Month: January 2018

In the past two weeks I have been trying something new; getting out of the house for more than the basics.  Store, Hair, Nails, Pick up Henry; those basics. Trust me the Hair and Nails are few and far between.  The last Hair appointment I did get some royal blue highlights for Hayley’s cause and favorite color.  I figured this is the time to experiment.  For months I have been asked to get out, but I usually said no.  Well to be honest what happen the most is I say yes then change my mind at the last minute when I just can not stand the idea of being social.  I have started to warn people; “my answer is subject to change”.  A couple of Saturdays ago I was not given a choice.  This was new.  I was still in my PJS at 5:00 and trying to make a dent in the house projects when I sat down at the computer for a moment.  A message from a long time friend popped up “what are you doing?”.  I debated, pretend I didn’t see it or answer out of curiosity to see where it goes.  She said “I need you to be my date tonight, be ready in an hour”.  I don’t think so, as I sniffed my pits.  I politely declined.  Her response, ” I was not asking, I am telling you I am picking you up in an hour and you will have fun”.  I laughed out loud thinking to myself, I don’t have fun anymore, I tolerate fun, or I fake fun.  Nothing is fun without Hayley.  I told Scott what was going on.  Instead of supporting my need to stay home, he said, you should go, sounds fun.  What sounds fun?  I don’t know where we are going or for how long?  I asked her 20 questions.  When, Where, Who What?  I hate surprises.  Will it be illegal?  Is vandalism involved?  Will I need bail?  What do I wear?

She said I will be there at 6, said she needed to get out herself and then ignored all of my questions.  I quickly showered wondering wtf we were doing.  I hate surprises.  I stood at the bottom of our driveway at 6.  Along came a car with a different friend and her husband that had recently retired and moved away, Is this part of my surprise?  Turns out I ruined HER surprise. She was planning to anonymously sneak a pretty painted rock on to my porch.  It was the nicest thing to do.  She waited with me for friend number 1 that was basically kidnapping me.  She arrived, off we went with me bitching my head off about it.  My negative mojo, “I am only doing this for you since you have gave me no choice and I have not seen you in so long. I really hate surprises.  Freeway? Where the fuck are we going?”

“Fine I can tell you now”, she said.  She assumed I would not try to get out of the car at 60 mph.  We are going to Gay bingo.  WHAT?  Gay Bingo?  Am I really your “date”?  She said it is fun and it is in Fremont.  WHAT?  We are going to Seattle, ugh.  It turned out to be a huge, hundreds of people, event and fundraiser for a big AIDs foundation.  That is fabulous.  It was seriously entertaining.  I couldn’t resist the t-shirt that said “O 69; Grab my dauber”.  Next to us was a gal that truly had the most awful resting mean face.  I finally asked her, did my friend bump you or something?  This did not help.  We didn’t come close to bingo.  What was interesting was that I felt so odd.  I didn’t remember what fun felt like and it was disconcerting. I felt sort of invisible.  Can everyone see my grief?  Is it obvious?

I was happy to be spending time with one of my favorite friends.  A friend that had been through a lot with me over the years.  But I felt guilty, Hayley can’t have fun why should I.  I realized I need to do things for her, I was now responsible to have fun for her.  So I tried.  I succeeded until about 3/4 of the way through then I was seriously just done.  Someone called Bingo one minute and in my head I called I am done next.  I kept it to myself.  At this point I can only handle contact with groups of people for so long and then an alarm goes off in my head and I am done. When I am done it is a feeling of panic, I need to get home NOW.  It is a physical reaction.  I get hot, uncomfortable and shaky.  Grief is not just in your head.  It is not just emotions.  It is physical.  It causes physical pain, discomfort and hinders your ability to perform like a normal person.  Sometimes I fake it really well.  But my smile is fake.  Some people see it, some do not.  I appreciate that some people keep asking me to go out..  Most have stopped.  Which is totally fine.  I still feel taken care of.  But I wonder if people judge me.  That they think I should be getting well faster.  How do you undo 19 years of your life.  Everything for me revolved around Hayley and Henry.  But Henry is so easy, so it feels as if my life was all about her and our amazing friendship.  How do you live without that once you have it?  How do you feel thankful you had it when so many don’t?  Thankful is currently an off limits feeling.  Others that are banned; Grateful, Happy, patience, and Sympathy.  Sounds like Snow White, I should come up with the 7 dwarves of grief.  Another post.

I got home and took a long shower, cried until I was exhausted.  I wanted so desperately to tell Hayley I went to Gay Bingo and show her my t-shirt that I knew she would steal from me.  She needed to be having fun, not me.  The guilt is overwhelming.  The anxiety if I am gone for long is heightened.

Months ago I purchased Lewis Black tickets for Saturday the 20th.  I figured by then Scott and I might be ready to laugh.  I thought a comedian show would be a good option.  Scott had no interest in going so I brought an old friend.  We had a great dinner and the show was funny.  Prior to the show I saw that Lewis goes live at the ends of his shows and reads rants fans submit.  I sat down an hour before we left.  The funniest thing I could think of was my recent Arizona Airport Fart story.  I quickly typed out the not sanitized version.  Lots of ‘F’ Bombs.  It was about why do we have to be so judgmental of farts, everyone farts.  When he went live, he was only answering short questions and ranting himself.  I guess I misunderstood, he won’t read my long story.  I was relieved, and I had writer remorse.

Sunday night he had a second show.  Just as I was getting ready to go to sleep I looked at my phone one more time to see a friend I have not seen in 10 years had posted that she was at the 2nd night show and that Lewis Black had ready my story at that show.  In fact she said it brought down the house and that he closed with it and got a standing ovation.  WHAT?  When it was posted online, Scott and I watched it together.  I was nervous because I had sold him out a bit for comedic value.  But at the end he said that is fucking funny.  It felt nice to get a compliment from him, but at the same time he seemed surprised I was funny.  WTF, where has he been the last 27 years, I think I am hilarious.

Maybe my new job will be writing for comedians!  The moral of the story is that I am not ready for several hours out.  Shorter outings.  Comedy shows hurt.  I was uncomfortable in my seat and my face hurt from smiling for more than a fraction of a second.  My weight is making me so uncomfortable and is my number one priority right now, to get healthy so that I can battle this burden of grief with better tools.  Lately my coping tool has been “what would Hayley say? WWHS  I think what would Hayley say right now.  Sometimes it is obvious what she would say. But most of the time I can’t imagine her words.

The sadness, the darkness.  It is getting deeper.  She doesn’t answer.

 

www.lewisblack.com/live

Watch the live feed from 9/21, Seattle.  Minute 16.

 

This one is dedicated to my “new” friend, Shay.  We have literally been in the same rooms together over the years as school volunteers and Moms.  But we didn’t talk or become friends until Hayley’s death when she kept making me Chicken Pot Pies, which I did not share with Scott and Henry.  They didn’t appreciate them the way I did.  What is sad is that she is moving back to her homeland on the “other side”.  The East Coast.  We recently had breakfast together for the first time and it was fun.  Fun, a word I don’t use often.  I told her this story and she insisted I should share it with the masses.  So I will, but first the moral of the Shay/Dawn friendship.  Don’t forget to look up.  Look up from your phone.  Look around beyond your little group of friends.  Make a point to make one new friend at every school event, PTA meeting, etc.  Heck I have two friends probably reading this that I met on planes.  Social meeting sucks our time but it also allows us to collect people along the way in life.  I will forever be grateful to my Facebook network that has kept me going with everything from kind words to chicken pot pies on the porch.  I will miss Shay when she leaves, we seem like two peas in a pod.  So I plan to just steal all of her friends!

If you recall while in Arizona I became obsessed with the hotel bar and their amazing chili.  This was the best chili I have ever tasted.  It came in a pretty good size cast iron crock.  Like they hang over the fire on trail rides, not that I have been on a trail ride or do I plan to.  This magical chili came with homemade crackers.  It was meant to be shared.  The first night I may have let Scott have a few bites for show.  The second night I didn’t even try to hide the fact that not only was I going to eat the entire thing myself, I was still going to have the banana bread pudding in the mason jar.  So my nightly meal became chili in a crock and dessert in a mason jar.  It was truly Pinterest worthy.  But here is the problem.  Prior to our trip, my doctor added the medication Ambilify to my line up.  The hope was it would give me more energy and help the other medications work better.  I started off with a half and after two weeks worked my way up to a whole.  Right before the trip I noticed, how should I put this, I seem to be very noisy in the rump part of my body.  So I went to my goto WebMD specialist, my cousin, she did find in my list of meds that the Ambilify might have some gastrointestinal side effects.  Um, this was way more than “some”.  So during the trip I had gone back down to a half of a dose.  Unfortunately not prior to the chili love.  I truly felt like I was in one of those drug commercials.  You might be able to get out of bed but some patients might experience the following side effects:  “fecal incontinence, gas, heartburn, headaches, frequent urination, etc”.  Yes on the first one, but that is another story.

So here I am in Sedona having my own Chili eating contest.  Do you remember when you were dating your significant other?  How many dates or how many sleep overs before you tooted, poofed, passed gas, farted or whatever you want to call it, in front of your new love.  Here is the thing.  Scott and I have been married 22 years and together 27, most of those years we have slept in the same room.  During all of those years I have done everything possible not to fart in front of him.  No joke.  He is highly offended by it.  The few times it has slipped he has had what can only be described as a disgusted hissy fit.  Same with belching.  I know.  It IS ridiculous.  But I try to respect his pet peeves as they are not very many.  Now the kids, we let them rip in front of each other all the time.  Never with Scott around.  But our own private contests.  Hayley was known to do it quietly and lock the car windows if she was driving.  Henry when very little would toot and run around saying “do you smell it do you smell it, do you?”.  I would say to him “toot toot went the Henry train”.  So I can see how I may have encouraged their behavior.  I am pretty sure that I occasionally still use that phrase with him.  Kind of like a childhood nickname.  I can see him when he is 32 visiting us and feeling comfortable enough around HIS wife to let it go and I will exclaim “toot toot went the Henry train”.  Let’s just say Scott did not appreciate our “contests”.  He would come home from work, inhale and say “what has been going on here?”.  Without hesitation one of us would say the dog had gas.  We are a classy family that way.  But back to Sedona, It was so complicated to try to figure out how to let what needed to happen without offending Scott.  The bathroom was literally right next to the wall where Scott’s bed was.  If I went out into the living room, Henry from the sofa bed would rat me out.  Scott says that I truly believe that mine don’t smell, but these didn’t,  I swear!  They were just so super loud.  I finally let go and as they say let it rip during the night.  I found myself on outings speed walking through the lobby with my ass cheeks clenched until I could safely get away from other humans.  I don’t even want to think about what it would have sounded like in that quiet marble covered lobby.  So I survived the trip without Scott threatening divorce and we were at the airport at 5:30 am hoping to be on the first flight as we were going standby.  We sat away from the crowd.  The boys were in seats and I sat down on the floor to try to rearrange my luggage and bags to look like one carry on and one personal item.  About 5 feet behind me was a younger couple sitting on the floor with their backs against a wall talking.  I was on my rump, sitting criss cross applesauce when it happened.  Yes, yes it did.  It sounded like a gun shot.  I am still shocked no one hit the ground.  The couple behind me became silent.  I didn’t look up.  I was so mortified I felt light headed.  It was either from the embarrassment or the fact that the fart had been so powerful it knocked the breath out of me.  I could not look at Scott and Henry at all.  I knew if I did and they looked either horrified or were laughing or both, I would not be able to control the tears.  Now the way things were going and from experience that week, I knew that getting up off the ground would be a dangerous time period, kind of like landing and taking off for a plane.  I could not stand up.  I knew beyond a shadow of a doubt that when I stood up I would fart again or worse rapid fire.  I was still waiting for TSA agents to round the corner to find out who had the gun from 60 seconds ago.  Please leave I thought towards that couple.  My cheeks were burning and I felt a hot flash coming on from the embarrassment.  I still had not looked at Scott and Henry.  It is at this moment our names were called for stand by.  I didn’t move.  Scott finally got up and headed to the counter, perplexed I was not handling the details like normal.  He waved me over as they needed my identification.  I asked Henry to come give me a hand up.  I figured if I was going down in the mortification hall of fame, so was he.  My plan was to chastise him.  Pass the farting blame.  Maybe then the couple by some miracle would think that it was not me.  I spent the next 3 hours in a middle seat with my butt cheeks clenched and thankful both my seat mates had ear buds on.

The point of sharing my embarrassment was to make you giggle, make Shay happy and to introduce the topic of “Grief Appropriate”.  In 11 days I will be 47.  One thing that I have noticed at doctor’s appointments is they are starting to use the term “age appropriate”.  I want to throw something when I hear it.   “Oh, you can’t regulate your body temperature?  That sounds age appropriate”  “You are getting hair in places you never had it before.  That is age appropriate”  “you pee a little when you cough?  That is age appropriate.”  “Trouble sleeping?”  Yes, you know, age appropriate.  But what I have learned in the last 6 months is that there is something I am calling “Grief Appropriate”. Grief is so physical.  Honestly some days it is more physical than emotional.  It is not uncommon for me to have one of these symptoms or all of them on any given day.

• Insomnia
• Groggy during the day
• Headaches
• new gray hair
• new white hair
• skin issues
• sinus issues, pain
• dry red eyes
• chest pain
• trouble breathing
• brittle nails
• mood swings
• exhaustion
• restlessness – can’t sit still
• Coughing, dry throat from crying
• not hungry
• too hungry
• memory loss
• difficulty concentrating
• Stomach issues (I won’t list them, but you got the idea already)

I can have one or more of these “Grief appropriate” symptoms a day.  I can even cycle through all of them in a day.  At first I blamed a lot of them on my 32 pound weight gain and that may be true.  But as I have talked to other grieving moms and read articles online, I found that these are truly all physical symptoms of grief.  I believe this is why I isolate myself like many grieving men and women do.   Not only are we so fucking sad, but we truly don’t feel good.  For example, I have seriously had to think twice about going places out of fear of farting.  Maybe it is or isn’t the Ambilify; maybe it is the air I suck in when sobbing trying to find an escape.  But it is all Grief appropriate.

If you know another person coping with grief or maybe it is you, cut them some slack.  Unless they are literally not getting out of bed at all, these physical symptoms are what slows us down.  Please don’t forget that grieving is not just the worst thing imaginable, the loss of a child, it can be grieving a lost career, grieving the loss of normal when you are caring for a child with special needs or an aging parent needing all of your time to care for them after hip surgery.  You are grieving the loss of what you thought your day, week, year or life would look like.  This has physical consequences, so be kind to yourself.

I recently charged my dusty fitbit.  My initial thought was to have a goal of 10,000 steps.  I used to be able to do that.  This was the most ridiculous goal and totally setting myself up for failure.  The most steps I have had this week for a day has been 1,635 and that was today, because I went to Costco.  I was shocked.  But the more I think about it, it doesn’t take that many steps to go from bed to the couch and back again.  So I plan to be kind to myself and work up to it slowly and pray that I can make it around Disneyland on my birthday without having Sara push me in a wheelchair.  Although, that might be Grief Appropriate.

I have been amazed at how caring and generous friends and strangers have been since we lost Hayley.  I know a lot of people but I don’t let a large number in to my squad.  Mainly because it is hard to find that many people that swear as much as I do.  Also, my time was spent with Hayley and Henry.  Mostly Hayley, you know girl stuff.  We did just about everything together.  We had adventures, we did boring stuff like the store or got our nails done.  But it didn’t matter as long as we were together.  Please don’t think I have forgotten my other child.  Henry and I have our special time, things we do together.  He is into things that I am not very good at.  I suck at xbox and PC gaming just baffles me.  That is his and Scott’s thing.  Hayley was my best friend.  I was so lucky to have that kind of relationship with her.  It would have been such a different dynamic with two girls.  Henry is a great balance for me.  I have really been amazed to find how much time I spent talking, texting, calling, sitting with, driving with, or everything with her.  Now that it is gone I sit and realize how big of a hole she has left.

My grief has grown.  Just like Finn, the golden retriever puppy.  I am the crazy dog lady.  We are back to 4 dogs but the pack works for me.  My friends and Scott were oh so clever.  They knew if there was a new puppy to care for that I would have no choice but to get out and stay out of bed between 7 and 2 when there would be no witnesses.  They were absolutely right.  I have so many times groaned when I heard him whine, thinking that at that moment there is nothing more I would like to do but stay in bed for hours.  If I sleep it isn’t real.  My three older dogs would think that was the best day ever.  Sleeping on our bed is their favorite.  What I didn’t expect was that for the last 9 weeks Scott sleeps in Hayley’s room, while I sleep in ours with the puppy. We use a crate for him to keep him out of trouble and safe.  He is ready to sleep by 7 p.m.  Of course I am not.  We usually head to bed between 8 and 9 where he is coaxed or herded into his crate by Scott.  Scott then lays on the floor next to the crate reading on his iPad while Finn paces and cries.  I get ready for bed.  By the time I am in bed Finn is asleep.  A couple of times so was Scott.  I am a night owl, going to bed at 8 is not normal.  So I proceed to surf the net, write, crochet, or draw.  I usually fall asleep between 11 and midnight.  If I have to go to the bathroom or grab a charger, I literally will roll and army crawl away from the bed hoping he won’t notice.  He has a savvy sense of my location at all times.  I can be so quiet and he will always wake up and howl, bark or cry until I am back in bed next to the crate.  He knows his job is to watch over me and he takes it way too seriously.  Finn has to pee at any time between 1:30 and 3:00, occasionally twice.  He then will need to go again between 4:45 and 6:30.  At this point I could be totally hosed.  I can tell if he will go back to sleep until maybe 7:30 or 8:00, but most of the time he is up and ready to chew on you or anything he can.  His size makes me forget he is a baby, just a puppy.  I really expect that he can be more self sufficient.  So guess who has NEVER been a morning person, yet by 7:00 each morning I am downstairs nodding off on the couch while I hold one end of a dog toy or toss a ball for an hour.  Thank you Tena and Stacia.  So clever.

Just because I am out of bed does not mean I am active or getting anything accomplished.  My energy level is nearly as low as it can be and still be conscious.  Today I accomplished one load of laundry, got my nails done and painted some rocks.  I was exhausted by 4:00.  The grief I feel is frightening.  The best days are when I can trick my brain to slightly believe she is up at school.  Everyone’s grief is as individual as a fingerprint.  I have learned that I have judged other’s in the past.  I have thought unkind opinions of when someone should be “over” their grief or at least doing better.  I was so very wrong.  My grief reminds me of a long hallway in a hotel.  Sort of like the one in the shining but with no creepy twins at the end of the hall.  I am trying to get to the elevator at the end of the hall to take me to a peaceful place.  But I never reach it.  During my attempts I may open a door.  That door may be my memory of the night I watched her die.  The shock and disbelief.  They said she would be fine.  My screaming her name as they did chest compressions and her soul left her body.  Falling to the ground screaming and weeping intermittently.  Just when they thought I was calming down, the screaming would start again.  The meeting with the surgeon.  This room sucks.  I would give it a negative 100 on trip advisor.  I try so hard not to go into that room but I am not always successful in keeping that door closed.  I have noticed that the narrative has changed slightly.  Shockingly there is now a twinge of pride and a small smile.  What was done that night saved her body so that many others can live and their mothers are not experiencing this hell.  The smile is that I know for a fact Hayley would find it funny that I peed my pants.  I remember thinking briefly that thought when it happened because my brain was not accepting what it was seeing.  It created a scenario where she would survive.

Some rooms contain memories.  Some are years of similar memories grouped together.  Our 18 years of visiting Cannon Beach.  That room has her naked at 2 splashing in the water in front of our rental house.  Skim boarding at around 11.  Bringing friends as she got older.  Dance competitions at Seaside piggy backed on to CB.  The next room might be all the time she and I spent on my parent’s boat.  There are hundreds of rooms that include 15 years of dance recitals, competitions, costumes, hair and make up.  Another may be the day she was born, holding her in my arms for the first time.  The struggle to become pregnant and the reward on April 29, 1998.  The trouble of preeclampsia at the end of the pregnancy, the hospitalization after as my kidneys shut down.  Even while very ill and hospitalized I refused to be separated from Hayley.  She stayed with me in my room at First Hill Swedish, but there had to be another adult at all times.  Sara and Scott took turns.  Nothing could convince me to let her go home without me.  Some rooms are just me sitting in a chair thinking, fuck, I have been through a lot of shit.  How could the worst nightmare happen on top of all the other shit.  I know everyone deals with shit, but my shit hill is so much higher than almost everyone I know.  I have faced financial ruin, faced death, countless surgeries, a separation, loss of my stepmom, loss of my dad, loss of my beloved grandmother, loss of friends and loss of a career.  I cannot remember one 5 year period where we did not face a major life event.  The big stuff, not little stuff.  Yet through it all we had the two H’s, Hayley Storm and Henry Scott.  They even have the same initials.

One of the rooms in Hotel Grief is the room of kindness.  The things that have been done to show care and ease our suffering in basic ways.  This is my way of publicly thanking everyone for everything and anything they did to ease our pain and make things easier for us.  Thanks to my most organized friend, there was food for weeks and weeks.  In that room I see an alternative where if we had not had so much generosity with food, that would have been a stressor that I could not handle.  My friend left a cooler on our porch for the deliveries.  This was not her first rodeo.  How nice not to have to answer the door.  How nice that everyone understood.  Henry called it the magic blue box.  I have a stack of thank you cards, and every time I sit down to try to write and send them, I can’t figure out what to say.  “Thank you for the brownies, they are my favorite and demolishing all of them kept me from crying for a good 15 minutes”.  My friends say people don’t expect a card.

There was the food and then there was the go fund me page.  I have donated to countless causes in my life.  I raised over 2 million dollars in 5 years for Heart Disease Research.  Never did it occur to me we would be on the receiving end.  Without a job meant no family leave pay.  Had we not had that fund I don’t know what I would have done.  I was planning and hoping to be back to work by October.  When I lost Hayley, I cannot even imagine.  That fund gave me peace of mind and the gift of time.

Little gifts have been left on my porch since the summer.  Books, candy, flowers, wonderful things.  It could have been just a single piece of chocolate and it held the power to make me feel loved and gave me that little piece of strength.

The gift of time.  One of Hayley’s favorite people was at my side to make the candle light vigil for Hayley’s recipients a success.  Then there were the 200 plus people that were there burning their fingers on hot wax.  She made the beautiful Red Barn feel like Hayley.  There was the gift of the property for the service.  The gift of Root Beer, Hayley’s favorite.  The gift of speaking at the service and therefore forever being etched in Hayley’s history.  The gift of plants, flowers and programs.  The giant photo of Hayley.  The handmade cookies with her name and favorite sayings.  The talented musicians both friends of Hayley.  The AV System so everyone could hear.  The talented women that made it all look lovely.  The 500 plus people that stood 10 deep for 2 hours.  The people outside that stood in the heat and listened the best they could from the windows and doors.  The slide show lovingly put together by a friend the night before.  The glassy babies at the service and in my home.  The Hayley glassy baby.  Other gifts of time included decorating a Christmas tree in a coastal theme.  Cleaning Henry’s man cave!  Jen deserves a medal.

This room is huge and everywhere I look are the acts of kindness.  Some were as complicated as my brother handling the details at the end to as simple as a letter or a card.  Random Texts or messages on Facebook or in the comments section of this blog.  I devour those messages as if I am starving.  The majority of these acts of kindness have been performed by strangers or acquaintances that I faintly know, maybe from Facebook.  Community members.  I have never been one to graciously accept help.  I finally stopped stressing about all of it when someone said, “letting people help is more about them than you”.  They would do anything to make this go away, to take my pain.  But they can’t, so they bake.  They do something and by doing these acts of kindness they feel less helpless.

A thank you will never suffice; ever.  I love the room of kindness.  It makes me feel less alone.  Some of these strangers I now call friends.  I am so thankful.  So are Scott and Henry.  I thought about the thank you cards, I could never get through them.  I thought about standing on the corner near Safeway with a sandwich board that says “Thank you to the best community;  I am sorry about that time I called your kids entitled brats”

On New Year’s day, over 20 people joined us in the freezing cold to light flying sky lanterns in Hayley’s honor.  To welcome the new year.  I thought for sure the dock might tip and we were all going to do an unintentional polar plunge.  It was so beautiful, the sunset, the mountain, the lake and the lights.  But when I turned and looked at the people that came I was overcome with emotion.  There were people I did not know prior to this tragedy.  There were people I have known 16 years.  Girls that grew up with Hayley all to become amazing young women.  It was moms and dads.  I will continue to do everything I can to keep Hayley’s light alive.  I am not going to have mine and her lives mean nothing but tears and pain.  Every mother thinks their kids are the best, and they hope that they are good people.  Hayley’s death showed me that she was a good person.  The best.  That room in Hotel Grief is the one with light shining through at the bottom of the door.  In there is Hayley’s light.  This room is as painful as all of the others.  Because now I know what I am missing.  I did not notice how bright the light was until it was gone.  Don’t take for granted the light in your lives.  Take the time to think about some of the Hayley stories and imagine what would your story sound like.  The electricity that powered Hayley’s light was not perfect but it touched so many people in such a short time.  Take the time to be thankful.  Thanks is all I have the strength to give to people right now.  I am trying to learn to “be” all of the things Hayley would expect from me, but I have not had much success yet;  But my Thankful Light is super nova bright.

 

Thank you

 

— Dawn, Scott and Henry

 

Today is the last day of 2017.  The last year that Hayley was alive.  The last day of the most horrifying year of my entire life.  The last day of the Christmas season, Hayley’s favorite.  So many lasts.  So many firsts.  First Christmas without her.  First new year’s eve without her.  First family vacation without her.  It just depends on how you look at it, I guess.  One of the things people have talked about is that this blog helps them understand my grief, their grief or the grief of other loved ones.  It has to be one of the most difficult experiences to explain to someone that has been lucky enough not to feel it at this level.  This weekend there was a clear example that might help.  It is a very simple and raw example.  I will get to it shortly.  These “episodes” are getting more frequent.    Honestly I usually feel melancholy every year during Christmas.  It has been my own fault.  I have such high expectations and steep responsibilities for the Holiday.  I want it to be perfect for my family.  Like so many of my friends I shop for the perfect gifts, I decorate, I bake, and I set expectations every single year that this will be the best Christmas ever.  What I never saw until this year was that those expectations were unattainable.  Mainly because by the time we reached Christmas morning I was so exhausted that I was too tired to enjoy it.  This left me feeling like it didn’t go well.  This year I sat back and watched everyone else stress out.  Most of my shopping was done online.  Henry has always had a simple list, short but expensive!  I didn’t do any late night shopping.  I didn’t plan what to bake, how to package it, present it and who would get it.  I watched all my Mom friends doing this.  Man it did not look like fun.  The weeks leading up to Christmas are absolutely insane for Moms.  Do you think the Dads or Kids even notice?  Probably not.  No one ever says thank you for giving up every free minute of the last two weeks hand addressing 150 Christmas Cards.  Honestly we would only get about 30 cards each year.  That is a shitty return on investment.  Plus I think half only send one when they get one from me.  This year we didn’t send any and we only received about 10.  Maybe people didn’t think a “Merry Christmas or Happy Holidays” was appropriate knowing we are not Merry or Happy.  This made me think of a new tip.  8 of those cards have not been opened.  Why?  Because I do not want to see the beautiful photos of your children, and your family.  Designing and sending cards of my kids has always been my favorite holiday task.  I have been sending them for 20 years, this is the first year I did not.  I will open those cards and enjoy the sentiment maybe next week.  I love all my friends and their children, that is not what it is about.  Seeing you have what I don’t stings and if I am honest brings a feeling of jealousy.  So my tip;  if someone has lost member of their nuclear family.  Spouse, daughter, son.  Do not send your family card with the perfect photo.  The one in a pose your family never stands in.  I know you don’t mean harm but it might be hard, it might be a trigger.  Send a handwritten card.  “We are thinking of your family, we wish you the happiest holiday possible.”   Nothing has been normal since July 11th.  So send the card, but don’t send a photo of your normal Christmas.  AND stop running around and making yourself exhausted.  You know what our kids want for Christmas besides the iPhone X; they want you to be happy.  They want their family to be happy.  You really can’t be 100% happy when you are exhausted and thinking about how much you have left to do.  Simplify.  Be Present.

Let me try to get back on track.  This is an example of the episodes I have been having.  I have been painting rocks.  It is fun, it is relaxing and when doing it with a friend it is a fun way to catch up and relax together.  Plus I have to get exercise to go hide them so people can find them.  I needed a better tablecloth to add to my rock painting kit.  I remembered that I had two in my Christmas box that every year I never use.  They are more outdoor linens.  One would be perfect.  Should I pick the red or green.  Green, more year round, better background for painting.  Scott was in the family room.  I went into the garage grabbed the item.  I came in and was folding it neatly when I flashed back to when I purchased the tablecloth and what it was used for.  It took my breath away.  I set the folded green cloth down on the table and with both hands on top of it to hold myself up, I began to weep.  Deep sobs.  Seriously I should send in a photo of myself at these moments to Webster Dictionary for them to put next to “ugly crying”.  Poor Scott, came over and was perplexed we had just been chatting and all of a sudden I was bent over as if I had taken an invisible fist to the gut.  I explained to him that the tablecloth brought back a happy memory and the stark comparison to that day and today was just so overwhelming that I had to stop everything and just remember to breathe.  Of course he doesn’t remember the tablecloth but with his hand on my back I told him it was from a day spent playing in the snow years ago, maybe when the kids were 4 and 8.  It was at this property in the mountains were you reserve tents and space.  You take a horse drawn sleigh to the destination.  The location had a terrific sledding hill.  You shared a tent with a fire with other families.  There must have been over a dozen Sammamish Families there that day.  Probably more, there was easy 75 people sharing food, drinks, and sledding together.  The kids couldn’t escape or sled into the street, it was a perfect bowl of fun in the mountains.  I can’t remember everyone that was there but I bet I know dozens of them better than I did before now.  I had bought those two table clothes to cover the picnic table.  Susie made her Chili and hauled that big pot all the way there.  I was in charge of sweets and to simplify, I had filled a basket with ding dongs, ho hos, and twinkles!  Super easy to eat with gloves.  I was a hit.  It was truly a fun day.  Hayley spent the day playing with her brother.  Kayla, Hayley, Henry, Doug, Justin, all made forts and had an epic snowball fight.  Henry got pegged in the face and I remember cuddling him in the warm tent.  Hayley came back in and said “come on momma’s boy we need you our team”.  She so didn’t need the 4 year old on her team, but that was a moment of sister kindness I will never forget.  We all went home exhausted, dirty, cold, some of us buzzed and looking forward to getting a spot on the reservation for the next year.  Except Doug, I think he hurt his back, I can’t remember.  I packed those tablecloths with my decorations and used them here and there but they will always be a reminder of Sammamish heading East for the day.  I reminded Scott of all these memories.  He said quietly ” I remember”.  I told him this is what happens, the memory hits and I am a mess.  I remember details.  My long term memory is super accurate.  I am the keeper of my family’s memories.  Scott remembers that day but not all the details.  He wouldn’t remember the twinkles or Henry’s “injury”.  It is excruciating painful because you let her into your head and your heart when you recall a loving memory.  You quickly realize that you will never have that kind of experience with her again.

That moment or episode is like you just lost her again. All of that because of a tablecloth.   It is so unfair.  I have lost my child.  Then grief steals your memories.  It is a thief that takes your happy memories and covers them with a layer of fog, and sprinkles regret and sadness over them.   Just like the Grinch when he took everything from Whoville.  What I can’t figure out is how to get past the fog and still find a way to want to sing in the middle of the town square.