Hayley's Mom

Seriously?

I am so annoyed right now that I had to get up at 4 a.m. to write.  Those of you that know me well know that there are few things that will ever get me up at 4 a.m. even under ideal life circumstances.   I have struggled with making my journal public.  But I also found that if I was not writing from the mindset that someone is reading this, I just don’t write.  I find that if I know someone is going to read it, I am much more thoughtful and honest with my words.

After writing Zombie Mom, I sort of freaked myself out not to mention pretty much anyone that read it.  All of it was 100% accurate.  It is how I feel.  So hopeless.  Physically I feel like I have been deteriorating at a fast pace.  I live with a pacemaker and constant awareness of all things cardiac.  I am at high risk for cardiac events, blood pressure issues, arrhythmia and heart rate issues.  So these physical red flags are huge stress markers.

It has been 8 weeks since I left the hospital without my daughter.  Initially I had a prescription for Xanax before leaving the hospital and was using it steadily.  Lately I have found I can do without most of the day if I am at home.  As someone that has struggled with insomnia for years you can imagine how this situation made that issue even worse.  I have said before the hardest times are from around 4:00 pm until I can finally sleep, usually anywhere between eleven and three.  I knew from past experience that this lack of sleep could spiral out of control quickly.  A long nap during the day was becoming a habit and I literally could not function without it.  This left me awake during my most vulnerable times.  I have felt like I have been outside of my body, moving slow, and just physical bone deep fatigue.  All of these symptoms have gotten worse.  These physical sturggles have a direct effect on my mental and emotional state.  I have felt so hopeless this past week.  Before I hit the publish button on Zombie Mom,  I made a doctor’s appointment.  I knew my friends would demand it.  I can name a couple that, pardon the crude phrase, would be up my butt immediately until I had an appointment.

So yesterday I was in the office again of my beloved primary care physician.  I told her about my pacemaker check up.  I showed her the one cardiac event that triggered the pacemaker to record.  That event took place at the exact time I watched my daughter die and the attempts to save her.  The scientific side of my mind (not really a side, maybe a small piece, was not my best subject in school) found it fascinating that I could view on paper a glimpse in time.  I could hold in my hands and see in black and white exactly how my heart responded to the absolute most terrifying and tragic moment of my life.

I told her about my symptoms.  I told her my biggest worry was gaining 30 pounds in 6 weeks.  I feel so uncomfortable.  My joints hurt.  I feel disconnected from my body at times.  My sleep is not ideal.  My fatigue is mind numbing.  I struggle to find words when speaking.  I want to lay completely still and cannot get up without a struggle.  Everything is a struggle physically.  When I approached a friend at her doorway a few weeks ago, she immediately said “are you hurt?”.  Nope, just moving slowly, probably having a Fibromyalgia flare up.  Fibromyalgia is a painful autoimmune disorder that comes and goes like the tides.  Traumatic situations can trigger really bad flare ups.  You don’t feel like moving because everything hurts.  Fatigue is your enemy.  I cannot think of a more traumatic event than losing my daughter.  A flare up was my own self diagnosis except for, holy s#%t, 30 pounds in 6 weeks.  I don’t have anything but sweats to wear and this new weight is all in my stomach.  I look and feel overdue to deliver a set of 10 pound twins.  Not to mention my panic and horror when I realized I weigh at least 20 pounds more than my 6 foot husband.  So wrong.

The first thing my doctor said was, you are probably feeding your grief with food that makes you feel good.  Ok, yes I have had a sugar addiction for a long time, but this was different.  In the past I did not blow up like Violet Beauregarde in Charlie and the Chocolate Factory. She looked at my blood work.  “Your thyroid is fine”.  Dammit, that is an easy one to fix.  Okay, what else?  I told her the cardiologist nurse mentioned edema, extra fluid and particularly worrisome, fluid around my heart that could be caused by “broken heart syndrome”.  Yes, it is a real thing.  The meal train we received has been amazing, but I just could not grasp that it was 30 pounds good.  An image came to mind of my friends lining up at my porch with bowls in their hand and pouring the food into a trough on my porch where I could waddle out and eat like a prize 4H Hog.  (this is where I wish I could draw cartoons)

Her response was I know you have been getting no exercise either.  Nailed it, curled in a ball on the couch does not count as cardio.  Okay, I didn’t go to medical school, but I know that this is not normal even during a time that is anything but normal.

“How’s your sleep?” she asked.  I answered with the very medical term of “shitty”.  I said “Shitty, even though you prescribed a new sleep drug”.  I reminded her that the pharmacy specialist on staff had called me to help me work through my medications and to find a crutch for me during this slow walk through hell.  I remember rejecting the obvious sleep aids like Ambien.  I had been addicted to Ambien in the past and did not want to go down that path again.  I Ambien posted on social media, shopped Amazon Fresh and had no recollection of some pretty bizarre nighttime behavior.  As much as my friends enjoyed reading what I wrote during the night, I did not want to go down that path again.  I was already relying on Xanax to keep me from losing my mind completely.  Images of Heath Ledger came to mind.  Ambien is a dangerous drug to mix with anything.  I already take two other medications for Fibromyalgia and the depression that goes along with chronic illness, pain, your dog dying, a friend dying, and losing your job.  She was a great listener, I have worked with her before to balance my heart and fibromyalgia medications.  She prescribed me a sleep aid with instructions that said “take one-half to one tablet by mouth at bedtime as needed for sleep.”  Terrific.  I can do that as I went straight for the whole tablet.

As I mentioned when the sun goes down and the clock says Hayley should be home in her bed I struggle with the reality of our situation.  With this medication I could usually fall asleep and stay asleep.  I could generally sleep 6-10 hours, waking when I needed to.  Not having to work right now has been the one thing that I will forever be grateful for.  For Both Scott and I.  With the financial weight partially lifted by the go fund me page that a friend set up, we have felt at least some semblance of peace and it has allowed us to grieve at our own pace.

When I could not name this drug, her fingers clicked away on the keyboard.  I watched her slouch suddenly, shake her head and do this little hmm, hmm sound she does.  “Are you taking the Remeron?”  The what?  Remeron, sounds like something you see a commercial for that you might take as a suppository.

I said “do you mean the sleep aid, the pharmacy gal recommended?, does that cause weight gain?”  She said absolutely, it is one of the “if this happens stop taking it” side effects.  She said I would think 30 pounds in 6 weeks qualifies as “rapid weight gain”.  With your other health issues that is a huge problem.  I groaned at her usage and emphasis she placed on the word huge.  I slumped in relief because for once in my life one of my medical issues had been solved in one doctor’s visit.  Not so fast.  She then explained that the problem was that this medication is not a sleep aid.  Yes, it will make you drowsy, but it is a strong anti anxiety drug.  Wait, what?  I am already taking Xanax as and needing less of that………..ooooohhhhhhh, I thought I was getting my shit together during the day, it was that medication doing it’s job huh?  Probably.

Here is the rub.  Mystery solved.  But I now have an extra 30 pounds on top of the 50 I already needed to lose.  That 30 pounds is not going to just magically go away when I stop taking this drug.  On top of that I have to wean off of it.  She then wants to add a sleep aid and she says this is not the time to worry about sleep aid addiction.  That is the least of my worries.

Terrific, I was already failing miserably at weight watchers prior to the bottom dropping out of my life.  I reluctantly admit that as I type this I am enjoying my newest comfort food, a root beer float.  The string of swear words that were going through my head would have made my potty mouthed daughter proud.  I am pretty sure they were loud enough for my doctor to hear because she gave me another shake of her head and hum of sympathy.

What has me so mad at myself is that I am a “researcher”.  When it comes to the safety of my family, I research the crap out of our purchases.  One of the reasons that we have not turned over a lot of cars in the last 25 years is that I take at least 6 months to research the safety features, compare the pros and cons and drive Scott nuts.  I also was obsessed with my young children’s car safety.  One of Scott’s many endearing jokes was shortly after we laid down at night he would say “Hey Dawn, I am having trouble falling asleep can you tell me about the safety features of all car seats”.  For him this one never got old.  But I could tell you all about them and make you yawn within 5 minutes.  I knew the best ones and if something better came along, I replaced the one we had.  We probably went through, counting that we had one in each car at all times, at least 8 car seats and boosters.  While other women might be known by name at the the Kate Spade store or have a personal shopper at Nordstrom, I was the number one customer for Britax.  Oh and don’t get me started when they came out with the cover that looked like a black and white cow.  Henry loved the Smith Brothers milk truck that looked the same so I had to have that one.

I have always put the same diligence in researching the pharmaceuticals I put in my body.  I even have two friends that are the same way and often give them the names of drugs to research for me.  One I am related to, so that may be a gene thing.  But this time, I didn’t even think twice.  The relief that I so desperately needed drove me to be willing to try anything.  I blindly followed when normally I lead.

So here I am 8 weeks out from my own apocalypse faced with the daunting task of losing 80 pounds.  I struggled with my weight for the past five years.  How can I even fathom that kind of challenge when I can barely function as I drown in my grief.  Seven season of the walking dead and they still don’t have a cure.  I found the cure for zombie mom in one day.

In addition to weight gain let me share some of the side effects of this drug.  Then re-read Zombie Mom.  They should just put my picture on the side effects tab for this sucker.  The major usage is for “major depressive disorder”.  Which would have been handy without the following side effects:

• weight gain – Ding, ding ding, we have a winner
• Diahphoresis – had to look this one up – sweating, especially to an unusual degree as a symptom of disease or a side effect of a drug. – Bingo.  Thanks friends that mentioned I could be starting menopause
• mood or mental changes, including abnormal thinking, agitation, anxiety, confusion, and feelings of not caring  – Not even going to answer that one.
• shortness of breath – remember when I said the counselor pointed out that I am breathing shallow
• mood or mental changes, including anger, feelings of being outside the body, hallucinations (seeing, hearing, or feeling things that are not there), mood swings, and unusual excitement – check, check, check, except I think that same list is under symptoms of grieving
• Increased appetite – I love that this is a separate bullet point from “weight gain”, no shit people.

I am stopping now, but there are at least 8 other side effects listed that have been a constant source of worry for me.  Worry that this is normal?  Is this grief?  What will happen when I stop this anti anxiety medication?  I never understood when listening to commercials for anti depressants or other drugs why the list of side effects sounded worse than the problem you have in the first place.  So I have been on an anti anxiety medication for this past 8 weeks and I feel like I am barely surviving my grief.  NOW I am even more anxious and feeling agitated.

People ask me why I write this very public journal.  My first answer is to help me hold myself accountable.  When I try to journal just for myself, I find it not happening or I don’t delve very deep.  Why write it down, it is already there in my head.  It doesn’t go away because I write it down.  But when I write with the knowledge others will read it, I find myself being more detailed, more honest and this allows me to really see in black and white what is going on and what grief means to me.  This is a perfect example.  I wrote a very honest and somewhat disturbing entry about how I was feeling physically, mentally and emotionally.  By putting it out there and reading the many responses it held me accountable.  I went to the doctor.  Without any doubt we have not solved all of the issues, but at least because of that appointment I can eliminate at least one obstacle.

My days are filled with obstacles and emotional land minds.  These land mines are everywhere.  Scott and I drove Henry and a friend to Mox, a place in Bellevue where they play card games that I don’t understand.  We picked them up, as I got back in the car, I immediately bent down to pull my phone out of my purse.  I thought I should let Hayley know we are on our way home and see if she needs me to pick her up dinner since we already ate.  Scott was observant enough to catch me starting to speak “I am calling…” and then sense my severe mood change.  All in just a few seconds.  He asked me what was wrong.  I said I forgot for a moment.  He knew what I meant.

There is no pill for that kind of pain.  No bomb sniffing dog to lead you around the land mines.  The new normal is on the other side of this vast, desolate and dangerous landscape in front of you.   You can’t go around it.  You can’t go over or under it.  You have to go through it. 

And you know what?                             It fucking sucks.

It has been 8 weeks since I heard my daughter’s voice, before she heard me say “I love you”.  I have not been able to write.  My mind is so cluttered.  Our counselor looked at me and said “you have a lot going on in your brain, it never rests, you are always thinking of several things at once or what you want to say”.  Yep, feels like a computer with too many tabs open.  He saw that in me on the 3rd visit.  Scott, he said, nope not the same.

What we have figured out in counseling is that after 27 years we really don’t know each other.  We really have not grasped how different the other one thinks or process experiences.  In the sessions we learn something about each other every time.  The only time I feel hopeful is the short time after the appointment.  I think maybe we can do the work to move closer together instead of further apart.  When I get home that feeling disappears.  We are just too tired.

The first week after Hayley’s death I had a new cause, share her donor story. The next week we were busy planning her service.  After the extraordinary service, messages began rolling in.  Stories about Hayley.  #belikehayley was now about something more than Be an Organ Donor.  Then there was weeks of consistently sobbing and begging for my baby back.  School started and a schedule of normalcy began.  We are starting three weeks of school for Henry.  Now comes the final two weeks that Hayley was supposed to be spending a wonderful summer with me.  Moving into her apartment next weekend, starting classes on the 27th.

Instead of feeling better it is getting worse for me.  My projects have started to slow down, the glassy baby sale is coming to an end and now there are only tasks that I have put off, the things I don’t want to do.  Calling insurance, dealing with her car, sending her death certificate to where it needs to go, filing for unemployment, writing the thank you notes that can never really express the extensive gratitude I feel.

I have been out more.  Thursday a field trip to meet puppies on a farm in Stanwood and a day with friends.  Friday a concert at the Fair.  A long drive to get there and time to cement a new friendship.  Time with my sister in law.  Emotional time with my mother.   An impromptu evening with a friend while my ice cream melted in the car.  Today, pedi, mani and brunch with a new friend, one that stepped up as a stranger opened their home and property to 500 people and is now my friend for life.  On the outside looking in, that might all look positive.  I am getting out, I am being social.  This would be what Hayley’s mom would normally be doing.

But every outing in the past week ends the same way.  Like a toddler that has been overstimulated as soon as I walk in the front door, I have to sleep, I am exhausted, my voice feels hoarse and I feel weak.  I have not cried today, I don’t think I did yesterday either.  I felt like crying several times.  There were the constant reminders of what I am missing, who I am missing.  But no tears.  I am like a Zombie at home.  I really cannot find the words to describe how I feel at the start of this 8th week.  I will try.

When I am out in the world I feel like there is a bubble of sadness surrounding me.  I was a Peanuts fan as a kid, you know Charlie Brown, Snoopy, Woodstock, and more.  I imagine myself like the character, Pig Pen.  Pig Pen walked around in a cloud of dirt.  I never understood why, or if his friends addressed his obvious grooming issues with him.  We didn’t question these things as 70’s kids.  But I walk around with a cloud of grief, sadness, annoyance, frustration, exhaustion, pain and anger.  I feel like I can see it circling around me.  I believe that others can see it too.   I feel like I am wearing a sign that says “my daughter is dead”.  You think this is not true, you think you don’t see the cloud, but you do.

You can see it in the fake smile.  You notice I have no eye make up on, why bother, crying and eye make up don’t mix.  Most often I have only brushed my teeth.   You may notice the new 25 pounds I am lugging around in the puffiness of my face, my neck, or my ass.  I can only fit into sweat pants.  You see that I am wearing men’s sweatpants.  What you don’t know is they were Hayley’s favorites.  I rarely match the top to the bottom.  I don’t style my hair.  Many times it is wet from the shower I forced myself to take before that store trip.  You are seeing the cloud of grief.  You see me move slowly.  You see me limp.  You see me walk like I have aged 40 years.  All of those visuals are the dirt that is swirling around me.  You see the cloud but you just can’t put your finger on it and your brain tells you I am supposed to look sad so that must be it.  I am a Zombie Mom.

At home I interact with Henry.  He is the one that can get a real smile out of me.  The time he hugs me for no reason.  When he tells me about something he is interested in without me prying it out of him with a hundred questions.  When he shows interest in the future when he talks about cars he likes.  He is the reason I even have a future.  When I speak to him, my voice sounds normal.  But the second he is out of the room, Zombie Mom.

Scott and I are rarely even interacting at this point.  In our defense we have both tried to be active this past week, just not together.  For the past 4 hours I have sat on the couch staring at the TV.  I have no recollection what I watched.  I know an hour was about shark attacks.  The only reason I remember that is I recall thinking, well let’s take Hawaii off the list of places we can go and hide from the holidays.  I only moved to get another water and to pee.  Whenever one of my kids says I don’t feel good, I have a headache, I am tired, I tell them drink some water and if you still feel bad let me know.  Water cures everything in our house.  It is my version of Caster Oil or Vicks Menthol Rub.

I can’t cry today.  I have stared at her photos.  I have thought about what could have been done to save her.  I have actually tried to make myself cry.  But I am numb.  I don’t even know where this entry is going.  But I truly believe I am not only broken, but I am different people.  Zombie Mom and Pig Pen Mom and Faking it Mom.  A friend asked if I had Fun at the Fair concert Friday night.  My knee jerk reaction was to say yes.  Isn’t that the right answer?  Seriously that should have been FUN.  Tone Loc, Salt and Peppa, drunk army wives behind us that said they loved us.  But what I said was “I am not sure if I did, I think I did, but I just think it is a different definition of fun now”.    Fun is relative.

You would think I would embrace Zombie Mom, embrace the numbness.  Compared to Sobbing Mom.  But you know what, this is so much worse.  Sobbing Mom can be comforted with a message from a friend or a bag of fruit and treats on the porch.  Zombie Mom can’t be reached with those simple acts of friendship.  I tried that today.  I had love coming at me from multiple places when I was out.  But it didn’t follow me home.

Zombie Mom scares me.  The thoughts are not about missing Hayley or about how much I have learned about her in the last 8 weeks.  Zombie mom feels numb, hopeless, lonely when not alone, and so very heavy.  Heavy like I am carrying around weights on my ankles, my wrists and on my shoulders.  I feel like I might just forget to breathe. The truly scary part is not really caring if I did forget.

Zombies are hard to destroy.  They can be shot and keep moving.  They have horrific injuries and keep walking.  Maybe being a Zombie Mom is just being a survivor.  The ability to move and walk despite a body and mind that is destroyed.  Is this the next “phase”?  Who wants to be around a zombie or pig pen?  Am I going to isolate myself until all of those open tabs in my brain are closed?  Is this what real depression feels like?  Would Hayley be ashamed of me?  I keep hearing “you are so strong”.  I don’t feel strong.  Do they mean it or are they just trying to wish it to be true?

I don’t know.

We received information this week about the recipients of Hayey’s Organ donations.  The gifts.  After I called about 12 people to tell them specifically about the recipient of Hayley’s heart, I decided to sit down and write a letter to that nameless woman.  I wanted to write it while it was fresh and real.  Well the letter turned out to be more of a journal post and 7 pages.  I am still deciding on if I send this version or maybe ease her into Hurricane Dawn.  I will probably share the depth of detail for future correspondence.  I am going to share the letter now because it is the most real thing I have written.  It made me really understand what Organ Donation meant to our family.  It made me realize that it was not the recipients that needed to thank us, I needed to thank them.  Thank them for allowing part of Hayley to live on and for me to have a purpose in that horrible time.

September 2, 2017

Dear “Recipient”,

“Recipient” seems so impersonal a way to address you.  We are now connected in a way that is really beyond imagination. Typing this letter also seems impersonal.  I feel that I should be hand writing this.  But due to my handwriting, I am going to type because I want you to be able to read it! Plus, it is going to be a long letter.

I am Hayley’s Mom.  My daughter’s heart continues to beat thanks to you.  We are so grateful to you.  You gave me the gift of not witnessing my daughter’s last breath.  Because of you I did not have to watch her heart stop beating.  Because of you, I could say goodbye, lay my head on her chest, hear her heart beat strong and give that heart my blessing to beat for another.  During the worst weeks of our lives we were faced with decisions that no parent should ever have to make.  This was not supposed to happen.  I am uncertain where to start and what information to share with you.  I need you to know that you have provided me with comfort during an incredibly painful time.  I think I will just tell you the entire story.

Our donation story:

Hayley turned 19 years old on April 29^th of this year.  She had just finished her first year of college at Western Washington University.  She loved Bellingham.  If we meet I can tell you stories about how homesick she was that first quarter, how our relationship grew and what we learned about parenting college freshman!  Since you have three children, I am guessing you would appreciate that advice.  Hayley loved her family, Scott her father, Henry her 15-year-old brother, myself and our three rescue dogs.  Everyone says their child loves their family.   But I mean she LOVED us.  She humbled us with her love.  We worried at times that it wasn’t normal or healthy for a teenager to like her parents this much, maybe we were doing something wrong.

Hayley was my daughter and my best friend.  She would rather spend time with me and my girlfriends than anything else.  Don’t get me wrong she had plenty of other friends.  But we needed to be near each other always.  That is one of the reasons she chose WWU.  We were less than 2 hours away from each other and because of my job and her job we never had to go more than 14 days without each other.  We worried this was keeping her from really becoming connected to college and making new friends.  But she had so much love to give she was able to balance both and was ready to really spread her wings September 27^th with the start of her Sophomore year.  She was majoring in Sociology with Criminal Justice as her focus.  She was on track to graduate in 2020, the same year her brother graduates high school.  She was well on her way and her class schedule laid out all the way to graduation to earn her major and a minor in Psychology and Communications.  I would love to tell you in person about the ride-along she did with the only female campus police officer and how much this solidified that she wanted a career in law enforcement.  She wanted to change lives and make a difference.  By saving and changing the lives of so many people with her donations she basically accomplished her career goals on one big day.

Hayley’s passion was Dance.  From her first dance class at age 3 she was hooked and I was in for quite a ride.  Now I was not just a Mom but a Dance Mom (ugh).  She trained in Ballet, Jazz, Hip Hop, Lyrical and Tap.  She began competing at the age of 7 with a local studio.  She competed with several studio teams until Freshman year of High School.  At that time, she had the opportunity to be the first Freshman class at a school with a very competitive team.  This team change helped to reduce our travel load and be involved in school spirit.  She made this team.  She was so happy.  We have been told that you are a dancer, but what does dance have to do with her donation story, you

may be asking.  It does.  During the third year of competing we had an “issue”.  Back at the start of sophomore year she had been hospitalized for ovarian cysts.  She ended up having her first surgery and being diagnosed with PCOS.  One of the symptoms of PCOS is weight gain and brutal hormone issues during puberty.  During her Junior year she began to grow and gain some weight.  Her breasts grew from perfect size B to large double D.  The coach had a taste for skimpy and daring costuming much to the horror of the parents.  But this was a situation where if you messed with the coach, she messed with your kid.  This was the first domino in a row that led to Hayley’s death.  This costume was backless and strapless.  Which is quite an amazing feat.  The costume looked beautiful on girls with size A or smaller.  This described most of the team, with one exception.  During the first competition one of Hayley’s girls came out of her costume and she had to continue to dance for an excruciating 3 more minutes.  I spent the next few months leading up to the state competition trying desperately to make this costume work for her.  She was mortified and self-conscious.  They do not make backless and strapless dance bras for a 34DD.  The coach promised to make costume changes for the state competition.  Many of the other girls were thankful to hear this.  Two weeks before state she cut Hayley from the performance instead of changing the costume.  Not one to stay quiet when someone hurts my kid, I brought it to the attention of administration and we got nowhere.  In fact, at the next tryout, she cut Hayley from the team entirely, a fourth-year senior.  A returning member had never been cut from the team during this coach’s ten-year tenure.  You can imagine the devastation.  She had been on a dance team for ten years at this point.  She danced 20-30 hours a week for years.  She was never the best on the team, not even close.  But she always smiled and she loved it.  The rest of the story is irrelevant.  Her passion was taken away without notice. Her spirit was damaged.  Her self-esteem low.   This is when she started talking about wanting breast reduction.

For the next two years it was all she could talk about.  By the end of her freshman year of college she was a 36H.  Yes, an H for Hayley!  I still encouraged her to wait until after college.  At the same time, this summer my job with a local nonprofit ended.  We have more in common than just my daughter’s heart.  In 2009, I suffered Cardiac Arrest at the age of 38.  Heart Disease ran in my family. It killed my father at age 52.  This won me a pacemaker and led me down a path of volunteering for the American Heart Association.  DON’T FREAK OUT.  Being a very paranoid Mom, both my children have been screened multiple times and did not inherit my heart condition or my eye color.  Your new heart is perfect!

In 2012, I changed careers to run youth programs in Western Washington for AHA.  I worked with schools fundraising for people with special hearts.  My focus was Jump Rope for Heart, in Elementary schools.  My job was to fundraise, educate and create awareness about heart disease with a focus on women and moms.  I raised over two million dollars in four years.  I also developed a passion for working with High School students and started a mentoring program where I worked with a handful of High Schools to create awareness amongst their peers for prevention, and CPR.  I covered Blaine to Auburn and was the contact for 800 schools.  This is what allowed me to spend time in Bellingham during Hayley’s freshman year at WWU.  Hayley was constantly by my side.  She worked the Heart Galas, Go Red for Women Luncheons, the Heart Walk and even wore a Lion costume at school assemblies this past year.

The physical demands of this job finally caught up with me last fall.  Often driving 200 miles a day and organizing 200 events in a 9-month time frame was physically demanding even for the younger directors.  Add being someone living with Heart Disease and it was a recipe for disaster.  My job ended for these reasons in April.  We made the decision that I would not look for new work until the fall.  I will forever be grateful for the time she and I spent together from June 6^th to July 11^th.  I had good insurance with AHA that would be ending at the end of July.  Hayley was still insistent that Breast Reduction was what she wanted.  She had gained a maturity over the past year.  I knew this was not just about what happened her senior year but a thoughtful decision made with her health in mind.  It is very difficult to be physically active with a 36H rack.

I relented and made her a consultation appointment in June with a surgeon recommended by friends that had been to him for mastectomy reconstruction work.  I told Hayley that if the insurance agreed to pay we would go ahead and do it in July to allow time to recover before school.  But honestly, I had heard from so many people that insurance companies make you jump through so many hoops before they will pay.  I just didn’t think it would happen.  She knew if insurance did not say yes, it would have to wait until I was working again.  I was shocked two weeks later when surgery was approved as 100% medically necessary and her surgeon said it would be “life altering” for her.  Her pain would go away, she could be active and her confidence would return.  The surgery was scheduled for July 11^th.  He fit her in because he just really fell in love with her personality and wanted to make this happen for her and he was due to leave for a long vacation and it was now or wait until next summer.

I will tell you what happen, but not in detail.  I would prefer to share those personal details in person.  To be honest they are still very raw emotionally.  The surgeon used an upper half epidural for the surgery.  I did not even question this decision because that should be much safer than general anesthesia.  From the minute, they handed her off to us in recovery she was vomiting and had a horrible headache.  They sent her home with us, it was a Tuesday.  By ten that night on the advice of our surgeon we were in the emergency room of the Issaquah Swedish Hospital.  The symptoms appeared to be from a lumbar puncture from the epidural.  She was admitted to the hospital to control her pain and decide how to proceed.  She did not receive adequate care.  At one point our plastic surgeon drove to Issaquah and begin giving orders on how to care for her.  She had not eaten in several days and threw up every 1 to 2 hours, yet they had removed her IV Fluids. He even threatened to put her in his car and take her to Seattle where they had more depth in their care.  On Saturday, we chose to discharge her ourselves with the plan to take her to an appointment Monday in Seattle to a specialist.  We were exhausted, but she seemed to be turning the corner.  On early Monday morning things escalated and we had her transported form our home to Swedish First Hill.  They struggled to control her pain.  By 10:00 am a CT Scan finally revealed a clot on her brain and she was transferred to Swedish Cherry Hill ICU around 7:00 pm.  I will not share all the details unless you need to know.  But at 1:00 am Tuesday, Hayley suffered a stroke.  I witnessed Chest compressions being done on my child.  They could intubate her and go to surgery.  The clot was extensive and in a very rare location.  It was incredibly rare.  The surgeon that tried to clear the clot is the one that has performed the most of these surgeries in the nation.  Her body survived the surgery on Tuesday, July 18^th.  We were told the surgery was not successful.  There was too much damage and we would have to wait and see.  As a mother, I knew.  I was not shy to look in her eyes.  I knew she was gone.  The shock set in.  I am not telling you any of this to make you feel bad, do not cry for me, I have a huge support group of friends already doing enough crying for me. 

I just need you to really hear me.  You are the reason I survived the next week.  It was all about you.

On Wednesday, we were told she was probably brain dead.  Scott and I sat with our pediatrician as we listened.  We all were holding hands.  He asked us to sign a Do Not Resuscitate Order.  I refused.  He again persisted.  I asked him has it been determined 100% that she is gone.  He said the protocol to declare her officially brain dead was not complete yet.  With our pediatricians support we refused to sign the DNR.  Again, I truly knew in my broken heart she was gone.  But there was this tickle in my brain that I could not quite reach.  It told me this journey was not over.

On July 20^th at 9:31 p.m., Hayley was pronounced dead.  It was surreal.  She was warm, I could hear her heart beat, I could hold her hand and caress her face and her hair.  She was truly beautiful.  Again, we were asked to sign the DNR.  We did.  At this point Scott and I retreated to privacy to make decisions that are every parent’s worst nightmare.  My brain barely was functioning from lack of sleep, stress and ugly crying for days.  Remember that tickle, it was still there and I was desperately trying to reach it.  Finally, I did!  I asked my partner in life of 27 years did I miss the mention of organ donation?  He said no, that was never mentioned.  He said I think that is what Hayley would want.  I told him I KNOW that was what she wanted.  I begged him to find that doctor and rip the DNR to shreds until we asked about the possibility of organ donation.  While Scott sought out the Doctor, I told my friend to guard Hayley.  If she coded I didn’t care if she had to do CPR herself but we were not done yet.

You see I DID KNOW.

About a month before, I waited in our front room for Hayley to get home from work. It was Father’s Day Weekend and she was home from school to work a weekend and be there for her Dad.  I had the news on.  As was our routine she threw herself in the other chair and complained about her feet and how rude customers at the café had been.  A story caught our attention.  A man, Bill Conner, was riding his bike from Wisconsin to Florida to raise awareness about organ donation and to tell the story of his Daughter, Abbey.  Abbey had died tragically at age 20 while on vacation with her family in Mexico.  Abbey gave the gift of life.  That day in New Orleans as he rode his bike into town a young 23-year-old man waited for him with a stethoscope in his hand.  You see he was the recipient of Abbey’s heart and his Father’s Day gift to Bill was the opportunity to hear it beat again.  I sniffled.  Hayley said, “Mom are you crying, Geez!”.  I denied I was but noticed she reached for a Kleenex too.  After the story was complete and our tears (the ones that were not there) were done.  I turned to Hayley and asked, “Hey would you ride your bike across several states to listen to my heart?”.  Her quick-witted response was “F@$k NO, but I might consider riding one of those cute mopeds, it would probably be retro blue”.  She then asked me the same question that she asked me the day she was 15 and we were in the DMV getting her permit.  She was asked if she wanted to be an organ donor.  She said, “Mom why would somebody NOT be an organ donor?”  I didn’t have an answer.  I came up with some possibilities but we both agreed that as far as we were concerned anybody that did not donate if they could, was being selfish.  Yes, it was judgmental but it was how we felt. That day in June, Hayley was passionate and thoughtful in this conversation and very clear about what her decision would be.  She then transformed back into a 19-year-old, said she was taking a shower and catching up on the Kardashians.

So, you see, I did KNOW.  Hayley wanted you to have her heart.  This was HER choice and I could not be prouder of my child.  This was when LifeCenter Northwest became involved.  We answered all their questions and listened to how complicated the process would be.  Our team was amazing.  (remind me to tell you the tattoo story) We were not leaving that hospital until she did.  Pretty quickly we learned that we had a match for both kidneys and that both were 100% matches.  Which we learned later was extraordinary beyond comprehension.  It would be as if those two strangers were receiving their own genetic kidneys.  We talked about other organs and the work that was being done.  It was explained that most procurement surgeries take place at night when the Operating Rooms were available.  Each evening for 4 days we had to make the decision if we could wait one more day to continue looking for matches or to proceed on the kidneys.  I asked constantly about her heart.  You see there were no takers yet.  I was appalled how could no one want my beautiful, loving compassionate daughter’s heart.  But there was hope that day, her heart function had improved significantly over night.  If we could stay the course there was hope that a match might be found.  I can only tell you that yes it was a roller coaster and it delayed the inevitable.  We were not leaving that hospital with our daughter.  She was our sunshine.  Our family truly revolved around her.  But this is what I NEED you to hear.  Those extra hours, days in the hospital were worth the extra pain because we knew without a doubt Hayley would want us to fight for her.  Fight for her right to help as many strangers as possible.  Her body and her heart were not giving up despite the doctor’s predictions.

Saturday night, I will confess when we got ready for the family meeting with our donor team, we were feeling the weight of our pain and were ready to go home.  This is when we were told there was a potential match for her heart.  Before it had been only a possibility of a match.  Now we had a match, we had a recipient to think of.  It was not some random endless list of people.  There was a person.  That person had family and friends.  I knew that this was my final purpose as Hayley’s mom.  It was my job to make sure she got through that night and that I might have the chance to hear her heart beat for another.  Prior to Saturday I struggled to stay in her hospital room for extended amounts of time without losing all my strength.  My husband spent the nights with her, there was only room for one of us in the room.  That last night he finally crashed in our little rented room on another floor.  It was my job to guard her for that final night.  You see we never left her alone that week.  We had a support group made of family and my fierce group of girlfriends (always known as the B.U.M.s, Back Up Moms).  All of them were just as determined to make sure our wishes happened that week.  There was always one of us in that room.  I was obsessed with making sure she made it to procurement.  I encouraged her, I did everything to make her comfortable that night.  I spent that night telling our amazing nurse all about Hayley.  That morning we were told that the recipient’s surgeon was willing to move forward with the transplant despite less than perfect numbers on the tests.  I knew in every cell of my weary body that it was going to happen.  We had a time, 5:00 Sunday, July 23^rd.  Hayley was going to save the lives of two kidney patients, a liver to Canada, corneas for sight and countless others with tissue donation.  But I thought of that father on the bike and the dream of hearing my daughter’s heart beat for another.  Her heart had found its next home.  This gave us feelings of hope, love, pride and comfort that were a balm to the grief and excruciating pain we were feeling.

Her amazing night nurse asked to come back even though it was her day off and personally escort Hayley to the O.R.  Our support group waited outside of her room as we met the procurement team.  They were amazing compassionate people.  We knew we were handing over the most precious thing in the world to them.  We were not just putting our daughter in their hands but giving them the enormous task of making Hayley’s passion for organ donation a reality.  Our nurse, myself and Scott held hands and walked behind Hayley as she was taken to the elevator.  Our team of friends and family, walked behind us.  It reminded me of a parade.

You gave me the gift of not having to witness her last breath.  When she left our presence, she was alive and had a purpose.  The essence of Hayley was gone, but her body would accomplish something miraculous.  It was the greatest comfort.  We waited until the elevator left and came back empty.  We finally left that hospital after a week and our support group gathered at our home.  We all waited to hear that the surgery was done.  We finally ate, we all cried and we told Hayley stories.  I could not focus on what was happening, but only what the result would be.  We were not expecting to get the call that it was complete until after 10:00.  At 8:13 on July 23^rd I received a text from our donor team.   Well – Hayley’s heart is PERFECT!   There was more about her Liver and Kidneys.  I barely saw that.  I took the first deep breath in days.  Of course, her heart was perfect.  She was Hayley.  I had fulfilled my duty as her Mother.  We were so deeply grateful that because of Hayley several other families were not going to walk the same path that we were on.  I need you to know that YOU did that.  You gave us comfort that no hugs could.  Something good from the bad.  I could not have her back but another family could have their person back.

Last night we received the letter from LifeCenter that gave us a little information about our recipients.  I got the mail late in the evening.  We debated opening it.  My husband thought we should wait but he knew as soon as he went to bed I would be opening that letter.  I HAD to know if the recipients were doing well.  I needed to know if I had to grieve for another person.  I read the letter out loud to my husband in a steady voice until I reached the 5^th paragraph and had caught some key words.  I was barely able to get the sentences out.

Hayley’s heart was given to a woman in her thirties with three children.  She began feeling better immediately following the transplant surgery, and is looking forward to spending time with her family, and returning to yoga and dance classes.  She is so thankful for this amazing gift.

We were both crying hard when we read three children.  When we saw the word dance it was an all-out sobbing, ugly cry that startled our son when he walked in to see what was going on.   I cried out “Hayley’s heart will dance again; our person is a mom AND a dancer.  I am so happy”.  I think our son was confused by the happy part, and a bit skeptical because both of his parents were weeping at this point.  I then spent the next several hours calling every single person that had supported us that week.  Some didn’t even mind being woken up.  I read them the entire letter and just like us they all begin to weep at that 5^th paragraph.  So many responses “How could that happen?  How could her heart go to exactly the right person?  A mom and dancer, are you joking”

I scanned the letter and emailed it to my brother and sister in law and my mom just so they could see it in black and white.  For the first time in a month I felt that the nightmare that started on July 11^th had ended and we could move on to the next phase of our tragic journey.  My grief is not less.  My pain is not softened.  My days are not less lonely.  But now there is that tickle again.  Except now I know what that tickle means.  That tickle in my grieving, hazy brain is hope.  Hope that Hayley’s heart, the one I heard for the first time this exact week 20 years ago in utero; would continue to beat for you.  That it beats long enough to raise your children, long enough to have the memories that I won’t experience with Hayley.  If this letter is it. If we don’t meet. I will survive.  But that tickle is there, the hope that I can say to you and your family in person, to say Thank You for what you gave us.  They say the donor family is the one that gives the gift of life.  I disagree, the recipient also gives a gift.  The knowledge that Hayley has made a difference for another person validates my love for her and my role as Hayley’s mom.

I look forward to telling you Hayley stories.  I want to tell you about her amazing sense of humor, her love for Disneyland.  I want to tell you about the #belikehayley movement, the glassybaby named after her.  I want to tell you about her service, about the number of people that she impacted in her short 19 years and how admired her heart was.  I want to tell you about her love of music.  I even want to tell you about the times she drove me crazy and her potty mouth.

I would love to meet you.  I would love to know what I should call Hayley’s heart.  Because it is no longer hers, it is yours.  I would love to have your name so that I can call it something other than the “recipient’s heart”.  Your joy in no way will make my grief worse.  Nothing is going to take away my pain.  But know that meeting you and your family would be the greatest gift you could give to our family.

With Pride, Joy, Grief & Hope,

Hayley’s Mom, Dawn

It has been 42 days since we walked into our home without our daughter.

I still find myself at unpredictable moments realizing that Hayley is in fact gone.  Like it is a surprise.  It is not denial, it is truly feeling as if I just acknowledged this horrifying fact at that very moment.  I don’t know if others have had that experience with grief but I would really like to turn that one off.

This journal, blog, public diary, whatever you want to call it;  is so very personal.  I am opening up and displaying raw emotions in order to help myself and  if I am really lucky, help someone else.

For example, if I say this is what helps me and does not help me.  If someone does the latter, that does not mean that you did something wrong.  It just means for me, that didn’t work.  Even when something is said or done that is “wrong” for me, I try not to hold that against that person and I know that even a wrong effort is better than no effort.  So in case some of you have felt that way reading my journal, let me make it very clear.  It is not about you, it is about me.

If someone cares enough to approach me, to talk to me, to message me or reach out in all of the many ways we have at our disposal in 2017, they automatically get kudos points.  You really can’t say the wrong thing.  You may not say the right thing.  Who cares?  But if you choose not to reach out because you are so afraid that you will do the wrong thing and that I will publicly humiliate you on this blog; well I don’t know what to say to that.  To me that means you don’t care enough to even try.  I see that as you making it about yourself.  And I get it.  I am that person too.  I am an over-thinker and I am 100% certain that I have missed opportunities numerous times because of my own fears and ego.  What is the worst thing that can happen if you say the wrong thing to a grieving person?  Let me tell you, that person may be briefly hurt, annoyed or frustrated.  But trust me the worst has already happened to them.  Doing and saying nothing is a missed opportunity to touch another person’s life.  For me it is those brief contacts that will give me strength.

What is the wrong thing to do or say?  I honestly can only think of a few things that would be so wrong that I cannot even imagine anyone even saying them.  If my writings of rules and guidelines makes you shy away from a grieving person that is sad and not what I am trying to accomplish here.  Personally, I am willing to take the chance of feeling uncomfortable to at least show someone I care.  But that is me.  If that is not you that is fine.  Be You.

But by sharing with you experiences, my internal reaction and my feelings I hope that we all learn something, anything about supporting others or surviving our own downs in life.  I am not trying to write a self help book.  I am writing what is in my head and if you read it and connect to something I said, that makes me happy.  That makes me feel I have a purpose at a time when I am totally lost.  I have put others first my entire life.  I take ownership of what I write.  If I write about an experience and you think it might be you I am talking about.  You are wrong.  If it was you, you will know.  If you don’t like what I write or it makes you uncomfortable don’t read it.

Right now I am a confused about what I should or shouldn’t write, just in the way someone might not know what to say or not say to me.   So should I not write?  I don’t know, I am thinking out loud.  I have received so much positive feedback about doing this.  It is not all warm and fuzzy.  Almost every message indicates I caused them to cry, revisit an old wound or think about uncomfortable feelings.  But they all felt it was worth it and said thank you.

I am not writing for attention.  I am not writing for pity.  I am not writing to make anyone feel bad.  I like to write.  I always have.  But for me writing but keeping it private does not feel like I am being honest with myself.  I feel like by making this public I hold myself accountable to be real, be honest and be me.

If some of it makes you cry, laugh, or think that is just a really nice bonus.  Hayley would like that.  She was kind-hearted, but at the same time she would never back down from a fight and had almost an unhealthy vision of what was wrong or right.  I heard many of her friends suggest the song “Bad Bitch” for her hospital play list.  She was still young enough to believe it is either wrong or right; black or white.  She was only just beginning to understand what gray meant.  I am 46 years old and still struggle with that concept.  It was exciting to see her grow and watch her learn.  I was trying desperately to learn along with her and see things through her eyes.  I feel like I filter what I see, hear, and feel.  I feel like I put it through…..ok struggling with the right analogy here.

The one I am thinking of may not transfer to words correctly.  But I feel like my mind and my ego are a big pin ball machine.  The silver ball is the situation, what I see and hear, what I am observing, what is being done to me or actions I am about to take.  That ball gets released into the pin ball machine.  The obstacles, the rebounds, the slots, the lights and noises that the ball hits on its way through are my past experiences, my judgments, past hurts, past joys, how I was raised, what I had for breakfast, what is the temperature that day, am I hungry, that day in the 3rd grade I peed my pants on the playground, the day my grandma died, my dad’s body in the casket, the dog pissed on the carpet this morning, did Trump tweet this morning, grudges I hold, traits I admire.

All of these things change the score, they change that ball so when it comes out at the end (I suck at pin ball so for me this analogy works because the steel ball is going right down the center of those two stupid paddles. )  When it comes out at the end, ok lost my train of thought here, where the hell was I going with this?  Oh yeah, I am trying to learn to react or view situations with less pings.  And most of all I am trying to think before I react.  Actually hit the ball with the paddle and let it go back through before I open my mouth or react.

Ok, just reread that, not sure I am going to hit publish.  You may think I have taken too much of something.  But seriously this is a glimpse into my head, scary isn’t it.  It is also exhausting.  I bet you admire my husband right now.

So I think, what I am trying to get at, is that I may see dealing with a grieving person differently than I did a couple of weeks ago when I wrote rules and guidelines.  That was helpful for me because I was able to articulate what was going to work for me and get it out there.  But now I see things a little less right or wrong.  I think I am saying go ahead and pull back that plunger and give the ball a whack.

p.s. If you got anything out of that writing, or the pinball machine analogy actually made sense to you, then you may need medication or you are probably related to me.   Just saying.

I have not sat down to write in a week.  The past few days have been some of my hardest.  Maybe writing was helping.  This won’t be my best entry.  I do not have focus right now.  Two weeks ago we spent a couple of days at the Washington Coast at a wonderful house thanks to a generous friend.  We took Henry and a friend.  They seem to have fun.  I took a nap on the beach that was the best sleep I have had since this nightmare began.  Scott seem to really enjoy his time alone on the beach.  I found I did not have the energy to trek down to the beach more than once.  Physically I am not doing well.  When I looked up the physical symptoms of grief I have them all. One that is frustrating me is that they say you will either lose weight or gain weight.  Guess which one my body chose?  Yep.  The first week I could not eat at all.  Well I have made up for it.  The magic blue cooler on the porch helped. But combined with no activity and a truckload of meds, I now have a daunting amount of weight to lose to protect my own heart health.  So on top of the grief and pain, I now worry that I may not truly survive this journey and where will that leave my son.

Scott then headed to our friends Hood Canal house for some alone time on the 25th.  Tamese, Susan and I crashed his solitude on Sunday for a night of slushees, rock painting and floating in the inlet.  I relaxed a little, enough to notice.  Scott then stayed the rest of the week while I headed home to hold down the fort.  There were a few nights and many days that week that I was alone in the house.  Henry was out or sleeping over at his friend’s house.  I don’t blame him, this place is a mess and so am I.  What I did appreciate about the time alone was that I did not have to be quiet.  I am lonely.  I also feel that I have to be quiet.  Both of the males in the house get agitated if they see me cry.  They have become assimilated to the quiet cry, they can pretend that is not happening.  But the loud Ugly Cry that truly wants to surface, that has to be when I am alone.  So a few times I let it rip.  Loud, animal sounds came from my body while I weeped.  I found myself screaming her name over and over as if she would answer.  I startled my self with the sounds that were coming from my body.  It sounded primal.

This is the grief that you all don’t see.  The second time was in her room staring at her birkenstocks and vans, wondering when I should wash the clothes in her hamper.  We had redecorated her room in the weeks before her surgery, it was not complete.  Even though the new furniture  and bedding had been picked by her, it still didn’t feel hers.  The last time she had slept there she had been in so much pain and not able to enjoy her new room.  The plan was to finish putting things back in her room while she was recuperating. We had removed everything to purge and to make room to paint.  All of those things were put in my office/craft/bonus/storage room.  Her dance trophies were put in a box in the garage.  She wanted an adult room.  Six huge bags of clothes and items collected by teen girls were give to the goodwill truck.  There are even duffles that had not been opened or emptied from her return from the dorms.  I screamed her name over and over in that room looking at the new bedding, the stack of linens for her new apartment still in the bags and the medical supplies on the bookcase.  Her iwatch, phone and purse in the nightstand.  Her endless supplies of blanket and throws, she claimed each were her favorite.  The mirror she loved that we have had in our home since she was 3.  Her mattress she has slept on since she was 3.  Oh and the pillow pets everywhere.  She wanted to toss them all into the huge goodwill pile the week before surgery.  I told her to wait and we would pick her 3 favorites while she recuperated.  Her make up.  Her socks.  She wore short Costco socks with her slip on white vans.  They never matched and she had hundreds.  The Ikea upholstered stool we had purchased so the little dogs could get up on her bed.  The dvd player on the bottom shelf waiting to be plugged in.  She planned to do a Disney Marathon from our collection while she rested.

I screamed her name over and over until my head and throat hurt.  The next day I was hoarse.  Guess what?  She didn’t answer.  You see this is the part no one talks about.  What happens when the meals end (totally good for my weight at this point), what happens when the visits stop, the messages slow down, there is no planning for a service, what goes on in that home.  It is now both comforting and your sanctuary, but also torturing you every where you look.  AT THE SAME TIME.  People don’t tell you how that feels.  You figure it is bad and sad, but life is moving forward.

Time stopped for us and our circle of family and friends for 4 weeks.  That could not last.  There is work, school and they still have their daughters to go shopping with, travel, and set up in their college dorms.  I am both jealous of them and so very happy because I know how wonderful it is to have a daughter.

I have a 15 year old son, who is the best young man I could ask for.  Without him I can tell you that I may not have chosen to endure this pain.  He is kind, he is polite at all the right times, he has steady friendships, the moms love him, he doesn’t want to follow a crowd, or push the boundaries like a lot of teen boys.  He likes his computer he built himself.  He likes gaming.  He likes to watch video of podcasts with his dad that I don’t understand.  He is getting involved with marching band.  He is a very independent teenager.

That is the problem, we did a good job with this kid too.  He is just the right amount of independent for his age.  I know in my heart he needs his mom.  But he needs me to just be present.  He really doesn’t need a bunch of hugs.  He doesn’t want to sit and chat.   He doesn’t want to go wander Homegoods or Target with me.  He is doing exactly what he should be doing.  He is being himself.  He is not trying to be my shoulder or replace my friendship with Hayley.  I know that is exactly what should be happening and is healthy.  But remember I am lonely.

I feel like Fonzie from Happy Days.  Didn’t he have a little black book? I have a book of friends, acquaintances and a mother that would drop anything to come keep me company.  But that doesn’t feel right either.  I am just not good company.  Some of these people I find soothing and some I just see my grief looking back at me.  Today I went to the Lake with one of my best friends and her daughter and her friend.  It sounded nice to get some vitamin D. We originally had talked about just the two of us floating the river.  But thankfully reservations were full and when I saw the speed right now made the trip 4 hours I knew that would not be relaxing.  To be trapped for that long would feel claustrophobic.  So instead we went to the lake.  I knew I shouldn’t go.  I almost said no.  My gut told me no.

As soon as we left in that huge SUV stuffed full with inflatable plastic I should have asked her to turn around and take me home.  By the time we got to the lake I wanted out of that car so badly.  I wanted to be alone.  I felt ashamed because these were the people I love most.  While I was dropped off at one section she took the girls to go rent SUP.  I had my floaty which is like a recliner on the water.  So comfortable but very difficult to get into gracefully.  The first attempt I flipped it with my new water proof speaker and towel in one hand and a bottle of water in the other.  I lost a flip flop in the muck never to surface again.  I made it on the 2nd try and glanced over to where two women sat in their chairs and when they saw me look, they clapped.  Yes, evidently they had enjoyed the show.  If they only knew.

I paddled out, the water was mucky and not very refreshing.  I tried to connect my new speaker to my phone now hanging in it’s new dry case around my neck with no luck.  But thank you Pandora for choosing that moment to play one of the last songs i had played for Hayley before she was gone.  The Fray, Never say Never.  The hook is “don’t let go” over and over.  My friend arrived and paddled out.  I tried to relax.

At one of my counseling sessions he tried to teach me to quiet my brain.  He had only spent a total of 2 hours with me at that point over three weeks and he pointed out that I appear to have a lot going on in my head at one time.  Like a computer with lots of tabs open.  “Is that normal for you?”  Wow, I don’t think Scott had ever acknowledged this about me.  Bingo.  Yep, always.  Now add this tragic journey and sprinkle grief all over that hard drive and we have a problem.  He had me close my eyes and asked me to tell him what sounds I heard.  Being competitive this seemed like a test. I was that student that had to always get the highest score, bring it on.  Like the search in the Sunday paper where you have to find the things wrong with two seemingly duplicate pictures.  I heard the music in the lobby, traffic outside the window, the squeak of his chair.  “Is that all?” he asked. OMG, I am failing his test. okay, focus what else can I hear.  I felt like there was maybe 3 more sounds I was missing.  I tried to find them.  Clearly I failed.  But did I?

He said how long do you think that took?  Forever was what my brain said, maybe 5 minutes?  No, it had only been 60 seconds.  But it felt longer because for the first 60 seconds in weeks I did not think about Hayley’s death, my grief or my pain.  He is good.  We then tried two other exercises involving sand and breathing from my abdomen.  Both I truthfully told him were not going to work, nice try.  But the hearing game, also known as mindfulness, I liked that.

There on the lake where I didn’t want to be, I laid my head back and closed my eyes, what did I hear?  I heard too much!  Fricking kids screaming and splashing every where, ducks quacking which means I was floating in duck shit, a jet ski, several boats that clearly needed tune ups.  When I opened my eyes I saw a hazy blue sky and all I wanted was to be at home.  NOW, right that moment.  It felt like I couldn’t breathe, I cried.  I was so thankful to have my phone I called my son because Scott didn’t answer and asked him to tell Dad to come pick me up at the park as fast as he could.  He asked what was wrong, I said “I just need to be home now”.  He didn’t need any other explanation.  I yelled to my friend, I have to go,  I just can’t.  I paddled to shore, dragged my bag and floaty wearing one flip flop (I figured, why get slivers in both feet).  I was crying and I felt as if every person, child and bird there was watching me.  This pathetic, fat, grieving mother dragging her floaty across the playground while wearing one flip flop.  Winded I sat on a bench near the playground.  I wanted to scream at the tired looking mother that had just put her toddler’s shoes back on for the third time.  “LET HER GO BAREFOOT!”  because you will never get that moment back, let her get her clothes wet, let her walk through the splash fountain.  Be proud she at least didn’t want to ruin her cute shoes.

When you are grieving you are extra sensitive in all ways.  Noises are louder.  The ground is harder.  Smells are stronger.  You see details everywhere.  I felt as if all of this noise was suffocating me.  I can find a way to see, remember or imagine Hayley in every single thing I see.  I remembered running the inflatable race with her right at that park a year ago.  I remember when she loved splash fountains when she was 3.  That tree over there looks like one I took her photo under.  Oh look, there is a butterfly maybe that is a sign from Hayley.  It is so overwhelming it takes your breath away.  That is if you are not already breathing shallow to avoid Ugly Crying in public.

I was feeling so awful physically recently and I tried to come up with the word to describe it to a friend and I could only think of the word panting.  I felt like I was always panting.  At that same session the counselor made the observation that I am always breathing very shallow when he sees me.  That was the description I could not identify.  I am always breathing shallow.  If I try to take a deep breath it hurts.  If I give my body, my brain a deep breath and enough oxygen it only gives me back pain and the crying will start again.  If I don’t breathe deep enough I won’t have the energy to feel, I won’t have the energy to scream at someone for no reason and I won’t relax, letting down my guard or softening the walls that I have built to survive.   Others may see me and may notice I am not as talkative or animated as normal.  So to them the sound of grief is quiet.  But it is not.  It is loud.  I wish it was quiet.  But it is not.  I can totally understand how a grieving person may turn to alcohol or pills to dull the noise.  I always thought it was so they don’t feel.  But now I think it would be to just make all the noise go away.

When Scott arrived, he took my dirty floaty and wondered why I was wearing one flip flop.  I did the silent sob all the way home, I did not stop until I was in the shower.  Scott never said a word.  At home at least I know what to expect.  I know what objects mean, there are no surprises.  Someone grieving a shocking unexpected loss craves predictability.  I avoided my usual online conversations.  I watched 4 episodes of Big Brother.  I took a nap on the couch surrounded by my dogs.  All I could think about was how life was going on for everyone around me as it should.  But my life did not.  I am afraid it will never move forward.  I am afraid it will always hurt this much.  I am afraid everyone will forget Hayley.  I am afraid that with one of the loves of my life gone, that I have peaked.  I will never be as happy as I was prior to July 11th.  I am afraid I cannot be a good parent to Henry or wife to Scott.  All of this fear and pain is the sound of grief.

I don’t know how you can help.  I would truly ask if I knew.  I can only really hope by exposing my personal thoughts and exposing my grief that I can find the right words.  I hope these words find there way to someone else that may say something like “holy shit that is exactly how I feel”.  I am willing to try anything even if  it requires me scrubbing sand, duck shit and muck stains from my feet and body.

Tonight I am home alone.  This alone is a rare occasion.  Scott very much like Hayley, is a homebody.  It is not that he is anti social.  When put in social situations he does fine, sometimes will even admit he had fun despite being forced to go. So normally he would be home.   I have never minded spending time alone.  My friend has a family home on Hood Canal that I am lucky enough to visit and that is where Scott is tonight.  I have stayed there many times alone and it has always been peaceful so I suggested he go.  My friend and I are going in the morning to enjoy the sun, meet up with another friend and paint rocks.  Evidently painting rocks is  a thing now.  You paint them, maybe with a message, leave them about town for people to find.  I used to set up a kid size picnic table in the backyard for a four year old Hayley and our neighbor Conner.  Those two could occupy themselves for hours painting rocks.  I guess I was ahead of the trend.

I am lonely, so very lonely.  Before all of you freak out and start messaging me that I could call you anytime, let me explain.  I don’t want company tonight so when I say I am lonely it is not a complaint, just a fact.  If someone asked me to describe the grief of losing a child one of the first words to come to mind would be lonely.

I did not just lose my daughter, I lost my best friend.  She would have been thrilled to have the house be girls only tonight.  I would have felt obligated to sit and watch one of her crappy recorded reality TV shows.  We would have sat on the couch in the family room, at some point I would rub her head and play with her hair.  Just a brief show of love and affection.  These are the times I miss her the most.  I would watch every episode of Kardashians and the spin offs to do that one more time.

When we were in our third hospital in one week,  faced with the fact that she would not be going home I would curl into a ball on a small twin bed.  This hospital had rooms for rent.  It was called The Inn.  It was basically old hospital rooms from Providence days.  We rented one with three beds squeezed into the small space, my bed was the first on the right up against the wall.  The linens were minimal, the water in the shower cold and I clogged the toilet. I had Hayley’s pink blanket, the one she sent me a picture of from target the week before Christmas, hint hint.   I curled up on that bed facing that beige wall often with one hand under my pillow and the other splayed flat on the wall.  The wall was cold.  It was like I needed something solid to hold on to so my world would stop spinning.  I could hide.  Hayley’s Team as I called them had a group of leather fairly comfortable chairs outside my room.  A kitchen and a table to put puzzles together on.  I could only spend small amounts of times in Hayley’s room before I retreated back to that small ugly room on the 5th floor and sob.  I would always be in the same position, hand on the wall.  It worked.  I left the door unlocked.  My family and friends could enter, sit on the bed next to me or the bed across to check on me.  They would speak to my back.  I didn’t have to look at anyone this way.  I didn’t have to see the pain, grief, sorrow and tears on their faces.  If I did not acknowledge their pain maybe my pain would not be real.  Maybe the entire thing would be a bad dream.  I felt incredibly guilty for not staying in her room.  Scott did.  There was room for one person to sleep in there, that was Scott.  The last night he could take no more and slept in the Inn, I was going to sleep in her room.  I ended up telling Hayley stories all night to the nurses keeping her body alive for the benefit of strangers.

I could still manage and direct people in my usual ways from my position on that bed with the wall holding me up.  It felt like I had to hold that wall up.  If I didn’t I felt it would crash down on all of us.  My palm on that wall was my focus point.  Remember during natural child birth class they told us to bring a small item that would be our focal point to use for getting through the pain.  My object was a small stuffed classic Pooh Bear.  I used it in both births.  I almost squeezed its head off both times right before I got the epidurals.  I still have it.  Scott and I seem to reverse roles that week.  He was the one that greeted all the parents and young adults that we had invited to the hopsital to say goodbye to Hayley.  He hugged the girls while they weeped.  An entire evening of this.  I could not do it.  I could not see my grief on those girl’s faces.  He did the job for both of us.  So I held up my wall.

When Henry was brought to the hospital it was Scott and our wonderful pediatrician, Tracie, that explained to him that Hayley may look alive but that she was not.  He was losing his sister.  He spent a short amount of time quietly touching her arm while the tears ran down his face.  I was there for that.  Then he joined me in the Inn.  He had the far bed, he slept almost all of the time that he was at the hospital, he held up the other wall.

It was Scott that backed me up when the doctor’s told us it was likely she could go into cardiac arrest again and he recommended we not resuscitate.  We sat in someone’s office while he told us she was brain dead.  Our pediatrician was there, she kept me upright, she held my hand when I asked him are you 100% sure.  He coldly said “Well nearly 100% we have several tests we run, there is protocol before it is official”.  I looked him in the eye and said you will save her if she codes.  I know one thing about my daughter and if there was a 1% chance she would find it.  Scott backed me up when it felt like the doctor was trying to convince me to change my mind.  I looked to Tracie for guidance, she had been caring for my daughter’s health since she was 2.  She didn’t look at me with pity, she asked doctor questions and whatever she said to him he finally left us in that crummy office to process that our daughter was gone.  I didn’t stay there long, I had to get back to holding up my wall.

Back in my Inn, hand on that cold, ugly, beige wall.  I laid there thinking to myself and asking questions in my head.  Am I in denial?  Did I understand what he said?  Would I really be “hurting her” as he put it if we bring her back if she codes?  Several times a day you would hear codes over the hospital intercom, this was an intensive care hospital.  I had already heard at the last hospital the code with her room number “rapid response team”.  I had heard “code blue” and her room number at this hospital.  No matter what our Hayley Team was doing when the intercom came on we all froze and then would sigh with relief it was not her room.  I knew the fastest way to get to her room.  I thought about it later, how happy and relieved we were that it was not her room number.  But now I think, it was someone else’s room number.  Another Family.

In another post I will share in more detail what led to Hayley’s death, this is not that post.  But I want to share how extraordinary those 7 days were.  We don’t have family that live near us.  The closest is my brother and his family.  I love him and his wife more than anything.  They live an hour away.  But when I called at 1:00 am and said I am on my way back to the hospital I think Hayley has had a stroke.  He was there.  He was there fast.  My little brother, 8 years my junior, a brother that was really raised in another household.  We had only lived in the same house together for the first 6 years of his life.  We were raised  as only children.  But he was our rock that week.  I have always enjoyed my sister in law’s company, but that week I got to really know her.  I already loved her, that was a given, but I was so sad that we had not made an effort to spend time together, Hayley would have adored her sense of humor and how she stalked the hospital halls trying to get us information.  Hayley would have loved how she bosses her Uncle around and he seems to love it.  Terri was already with me, she had been with me for the first week of this journey.  So this was the start of our.  My best friend and Hayley’s second mom was there in the middle of the night.  She lost her daughter, Ali, when our girls were in kindergarten.  I knew her after, Ali brought us together.  I knew she avoided hospitals.  She was also flying out in a day to the east coast with her girls for an important trip.  But I saw her.  She was there.  We didn’t need to talk.

This is where it was an extraordinary experience.  By this time we had our Inn room and we sat in the circle of chairs.  I found comfort falling into my normal role as the planner, the boss, the organizer.  Everyone fell into a role naturally.  Kevin was the note taker, the creator of the caring bridge page.  His role was to be at there with us at every crucial moment, clear headed and asking the questions I could not voice.  Even through his own greif.  When my sister in law arrived she fell into role as the gate keeper.  My friend from high school and the one that held a leg while Hayley was born was keeping a close eye on me.  Terri somehow made food appear for everyone and erased my constant thoughts about how we were going to handle this financially.  She and Sara would stay with Hayley when I couldn’t.  They also kept an eye on Scott.  When my cousin arrived from Vegas, she was in charge of the dogs and Henry.   Susan and her daughter arrived, she offered medications and made me actually laugh.  I sat there and said what I needed to happen and every single time the exact right person made it happen.  I needed medication.  That took three of them to make that xanax happen.  I gave a verbal list of which girls would need to say goodbye, I did not want it to become a circus of teen girls.  Jessi worked with Darin and Tamese to make that happen.  They had a system for the arrivals.  They made sure that all I had to do is hold up my wall.   Tena brought food.  Susie brought food and booze.  We all were shocked and dismayed at the basket with the makings of lemon drops.  But guess what Susie is always right.  By the last night everyone needed and had a lemon drop.   My mom arrived from Florida.  Her role was to guard Hayley as long as she could do it.  She was the one the hospital staff would know not to mess with.  When the last doctor came in on the 20th at 9:30 to do the final test in the protocol for death, he was incredibly rude and insensitive to me.  I can picture his face.  I can hear his insensitivity.  My mom was in the room.  Big mistake buddy.  I almost felt sorry for him.

I was spending time with my child, I will leave the room when I am ready and then you can do your fucking test.  If the first three tests were correct she was not going to be any less brain dead in 15 minutes.  Even though I was ready to go back to my room in the Inn,  I stayed longer on purpose sensing his frustration.  I knew I had back up.  I laid my head next to Hayley’s and whispered to her “I am so sorry that this man is a dickhead.  But because he is, mommy is going to keep her mouth in your ear for a few minutes just to piss him off.  So just go with it sweetheart.  I told her I loved her and that grandma was in the room and I felt sorry for this guy because of it.  I also mentioned if by chance we were all wrong and she was still there, now would be the time to let everyone know. ” I could almost hear her favorite phrase “I fucking hate people'”.  No joke this is what I whispered, while he stood there preparing his test that would trigger a death certificate for my only daughter.  I am not sure if it was that day or another day, but my mom raised hell about that guy.  When my mom said she was torn between being with me and being with Hayley, she did what I needed, she stayed with Hayley when I couldn’t.  This team knew instinctively what I could handle when I didn’t even know.  Everyone had a job at some point that week.  Scott and I had handlers.  I could hardly be in a room with Scott without losing the ability to breathe.  When I looked at his face, when I touched his hand, or leaned into his body; I saw, and I felt my own intense grief reflected back at me, it was brutal.

We may not have always been able to make the roles husband and wife work. We had once been separated for almost 2 years living in the same house. We always parented as one.  We got that right always.  We met in the Inn when we had to make decisions.  After the doctor convinced us that there was no hope and to sign the DNR I went back to my spot to hold up the wall.  It still didn’t feel right.  What I didn’t mention is that I knew she was gone.  I knew exactly when it had happened.  I can’t talk about it in writing yet, but soon.  But even knowing before they proved it, I did not want to sign that DNR, something was trying to get through the haze of pain and Xanax.  Scott sat on the middle bed and cried.  He was ugly crying.  I held up my wall.  We knew we had to make some decisions.  So we pulled it together and sat across from each other with our knees touching.  These are things parents should never have to talk.  I knew what Scott wanted if he died, but I had not ever thought about what I would chose for my children.  We were very business like.

• Who else needed to say goodbye?  Her best friend was still on a camping trip in Wyoming.  We both agreed that we needed to do everything possible to make sure she arrived in time to say goodbye.  We were able to track her using Hayley’s phone and find my friends app.  We knew she was on her way.
• I asked him to check my original list of people that needed to know, did they all get a chance to say goodbye.  The governor could have visited and I would not have known.  I was holding up my wall.
• How do we handle Henry?  We agreed we would ask Dr. Tracie for advice and asked Sandy to bring him to the hospital.
• Burial or Cremation?  I curled back up and dug my nails into my wall.  Can I imagine my child buried in a box or turned into ashes.  Really not good options.  What I wanted was for her to be alive and come home.  She looked alive.  I could touch her, I could listen to her heart beat and touch her hair and massage her scalp.

Here is where it happened.  The Click.  We are constantly making memories.  I am making one typing my story with a documentary in the background and texting with Henry.  It won’t be a memory that will leave its mark.  There are memories that leave a mark.  The obvious ones; the first time I held my babies, the moment a 17 year old me watched my stepmom take her last breath in hospice, raging at my Dad’s dead body in his bedroom, the moment Scott said we should give up on our marriage and the moment h

e said we shouldn’t.  Not all memories that leave a mark are the biggies.  Some are smaller moments. Singing in the car with Hayley with the windows rolled down, belting out Bruno Mars, Sam Hunt and some love song she was  so into, about a man falling in love with a woman while he held her hair and she puked and she looked over her shoulder.  Picking bedding together for her dorm room.  Every time I watched her dance.

But this was the one that would change our direction.  This suddenly gave me a purpose other than holding up my wall.

• I gripped his knee, wait a second, Hayley is an organ donor.  Why didn’t the doctor mention or ask us?  Maybe her condition keeps her from donating, why else would he not mention it.  Scott said I think that is what she would want.  I said I KNOW, for a fact she would.  I told him I was with her when she checked the box at the dmv when she proudly got her permit.  She asked me to explain it before she thoughtfully made her decision.  I told him there was more, but I needed him to go find that doctor and tear up the DNR NOW.  Hurry find someone and do not leave her side until you know they will resuscitate.  His tears dried and he was a father on a mission.  I curled back up shaking and holding up that wall.  The rest is a blur.  I think it was my brother that came and said that Scott was working on the organ donation and did I want to come help.  No, let him handle it.  Scott came to me and said it was fixed and yes she could donate.  There was a woman that we needed to fill out some paperwork with, she had questions that he felt I could answer best, was I up to doing that.  I asked what kind of questions, he said like medical ones, I rolled my eyes, of course I was the only one that could do that.  He said you now the stuff you are good at the details.  She had only been to maybe 2 doctor’s appointments in her life that I was not present for.  I followed him to Hayley’s floor and met two women that needed to meet with me.  One was dressed in street clothes and had a laptop, the other was in scrubs.  I agreed but asked if we could go back to the Inn and meet there where I had my support group.  Amy had the laptop and asked the questions.  I wondered why an RN was there, but figured if I fainted it would be convenient.  The first thing she did was establish rapport.  She asked how did I know Hayley’s wishes besides the dmv.  She said from what Scott told her it sounded as if this was something she and I had discussed and that was very unusual for someone Hayley’s age.  My response was , she was special.  That is when I knew that the wall I was holding all those days was for a purpose.  I knew there was something just out of my reach that I couldn’t think of that would make things easier that week.  This was it.  About 4 weeks earlier, on father’s day, Hayley came home that weekend to work and see her Dad.  She had just gotten home from work and sat in the other chair in the front room where I was watching the news waiting for her to come home.  We watched a story about a Dad that was riding his bike from Wisconsin to Florida to raise awareness about organ donation in honor of his 20 year old daughter, Abbey.  She had died while on a trip to Mexico.  The staff in the Fort Lauderdale hospital had made it possible for Abbey to donate the gift of life.  On father’s day, in New Orleans, waiting for him to ride into town was the 23 year old man that had received Abbey’s gift.  This Father was able to use a stethoscope and hear his daughter’s heart beating.  I sniffled, Hayley said ARE you crying? I looked over and saw she was too.  We laughed.  We always made fun of each other for crying at stories.  We both particularly loved watching those military reunions where the deployed parent surprises their family.  Automatic cry every single time.  I said “would you ride a bike across several states to hear my heart?”  her immediate response was exactly this “fuck no mom, but I might ride a cute moped”.  We talked a little more about how amazing it was that others can receive that gift and how amazing it was for her family.  Hayley asked, why wouldn’t someone donate?  I shrugged, I am sure they have their reasons, but that is what I would want.  See.  I told Scott I KNEW what Hayley wanted.

We still had several more days of hell but it had a silver lining.  Because of Hayley there would be other families that would not be curled in a ball holding up their own wall of grief.  I was obsessed that the organ donation happen.  It is a complicated process.  That is another journal entry.  I was 100% focused on her heart living on in another.  On Sunday, July 23, 2017 our beautiful 19 year old kind, funny, sometimes a pain, daughter would give the gift of live to 4 people by donating her Liver, both kidneys and yes, her heart.  There will be countless others that will benefit from other donations but all I cared about is the hope that I might some day hear her heart beating in another.  Until then I will continue to hold my wall of grief up with that one hand.

Right now, is a bad night.  It is exactly one month since her official death.  It is 20 years this week we announced our pregnancy.  All my days are bad but some are worse than others, this is one of them.  I thought writing would help.  But I think if I write about the place I am in now it will make it worse.  So, I will write, just for lightness.  A rule book of sorts, maybe it will help.

Disclaimer:  This is how I feel, these are my rules.  They may not apply to all grieving parents.

The Golden rule of dealing with a grieving parent. Do not take anything they do or say personally.  A parent that has lost a child gets a golden pass to do, say or act in any way needed. The exceptions are if my actions cause physical damage to another or are illegal.  Even then I might push those limits.  Nothing is about you.  If a grieving parent tells you that you are not only an asshole but also an insensitive one.  Do NOT take it personally, just give them some space.  If after the one year mark they still have the same opinion of you than it may be true and you should probably accept that the relationship is over.

It is ALL about their child and their pain.  At our Friday Grief Counseling session he discussed with us the most common question those dealing with loss ask.  How long will I this pain and grief last?  His answer was based on his experience as a widower;  about 2 and a half years.  He said most “experts” say about one year.  Because in one year you will have had a cycle of all the seasons, events, dates, and holidays at least once without that child.  He asked me how long I thought it would take.  “Forever” was my answer.  But we still had time on his clock so he talked to me about Hayley.  What would your daughter want?  What do you think she would say if you were never happy again; if you and her Dad grew apart instead of closer.  It had not occurred to me at all what Hayley would want.  My first thought is that she would not want to be dead.  But since this is not possible, I think about it quietly, hoping Scott will talk and I won’t have to answer the question.  I think for me it will not get easier for 4 to 6 years.  I am only guessing.  That is when friends have had those events that Hayley and I had discussed or dreamed about.  For example, in 3 years she would have graduated from college the same week her brother graduated High School.  We thought that was so cool.  She constantly talked about both being the class of 2020.  Her friends will be starting careers.  She has wanted a career in law enforcement since junior high school.  Her friends will date and fall in love.  She was excited to move forward and start to date for the first time.  We talked about it.  It was part of the reason she wanted the surgery.  She wanted control of her health and her appearance.  Those 36H things were in her way both physically and mentally.

Once her friends start doing things Hayley and I had not discussed yet, it might get easier.  When the first gets married; I will hurt.  I will think of all those episodes of “say yes to the dress” we watched.  When the first has a baby; I will hurt.  But those were not things we talked about often, too far in the future.  So for me I really feel that it may become easier after 5 years if I can survive that long.  At that point Henry will be one year into college and hopefully Scott and I will have figured out another new normal, the empty nest.

Rules or Just Guidelines for Dealing with a Grieving Mother

Now that the magic blue box on our porch is not yielding yummy surprises on a daily basis, the odds are I am going to have to start leaving the house.  I can guarantee you that I will be going to Bartells to refill my Xanax prescription.   You may run into me.  I thought I would share some tips on how to handle these situations.

Scenario #1 – Hide and Seek

You see me, but I don’t see you.

Option A – you are having a great hair day.  You are feeling good.  You really don’t want to be reminded of your worst nightmare as a parent by seeing the bags and grief up close on my face.

Solution – make sure I don’t see you

Option B – F*&k it might as well say hi and get it over with.

Solution – approach slowly, smile, not big grin like you just discovered the most comfortable thong underwear ever.   A small, calm, approachable smile will do.

You took door number 2, what next?

People generally greet each other a “Hi, how are you?”.  It literally is how we say Hi, we don’t even think about it.  When someone asks me that question they immediately feel awkward. Seriously, I can totally hear the conversation going on in their head because I have been there too.  It probably goes something like this “OMFG you just asked her how she was doing, are you an idiot?  Her daughter died, of course she is not okay.!”

This question does not bother me. It does bother me when people get all flustered and say that was a dumb question or even answer it for ME.  Let me answer it.  I may just give the auto response “ok”.  That does not mean I am OK, of course I am not OK, are you an idiot?  But my “ok” is different now than yours.  I may answer truthfully, “I am having a rough day”.

In general, not just with a grieving mother, maybe we should start listening to the answer.  If you don’t really care how they are doing than just retrain yourself to say “hi”.  This is something I am personally working on.  Because in my opinion, if you ask you should care what the answer is.

You Conquered the Verbal Greeting.  To Hug or Not to Hug?

Do your best to read my body language.

Let me give you some hints on how to know the answer.

No Hug

• If I keep my cart between us, no hug. Don’t take it personally. The odds are I can’t remember the last day I showered.
• I have not acknowledged your verbal greeting. Either I don’t remember who you are or I don’t like you.  Again, do not take it personally. I have found that the combination of severe grief, the emotional roller coaster of the process, lack of sleep, and the Xanax are causing some memory issues. If it is because I don’t like you, you might want to ask yourself why, just saying.

Yes, On the Hug

• If None of the above happens, go for it. The two males in my family are not huggers.  I know they love me, but they don’t show it with hugs.  If you were at the service you know that Henry’s way of showing me involves a middle finger.  Hayley was my hugger. To get a hug from Henry, I either have to forcibly maul him; cry heavily or exchange it for goods or something of value.   It sounds something like this:  “Henry, hug me or I will not pick up blazing bagels tomorrow.”  Or “Henry, hug me or I will shut down the internet”.  So honestly I probably need a hug badly.

Appropriate Length and Strength of the Hug

• Let the grieving person control the strength of the hug.  I know you want to show me or that person you care, but losing a child physically hurts. Your entire body aches and everything is an effort. So, if this is a high pain day a bear hug may actually hurt me.  TIP:  For f$#k sake never ever give the “lift and hug”.  That gives a person a loss of control during a time where they have very little control.  My feet need to stay on the ground.   Speaking for myself, I can guarantee you would get a knee in the groin.
• How long to hug a grieving mother is complicated. To make this easier on everyone I have established a general rule of thumb.
  • One year that you have known my name equals two seconds. For those that don’t like math.  If you have known me by name for 3 years, you can hug me up to 6 seconds.

There  are exceptions to this rule.  If any of the following apply, hug away.

You can name all the pets in my home

We have spent the night under the same roof

You have heard me sing

You know have met my brother

We have gotten sloppy, I love you man drunk together

You have seen me dance

You provided my family with a meal

You attended Hayley’s memorial service; a long, hot and standing room only service has earned you a good hug.  P.S. tell me you were there, I really don’t know who was.

More Tips

Here is where the hug could go sideways. Sometimes a kind word or hug will open the floodgates. If this happens during your hug it is important that you do not panic.  A reminder these tips are for public situations. One or all of the following may happen.  Be prepared.

• I will recover, retreat quickly and find Kleenex or just use my hand or sleeve. Terrific, you are off the hook, just don’t shake hands.
• A grieving mother may extend the hug to hide, because we are self conscious or to wipe snot on your clothes. Either way just let it happen.
• Same scenario, the floodgates have opened. Do NOT push me away and run.  Be calm.  The grieving mother can smell panic.  Quietly ask me one of the following questions:
  • “Can I get you a Kleenex?”
  • “Would you like to sit down somewhere and talk?”

If these questions do not work I am not sure how to help you.  If it was me, I would grab the mother’s purse, leave the cart, and slowly take them to your car.  Two things will happen.  They will let you drive them home where they are no longer your problem or this will make them feel they are being kidnapped and it should snap them out of it.

So, in review, we have covered the greeting and the hug.  When in doubt let me make the first move.

If you still are uncertain or have forgotten the guidelines, just ask “Can I give you a hug?” or “Do you need a hug?”.  Remember your feelings are not the priority in this situation.

So you have successfully mastered the greeting and the hug.   If you have asked the question the first rule is to just listen.  I may say something like:

• “Well I am out of the house so that is an accomplishment”
• “I just really can’t think of an answer to that question
• “I am a broken mess, suffering unbearable pain and will never be happy again”
• “I am so angry this happened I just want to hit something” …( had to get a Sally Fields, Steel Magnolia reference in, sorry)…In this situation make a quick exit.

What should I Say?

• “I am so sorry” – simple and sincere, no further action needed. Possible second hug. Encounter done.
• “I am so sorry, is there anything I can do to help make it easier for you?” Careful, too open ended.  Only ask if you are prepared to follow thru on anything.
• “Can I help you finish your shopping? “Can I help load (Costco) these heavy things in your car?” these are great ways to show you care but not to have to deal with more in the future.
  • If they say no thank you, accept it.
  • If you are already in check out or heading that way. Just do it. Just walk out with them and load the shit in the car. Trust me we are exhausted. Everything is hard right now.
• “I really am sorry for your family, I hope you know I am here if you need anything, do you have my number?” Don’t say it if you don’t mean it.
  • Some simple examples of things you can do for the family:
    • Invite me for coffee
    • Make a meal for the family. It doesn’t have to be a full meal. Just drop off a snack or a treat.  But do not expect them to come to the door.  Just leave it with a note on their porch, text them and tell them you were by.
    • Walk their dog.
    • Offer rides for their other children.
    • Offer to take notes at school meetings so they don’t have to attend.
    • Is there anything you need picked up from your office?
    • Can I pick up prescriptions for you?

Anything that requires them to leave the house is hard right now.  A grieving  mother 99% of the time will initially say no.  Moms are supposed to do everything. When we can’t, we feel like failures. By being specific with your offers of help you are giving them a way to say “yes” guilt free.  I am telling you that the pain is so thick that when someone says “How can I help?”, I cannot think of anything!  But you know that can’t be the case.  Make suggestions.  If you still get a no, let it go for the moment, but follow up within 48 hours. Message, text or email only (we won’t answer the phone. Heck I didn’t answer when life was wonderful) keep it brief, I am glad I ran into you at _______________, my offer for help still stands let me know if you thought of anything I can do to make it easier for you.

I hope some of these tips help.

Finally, here is the number one rule, the golden one.

Do not ever judge the grieving mother.

For example, if I am out and about, or go to an activity, do not judge me.

You now people do it.  Here are some examples and my response.

1. “Wow, it has only been 3 weeks, I would still be laying on the floor crying?” NO, you don’t fucking know what you would do, until it happens to you.  I personally can be found crying on the floor a minimum of 6 times a day, but my other kid needs food.
2. “OMG there is that woman whose daughter died, how is she even standing, I could never come to a High School football scrimmage this soon”. I am trying to show my other child they are still important and I support their activity even though they may not know how to play their instrument, you are proud they are trying.  I would rather not be in a crowd while feeling like I have a sign on my back that says “Hey everyone, this is the one that just lost her daughter because of a simple surgery.”  But I will be there because I love my son.
3. “Did you see on Facebook, she went to a Seahawks game and was smiling? She met Doug Baldwin and pet the Hawk.  Wow, I wouldn’t be able to have fun this soon.”  That person may have needed to get out of the house before they hurt themselves.  The sky club tickets and field passes may have been gifts from two very caring women and you know what I am not going to hurt their feelings, plus I am willing to try anything to make this pain subside at all for 4 hours. But guess what the pain was still there, I cried when I met Dave Craig, scared him, but my daughter loved the Hawks, I did it for her.
4. “It has been 6 months, why is she still wearing her pajamas to Safeway?” Because I can and I don’t care.
5. “Can you believe she let her 19-year-old risk her life for a breast reduction?” FUCK YOU. You know who you are.

In conclusion:

Be Kind.

Do Not Judge.

Be a Friend.

Be Thoughtful.

Be Thankful that you are not me.

Yours Truly,

The Rule Maker aka Hayley’s Mom

My thoughts are consumed by the efforts to process this tragedy and the crushing pain in my body. As I start to venture outside of our home and have conversations with people outside my circle of support, it constantly occurs to me that I have lost one of my most cherished titles. I am a Wife. I am the Mother of a son.  I WAS the Mother of a daughter and the Mother of two children.  I have had that title torn from me. If a stranger asks me “Do you have children?” Have is present tense. I have one child. I have a son. Do I add that I had a daughter.  It is not my goal to ruin their day or make it awkward.

This is what I don’t understand. If my Husband dies and I have not remarried. I have a title. I would be a Widow. Reversed he would be a Widower. Everyone knows the definition of those two words. Those are both nouns and titles.  I would assume that this widow has faced significant pain, change and may now be filling the role of mom and dad for a family.

My deepest apologies to my husband; but I need to be brutally honest. In my opinion, the pain of losing a child is so much more significant. More everything. Please do not misunderstand.       I would grieve deeply for my husband.  There is nothing comparable to the unimaginable pain and grief associated with the loss of your child.

We created a daughter.  We created another human being.  She lived within my body. We focused on keeping her safe for 19 years.  She had dreams to fulfill; she is irreplaceable. Trust me, I have never stood over my husband at night to check for breathing and marvel at his adorable toes and long eye lashes. The closest I have come to this activity is staring at his face while he snores and farts in his sleep. Wondering when did his nose hairs get so long.

A spouse is replaceable. Statistics on divorce prove it. Dictionary.com confirms that the bestowed title of widow or widower ends when you remarry. I am not trivializing the pain and suffering caused by losing a spouse.  But when that person feels ready to have a new relationship they get an old title back.  Now you can hope they learned a few things from their marriage and maybe attempt to screen out those traits from the previous spouse that may have been annoying or made life challenging. So not only do you get an actual title in between spouses, you could even have a new and improved marriage.

But what is my current title as it relates to my only daughter? It is all past tense. She was my best friend. She was physically a reflection of me. She was my kind, funny, real, thoughtful child that constantly used the word F*@k as a sentence enhancer.

But title is now past tense.   She died 3 weeks ago.

Where is my new title?

I deserve a f@#$%g title. I destroyed my body and breasts in ways that make me cringe. I gave her life and nourishment.  I rarely slept more than 4 hours a night for the first four years of her life. Then guess what, her brother was born and it started all over again. I have literally not slept 8 hours in a row without the aid of prescription meds or booze in 19 years.   I was the “Mother of a newborn, a toddler, a preteen, a tween, a teen and briefly a semi-adult”

I put my first born on a school bus for the first time in September 2003, followed the bus and received my next titles:  “Room Mom“, “Art Mom“, “PTA Mom“, “Girl Scout Mom”, and yes, the big one, “Dance Mom”.

Junior High came and we had a new favorite title, “Parent Dance Chaperones”.  We decided to make embarrassing your daughter a sport.  If it was an Olympic sport I would have a gold medal for sure.

My title and signature as her mother allowed her to be protected from disease by vaccinations. My title and signature on checks allowed her to have straight teeth. My title and signature on liability waivers allowed her to experience field trips, play soccer, baseball and basketball.  My title signed her up for roller hockey camp in the 5^th grade where she was the only girl. My title gave me the right to command her to attend all five days of that camp. I am not sure I was ever forgiven but a few boys learned that you should never underestimate someone with the title “girl”, with a hockey stick and a competitive streak.

I spent thousands of hours at dance competitions. I sat in the rain and once snow watching high school football games just to see her do what she loved for 3 damn minutes at half time.   Parents, be honest, unless your kid is playing, high school football sucks.  AND if your son is playing, hello, have you seen the Will Smith movie.  No, not the one where he drags an alien across the desert while spewing witty dialogue and then flies a spaceship with the guy from the fly after he marries a gorgeous stripper with a well-adjusted son in a ceremony officiated by the President of the United States.  You know, the movie about your growing son’s brain being permanently damaged.  Google “CTE”.  I sat and watched my daughter cheer for your son’s brains while freezing my ass off waiting for her 3 damn minutes on the field.  That title was “Dance Mom”.  There is a reality show by the same name, enough said.

I was a proud Mom when she graduated high school a year ago.

I was a sobbing mess Mom when she left for her freshman year of college.

Those are only some of my titles I have had associated with my daughter.

At around 2 am, on July 18th, while most of you slept, I watched as my daughter laid naked on a hospital bed.  A nurse performed chest compressions. I screamed my daughter’s name as loud as I could while fighting to reach her side. My husband held me back, let them do their job, he said. I barely heard the code blue announced over the intercom with her room number.  In an attempt to reach her, I kicked, screamed and made noises that can only be described as primitive and raw. I lost control of my bladder.

I heard hospital staff say, “is that the Mother” not “Her Mother”.  I was a title to them, a noun.

After an eternity and disturbing every ICU patient on that floor with my screaming.  I saw a man in scrubs come around the corner to where we huddled on the floor. He did not make eye contact.  “We were able to intubate her and restore a rhythm. You can see her as soon as we finish stabilizing her. Her body is currently receiving support.”  I must improvise there since that memory currently causes a buzzing sound and haze in my brain.

I was offered a wheelchair. We entered a room titled “family lounge”.  That is a stupid title for that room. It should be titled “hell”.

We listened as a slow talker top neurosurgeon explained to us the grim situation. I listened from another place as he explained the 50/50 chance of her surviving the surgery to access the clot on her brain. I don’t remember him using her name.  In my head, I was screaming NO over and over.  I was shaking and silently telling him to get to the f@#$%^g point (as my daughter would put it). He needed to go save my daughter. Our titles, Mother and Father, gave us the right to sign the paperwork for him to try to save her.

Her body survived the surgery, but not her brain.  We were asked multiple times to use our titles to sign away her rights for resuscitation.  I kept saying no.  I had looked in her eyes, I stood next to her, I knew she was gone.  Finally, I said yes.

About an hour later as my husband and I sat privately staring at each other hoping that one of us would wake the other up from this nightmare, we talked.  The privacy and quiet allowed us some clarity.  Wait.  She was an organ donor.  I know she was.  I know it for a fact.  By chance we had talked about it less than a month earlier when we saw a news story about the subject on Father’s Day.  She had just come home from work and we were watching the news.  They told the story of 20 year old Abbey Conner and her father, Bill Conner.  Bill was riding his bike from Wisconsin to Fort Lauderdale to raise awareness for Organ donation in Abbey’s honor.  On Father’s Day, the young man that had received Abbey’s heart met Bill in New Orleans.  Bill with the aid of a stethoscope was able to once again hear his daughter’s heart beat.  We both were sniffling.  I said to Hayley, “would you ride a bike across multiple states to listen to my heart beat?”  Her response was “F&^k NO Mom, but I would consider riding a cute Moped”.  We talked about the story, she had questions about organ donation and we both went on with our day knowing that we both believed in the giving the gift of life through Organ Donation.

The doctors had given up on her.  Her life was over.  Nothing more to accomplish.  But they were wrong.  My husband had strength that week that I had never witnessed.  He rushed to find the doctor to use our titles to order resuscitation if she was to code again and asked about organ donation.  Our care was assigned to two amazing women that would lead us through the roller coaster of organ donation.  We trusted the care and control of her gorgeous body to these strangers.  These people make miracles happen.  Our daughter’s decision changed the lives of over 6 people.  She was able to donate her Heart, both Kidneys, her liver and give sight to two people.  There is the possibility that she will continue to change lives through tissue, skin and bone donation.  Sometimes this number is nearly a 100 people.  We knew that she was extraordinary.  But she stopped other families from suffering the pain that we were.  It was HER choice.  As her parents it was our duty to honor her choice and make it happen.

For 5 nights, our titles gave us the power to make decisions that would impact the lives of strangers. We would not leave that building until our daughter did. Each night we had to decide if we were strong enough, was she strong enough to go one more day to allow her heart to grow stronger for the benefit of a total stranger. We asked tough questions.

My baby brother, well he is 38, he asked the questions I couldn’t speak out loud and took notes. Even though she was technically an adult at 19, our titles, Mother and Father, required us to make overwhelming decisions on her behalf. She had been in this magical phase of life.  Not quite an adult, no longer a child. The titles of mom and dad still held deep responsibility.

Now she is gone. All my titles have ceased to exist as they relate to her. I was a Mother of a daughter. I was the Mother of two children. I was the Mother of Hayley Storm McCutcheon.

Each year new words are added to the Oxford English Dictionary, The Definitive Record of the English Language.  Let me share just a handful of the words officially added to the OED in September of 2016.  Moobs, Ommba Loompa, Biatch, Biffy, Cheeba, and Clickbait.  No joke, see link below for the complete list.

What is my title now? Grieving mother? No that is a description. A title is a noun, something accepted and used by society.  When you call a woman a widow you acknowledge that she had a spouse that has died. There is no title for the mother of a dead daughter.

Why?

I desperately need a title that acknowledges She existed and I was her Mother.

This is unacceptable. This makes me angry.  This diminishes my past role.

The death of a child deserves a title.

I deserve a title. I earned it.

Yours Forever,

 Hayley’s Mom

http://public.oed.com/the-oed-today/recent-updates-to-the-oed/september-2016-update/new-words-list-september-2016/