer even be sick. She gave me a week’s worth of drugs. Cough syrup with Codeine, antibiotics, ear drops and a prescription decongestant. I took my stash and happily made myself a home with the dogs in the master bedroom. I told Scott about the quarantine orders. He anxiously asked if I would be okay if he slept in Hayley’s room so that my cough didn’t keep him awake. That is so cute, he was worried I needed him. I pretended to be sad and reluctant, but really I was super happy. The dogs could all sleep on his side, I could watch what and how much TV I wanted, hello, King bed to myself! After a week I was worse. I got a chest x-ray and some more antibiotics. That was the sickest I can ever remember being. Two weeks without being able to talk! Just as I felt like I was turning the corner I got a call on a Friday that I needed to have my pacemaker replaced the next Wednesday. WTF? I explained that I still had a cough. Not a good thing when you are having surgery not on full anesthesia. They had a solution for that and were not willing to postpone. They don’t like it when your battery runs out. I went back to work less than a week after the surgery. Thank goodness it didn’t get postponed even a day as most surgical rooms were shut down by the second week in February. Again, I should have known. Iguanas, laryngitis, and a dead battery. 2020 had arrived.

For those that can remember this far back but February/March was about the time people started to freak out. Most corporations moved to remote offices by the end of the first week in March, schools began to close. Trump said there were only 15 people that were sick, don’t worry he said. We REALLY should have known the minute “China Virus” came out of his mouth. So here is where we move into first world problems. People were going nuts at Costco and Grocery Stores. If you live in the Northwest it was like when we are predicted to get an inch of snow. People lost their minds. Instead of buying all the wine, milk and bread; it was wine, milk, bread and TOILET PAPER. I made fun of those people.

In January, before Orlando, we had a big first world problem in my household. I always buy my toilet paper at Costco, but I had not been that month because work was so busy. We got down to our last roll of paper. We have three bathrooms and the three of us each use a different one. We would have to hunt the roll down. We argued over the roll. We used Kleenex. This is when I learned the awesomeness of Costco Online. If I ordered $75 dollars I would get free two day shipping. Seriously? I never get out of Costco under a hundred bucks, who does? If YOU do, you have issues and we might not be able to be friends. I was able to order a hundred dollars of our toilet paper and it arrived the day I left for Orlando, everyone was happy. God forbid one of these two men would have to go to the store. I vowed we would never run the toilet paper down that low again. So when March hit and the great Toilet Paper insanity started, I was very smug admiring my two huge packs of Charmin, the good stuff. I thought about sharing with some friends, but nope I am not that nice and this was now labeled a Global Pandemic and the McCutcheons would not run out of toilet paper. (did I mention this is a first world problems article?)

Do you have interactions from your past that you just have never forgotten? Things that are not even very important but for some reason they stuck with you and always remind you of that person. Let me give you an example; when I was 20 and attending UW, I was a teller at Washington Mutual. I loved my supervisor, Jill. She was amazing. So funny, big personality, she was over six feet tall with coke bottle glasses. One day during a break in the conference room I was reading a Cosmopolitan Magazine. For you younger folks, a magazine is like a cross between a book and a newspaper. You had to wait every week or month for it to arrive in the real mail. Instead of subscriptions to Spotify, most young women had a subscription to Cosmo. It was a guilty pleasure. We passed it around the Sorority like it was illegal. The entire purpose of the magazine was to make women feel like shit about themselves. The magazines intentions besides advertising every beauty product made, was to tell you how to dress, how to do hair and make up, but most of all how to catch a man and keep him satisfied if you know what I mean. The best part of Cosmo was the monthly Quiz. Topics like, “Are you enough of a bad girl?” “Can you keep him intrigued?” “Is he thinking fling or long-term?”. We are not talking the height of feminism. So there I sit on break reading my issue when Jill walks in and joins me. She said “anything good in there?”. I said I was currently reading an article about how to deal with unwanted hair in unwanted places. Waxing was not really main stream at that point in history. She said “what does it say about nipple hair?”. I did a double take. “WTF, you get hair there?” Jill said “honey you have no idea, you just wait until you are over 30”. I was like ooookkkkaaay, whatever, I will never have nipple hair. So now when plucking my nipple hairs as that 1991 Cosmo suggested, I always think of Jill. Every single time.

Another one of these memories stuck in my brain was an incident with my Dad around 1996. My Dad and I had a complicated relationship over the years. He was not always the easiest to deal with. At this point he had recently married an employee of his that was my age. We were on the outs. Scott and I were married, we had bought our first house in Federal Way, we were trying to get pregnant, and we now shopped at Costco like real adults. We were in Costco near our house when we turned down an aisle and ran smack into my Dad and his wife. Just the fact that this Costco was not close to where they lived and we were on the same aisle, on the same day and the same time was weird enough to stick in my brain. It was very awkward, Scott was not a fan of my Dad. My Dad not knowing what to say, noticed that we both had packs of Toilet Paper in our carts. He made the sarcastic comment, “Oh you two must be doing well, you buy the expensive stuff”. We had Charmin in our cart, they had Kirkland Signature. Of course Scott nudged me because we had recently had a “discussion” about me insisting on the more costly Charmin. Clearly I had prevailed and it was never mentioned again. To this day nearly 25 years later, 14 years since my Dad passed, I cannot buy toilet paper without thinking of that interaction and my Dad. Yes, I have always bought the Charmin. My kids have never in their own home had anything but the Charmin Ultra Soft touching their behinds. Scott learned to pick his battles.

Now that you have been caught up and heard some new relevant stories I can get down to my Pandemic Review. Today I am reviewing Charmin Toilet Paper. By April I was still feeling a bit smug and a little guilty that I had an unintentional hoard of Toilet Paper. Here we sat on our soft white cotton thrones while we watched YouTube videos of people actually having physical fights over the last package of TP in Costco and grocery stores. It wasn’t even Charmin. By May I was getting a little worried. I had promised the men that I would not let them down, I would keep them stocked with toilet paper no matter what. We may not have had Clorox Wipes, but we were going to have toilet paper. I expected them to heap praise on me and express their gratitude. Newsflash, that did not happen. In May I had an 18th pandemic birthday to plan and our stash was starting to run low. Scott would ask if he should buy some at Albertsons on his way home from work where he bought wine. I said only if the brand is Charmin. I think he hurt himself rolling his eyes. Costco had let me down months before with none available online. I was not willing to risk Covid by fighting over it in person at the local Costco when it was just luck of the draw if you were there when they put the pallet out. There has to be people out there that will have toilet paper to use until 2030. I lost track of how many times a day I would check the Costco app to see if it was in stock. I honestly expected the app to have a pop up box that said “Get a Life, we don’t have any fucking toilet paper”. I was also checking Amazon daily, but I was not quite to the point of being a victim of price gouging. Let me go ahead and add now that neither Scott or Henry could care less what kind of toilet paper I buy. When I expressed my pandemic concerns to Scott he just suggested that he and Henry could just go rub their asses on the grass like the dogs do. Not helpful Scott.

Then it happened. On June 5th I had to break down and purchase on Amazon, fucking Quilted Northern. The Charmin Bears were going to be so disappointed in me. Let me tell you it was false advertising. There was nothing quilted about it. It says it is “meticulously crafted for a reliable, comfortable experience”. They lied. I would give Quilted Northern 1 poop emoji out of 5. It is narrow. I have big hands. It was not soft or quilted. Plus they said double roll and it was most certainly not a double. It was like going to an overpriced hipster bar in Seattle, paying for a double and you could still do math in your head after drinking it. These rolls hanging on my wall made me very sad. It is a hard pass on the Northern.

Finally on June 18th and July 1st I was able to purchase Charmin on Amazon. But there was a limit, so I had to buy all three Charmin models of toilet paper. I filled a tall cabinet in our garage with toilet paper, all kinds of Charmin. We will not run out this year. Yet still the 18 year old boy takes the roll off the holder in my bathroom when he runs out, instead of going to the cupboard like a human and getting his own pack. I had told him when storing the Charmin that he was not allowed to use the blue package because it was mine. I said you can use the red package or the green package, but do not touch the blue. Recently I saw him slinking up the stairs with a blue package, I yelled at him and started up the stairs willing to physically remove it from his hands if necessary. He smirked and locked his bathroom door. I used to change his diapers, he really should go with the red package.

The Red Package is the “Charmin Ultra Strong Clean Touch”. This model gets 4 Poop emojis. The roll is huge, so if you are the one that never wants to change the roll this is for you. It is so big it won’t fit in our recessed holder in one of our bathrooms, which is not an issue since no one in my house ever puts the roll on the actual holder. Keep in mind that you can judge a Charmin product by the adjectives used. They all start with Ultra. This is so accurate. The dictionary defines Ultra as “extremist, radical, fanatical”. If this does not describe me and Charmin I don’t know what would. Amazon indicates this is 2 ply. All you single ladies, before you commit to a partner, check their toilet paper, if it is 1 ply, I am sorry you need to “dump” them. Charmin describes this one as “designed for a wash cloth like cleaning”. This was a turn off for me. First you can’t flush a wash cloth and this reminds me of stories of fraternity friends using t-shirts or whatever was nearby when there was no TP, usually a t-shirt of a roommate. You know who you are. It also says it is clog proof. They lie. So 4 Poop Emojis, it is strong, it is a big roll, your hand will not get dirty. I recommend the red package for the men in your life particularly teenage boys, but invest in a plunger.

The Green package is “Charmin Ultra Gentle Touch”. Here we go with the word Touch again. I don’t like the word touch associated with wiping at all. It markets itself as the only one with a touch of lotion. It is dermatologist tested. How did that work? It says it is gentle enough for even frequent wiping. I give the green package 2 poop emojis. I ate Thai food several times this past week, so you need to trust me that any toilet paper mentioning the word Gentle is probably not going to stand up to what your bowels are capable of. For sure never give a roll of the green package to the men in your life. If you do, make sure none of your clothes are laying nearby the toilet. I would not even blow my nose with this crap. The lotion makes it feel waxy, it is not very strong, I didn’t measure but it felt narrow, I got pee on my hand. This is not a good toilet paper for the ladies. Don’t let them fool you with the word Gentle and the female child bear on the package. This TP is for little kids that will probably get shit on their hands if they wipe themselves no matter what kind of TP it is. I wouldn’t even TP a house with this one.

The best for last. The Blue Package. This is what Costco carries. This has been the McCutcheon brand for nearly 30 years. I guess you could call it vintage at this point. The blue package is “Charmin Ultra Soft Cushiony Touch”. Soft and Cushiony is exactly what this toilet paper is. Cushiony is not even a recognized word in the dictionary. It is that special that it needed its own word. I give this one the coveted 5 poop emojis. The marketing describes it as “unique”, “irresistibly soft” and “more absorbent so you can use less”. I only disagree with the use less part, remember Thai Food. You will want a nice handheld pillow of this stuff. The rolls are big, it is soft, it doesn’t shed (you ladies know what I mean) and you will get no pee on your hand. You will not want to spare a square of this stuff for anyone. This is toilet seat down, the best.

In closing I want to say I have figured out the purpose of the Charmin Bears. I always thought that marketing was really stupid mainly because they are not wearing pants and they use the word “hiney”. But actually it is brilliant. It is exactly like the fairy tale, Goldilocks and the three bears. Seriously, your mind should be blown right now. Each of these packages has a different bear on the front of the package. The Red, “Strong, Clean” has the Dad Bear on it. It is manly like sand paper. The Green has the little girl bear on it. It is sweet and gentle, it is a prissy little toilet paper. Notice there is none with the son bear, because he is probably using a t-shirt at the Bear Frat. But the Blue! The Blue has the Mom on it. Because who knows their shit in all families? Yes, that would be Mom. You’re Welcome.

August Amazon Top Five Favorite Things

I really love to write.  It is like talking but it doesnā€™t matter if anyone is actually listening.  I decided to post an article that had nothing to do with my grief or pain.  I just couldnā€™t go there today, but I still wanted to write something useful, so I decided to post reviews for my top five favorite purchases in August from my boyfriend, Amazon.  I hope you find it helpful.  If you donā€™t, just keep it to yourself.

Backstory:

I have been purging the house slowly but continuously during Pandemic August.  One thing I have learned in the process of cleaning out many shelves and drawers and closets, not even close to done, is that we have a lot of Shit.  Shit we didn’t use, Shit that didn’t work well, Shit that didn’t have a specific place it lived so we were always searching for it, multiple items of the same Shit because when we couldn’t find something we bought a new one, Shit everywhere. 

In this process I have made decisions by asking: Do I need it? Do I use it, like in the last year?  Is it a quality item that is going to last a long time? Can someone else use and enjoy it?  Can I recycle it?  I tossed in some Konmari, does it bring us joy?  Yes, I also made Scott thank that pair of boxers with the holes for serving him well before he tossed it.  I won’t quote him directly, but the word “skid” was involved.

Now I can purchase new favorite things because I now have a place to put them.  Some may seem silly, again these are my opinions not yours.  All these items either bring me joy or I have found I actually use them.  Nothing mind blowing, but right now, unemployed during a pandemic, it is the little nonpolitical Shit that I am getting excited about.  I also am writing this entry because Scott now refuses to listen to me when I start my daily show and tell.  The Amazon and UPS man hates me, I was out watering and the dude said, “another package for you”, with emphasis on the “another”.  Whatever, I am keeping you employed dude.  Links to the items are included.

Dawnā€™s Top Five Favorite Things from Amazon purchased in August

  1. Cost- $12.99  Purpose – Opening those Amazon Boxes and popping those air pillows that I can now recycle with my new Ridwell service.  My new favorite thing is a Fiskars Pro Retractable knife.  We were always using scissors we could never find or kitchen knives that was not very safe.  Both items are now very dull.  I decided to invest in a utility knife.  I was skeptical, we own an ancient box cutter that I am scared to use.  It has no safety features and I am very clumsy.  Plus I can never find it.  It has been left outside so it is rusty.  I donā€™t want to risk a tetanus shot.  This new tool has been in my pocket of my lounge pants nearly all week.  Super safe and super amazing.  You need one, trust me.  I always keep it in the same drawer. (we will see if that new healthy habit sticks).  It is also amazing at that Damn packaging a lot of companies insist on using, you know the hard-plastic shit, that usually cuts you.  It breaks boxes down for recycle Tuesday like a breeze.  Click Here
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2. Cost $16.99 Purpose ā€“ Power, tidiness and some laziness.  As my phone has gotten older, it doesnā€™t hold a charge as long, plus I use it A LOT.  Scott and I both have our ā€œspotsā€ on the sectional.  Yes, they both are recliners.  We are THAT couple, we both regret not getting the divider that had storage and drink holders.  I thought it was tacky, now I want it.  I usually have at least 2 devices going during couch time; my phone and a laptop.  Scott has at least 2; iPad and phone.  Under the old way Scott is closest to the outlet.  He has one charger plugged in to the wall outlet that he takes turns using with his devices and it wonā€™t quite reach to his lap, so the item sits on the end table while charging. I use an extension cord over the top of the couch.  I have gotten it caught up in the recliner mechanism many times.  This solution is another new favorite thing.  Anker Power Port Cube.  I love it.  It is tidy, it sits between us on the couch, we can plug in all the things we need to charge.  Plus, we can conveniently use the item while it is charging.  It comes in White or Black if you need to match your dĆ©cor.  I have bought a ton of products from Anker over the years.  The items are always high quality.  The other first world problem I had is that I didnā€™t own a long enough charging cord to use my phone in bed while it charges unless I am on the edge of the bed on my left side.  The dogs donā€™t like it when I turn my back on them.  Instead of paying more buying extra and longer cords I got one of these cubes for our room.  I can put it on the bed and charge and use whatever I need!  Phone, Kindle, Laptop, etc.  I loved it so much I got the small two port version that I have set up on the table between my porch chairs also known as the new Mom Porch Cave.  I have a phone charger plugged in and a small USB powered Fan.  Henry mocked me for the Fan outdoors.  But who is sitting there inching closer to menopause, enjoying the nice breeze on my Mom Porch Cave?  This girl.  Click Here

(Scott is snoring in this photo)

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#3 – Cost – $24.99 Purpose ā€“ Lighting, Laziness, Fun Toy, Saves Electricity Four years ago, I spent months researching (I research everything) backyard string lights.  There are multiple layouts and you want them to stay up once you put the work in.  I had a Pinterest board for the project.  Hayley wanted the backyard to be fun for her Graduation Party.  With my very kind and handy brotherā€™s help Scott made our vision reality.  It was finished about an hour before the party!  If you need to know about String Lights, I am your gal.  Scott spends a lot of time on the back patio in what we call the ā€œhammock of griefā€ (another Amazon favorite thing).  He loves the lights; I love seeing them from inside the house.  I have always had it on a basic timer that worked intermittently.  I noticed that Scott was not using them very much, he turned the timer off since it really didnā€™t get enough sun to be accurate.  It was easily confused.  Turning them on required bending over, he just wasnā€™t using them.  I also didnā€™t like plugging them in and out because, spiders.  This past week our talented handyman installed String Lights on our side deck.  They are attached to the house and a tree and they are lovely.  He had mentioned that a recent client had hooked up hers with the ability to control them with a remote!  Holy Shit that sounds awesome.  Wait, we canā€™t have remotes.  First, we would totally lose it, set it down somewhere and wonā€™t be able to find it and Finn eats remotes.  Then I thought, I wonder if Alexa could turn on the lights??  Sure enough Amazon was my hero again.  I bought an Outdoor Smart Plug Outlet.  We plugged the lights into this new toy.  This also freed up one of the outlets so Scott can run an extension cord to the hammock for his Ipad.  I got him a pink cord.  He is comfortable with pink.  This new toy allowed me to set up zones, like Mancave lights only, Deck lights only or All ON!  All controlled by an APP on my phone or by demanding Alexa do it for me.  I have seriously entertained myself for the last two nights, turning them on and off while Scott is in the hammock.  He is very much over it!  Now we will use the lights more plus the APP can program a schedule, saving energy.  I like going to bed with them on and enjoy the view, and now I can program them from my phone to go off when I am sleeping therefore not wasting electricity.  I ordered more string lights for the Mom Porch Cave.  Very fun and useful toy.  I am trying to figure out how to hook Henry up to the APP and program it to take out the garbage when I ask.  Elon Musk needs to get working on this idea.  Click Here

#4 Cost – $29.97 Purpose ā€“ Organization, Tidiness, Help locate Kitchen tools The first place I started in August in the Great Pandemic Clean Out was the kitchen drawers.  After having sold Pampered Chef and being a huge fan, I had a lot of tools and accessories.  They were all crammed into drawers and it was impossible to locate an item quickly.  Disclaimer, I donā€™t like to cook.  Scott and Henry generally donā€™t like when I cook either.  I am not that good at it and it takes way too much energy that I am lacking right now.  Door Dash is much easier.  I took everything out of all the drawers.  I sorted; keep, donate, gift or trash.  But I still had the issue of the kept items being all jumbled in the drawer.  A standard drawer organizer would not work because the compartments were too small and just didnā€™t fit the odd sized items.  I was using Amazon to search for organization ideas and ran across these beauties.  Adjustable Bamboo Drawer Dividers.  These amazing tools come in a four pack.  I was able to divide drawers to the width needed to hold all the like items.  It was like getting custom kitchen drawers.  Guess what, I donā€™t mind being in the kitchen as much because I now can find the fricking tongs!  I am considering ordering another pack to use in our bathroom drawers.  Currently I use little plastic organizers and that leaves unused space.  When we remodeled our bathroom, we downsized the vanity, so space is valuable.  Click Here

#5 – Cost $102.99 Purpose ā€“ A fun toy to motivate me to cook, cook healthier foods, cook quickly, save money on takeout meals I saved the big, best and most expensive item for last!  I had heard of the Air Fryer craze.  I thought it would be like the Instant Pot.  Many people bought them; many are not using them.  This is where you can benefit from my research skills.  We bought the Cosori Air Fryer Max, 5.8 quart.  There are so many brands, styles and features available on these bad boys.  They range in size and style, from small round units to the huge small oven like ones that do everything but give you a manicure.  I started by asking friends which model they had, what do they like about them and what feature did they wish they had.  I then started reading reviews on Amazon.  I gleaned enough information to know the following:  Nobody ever regretted not getting a bigger one, but lots of people regretted getting the small ones.  People really liked the units with preset food settings.  I found out which ones cleaned up well, hello, the dishwasher not by hand in my house.  Food turned out more successful with a pre-heat option.  The size and shape do matter.  We bought this specific model that I have named Frank, for the following reasons.  The size, 5.8 quart is big enough to make things for 2 to 4 people.  We did not get the big combo oven; not enough counter space and we like our retro looking toaster.  It has a pre-heat option.  Very non-stick and easy to clean.  I liked the white one, everyone has black, be different.  It fits in our cabinet when not in use.  It has 11 preset buttons for us less than perfect chefs.  The square shape allows you to fit more items, you donā€™t lose the corners like in a round basket.  The preset buttons beep and remind you halfway through the process to shake the items in the basket to make sure everything cooks perfectly.  Very positive reviews.  The reason I may love Frank a little more than Scott is that it has me cooking for real, in the kitchen!  Not Door Dash cooking, but real healthy cooking. We have sat down as a family of three and eaten meals together at an actual table more times in the last month than we did all of 2019.  I have only tapped the tip of the iceberg on Frankā€™s talents.  So far, we have cooked frozen food to perfection and in half the time.  Bonus that we donā€™t use the oven since our AC is broken and it is Summer.  The frozen items we have tried and had success with are:  French fries, chicken wings, and cheese sticks.  Scott and Henry have even introduced themselves to Frank.  All these items came out crispy on the outside and juicy or soft on the inside.  I have cut up baby red potatoes, mixed with olive oil and rosemary.  Tastes like at a restaurant.  Sliced zucchini comes out perfect.  The best thing so far has been not wasting as much food when we do take out.  It reheats leftovers and leaves them tasting like you just picked those fries up.  Trust me you need your own Frank.  I have been told it cooks all kinds of meat and seafood.  It even can bake.  That will be fun to experiment with.  There are hundreds of ideas on the internet with easy instructions.  You just need to know the temperature and the amount of time.  My goal is to become braver and adventurous with Frank in September.  Click Here for Frank.

My Grief Calendar

****warning, this post is very raw and emotional, Hayley’s death is a part of the writing. If this might be a trigger for you, please skip this one****

August 6th – Hayley’s service. I am not ready. If we don’t go, it can’t happen. I have not written my speech. I am running out of time. If the service doesn’t happen none of this happened. Sara is here, I come down the stairs and see it on the counter. I have never seen it before. I knew Sara was bringing it. It is blue, her favorite color. My knees buckle. What is left of my child is inside that blue jar. In the car, No, this can’t be happening. Where are all these cars going? So many people. So much work done. It is beautiful, the red barn, photos, flowers, glassy babies, a giant canvas of Hayley, Scott is going to faint, get him in a private room, he is breaking down. No, not now, he can’t do that now. He want’s Rob. Kevin gets Rob. Henry’s friends circle him. It is hot. Where are all these people going to sit? This place seats 200. The owner says she stopped counting at 500, they are still trying to figure out where to put all the cars. I don’t understand what is happening. My Uncle and Aunt are here. The bracelets. The programs. The cookies. The food. If Scott and I don’t take our seats it can’t start. If it doesn’t start it won’t be over. So many people. They all want to talk to me. I don’t remember who, or what I said. Sara puts food and root beer in my hands. There is a hedgehog. A cat. What is happening?

September 8th – Our wedding anniversary, 1995. Hayley is not here to bug Scott about what he plans to do to celebrate. Our plans from that day. It is not happening the way it was supposed to. What is there to celebrate?

October 31st – I was the best Halloween Mom. Hayley should be at Western. We decorated like it was Christmas. Always had a party. Always homemade Henry’s Costumes but Hayley’s was always ordered and exactly what she wanted. Henry was the best sport. We had Epic Halloweens.

Thanksgiving – We had started a tradition in 2012. Brunch/Lunch at Salty’s at Alki. So much food. Then a movie. Several years of Harry Potter, Hunger Games, a Disney movie, a Star Wars movie.

Christmas Eve – Hayley kept us on task with our traditions. We always went to the zoo during the day. We would feel like the only ones there. Hayley could sit with her orangutans friends. Henry got to help the keeper feed the penguins. Pick an ornament and stuffed animal in the gift shop. Then into the minivan, White Christmas on the DVD player, Hayley loved the tap scenes. Dinner at Burgermaster. Home, matching pajamas, bake cookies, go to bed.

Christmas – Pajamas all day. Grateful and happy kids. Play, eat and nap all day. Robinsons, Chinese food, and poker games. Lots of baked goods.

January 1st – Happy New Year! Another year without Hayley gone by. Another new year she doesn’t live in. Time for New Year’s Resolutions. I don’t know, how about just Breathe.

January 24th – Happy Birthday to me. Hayley liked to make a homemade cake. She would make sure I felt loved and celebrated. My last Birthday with Hayley she made me cards. “Open When…” Cards. About a dozen. I still have not opened all of them. I don’t know why, maybe once I do it is one more thing I don’t have any more. Some of the ones I have not opened, “Open when you need to know how much I miss you” / “Open when you need to know how much I love you” / “Open when Dad is being an asshole”

February 1st – Happy Birthday Scott. Hayley liked to make him a cake. Daddy’s Girl.

February 14th – Always my Valentine. I always put together Valentine’s gifts for the kids. She told me that I would always be her Valentine. Henry told me all the time when he was not a teenager, “I will always be Mommy’s Sweetie”

Easter – We always as a family colored Eggs. Hayley usually used the white crayon to write the F word or draw a dick. Always went all out on the Easter Baskets. Decorated the house. The boys don’t notice when I don’t.

April 29th – Happy Birthday Hayley, Forever 19. Planned delivery date. Hyper speed labor. Did not know, boy or girl? Hayley Storm or Taylor Scott. 3:30 pm it is a girl, perfect

May 8th – Henry’s Birthday. So happy that we were able to wait, she did not want to share a birthday with a sibling. Hayley picked the middle name for a girl. Kept it a surprise again. Another planned delivery, another high speed labor, complications. Is it a boy or a girl? Henry Scott or Katherine (Kate) Belle? It is a Boy, perfect, one of each. Our family is 100% complete. What will Hayley think when she gets here? 6:30 pm delivery. Hayley arrives, “Why is he not a sister?” Pure love on her face, he is her baby. She will protect him forever. Hayley was the only person that could make him smile for the photos I insist on taking on birthdays. Again, feels like someone is missing.

Mother’s Day – She thought I was the best Mom ever.

Father’s Day – Again, Hayley made the plans for this day. I am so sorry Scott.

July 4th – The last day we spent doing something as a family. The first 4th after her death, Henry was carjacked. The time when we did not know how badly he was hurt was a glimpse into what it would be like to have my life be over. July 4th kicks off the month from hell.

July 11th – Her surgery date. The date she was looking forward to and was nervous about. The last photo taken. The last time I saw her smile. The start of two weeks of pure Hell. The day I wish I never let happen.

July 11th – July 15th – Why can’t I make her better? Why can’t the doctors help? What are we missing? Her constant pain. Calling, messaging every doctor we know, please help us, we need help, we can’t get help. Something is wrong. Please help us.

July 16th – Her last day at home. Her last day in my arms. Her last day in her bed. Her last shower, helping her, her laying on the bathroom floor mustering the strength to get dressed, her repeated apologizing that she was putting us through this. Our last conversation, which ended with me saying “Stop apologizing. Don’t you know how much I love you? Hayley look at me, I adore everything about you”

July 17th – The pain. The family room. The dogs. She leaving the house. The ambulance. The diagnosis. The mistakes. The ICU. Kissing her goodbye thinking everything would be okay now. Dad is staying with you, I am going to check on your brother. Telling her not to worry, it was all going to be better now. They were going to fix her. Going home to reassure Henry that everything was going to be okay now.

July 18th – 1:00 am, the call. Scott, what is wrong, tell me what is wrong. Screaming for Henry, Call Terri. Your sister is having a stroke. Scott why can’t you talk? Racing to the Hospital. Trying to get in to a locked building. Elevator. Rounding the corner to her room. She is naked, what are they doing, they are doing CPR, screaming her name over and over. Losing control of my bladder. Being restrained. Screaming her name from the floor. Scaring everyone in the ICU. Nurses, doctors “she asked for you, she was alert, “where is my mom, call my mom, I need my mom” It happened so fast. I didn’t get there in time. I should not have left. Why did I not understand what could happen? Surgery. She may be able to hear you. Begging her to wake up. Surgery did not go well, too late. Why do her eyes look like that? I know she is gone. Don’t touch me. Nurses and staff won’t look me in the eye. My brother and sister in law. My mom is here. Sandy is here. Kevin setting up a Caring Bridge Page. Time to do tests. What tests? Three tests to determine if she was alive. But she looks alive, she is warm, I can touch her face, hold her hand. I just need to sleep, I will wake up and this will not be happening. People are here, friends, family, pediatrician, surgeon, it will be okay now. Signing paperwork. Who will tell Henry? I need Henry here. Looking at Scott, no words needed.

July 19th – No changes. More tests. I won’t look. It won’t be true. More people. Food. Sandy taking care of Henry and the dogs.

July 20th – We need to talk. Scott, Me, Hayley’s pediatrician. Small room, boxes everywhere. Cold doctor. She is gone. I don’t understand. Sign a DNR. I don’t want to, are you sure? Poor bedside manners. Scott and I, making decisions. Wait, she would want to donate her organs. Scott find that DNR. The Organ donation team is here. Dawn, you have to answer their questions, you are the only one that will know all the answers. It is time to let her friends say goodbye. Giving a list of those friends. Hiding in the family room, Scott showing his strength, greeting each girl and their parents. Letting them say goodbye. Her best friend is in Wyoming and driving back, we won’t sign anything until she gets here, we have to wait for her. Scott stronger than I ever imagined. I was hiding. The date on her death certificate. A piece of paper, file it with her birth certificate. The organ donation team is here.

July 21st – The team. Watching over her. Tests, lots of Tests. Updates, searching for matches. Her heart is not strong enough to donate. We can go another day and try to make it stronger. She must donate her heart, I won’t accept anything less. She has the best heart in the world. Matches found, matches lost. No, we will not leave the hospital until she does. Where is Henry? You are only 15, you need to say goodbye to your sister. Yes, we will go another day.

July 22nd – Crying, laying across her, if I cover her with my body she will be okay. Who is in the doorway? I don’t know him, he is crying. I approach and I see his badge. It is the anesthesiologist that did the epidural on the 11th. He wants permission to see her and say goodbye. I hug him and give him what he needs. More tests. Matches for Kidneys. Canada will take her liver. Her heart is not strong enough. Will you wait another day? Yes we will go another day. More goodbyes. Hiding. Touching her. Mementos. My brother and sister in law, the friends. So many friends, people are there, I don’t hear them. I only see Scott and Henry and Hayley. More tests. More planning. More watching. More goodbyes. Amy, Lacey, Julie. Kind Nurses. Talking about Hayley in the present tense. Touching her, playing music for her. We can’t risk losing the perfect Kidney matches. I won’t risk that for her heart. Can we try one more night? Yes.

July 23rd – We have a match for her heart. We have a doctor willing to take a chance on it. It is the recipients only chance. Procurement Surgery is scheduled at 5:00. The panic, time is running out. This is really happening. Meeting the surgeons. Private plane waiting for her liver. No braids, undo it. My hands in her beautiful hair. Her hands that look like mine. Her matching mani and pedi to mine. Yellow socks. Singing you are my sunshine over and over. Saying goodbye, but not really believing it. Don’t touch me. Scott and I alone with our daughter. No words. Not reality. Scott is crying. I see Scott but he is 27 and he is cutting the cord and he is holding his baby girl. Panic, this can’t be happening. Scott. This is not happening. It is 5:00. No. I am not ready, they need to wait. They can’t wait long. Other lives are waiting, other families are waiting. The Doctor disconnects the machines and his hands keep her breathing. She is still alive. I put my head on her chest and listen to her heart beat. Her nurse, Brittany, in street clothes. The bed is pushed out of the room. Friends and Family, I don’t know who was there. We walk behind her, the top of her head visible, her beautiful hair. Brittany holding my left hand, Scott holding my right. A sad parade. No this is not happening. It can’t happen without my permission, I am the Mom. She needs to come back. Scott make this stop. Our parade stops at the elevators. Amy explains the timing. Brittany promises not to leave her until she is in the hands of the surgeon. Amy will not leave her, she promises. The elevator door opens, NO. I watch my child enter the elevator. Please NO. Scott make this stop. Please NO. The door shuts. The elevator light shows down, it stops on the surgery floor, the number flashes. Our group stands there. I walk back to her ICU room. It is empty, it is quiet. My brother, taking my Mom. What do we do now? Scott asks if I can ride with Terri, he would like to drive home alone. I am scared he won’t make it home. It is sunny, super bright, it hurts my eyes. As we pull out I see Brittany walking to her car. I yell goodbye and thank you. I am home. I don’t know where Henry is. I am on my spot on the couch. People are here. I don’t remember who. Lots of food. Flowers. I watch my phone. A message from Amy, the surgery is happening. The liver is perfect. No on the lungs. The heart surgeon is there, he is very happy, the heart is perfect, he is taking care of it. That must mean the recipient is close. Who are these people? Do they know anything about her? Do they know how special she is? I can’t think of the mechanics of what is happening. If I do I will throw up. Another text. All good news, we made the right decisions, her heart will continue to beat for another. A final call, the surgery is over. My brother took care of the rest. I can’t remember who, time, how I got to bed. Who fed the dogs? Where was Henry? I can’t talk to Scott. When I look at him I see my pain reflected back at me. I feel alone. I don’t feel like I am at home. Nothing feels real. I don’t understand what has happened.

July 24th – Other families celebrate, their loved ones will live because of my child. It is sunny. How can it be sunny? Where is Henry? My Mom flies home. What do we do now? We need to do something? I need something to do. We will have a vigil for the recipients. They need to survive this week. I can’t handle it if they don’t survive. Order the candles. Lori makes it happen. Will her friend sing. This is about the recipients, I will speak, I will tell everyone we need to think positive thoughts that they survive. I will plan it. I must keep moving, I must keep busy. Remember the BE lessons. That was one of our things. I did not know how rare donation was. More people need to be like Hayley. An Idea, a movement. I will plan it. If I have something to do, I can’t think about it. Where is Henry? Scott make it stop. More food. Friends for life, taking care of everything. Henry calls it the magic cooler on the porch. Food just keeps showing up in the cooler. It gives us something to look forward to. I don’t understand what happened. What went wrong? Why could they not save her? What did I do wrong? Does everyone from the previous week know she died? Do they care? How will I survive?

Grief 101

It seems to me that people put a timeline on grief. Just the fact that we have been taught that there are stages of grief implies that there is a set path. Numbering the stages makes you feel like there is a beginning, a middle and therefore an end. Nothing can be further from the real truth of Grief. The five stages of grief ; denial, anger, bargaining, depression and acceptance were identified by the book “On Death and Dying” written by Elisabeth Kubler Ross in 1969. Elisabeth had good intentions but it has been argued that her original goal of having those in medical school understand what someone may go through when ill and dying has actually caused harm. At one point she revised her findings to include 7 stages. If you google the “stages of grief” you will find information talking about 5, 7, 8 and 12 stages of grief. Everyone always has their own opinion, right? What Elisabeth did accomplish is opening and encouraging conversation about grief, a topic that most doctors did not address and many people suffered in silence. But by labeling grief it became a prescription for how we are supposed to act and feel when suffering loss. But the process is not linear it is more like an unpredictable storm (yes I worked her middle name in there). Stages of grief make me feel like the process should be like a ladder. If you move up the ladder one rung at the time you will arrive at your destination or your goal. So when people go through stages of grief out of order or repeat stages they feel that they are not getting anywhere, they are not following the correct path and they are doing it wrong. What is wrong with me and how do I fix it? I am a fixer, I don’t think I will get healthier until I truly understand and accept that I can’t fix this.

There is no wrong way to do Grief. Sometimes YOU don’t do Grief, Grief does you. This is the unpredictability. The unpredictability of the process includes things like unexpected emotions, triggers, other’s expectations, and a million other things. It is a physical process. Many people, including professionals that we look to for help and answers, view grief as a form of mental illness. It is not just emotional and mental, it is truly physical. Grief does a number on your body. WebMD says “It batters the immune system leaving you depleted and vulnerable to infection. The heartbreak of grief can increase blood pressure and the risk of blood clots. Intense grief can alter the heart muscle so much that it causes broken heart syndrome a form of heart disease with the same symptoms as a heart attack.”

For the past year and a half, I posted less and less on this blog. I had to find a job. Then I had a job. I had to prove myself. If co-workers or people in power were to read how broken I am I believed they would think less of me, they would expect less of me. So I didn’t hide my experience, but I worked harder than normal to prove that it would not impact my ability to be successful in my role. Well, I think I wasted a lot of good writing time. At the end of June I lost my job. It is not clear why. My metrics and my benchmarks placed my event and performance in the top 10% nationally. Two men in a position of power made this decision. They took away my distraction and my purpose for getting out of bed every morning. They both lack emotional intelligence. The parts of my grief that might make my job challenging at the same time made me good at the job. I was able and really couldn’t help being empathetic to people I met suffering from the disease or impacted by the disease. Having raw emotions always at the surface made me vulnerable to people and allowed me to make strong personal connections. Fundraising and creating awareness for a cause is all about building relationships. I found that by sharing my experience with some constituents and volunteers, that we were able to connect on our common emotions. I may never know why or if my grief played a role in my job loss. I now have to grieve the loss of my job and what that means for my family financially and my stress level. Stress is the mechanism that makes what you experience emotionally and mentally become physical. Stress raises your blood pressure and increases inflammation in your body. Don’t discount the physical aspects of grief, they are truly real. Also, remember grief is not just the loss of a loved one, but can be felt from a divorce, a loss of a job, or a global pandemic!

The stages of grief make many sufferers feel they are doing it wrong. It is completely normal for humans to try to find an answer to every question, we need things to make sense, we need an explanation, we need a plan and when we don’t get it we think we must not be asking the right questions or that some how it is our fault. We could write an entire blog just on how mental health has been historically ignored and not taken seriously. I don’t believe there have been huge strides n the treatment of grief.

Like having a dictionary to define our vocabulary there is a publication to define mental illness. It is called the Diagnostic and Statistical Manual of Mental Disorders or DSM. (disclaimer, I am not an expert on mental health, I am not an expert on publications, I am just sharing what is helping me understand what I am dealing with and therefore maybe help you) I believe that we are on the 5th edition of the DSM and it was published in maybe 2012. The DSM was criticized early on as not having a lot of science behind it. It seems to me it was more of some random man’s explanation of what was to be considered normal or abnormal in our society. Up until 1974, homesexuality was listed in the DSM as a mental disorder. Don’t even get me started. I feel like we skipped pride month this year.

I do actually have a point here. Since the “stages of grief” book back in 1969, there really has not been a focus on treating people for grief even though we have scientific proof that it is a real thing that disrupts your life and impacts your physical health. Recently there is a new “diagnosis” that I have self diagnosed myself with. (Thank you WebMd and Mayo Clinic.org) I believe that I am suffering from “Complicated Grief Disorder”. For some reason, I feel better having a name and label for the living hell that I walk through every single day. See we humans love to label things. (I also own an actual label maker and it is one of my favorite things. I remember a day Hayley took it and labelled just about anything she could find including, her brother, the dogs, chargers, food, and more. I still find some of those labels) If we can label it maybe we can control it? Complicated Grief Disorder or also labelled Complicated Bereavement is a real condition, but it is not listed as such in the DSM, but what is hopeful is that it is listed as a “condition for further study”. Okay, let’s do that.

Okay, you are probably asking, what is the difference between regular grief and complicated grief. It seems to me that it is defined by the length of time someone is feeling it and how negatively it impacts their ability to function. It feels to me like an attempt to categorize people that don’t follow the nice, tidy and linear path of the stages of grief. Guess how long you must be suffering to be defined as “complicated”? The DSM says 12 months, some articles I found said if someone is still struggling after 6 months they are now at this escalated definition of grief. Are you fricking kidding me? My 19 year old child died. I should feel recovered after 12 months, that is insane. I don’t know how that time period was decided on, was it that you have experienced every month of the year without your child so now you should be accustomed to your new normal? I know you may be feeling shocked like I was, but be honest with yourself, have you put a time limit on your own grief or the grief of people you care about. Have you thought to yourself, it seems Dawn is getting worse not better, it has been three years this week, shouldn’t she be better? How long do you perform the typical support activities? How many meals did you make for a grieving community member or family in the first three months after it happened? How many have you done that after the first year? Most people that suffer the loss of a child will say that the 2nd year is worse than the first. I am not criticizing, I am just trying to get us to see our own false or unreasonable expectations of ourselves or others when it comes to grieving. The most powerful thing a person can do is show support for another person in pain. My hope is we can all learn from my journey.

Here are the symptoms of Complicated Bereavement, I think this sounds a lot like just plain normal grief. Some people may not have all of these, some may only have a few symptoms, but their grief is no less real and no less painful. Don’t judge someone’s pain by their symptoms. I have made the mistake of thinking grief will fade with time. That is what I experienced with the death of a friend, my stepmom, my dad and my grandmother. I don’t think that is going to happen for me and Hayley.

The signs of complicated grief include:

  • Obsession with the departed person, expressed through speech and behavior
  • Deep, unbearable sadness that never seems to lift
  • Pessimistic expressions of doom, gloom, and despair about life in general
  • Irritability and a hair-trigger temper that makes the person difficult to communicate with
  • Sleeping problems (insomnia, or sleeping at odd hours)
  • Lack of attention to grooming and personal appearance
  • Refusing to leave the home
  • Persistent anger and bitterness toward the world
  • Withdrawal from social interactions and activities the individual used to enjoy
  • Denial and defensiveness when asked about the grief
  • Distracted performance on the job, or an inability to engage with or take interest in others
  • Worsening of any preexisting mental health conditions (depression, PTSD, anxiety disorder, substance abuse, etc.)
  • Strong attachment to mementos and reminders of the departed person or, conversely, a strong aversion to those reminders
  • Inability to manage daily affairs in a wide range of contexts (work, school, financial, parental, etc.)
  • Behavior that seems reckless, impulsive, or potentially self-destructive
  • Talk of suicide, or actual suicide attempts

I can count 8 of these symptoms for myself. But as I am reading this, a lot of these symptoms sound a lot like 2020 and Covid Quarantine, what do you think? I wonder what that will mean for all of us. You all may be suffering from some amount of Grief right now. This may not be a bad thing, it may make us more empathetic in general.

I started this entry trying to understand where I am at today. Today was the anniversary of the date I watched my daughter die. Maybe if I can start defining my symptoms I can come up with solutions. I like to make lists, maybe I can have a grief to do list. My counselor has asked me what do I think recovery will look like. Because ultimately the goal is some form of recovery I guess. But I can’t answer that question. I can never imagine recovering from the loss of Hayley. Maybe I need to redefine my goal. Maybe recovery won’t be an option for me. Can I live with that?

I will leave you with some tips to help the people you care about cope with their grief. Remember this may not just be death, it could be the loss of a job, or the loss of what we considered normal. Quarantine, fear of getting sick, wearing a mask, and so on. Covid is the death of our generations “normal”. We may need to grieve before we can accept and be productive again.

Don’t ask someone “how are you?”. I have seriously ran out of adjectives to answer that question with. Instead, ask “what are you feeling today?”

Let us talk about our loved one as much and as often as we want. We are terrified that you or we will forget about that person, that their life did not have meaning. If me talking about Hayley makes you uncomfortable, that is on you. She lived, she is as big of a part of me as she was when she was in my womb. I don’t want to worry about clearing a room because I mention her name. In general people like to talk about themselves. Grieving moms want to talk about their children. Give them that chance. If you knew Hayley, don’t be afraid to bring up a memory you have of her. If you didn’t know her, ask me a question about her.

Try not to say “you will get through this” because honestly I don’t think I will. When I hear that I feel like a failure. Instead maybe say “we are in this together” or “I am here to support you on this journey whatever that looks like”

Don’t say “let me know how I can help”. We barely have the energy to make daily decisions. I can’t think of how you can help, I also don’t want to be a burden, I don’t want to hear a courtesy invite, and it may be all I can do that day is breathe, I can’t also come up with an answer for you. Be specific, not open ended. “Can we have socially distanced coffee on Thursday or Friday?”. If I can’t say yes, make sure that is okay. You can say, “Are you available for coffee on Thursday?” me, thinking well I am unemployed so probably yes, but will I feel like doing that on Thursday? “Great if you are available why don’t we plan on it at 10:00. I will call or message you by 9:00 to see if you feel up to it.” Let the me know that it is okay to say no, and that you will keep asking and if I never say yes, that is okay. Don’t make it about you. It is not about you. You can also say “I am going to the store today, what can I pick up for you and leave on your porch?”

Grief re-writes your address book. People that you have known for years may not be the people that are capable of supporting you. Be open to new people. Some of my biggest supporters never met Hayley.

Don’t always feel you need to fill the silence. I am so bad at this. I am a conversation filler! I have always felt silence needed to be filled. It doesn’t. There are times when I just need you to sit with me.

This is a big one. Don’t compare losses. I am so guilty of this one. Try not to judge people. The loss of a baby is just as traumatic as losing a 19 year old. Don’t compare your loss to mine. Never ever minimize your feelings or feel that you don’t deserve to feel as bad as me. A perfect example is suicide. A mother that lost a child to suicide and a mother that lost a child in any other way are exactly the same, they are a grieving mother. Again, don’t judge.

Dates will be hard forever. Holidays, birthdays, anniveraries, etc. Own it. I thought it is just a date, I should not let it have this much control over me. It does, accept it, plan ahead, take the day off work, let your friends and family know if there is anything they can do to help that day. One year you may need to be distracted, one year you may just need to try to sleep through it.

I saw this one recently on another grief blog, I wish I had practiced this one, maybe I would not be still struggling with my weight. People will bring you food. It is just a thing. Don’t feel guilty if you don’t eat it, and in my case don’t feel guilty if you do.

Death makes people uncomfortable. Expect awkward moments and insensitive comments. Cut people some slack.

Triggers are a real thing. They are not always obvious and you never see them coming.

Never say to a grieving Mom the following statements, if they say it first it is fine, “they are in a better place”, “God had a plan for them”, “they are no longer in pain”, Don’t assume they have the same religious beliefs as you.

Do not say “I can’t imagine what you are going through”. First that just makes me feel jealous of you and instead of saying you can’t, how about you try to understand what I am going through? True love and support always starts with the effort to be empathetic.

Please don’t say “everything happens for a reason”. There is never going to be a reason I can accept for why Hayley died.

Do not ever start a sentence with “At least”, trust me it won’t end well. Don’t say “at least you have another child” or “at least you are young enough to get pregnant again”

Do not ever speak for my child. Do not say “Hayley would not want you to be sad all the time” “Hayley would want you to be happy” Using our children to put pressure on us is just wrong. You don’t know any of that. Hayley was one of the most emotionally intelligent people I have ever met in my entire life. She would understand that I am going to be sad all the time at the same time she would understand if something makes me feel happy too.

Again, because this is a big one, don’t ask how you can help. I won’t always know that answer. A grieving person doesn’t know right away what they need, they just are trying to take the next breath. Be specific as possible. Remember that most of the favors and support stop after about 3 months but we need help and support for so much longer

Try not to make generalizations like “you are so strong”. You may mean it as a compliment and sometimes it does feel that way, but more often it means I am functioning well on the outside and now I feel like I can’t let you know how bad I am doing on the inside because then you won’t think I am so strong. What is even worse is saying “I don’t know how you do it. I could never be as a strong as you. If it was me I would just curl into a ball, I wouldn’t be able to get out of bed. If it was me I wouldn’t be able to function at all.” What I hear is that I am grieving wrong or not enough. If I am doing “well” I must not have loved my child as much as you evidently love yours. If I get out of bed that day I am not grieving enough or I didn’t love her more. Trust me, you don’t know what you are capable of until you have absolutely zero choice. I remember telling both my kids at different times to try to make them not risk their lives and make good choices by telling them “if something happened to you I would die”. Yikes, talk about Mom guilt. But I felt this way. I still feel that death for me would be so much easier than feeling this pain every day. But you will find a way to be “strong” whatever that looks like. If you have another child you still have to be Mom. If you don’t get out of bed and go to work, you don’t get a paycheck and you can’t pay your mortgage. Are you going to let that happen to your family? You will be that strong. It is not a contest, Karen. Don’t make it one.

Do not be silent. The thing that has helped me the most over the last 3 years has been all of the simple support from so many people. More than I could ever count, more than I could ever say thank you for. The things that have kept me going are the responses I get from Facebook posts, or blog posts. The comments and notes. But not just that, the random text or message. Hey I was just thinking of you today. Hey, I was just thinking about Hayley today, I really miss her. This happened to me today and it reminded me of the time Hayley and I…. I wish I had known Hayley, she sounds amazing. I hope you and Scott and Henry are doing the best you can. Even an emoji or a heart is such a lift, such a feeling of not being alone. Feeling alone is one of the hardest symptoms of grief.

Be Kind. Be Funny. Be Real. Be Empathetic. Be Honest. Be Aware. Be Open Minded. #belikehayley

A Letter I gave to Hayley on her 18th Birthday

I gave this letter to Hayley on her 18th birthday. I have worried she didn’t know how I felt. I am glad that I had written it down for her. After Scott and I read the letter tonight, we weeped on the couch. We agree that all we need to do is change “I Love” to “I Miss”