Hayley's Mom

It has been 10 days since I posted.  As April 29th approaches I am barely hanging on.  This makes it hard to write but it also makes it more crucial that I do write.  Writing keeps me sane.  April 29th along with May 8th are the two most important dates in my entire life.  Hayley and Henry’s birthdays.  I loved having them so close together.  When they were little we even had a couple of big joint birthday parties because Hayley’s friends were Henry’s friends.  They let him follow them around and always did a great job including him.  Although sometimes that resulted in excellent blackmail photography like the time she dressed him one by one in each of her dance costumes and haw him pose appropriately.  He had so much fun.  Anytime he had attention from her, he was a happy kid.  He was her shadow.  That boy sat through so many dance recitals and dance competitions it might be considered child abuse.  He even took a class one year and had his own recital performance.  Like many activities Henry does, he tries it once and then is done.  He said “I like to try different things and that wasn’t my thing.  I just wanted to see why she likes it”.

Once April started, the birthday talk was on.  She loved celebrating birthdays.  Her own was her favorite!  She loved it more than Christmas.  April was when I had to start planning parties for both kids and brainstorm with Scott the perfect present.  I thrived on creating birthday memories for both kids.  There was the Bellevue Westin surprise shopping, movie, dinner and sleepover party.  There was the epic carnival themed party at Beaver Lake that we invited Henry’s entire class for.  Hayley’s friends manned the different booths and activities.  There was the surprise joint Disneyland trip.  There was the car on the 16th birthday.  That is only some of her celebrations.  Do you know why I did it every single year?  Because she never took it for granted.   She never acted spoiled.  This made spoiling her a true joy.  She would tell Henry her birthday went from the 29th until his on the 8th, it was a birthday week.  She would wave her hand and say “you can have any days you want after that but you have to share it with Mom, mother’s day”.

Last year her first college birthday fell on a Saturday.  She was so happy about being home for her birthday.  I think she expected a marching band to greet her in front of the house when she drove in on Friday.  Her smile always sparkled on her birthday.  She wanted a homemade cake most years but as she got older it was only a Safeway cake that would do.  She wanted a plain cake for her 18th birthday.  I didn’t listen, I ordered a Monster University cake.  Cute right?  She was going to college.  OMG, she pitched a fit in Safeway.  I have never been so shocked to see bratty behavior.  Evidently I should have listened.  After I calmed down I took the cake back to the bakery and begged them to make it generic.  We pulled Sully and Mike off the cake.  I did put them on the counter to remind her how insane she acted over a cake!  I didn’t realize that 18 was time for adult cakes not kid cakes.  I was in denial.

My nightmares have become more frequent.  They happen during the day too.  Something will click and a memory will start to play on repeat until I am a puddle of tears.  The worst are of the night I saw her die.  The most annoying has been the brain worm of a song she would sing to me.  If she caught me dressing she would sing “do your boobs hang low, do they wobble to and fro…” you know the tune.  It is then stuck the rest of the day.  She thought this was hysterical and would not stop until I reminded her that it was her fault since she breast fed for 2 years.  For some reason she loved this, she seem to feel proud and connected to me.

April has been incredibly eventful.  Some things are too new to write about.  But it is that date slowly approaching that has me in a sweat dripping panic.  I used to love April.  Now each and every day that goes by is a slow walk through hell.  When I became close to one of my best friends who had lost her daughter when the girls were 6 I asked her how did it feel.  She would always say “a slow walk through hell”.  14 years later and she is still walking that path.

In addition to the vivid memories and the deep aching pain, the anger has also been an issue this month.  Anger at the people that made her feel her body was not good enough.  Anger at the adults that did not protect her from those people.  I am furious when I hear those people say that the high school is a safe and loving place for students.  I call bullshit.  When I see a “Wolf Strong Pack Strong” sticker I want to vomit.  I am angry at the doctors that caused the issue, the ones that couldn’t diagnose it and the ones that told us she was gone with little or no emotion.  I am angry at all of them.  They destroyed my world.  But most of all I am angry at myself for not saving her, for not doing enough to save her.  I was her advocate and I failed.

The battle is real, it continues.  There is no timeline for grief.  I wish there was.  I wish it was like recovering from an accident.  A predictable recovery.  It is not.  It is unpredictable, brutal, soul crushing, painful, exhausting and never ending.  Most decisions are made at the last minute and I usually change my mind at least 3 times.  We decided this last few days to go to Seabrook on the Washington Coast.  Hayley lived for the ocean.  I am hoping that being there will bring even a small speck of calm and peace.  I convinced or bullied, kind of the same thing to me, my cousin into flying up from Vegas to spend the weekend with us.  My brother, sister in law and nieces will also come for the day.  We plan on releasing lanterns on the beach that night.  There will be a cake but she will not be there to blow out the candles.

 

What is that phrase… April Rains bring May showers?  Yeah, not here.  It has rained and rained.  What it has brought me is filthy floors from a dog that loves to be out in the rain and dig in the mud.  Get a golden retriever they said, it will be good for you they said.  So much this month.  We started a bathroom remodel.  We had leaks a long time ago in our master bathroom so it was time to rip somethings out and make sure it was all okay, so might as well remodel.  That logic makes sense right.  Well being that I lack strong cognitive skills right now I didn’t really sit down and calculate how much it would cost.  Uh oh, is right.  It is the one room money pit.   How can a room that is 12 feet by 11 feet cost this much to put back together.  Today, day 3, was the day of the flooding.  Evidently the builder used cheap ass plastic pipes that are brittle and break easily.  While we were out the poor contractor dealt with the first flood when a fluke accident had his hanging light fall and shear off a pipe.  Every towel in my house was used.  Then when we were home, it happen two more times.  So we are without water for the night.  The boys just keep pissing in the backyard which is not making me happy.  I have to fill the toilet tank with jugs of water.  I have stopped all liquids and solid foods for the evening.  I was so agitated by 7 o’clock I had a xanax for dinner.  I now have a better understanding of friends that have remodeled.  I can’t imagine doing more than a bathroom.  Plus I am the designer for the project and the general contractor.  No pressure.  Add that Scott is one of my “subs” and we are going to be in for a lot of refills this month.

It is national donor awareness month.  Seems appropriate since Hayley’s birthday is the 29th.  Friday is green and blue day.  Wear the colors and if possible tag me in a photo using #donatelife and #belikehayley.  As soon as April hit my anxiety has climbed.  Birthdays are a big deal in our house.  She would begin planning her birthday back in February!  Hayley loved her birthday more than Christmas.  I threw the best birthday parties.  I loved every minute of the planning and the execution.  I loved the gift shopping.  I strived to find something she had not asked for but would love.  I don’t have that to do right now.  It is brutal.  When does it get easier?

We accomplished a big milestone last weekend.  We traded Hayley’s car in for a car for Henry.  He didn’t want to drive HER car.  I get it, but it was so hard not to have it in the driveway.  That was her baby.  She loved having her squad in her car and it was her means to get back and forth from school to see me.  This was the most difficult thing for Scott so far.  For me there was also some relief.  Every time I would drive into the driveway, which is several times a day, I would see the car and have this fraction of a second of “Hayley’s home”!  It was fleeting but it still happen nearly every time.  I was always so happy to see that car.  Now I see a car that reminds me of Henry and his big milestone coming up without his sister.  The same week she would have been 20 he will be 16 without her.  He is hurting.  He has been for 8 months, but it is starting to show.  He sleeps a lot and school is becoming a challenge.  This afternoon he gave me a wonderful gift.  He took a nap on the couch with his head on a pillow in my lap.  I napped too with my hand resting on his head.  What a treat!  He is almost 16 and I know that these moments will be rare.  I even had to pee but I held it until he woke up because I wasn’t going to miss a minute.

Today we went to Olympia for an awards ceremony for donor families.  I have been excited about it because any opportunity to honor her memory is a good day for me.   I thought it would be great to be with “my people”.  Everyone there has experienced the same pain I have.  But there is where it went wrong for me.  There were about 80-100 people in a formal room in our beautiful capital building.  The chairs were tight so we were all sitting arm to arm, butt to butt.  What was I thinking?  Yes, being honored by the Governor is thoughtful and appreciated.  Being in a room with 100 people that also loved and lost in the last year is very intense.  Governor Inslee was very authentic and sincere.  His own son recently was the recipient of a cornea transplant.  After they read the names of all 120 people that have been organ donors in the past year in Washington state.  Every name has a story.  Every name has a family.  My grief is so overwhelming and invades every breath that I have become so self centered.  I feel as if I am the only one hurting this much.  I feel I lost the most.  I lost my best friend, no one could possible understand how I battle each and every single day.  I realized at that moment how egocentric I have been.  Because those people in that room, they get it.  I got more agitated as the names were read.  Sometimes a family member would make a wounded sound when their loved one’s name was read.  People cried.  When it happened, “Hayley McCutcheon”, I wanted to stand up and scream, did you hear that name, that was my child, that is my love, my heart and my soul, that name.  She should still be here don’t you understand.  I don’t want to be a part of a group.  I want to be alone with my grief.  I want to keep her alive in my world.  If they read her name with all of your deceased loved ones, how can I pretend this is not happening?  I can’t.

After the ceremony we had a reception with lunch.  We were encouraged to circulate and hear other’s stories.  What?  I tried.  The first was the lady I sat next to in the ceremony.  Her 27 year old daughter was killed by a drunk driver 6 weeks before her wedding and the same week Hayley died.  I heard the story and I heard how little jail time the driver was going to get.  I watched her shake with anger.  I tried to ask appropriate questions.  She asked about Hayley but she really wasn’t listening, you could see she was lost in her story and thinking about the pending sentencing of the woman that destroyed her life.  I saw my own self centeredness reflected back at me.  We left with some flowers and a certificate.  The certificate is like so many I have in my Hayley box.  Certificates for soccer, dance, and student of the month.  Now I had another to add.  A piece of paper that basically says good job on your decision to give life to others when you died at 19.  I want to burn it.

It felt like a funeral reception for so many.  I just felt so sad for all of these people, because I know how they feel.  The food was excellent, so on top of being sad, I blew my diet.  They had a table with like five different cookie bars.  Fruit, Quiche, wraps.  I was like an unsupervised toddler at a birthday party.  I believe that I am glad we went.  If it was an annual thing, I wouldn’t go again, but every single person that works for Life Center NW was there to honor us and Hayley.  The sincerity and appreciation that was shown was beyond compare.  It truly takes special people to choose that line of work.  Really extraordinary people.

The week of April 23rd, Q13 Fox will air Hayley’s story.  It was filmed weeks ago and has been delayed a few times.  It won’t all be about Hayley but we are thankful to my friend that is producing the piece.  I believe it will show organ donation in the light it deserves.  It should also be posted on their webpage if you miss it so I will make sure to share the link.  Some of the interview is now dated but hopefully will still be impactful.  I have more to tell, more to share but I am not ready yet.  Wear blue and green for Hayley on Friday.  Ask friends and family if they are a donor.  If not refer them to www.lcnw.org for more information and a way to register.  Thank you to this community of readers for supporting me and always lifting me up.

 

 

My life is a winding river.  Sometimes it is sunny and sometimes it is raining.  Since Hayley’s death there has been a boulder in the middle of my river.  The river is my life, my days.  The water, time.  Every morning a leaf falls into my river and begins it journey.  It encounters many obstacles.  Some are small and some are bigger.  But nothing is as big as the boulder.  Small obstacles are fallen branches or small piles of rocks.  These may be how I feel physically that day.  There may be a branch to navigate around that is my Fibromyalgia pain.  A small rock may be the headache I went to sleep with and it was still there in the morning.  A fallen tree along the edge of the river may be a social engagement I made that I must navigate through.  As my leaf floats along, it may go around the fallen branch or it may go under coming out water logged on the other side.  Tired and floating slower the rest of the day.  As it floats along there are dips and currents.  These are memories that assault me all day every day.  It could be a piece of clothing of hers that is mixed in with my clothes.  It is the pink petals of her flowering plum tree that are littering
her beloved car as it sits lonely in the driveway.  It is a piece of mail with her name on it.  It is a photo on Facebook of one of her friends moving on with their lives, doing the things she should be doing.  The water gets rougher and my leaf must navigate these bends in the river.

Sometimes it gets caught on one of those branches and it doesn’t move on for a long time.  The force of the water, of time, still hits the leaf as it is snagged but it won’t budge.  It is frozen in place.  The water runs over the leaf and the tears keep me in place.  It becomes rough around the edges as the current pushes past.  Something jars it loose.  It is time to pick up Henry.  That lunch date.

The path the leaf takes every single day is always different.  The one thing that is absolutely the same is the big boulder in the middle.  There are only three options for my leaf.  It can go to the right where the water is calm, a memory of love, a smile, a feeling of being the luckiest Mom in the world because she was mine for 19 years.  The leaf rarely goes right.  If it goes left the current is rough and it bounces along getting more water logged until it sinks to the bottom.  That leaf took a xanax.  Then there is the third option, the leaf runs smack into the boulder and is stuck there for the rest of the day.  It is a memory of cpr, her pain, regrets, guilt, sadness, tears and everything I did wrong that holds that leaf against the boulder.  Eventually the leaf drifts to the bottom of the river where its day’s journey ends.

I can’t predict the path the leaf must take.  I can’t tell you what time it will encounter the boulder.  All I can tell you is each and every day as my feet hit the floor another leaf falls into the water.

The past week was long.  Usually the weeks blend together, not this one.  It had a distinct start, Sunday.  A finish, the next Sunday.  I choose to share my personal life in the hope that it helps someone.  Helps them know they are not alone.  Helps my friends know how I am doing.  My writing is where you will find honesty, not in the brave face I put forward.  I am constantly trying to find ways to honor Hayley.  Yes, part of me has this great fear she will be forgotten, that I, as her mom will be forgotten as people justly move on with their lives. This week it was license plate frames that say #belikehayley and be an organ donor.

I finally wrote to Hayley’s recipients.  I have been warned it can take years for them to reach out.  This would be heart breaking for me.  I am trying not to check the mail every day, trying to forget the heartfelt letters I sent.  It will happen when it happens.  I am also starting to work on the Be Like Hayley Foundation.  We will have a small fundraising event this summer to get it started.  We have the goal of awarding $5,000 in college scholarships in Hayley’s name for the 2019 graduating class.  Any additional funds this first year will go to create family packs at the local ICU where we spent the worst week of our lives.  Things like socks, toothbrushes, etc.  You often are arriving there in a hurry and not everyone has this amazing community around them like we did.  If I needed a toothbrush brought to me at Cherry Hill, I would have had 25 by the end of the day.  But not everyone is that lucky and may be from out of town, even out of state.  I want to provide some comfort during the worst time of their lives.

I don’t write about Scott and Henry that much.  It may seem that I have forgotten my other child.   This is so absolutely wrong on so many levels.  I choose to offer him privacy.  I figured out early on that a well meaning parent was talking about the blog and their child heard them and then said something to Henry like “your mom says you guys need food”.  So for those that have kids that may know Henry, just be careful what and how you say it in front of them.  Henry’s way of dealing with the notoriety of being the kid whose sister died is to lay low.  He doesn’t wear a #belikehayley bracelet and he doesn’t talk about it, at all.  He doesn’t want to be like her, he wants her here with him.  He instantly went from one half of a pair to an only child.  I am 47 years old and still can’t wrap my brain around what happen.  I cannot still function 100%.  His 15 year old brain may not really understand the emotions he is feeling but he is doing better than me.  The professionals had told us it may take 6 months or longer for it to really hit him or manifest.  Well like clockwork, 8 months in, I believe his grief has been cooking inside him.  Lots of feelings or ingredients that he didn’t recognize and now it is starting to boil over.  He still may look the same to his friends, but to adults he is different.  His sleep is not good and he is currently fighting beside me with a sinus infection which really has him worn down.  Add in the stress of High School and it is amazing he is doing so well.  I know he wishes I would stop asking him about how he is.  I usually get no specifics so I will try more direct questioning, are you sad about your sister?  Usually I get a “well duh mom of course I am sad” or once a “WTF Mom, what do you think?”.  Ahhh, he IS still a 15 year old boy.  So now at the the start of the week I witnessed his grief, then witnessed Scott’s grief as he comforted Henry. The other half of my heart is now broken.

This broken heart has manifested itself in physical ways.  More of the same and some new battles.  I have a sinus infection and a side of bronchitis but with no cough.  My doctor listened to my lungs and when I pointed out I had no cough, she said oh I hear it, just wait for it if you want or take this really strong ass antibiotic and dig out your inhaler.  I am so tired.  This tired is still the same bone deep tired of the last 8 months but now I care more about how bad the house is and not able to physically do something about it,  just frustrates me.  Scott had a very stressful week at work with major changes.  He is not a fan of change.  So between both my boys it was stressful and I had to be the strong one.  But it seems like we take a hit of some kind every time there is a small glimmer of hope that I can keep putting one foot in front of the other.  A lot of this I bring on to myself.  We have been waiting years to remodel our master bathroom.  We have been stressed about potential leaks going on behind the walls and under the tub.  We finally started moving forward slowly.  Months ago I purchased a tub and vanity from Costco.  I love Costco.  I found the right people to work with and am acting as my own designer and general contractor.  We are so lucky to have two men working on it that are friends too.  So Saturday one of them and Scott started the demo.  So now I have the added stress of a gutted bathroom and sharing the very tiny 2nd bathroom with a 15 year old boy.  Plus the reality that we probably bit off more than we can chew considering I still have not found a new job.  Poor Scott could barely move Sunday morning from Saturday’s manual labor, but he rallied to take me to the Ale House for my favorite brunch.  I tempted him with a reminder of how much he likes their bloody Marys and wouldn’t that help the pain.  He was two Marys in and we had a really great meal.  We even had not ran out of things to talk about.  This may be why I didn’t notice that my antibiotic laden stomach was trying to signal me SOS.  Our favorite waitress, Karen came with her bill when suddenly I had to GO.  I didn’t have to go as in leave the restaurant.  I didn’t have something trigger a crying jag and was trying to get out of the restaurant in a hurry.  Nope, I wasn’t that lucky.  I happen to be sitting with my back to the restroom wall.  I practically shoved Karen out of my way to head there as quickly as possible.  As I rounded the table next to us with the couple sharing one side of the table.  How cute.  I began a tiptoe small step movement with my legs because just like in the Bridesmaid scene in the street, “It’s happening”.  I was actually pooping my pants.  Not a skid.  Not an almost.  By the time I got to the bathroom it had soaked through my Atlheta gray joggers and I was left in the stall in tears and no cell phone.  Okay, I said to myself you can handle this, just don’t throw up, maybe it has not soaked through to the other side.  Fuck, yep, it for sure had.  Oh my god, Dawn, get a hold of yourself you need a plan here.  I had no jacket, no cell, nothing but the humiliation.  I pulled my tee down as far as it would go, not far enough and stuck my head out the door hoping Karen would come by.  Nope, remember, unlucky!  A woman attempts to enter.  I seriously for a second, thought about blocking her entering.  “oh HI, no, I am not done, just need to back up to the sink here and wash my hands”  Shit.  While she was in the stall I knew I had a very limited amount of time, like on a stop watch, before she came out and would quickly see what the problem was.  I exited and headed out of the backdoor.  Ha ha, yes I get it.  Walking as fast as my discomfort allowed.  I got to our car and thank goodness Scott’s pain had distracted him and he left the car unlocked.  Keep in mind I have now left him sitting in the restaurant for a good 15 minutes.  I found a jacket in the car, tied it around my waist and headed towards the front door.  Just as I reached it I saw Karen going by with eggs and bacon.  Really no importance as to what she was carrying but it left an impression on me.  I said “psst, Karen, I had a little problem, could you tell Scott to grab my stuff and meet me in the car.  She actually chuckled and said no problem.  I went to the car and climbed into the driver’s seat sitting on so many coats I had found in the car that my head was practically touching the ceiling.  My two bloody Marys in husband comes out and is “what the hell is going on?”.  “I shit my pants”.  “You what?”.  “Seriously do not make me repeat it, I shit my pants Scott as in I am sitting in shit right now”.  Is that clear enough?  “That is disgusting, what is wrong with you?” and  “don’t forget to stop for gas”.  WTF.  I am not stopping for gas I am sitting in my own shit on a pile of my own coats.  He can’t even look at me he is so disgusted.  He then says “Well you are going to take a shower right?”.  OMG, how many drinks did he have?  “What do you think Scott?  Of course I am.”  I swear his disgust was both warranted and really pissed me off.  He could not look at me the rest of the day.  Which is fine because I spent it curled up in a ball with my wet hair from my very long shower and occasionally cringing and crying as I relived my humiliation.

So here we are the middle of the night, telling lots of people I shit myself.  I am itchy from the antibiotics so took a midnight shower.  So no-one can say I hold back or shy away from anything embarrassing.  And if you have had the experience of shitting yourself and you are not a toddler, well look you are not alone and I hope you feel a lot better about yourself.

I think I am avoiding real life.  In real life we are a two income family.  Half of our income comes from Scott, half from the person that I was before July.  I am forever grateful for everyone that donated to the go fund me page.  I have been so self conscious about that.  But without it we would be in big financial trouble.  It also allowed Scott to be home for 3 months.  I don’t even remember what we did during that time but sleep a lot.  It seems a blur.  Thanks to the fund and unemployment I have been able to grieve in private.  But I have to get back to work.  But I don’t know what to do.  I had the job that was a great fit for me.  It was ruined by the greed and narcissism of a small number of people.  I didn’t get a chance to grieve the loss of my job because something so much worse happen.

How do I apply and interview.  I can see it, “Please hire me I only cry 8 times a day now”.  I am pretty sure that interview won’t go long.  I can’t imagine trying to “sell” myself.  How do I sell something so broken, so sad and so inefficient.  The solution is to work for myself.  But that takes time and money I don’t have right now.  I am moving down the path of being a college planner for families in my community.  Parents would pay me to help their child navigate the complicated world of applying for college.  I won’t be working with the Ivy League kids, but the ones like Hayley.  Kids that want to stay in the PNW maybe go South.  I think I would be good at it.  It will require more schooling and the time to build up clients before I am back on track.

Option two is my dream.  Actually Hayley’s too.  We even wrote a business plan together.  We wanted to open a self dog wash here in Sammamish.  Similar to a car wash for dogs.  There is one at Marymoor that is no frills.  Mine would have tools to groom your dog, leave the mess and go home happy.  We have the name, Bark Club.  We had the marketing ideas and how we would get it started.  Our fantasy was to open where Yo Plateau was.  Hayley thought it would be cool to have it where she had her first job.  She and Henry would work there in the summer.  I could bring one of our dogs to work with me.  That was the plan, the goal.

But I am currently paralyzed by my grief and the financial challenges of either option.  How do I stop worrying and step forward?  Can I step forward?  That would feel like leaving Hayley behind.  I am still in the denial phase.  This can’t be happening, I will wake up soon.  I have survived every type of life challenge you can imagine starting in the 5th grade.  It shaped me in positive ways.  It is probably while I am still standing.  I went to a different school each year until High School.  You could become an introvert and not get close to anyone so it won’t hurt when you move again.  But what I did was get close to people quickly and hang on tight even when I left.  Thanks to social media I have friendships that survived Kindergarten, Junior High and High School.  I have new friends that I grasped in my time of need while leaning on the old ones too.  I think the reason I was able to get close to people quickly was that I was alway looking for that unconditional love.  Love that was not dependent on behavior, grades, or all the things marriages demand of us.  I finally had that with Hayley.  I love my Henry so much it hurts to let him out of my sight each day.  But Hayley was built like me, she had my personality, we thought the same way, she was truly my soul mate in a way that Scott or Henry can never match.  I don’t know if it was being the first born or female or both.  But my best friend was my daughter.  Where was I going with this?………….

Oh yeah, being able to move to the next phase, working again.  Contributing to supporting my family.  I think this writing is taking me down a path of how this challenge is different than all of the others.  In the past, there were things that didn’t change when something major did.  There was always something that I could cling too as the same.  In Junior High, when I moved and left my best friend.  We wrote letters and talked on the phone.  I knew that I could reach out to him whenever I needed to.  What I am missing now, there is no going back.  My family is not the same, my personality is not even the same.  How do you move to the next step when it seems so daunting.

I am a clutter bug.  I like that description better than hoarder.  I think that the moving around a lot left this need to hold on to my “stuff”.  The problem is that this house has a gorgeous floorplan, but no fucking storage!  I am not sure what moron gave us a soaring 2nd floor ceiling in our front room but teeny tiny closets.  And god forbid you give us a closet in every room.  Seriously.  So here is what happens with items that I can’t part with, say I will deal with or need later.  Walk to garage door, open and toss in to the mounds of clutter.  Add the fact right now we have a new bathtub and vanity sitting in there for our master bath and you have a huge problem.  We have boxes from when my Dad died.  Things I need to go through and decide what to keep.  My Dad died 12 years ago.  Then we have boxes of Scott’s parent’s stuff.  Don’t forget that a couple of weeks before surgery, Hayley gutted her room.  College dorm life had taught her to try to live clutter free.  She wanted a new room and all that had to do with childhood or pre-college life was put in bins and boxes and you guessed it put in the garage.  When she came home for the summer she also put all of her dorm stuff in my bonus room/office.  We painted her room.  She got new bedroom furniture.  The plan was we would move her stuff back in as she recovered.  She had visions of laying in bed propped up with pillows with a drink with a straw, while she bossed me around and told me what to keep and where to decorate.  That didn’t happen.  My office even has duffle bags from the dorm yet to be unpacked.  Laundry that was in her hamper.  The garage has a box of dance trophies, purses, and stuffed animals, pillow pets in huge black trash bags.  What do I do?  Today when we worked on the garage with our Uhaul truck for a dump run it was brutal.  It was like this:

Scott holds up a box of old work stuff.  “Fuck yeah, let me toss that”.  Then the garden products.  Scott you can’t keep it, if we need that preen we will get some but have you seen the yard?  It is beyond what preen can do, toss it.  Then it is “Omg there is a box from her dorm with her favorite clothes.  Remember when she blamed you and Henry for throwing it away because she thought for sure it was in a garbage bag?  Yeah she was pissed”.  Figures it was in the garage.  “Oh wait, Hayley touched that, you can’t toss it”  “OMG, look she made this vase”  “OH shit that wipe board has her Western count down in her own writing, that stays” “I remember when we got those bears at the zoo two Christmas Eves ago” You got it, “that stays”.  If we had just cleaned the garage a year ago it would be so much easier.  We would not know what we were missing.  Scott really helped me understand the emotional connection to this stuff when he said something about the puppy.  He said “it feels so weird that she never met Finn, she would have liked him”  “She would have loved him, she wanted a golden retriever, this was not an accident Scott.  Plus she had a hand in it, the card “open when you want another dog” that was a deal closer for you.  She told you to get the dog”  “Maybe she is reincarnated as the dog”  “Scott how much have you had to drink?  First if it was her he would be a bigger asshole and for sure would take big dumbs in front of Henry’s bedroom door.  Second, time to lay off the Gin.”

The garage has been our shame for over 10 years.  Scott would always open it and grab the mower and shut it quickly in case a neighbor saw our dirty little secret.  We would lock the door and put a sign “please leave closed” when we would have a party.  I have friends now that I have let see it because we need help and I don’t care about much anymore.  They all say, “oh honey you are not the only one who has a garage that looks like this”  I think they are full of shit.  I have a friend that said when we started this project, “our garage is a mess I need to work on that too”.  What?  Their garage has a car covered for protection and no clutter.  Is there imaginary shit I am not seeing?  This would be someone I would never let see my garage.  I know we will feel better when the garage and the inside of the house is clutter free.  But how do you do that.  Everything here was here when Hayley lived here.  That makes it special in my mind.  Yes, I know there is a show for this and that is exactly why they send a psychologist with the hosts.

Don’t get me started on clothes.  Because I have gone through 6 sizes in the past 5 years.  I have wardrobes in each size.  It feels like such a waste and failure to get rid of anything smaller than what I am now.  This would not be a problem and probably is pretty common if we did not have the stupid triangle shaped closet from hell.  So no where but baskets on the floor to put these clothes.

Where was I going with this?………Oh yeah, moving to the next step.  I feel that I can’t for the following reasons in no particular order:

1. Financially impossible to do what I really want
2. I can’t throw away items that Hayley touched
3. If I do something new, Hayley won’t know about it
4. I cannot go back to work full time until the clutter is cleaned up and the house is nice and tidy
5. I don’t have the energy to do any of the above
6. Xanax does not help
7. The future does not include Hayley

I am going to make a list and just try to check items off.  Go through a box a day.  Get rid of a bag of clothes or junk a day.  Sign up for that entrepreneur class.  In theory this sounds like a smart plan, but that is the thing about grief.  Plans never happen as planned.  You don’t know when you won’t be able to move for a day.  You don’t know when you will have to stop and scream and weep.  You don’t know how bad the physical pain of your loss will be each day.  Hayley used to say “I just want to pet all the dogs”, maybe that is my answer.

The past 7 months I have noticed a profound difference in my ability to function.  I know, obviously curled in a ball crying most of the day is a difference.  But I mean I feel disorganized and intelligence challenged.  I have always prided myself on being an intelligent person.  Now I am just happy if I remember to tie my shows.  Now some may be thinking that what I am about to describe is “age appropriate” but I am not buying it.  I am only in my mid forties.  My personal age thermometer is 41 and 42 are early forties; 43 to 47 are mid-forties and 48 and 49 are late forties.  You know, as in say hello to 50 really really soon.  I am 47 as of January.

Some of the more common examples of my brain challenges are walking into a room and having no clue why I am there.  I know this is something that starts happening, but I am talking like the scary, I know I went there and it has only been 10 seconds and there was a reason, but no matter how hard I try I can’t remember.  I just stand there with my dogs at my feet cocking their heads while I say “what the fuck?”.  Then there are names!  This is so bad.  I literally cannot remember the names of people I know.  Like really know.  It is more than not remembering who was involved in a story I am telling, it is they are sitting next to me and I have no clue.  I was recently really upset when I was on my way to a meeting with my doctor to discuss an upcoming procedure.  I obviously did not want to work with the same anesthesiologist that worked with Hayley.  I could not remember his name.  The man that had the most to do with her death and I could not remember as I drove to my appointment. Then when sitting with the doctor it just came out of my mouth.  In fact I looked around wondering who had just said the name.   The absolutely most scary symptom is driving.  There is a change to a local intersection where you used to only be able to turn left on a green arrow.  Now it has the option of a yellow flashing arrow.  More than once I have sat there at that light with no cars coming at me staring at the flashing yellow waiting for it to turn green.  Obviously pissing off the cars behind me.  It is like my brain wants so much for things to be exactly how they were before July that it won’t acknowledge any changes at all.

The more entertaining examples of my mental agitation all happened on our recent San Francisco trip.  Trust me they were not the first time either.  It is just a good example because it happened all in 48 hours.  As is always the case I get a little feel me up and feel me down in security because of my pacemaker.  Like I might be able to blow up the plane with my implantable device.  As this happened I realize the zippers on the side of my favorite Athleta legging style pants felt odd.  They are thick pants, why did the zipper feel so close to my skin.  As I collected my belongings I realized my pants were inside out.  Trust me it was obvious.  So I had to make Scott and the boys wait while I went into the ladies room and hopped on one foot trying to get them off without taking my shoes off, butt braced on the cold divider, latch coming undone several times while I turned them right side out.  The next day we were sitting in our room getting ready to meet the kids downstairs for some sightseeing.  I put my shoes on and relaxed waiting for Scott.  I looked down as I stood to see that I had two completely different shoes on.  WTH?  Oh wait for it.  Then as we spent the day out and about ending at an Alcatraz night tour I noticed while on the tour that my pants were on backwards.  Not inside out this time, backwards.  Back pockets in the front.  This tells you one important fact; Scott could care less what I wear and doesn’t even notice.

I recently had a dementia test with a psychologist and passed with flying colors so that paranoia has gone, but seriously this is really challenging.  I am tired, I am depressed and I have to worry if I can get myself back home if I leave it each day.  I should pin one of those notes on my lapel like we did to our kids when they went to kindergarten.  If lost, call….

I had read early on that grief, particularly severe grief associated with the loss of a child causes changes in the brain.  So I have done some research and it is really interesting.  It can apply not only to grief but to any major life disappointment and challenge.

From an article in Prevention Magazine:

Researchers completed an intriguing study that illustrates just how profound and widespread the effect of negative personal events can be and how your brain reacts to grief. Three finance professors from major business schools tracked the performance of 75,000 Danish companies in the 2 years before and after the CEO had experienced a family death. Financial performance declined 20% after the loss of a child, 15% after the death of a spouse, and almost 10% after the demise of any other family member.

Indeed, when brain imaging studies are done on people who are grieving, increased activity is seen along a broad network of neurons. These link areas associated not only with mood but also with memory, perception, conceptualization, and even the regulation of the heart, the digestive system, and other organs. This shows the pervasive impact loss or even disappointment can have. And the more we dwell on negative thoughts, the more developed these neural pathways become. The result can be chronic preoccupation, sadness, or even depression.

Another article in Simple Smart Science:

Complicated grief, according to medical literature, is when the grief isn’t simply emotional. When we experience loss, some of us more sensitive creatures tend to experience it on every level, even the physical. Loss felt deeply for long periods of time will wreck your immune system, cause your adrenals to be overworked and your hormone regulation to disrupted. Essentially, you become very weak, tired and quite possibly sick.

But what about memory?

Interestingly, grief impacts memory deeply. In recent years, a study was published that followed those who had experienced grief from the loss of a loved one. It showed that short-term memory was affected for all the study participants. For those that grieved longer, complicated grief became an issue and memory was impacted even more.

For those suffering complicated grief, they could remember almost anything as long the memory involved the deceased loved one. Most other memories were severely impacted if the memory did not include their loved one.

Other studies have shown that in some instances, people who are grieving suffer Post Traumatic Stress Disorder (PTSD), which is known to have memory impact as well. With complicated grief there’s the problem of multiple issues affecting the brain at the same time. Depression, PTSD, and anxiety all contribute to major memory issues sometimes resulting in episodes of complete forgetfulness of the most basic of tasks.

 

My counselor says that my struggles are impacted by my main personality and mental traits.  He says there are three main filters that I process everything through.  #1 Being straightforward and expecting the world around me to be the same  #2 My large heart #3 shit I can’t remember, but there was a third, I know there was.

So what I am hoping you are learning along with me is that major life events and grief are a process of the mind and body.  Your emotions can attack your immune system and you can lose the ability to put your pants on correctly.

Your brain is doing its best to help you adjust.  I am hoping mine catches up soon.

Lately I have been craving to be at the ocean.  I asked the boys if we could go this weekend, no school Friday.  Henry acted like I asked him to eat the dog shit he reluctantly picks up.  “Mom can’t we just stay home for once,  we were just in San Francisco”.  Sigh, I could show him the photos showing him having fun on that trip but you just don’t argue with a 15 year old boy, you never have a winner.  I have clearly failed to teach him to be spontaneous or to love the water like Hayley.  Hayley and I were connected by water.  We were lucky to go on several boat trips with my Mom and Stepdad.  Cape Cod, Washington DC, sailing the Potomac.  She chose WWU and watched the sunset over the bay every night.  She went to the lake and the falls.  She promised herself she would get outside and enjoy all of the water around her during her Sophomore year.  We began taking her to Cannon Beach at 6 months old.  The weather was not great, but we strapped her into that baby bjorn and off we went.  She was not a great sleeper but at or near the ocean she could barely stay awake.  We went at least once per year every year for 18 years.  Sometimes she brought a friend; sometimes it was just the two of us.  We went as a family even when Scott and I were officially separated.  It was something that made life, no matter how chaotic or horrible feel normal.  Of course, I didn’t know what horrible could actually feel like.

I was one of those moms that always imagined the worse things happening.  I would constantly have to talk myself down.  Scott was good at that.  One of the hardest week’s of my life was when she went to Cabo with her friend and her family.  She loved that trip.  I barely slept more than a few hours here and there.  She was too far away.  We missed each other more than I figured was normal.  When she had surgery for her ovarian issues I practically hyperventilated waiting for her to come back to her room.  But it was always okay.  But my imagination has tormented me for the past 20 years.  Nothing I ever imagined was as bad as what I witnessed last July.

Spring is coming.  This is going to be a tough time for me.  I didn’t see that coming.  I forgot that I love March, April and May.  March because it is almost Spring and everything I love most happened in the Spring.  As March crawls along, I see flowers begin to push their way up.  The flowering plum trees we planted for each of the kids when they were a year old, are starting to show growth.  Those little leave buds this year share space on the branches with beautiful moss.  Hayley’s tree was moved from our last house when she was 3.  It thrived with that move like she did.  The tree needs maintenance but I am afraid to let just anyone touch that tree.  What if they mess it up?  Her car is parked under that tree.  Last fall it caught the leaves.  So as the buds start now, I know it will bloom in April.  March was the month that I was in my last trimester for both pregnancies.  As we get closer to April I always feel that pull and yearning.  I remember feeling scared and excited.  The blooming plants remind me how twice I was in full bloom at the same time.  Both kids arrived early.  Hayley made it in April, the 29th, making that month “her birthday month”.  She would say that the entire month was her birthday and that as soon as it was May 8th, Henry could start his month.  Of course Mother’s day always got lost in the joy of two birthdays a week apart.  I always went big on birthdays.  Parties, gifts, the best birthday cakes!  We did Disney as a surprise once.  It was wonderful and chaotic having their birthdays a week apart, but I would not have changed it.  

So here it is, fucking March.  My mood is changing.  The weather can’t make up it’s mind either.  I feel that sense of excitement and then it is quickly replaced by a deep sadness followed by guilt for the child that will still have his birthday.  The one that won’t have the sister he loved to tease him that her birthday came first since she was number one and that it lasted right up until his.  Maybe he is feeling the same way.  If he is I don’t think he will be able to articulate it for years to come.  Hayley helped out at all his parties.  It didn’t matter that once it was a dozen 13 year old boys, going to play paintball.  She was there and very pissed off Henry wouldn’t let her play.  I remember a feeling of sadness at the loss of my sweet boy.  I watched him joyfully shooting paint on his friends while Hayley and I watched and ate licorice.  I knew he would never again refer to himself as “momma’s sweetie”.  I remember the one kid who was way more mature than the others wanting to ride home with Hayley.  I groaned on the inside.  Poor Henry, always Hayley McCutcheon’s little brother.  

As April approaches this was the time I felt the biggest pull of motherhood.  Birthdays and mother’s day right around the corner.  The earth blooming.  Hayley loved her birthday, she loved me for making each one special.  How will I survive April?  How have I survived 7 months without her?

It feels like the tides that we loved to watch.  When you look up tides in a thesaurus, you see words like ebb, direction, course, drag, drift, wave, or flux.  These words are such good descriptive words for where my grief is right now.  It is an ebb and a flow.  I can remember Hayley and I looking for sand dollars for hours.  As the tide was changing direction we would run out to see if we could find one and run back as the water chased us, screaming and giggling.  PNW ocean is never warm.  I feel that my grief will be drifting out to with the tide only to turn course and come crashing back around my ankles just like those times on the beach.  I can feel and hear her but I can’t reach her in the tide.  Sometimes the tide drags me out and makes me fight the waves to get back to shore.  This happened yesterday.

Henry asked me to please get him girl scout cookies; he has a thin mint addiction.  I agreed.  I mailed some bracelets at mail post and headed towards Safeway.  I hear very loud giggling and screaming only to turn the corner to find a swarm of Daisy Girl Scouts.  For those that don’t know, Daisies are Girls Scouts that are in Kindergarten.  They have their own “petals” to earn to complete their Daisy on their uniform.  I waited my turn and watched the mom say over and over “quiet ladies;  One at a time girls; Say thank you; take turns”.  It was my turn, I asked for four boxes and asked them to tell me how much I owed.  The cutie in charge of the money was clearly counting when miss smarty pants to the left spouted off 20.  I patiently kept my attention on the first girl and asked HER if that was correct.  I had at least four little hands grabbing at my 20, but I gave it to her.  They literally tossed cookie boxes into my bag.  I giggled when the mom said “ladies careful these are precious cargo”.  Yes they are.  As I walked into the store I begin to remember.  My friend, Tena, and I were the troop leaders for Hayley’s Daisy group.  Of course being overachievers we always picked the most complicated activities to earn the petals.  But I remembered like I was there the first time we stood outside of Safeway and tried to corral our troop.  They had been just as excited and practically attacked every shopper.  I was that mom trying to calm down the competitive ones and give the shy ones a little push.  I started to shake in Safeway and the tears were threatening.  Hayley was the cutest Daisy Scout ever.  I suddenly could not remember everything Henry had asked me to buy at the store.  I felt ashamed when I realized that I had not been in Safeway for weeks.  Henry and Scott had been doing the shopping.  Sometimes I would send Henry in with my debit card and he did the shopping.  I quickly excited and was in a full out sob as I got to my car.  I tossed in the odd assortment of items I did get.  I sat with my head on the steering wheel.  When will this feeling of drowning stop?  I want my little Daisy Scout back.  The waves of that experience continued to hit me until Scott was home and a Xanax was on board.  I felt weak.  I feel like the course of my days are set by a tide table.  One I can’t predict.

This morning I woke up screaming her name.  I had felt as if I was drowning.  Four a.m. and I am on the couch with the dogs hoping the 2nd Xanax kicks in quickly.  Henry woke up not feeling well either and I made him go to his first class that is a struggle and then brought him home.  I never got out of my pajamas to do that.  We both slept for several hours.  Even the puppy slept next to me.  He knew the tide was high.  I took him to the dog wash just so I could accomplish something and because he was so stinky.  I failed today.  I didn’t get anything I wanted accomplished done.  I have no clue what Henry ate and the dog decided to lay outside in the muddy grass.    I often dream of Hayley as a mermaid.  Scott likes this image too. 

When will the ebb and flow of pain soften and smooth the surface?  When will the sand stop moving under my feet?  When will the elusive perfect sand dollar be in reach. The tide was just too high for me today.

Dear Pre-July 2017 Dawn,

This is the new you.  Don’t get excited it is not a new you, like you lost that 50 pounds and you get a makeover on the Today show.  In fact you have gained another 35, way to be an overachiever!  In the next summer your life will change forever.  Remember those nightmares you have regularly about something happening to Hayley or Henry?  I am sorry, one comes true.  You are going to lose her.  You are going to make decisions that will haunt you.  If you can talk her out of the breast reduction please do.  But if not, this is what I want you to know and what I want you to do.

Advice #1:  When one of the kids asked you to do something, do it.  Don’t care about work deadlines, trust me after April 2017 it won’t matter and man you are going to be pissed, let’s keep that a surprise.  But bottom line the 60 plus hour work weeks will end up not mattering anymore.  Yes, you raised millions for heart research and taught hundreds of kids CPR, but none of that will matter at all.  So when Hayley asks you to go to dinner, go to the store, anything, stop what you are doing and go.  You are one lucky bitch.  You have a teenager that would actually choose to spend time with you.  I know you say yes a lot but it is time to say yes every single time.  All that matters is that very day.  BE present.  You are always in a million places being pulled in so many directions.  Focus on the kids.  Focus on Hayley.  I know you think she is your best friend, but you will soon find out that she was so much more to you and to a lot of other people.  You will miss her as your best friend, but you will miss her more because when she is gone, the you that you know now will also be gone.  You were feel like your heart has been ripped from your chest.  You will still do what you can to fake it for Henry, but you won’t really be present.  So Be Present while you can.  Trips to the store create memories for your kids.  I know you can make anything fun.  I miss that about the old me.  Remember the time you hid condoms in Hayley’s basket and asked her to check out so you could run to Bartells to get a prescription.

Advice #2 – Laugh more.  Hayley is one funny bitch!  Laugh at her and with her.  She has the most wonderful sense of humor, you have taught her well.  Stop and Listen.  Enjoy the sound of her voice and the sound of her laugh.  It will become hard to remember it.  You will call her voicemail to be reminded.  This brings me to a very important change!

Advice #3 –  Keep taking all of your photos, but start recording video.  You have so many tapes from ages 0 to maybe 7 but then it slows down.  There are virtually none I can find of her as a teenager.  The ones you do have are only 10 seconds long.  You found them on her phone or from friends.  Why 10 seconds?  Fucking Snapchat!  That is the maximum length that you can send to a friend.  Their attention spans are short enough; thanks Snapchat for making them shorter.  Take videos every week, set an alarm to remember.  Just ask her how her day was and see where it goes.  Pay her to do it if you have too.  Then back your phone up and back that up to an external drive.

Advice #4 – Encourage Scott to talk to her during the day.  A 4 minute phone call at work won’t slow you down.  Je will be glad you helped him have all those little connections.

Advice #5 – Always answer when she calls.  If you are with someone just say I am sorry I need to answer this because it is a VIP, my daughter.

Advice #6 –  You know those dance parties you two spontaneously have in the living room.  Do that more often.  She doesn’t care how bad you dance.

Advice #7 –  The singing in the car.  Keep doing that.  Sing together, annoy Henry, make him join in.  None of you can sing so do it more.  Those songs will be very meaningful.

Advice #8 – Invade her room!  When she is having her alone time, interrupt for a hug and to ask what she is watching.  Then leave quickly before she loses it.

Advice #9 – Be patient.  I know you are tired, I know your health issues cause you pain, but you are running out of time. Be patient when she needs you or just wants to chat.  Make her feel she is the most important person in the world.

Advice #10 – Cuddle more.  I know she has Scott’s genes and is not the most cuddling kid.  Force it.  Sit on her until she gives you a hug, she will appreciate it eventually.  Take naps together.  Hug both kids as often as they will let you.

Advice #11 – Never miss a night of your goodnight ritual.  It is so rare and special that your 19 year old never misses it.

Advice #12 – Be a good listener.  Do less coaching and more listening.  But remember that you are her coach.  Your job is to coach her through life but not actually swing the bat for her.

Advice #13 – All the vacations you and the kids take on your own, don’t ever feel guilty and instead convince Scott to join you, make him go, find a good dog sitter.

Advice #14 – When she asks to go to Cannon Beach, go.  You never missed a year from birth to 17, why the last two?  It is her special place, go, find the money, make it happen.

Advice #15 – When you are at Disneyland on her Graduation trip buy her the Minnie Mouse backpack she has admired on more than one trip.  How many kids want their grad trip to be to Disneyland with her parents?  You are the winner!

Advice #16 – Don’t ever doubt her love for you.  You always focus on the times you think you were not the perfect mother.  Fuck perfect.  Perfect is boring.  You are doing your best and she adores you as much as you adore her.  Tell her every chance you get.  How many college kids drive halfway home to meet you for dinner on your birthday and give you more than a dozen cards to “open when” you need to.

Advice #17 – When she wants a golden retriever or a frenchie, get the dog.  Although I recommend the Golden.  In fact, when you visit her in college bring Zoey too.

Advice #18 – Tell her every day how beautiful she is.  Tell her how proud you are.  It doesn’t have to be a Hallmark Greeting but get creative.  It doesn’t have to be a big production.  Just make sure she knows.  She blossomed in college, you did well.

I could continue but I doubt you read past “you are going to lose her”.  You lose yourself too.  You will be a shell.  People will tell you how strong you are, but they don’t know that most of your day is spent curled in a ball trying to rock the pain away.  Everything will remind you of your loss.  You will become the greatest actor ever.  People will think you are still funny when actually you are not trying to be.  Well, that in itself is a little funny.  You will run out of ways to say thank you to literally hundreds of people.  You thought you had a small circle of people you could count on in life, man you will be so very wrong.  I mean hundreds will take the time to send you messages, make you food, leave you treats, spend time with you, offer to do anything they can to lighten your burden.  You will see her sitting next to you in the car and you will remember reaching over to pet her hair.  You will remember how it smelled.  You will be sad, broken and pissed off all at the same time.  You will wish you were dead.  But you will keep breathing for Henry and for Scott.  (and your 4 dogs, yes a 4th)  I know it will seem impossible but try to breathe for yourself too.

Love to You,

March 2018 Dawn

 

 

 

 

 

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I have been familiar with pain for a very long time.  In my 20s it was IBS and Chronic Sinus Infections.  Sinus Surgery helped but was it’s own pain experience.  I gave birth to Hayley.  In my 30s, it was a 2nd sinus surgery, wrist surgery, gall bladder, uterine ablation, and I gave birth to Henry.  Add a dislocated tail bone thanks to Henry.  I was diagnosed with Fibromyalgia at 38 and shortly after suffered Cardiac Arrest winning a pacemaker, that involved pain for sure. New Year’s in Vegas I broke my ankle.  All of this before I was 40 and I am sure I am missing something.  I looked up words to describe pain.  This is what I found:

• aching
• tender
• sharp
• shooting
• hot
• burning
• nagging
• intense
• stabbing
• tingling
• dull
• throbbing

These words all describe the pain of Fibromyalgia.  What they don’t include is the emotional pain.  Guilt, Sadness, exhaustion, frustration, anger or disgust.

All of these descriptive words also describe my grief.  The raw pain of losing half my heart in one horrible night.  It aches all of the time.  A deep ache in your chest, it feels as if it vibrates throughout your insides.  Your skin is tender.  You are raw.  You don’t want anyone to bump into you.  I sometimes cannot find clothes that are comfortable touching my skin.  The sharp pain takes you by surprise, it takes your breath away.  It happens when you walk into the dentist office and see a young girl with her back to you.  She has long brown highlighted hair.  She is wearing a black puffy north face vest, with leggings and black Nikes.  This was Hayley’s uniform.  The sharp pain knocks you down and you have to hide.  Shooting pain is when you are doing laundry and you come across a pair of panties that were hers.  You sit and grip it and put it to your face.  I dropped to my knees feeling the shooting pain.  Not knowing if it is from the grief or worry about your psyche that you are alone and smelling her clean underwear.  Hot and Burning are the feelings of anger at the injustice of it all.  Or when you receive a doctor bill 7 months past that lists the details of what services they provided.  It included “placement of breathing tube”.  I felt hot as I called and begged them to stop sending this mail addressed to Hayley.  Nagging is easy to articulate.  It is the nagging thoughts that won’t stop.  What if I had taken her to a different hospital.  Why didn’t I yell and scream until the doctors heard my concerns.  It is a line of thinking that is truly nagging and so hard to stop once that train has left the station.  Intense describes the pain I feel every single day.  It is that moment when I wake up.  For a few seconds I am only focused on which dog woke me up and then I remember.  This pain is intense.  Or when I walk into her room and see her shoes lined up, her make up cart, her laundry basket still holding the clothes she wore the week before her death.  Such intense pain.  Stabbing is all of the above.  Tingling is the sense that you are forgetting something.  A memory that you try to pluck and you can’t.  Grief robs you of your mental strength.  Studies actual show lost brain function in people experiencing intense grief.  So if you are feeling all of the above and you can’t remember what you have to do tomorrow or what you did yesterday; it’s okay, you can blame it on brain damage.  Finally, dull and throbbing, this is your eyes, sinuses, throat after crying every hour all day.

It is the middle of the night and my pain is high.  My joints ache and my chest is tight.  I am fighting tears begging the xanax to kick in.  My muscles throb.  How do I survive this pain?  How do I walk through this hell?  All I want to do is rest. I want one day, even just one hour where my body doesn’t hurt and my mind rests.  I cannot even imagine how that would feel.

So when you ask me how I am and I shrug and say “ok”, or it’s a hard day, maybe knowing these words that describe pain will help you understand your own pain, my pain and the pain of your loved ones.  Everyone carries some pain.  Don’t forget that.  Don’t forget the promises you made to me and others.  Like when you said “I won’t stop asking”, “I will be here”.  If you said it and you have not been able to follow through, it’s okay, you all have your lives to live.  Because mine has stopped, yours shouldn’t.  BUT what I ask is that the next time you are faced with someone in pain for whatever reason, do NOT make promises of any kind.  You don’t need to add to their pain when life prevents you from following through.  Just address the present, don’t promise for the future.  I would prefer you didn’t.  But you can be…

Be understanding.  Be kind.  Be patient.  Be empathetic.        Be helpful.   Be strong.  Be real.  Be authentic.  #belikehayley

 

I have some catching up to do.  We shall see if we get one long post or multiple ones.  Back in the fall I met with a local tv anchor.  She and I have been friends since her days on the AHA board.  I have done Go Red for Women stories with her.  One year I even let her film me in a Gym.  That was when I was weighed on tv and the story’s angle was a women recovering from a heart event and getting in shape.  The only problem was that my story was followed by one about a contest to guess the weight of the hippo at the Woodland Park Zoo which both kids thought was hysterical.  Despite the hippo story this woman is the only one I would trust with Hayley’s story.  We met and I told her what had happened and all of the positive events that happened since my loss.  I explained what I wanted to accomplish with the #belikehayley movement.  First I want people particularly teenagers to understand what the “be” meant to her and I.  Make a decision to “Be” something each day, week, month or year.  When we ask our children what they want to be when they grow up it is assumed that they will tell us what career they will have.  Hayley wanted to be an FBI agent or a Police Officer.  This was her answer since around 6th grade.  Prior to that it was a pilot, but the she realized math was not for her.  But as she entered high school and again in college we talked about the “be” all the time.  I want the first thing my kids to think of when I ask them what do you want to be when you grow up, NOT to be a career.  I want them to say things like “be happy; be loved; be kind; be outgoing; be brave”.  Pick a career that makes you happy, kind and brave.  You will have made the right choice.

The second goal of the campaign is to promote organ donor awareness.  We are one of the top states with an 80% yes rate with the dmv.  I recently did some training with our state organization.  I expressed my desire to encourage people to say yes to organ donation.  Her reaction was “we are already the best in the nation at that”.  My reaction, but we are not 100% so why stop trying.  Hayley’s organ donations, the lives she saved and the families that did not have to go through what we did, that is what has kept me standing.

My friend and her kind cameraman stayed for 4 and a half hours filming.  We filmed at my house, we walked at Beaver Lake and hid some painted rocks.  I don’t know what will make the final cut or how long the piece will be.  But that day I honored my daughter.  I had the best listener, a woman that both Hayley and I respected.  Hayley thought she was always the prettiest and smartest person in the room.  She would be thrilled that her story was being told by Marni.

I felt drained that day.  I poured all I had into it.  In spite of my planning there was still things I wish I had said.  That evening one of my new friends from the past 6 months called to say that on Wednesday, Valentine’s day we had plans.  Um, no, we have to pack and leave Thursday morning for our trip to San Francisco.  Being my friend from New Jersey, no was not an answer.  Be ready by 6, you will be home about 9 and dress warm.  OMFG, what is she up to.  First, not a huge fan of surprises.  Second, Scott and Henry even said WTF.  But we all knew we would be ready at 6 in spite of our reservations.  Scott doesn’t celebrate Valentine’s Day so I figured maybe I would get some love out of this.  Boy did I.

That day I was busy.  I did some work.  I bought Justin Timberlake tickets, cause hello “Suit and Tie”.  I had an eye doctor appointment.  Then the dog kept throwing up so I had to take the puppy to the vet at 4:45.  As I was getting ready to  leave it came to my attention that I had spent the day with my pants inside out.  Pretty typical shit for me.  Got the dog back home with ear drops, meds and a $253 vet bill.  All in time to have 15 minutes to dress, grab a hat and gloves and be ready for our adventure.

We crammed in to their Honda Pilot, my family and theirs.  7 of us total.  I really had no clue.  We started with dinner at Burgermaster.  BTW, Valentines Day was one of the busiest nights I have seen there, we all mad cheap date jokes, that and weed jokes since the car next to us was Hot boxing.  After we headed into Seattle to Seattle Center.  OOOh, maybe we are going up the space needle.  Did I mention that it was colder than a witch’s tit?  That would be if a witch’s tit was 36 degrees.  At this point we were at a half wall near the fountain and on the side of the space needle were scrolling valentine’s messages.  I knew that they benefit the local AHA as I had worked there when the idea started.  Stacy gave us a card and explained that my friend, Shay had instigated this amazing idea and over a dozen women participated.  In addition to the messages we were waiting to see, there were gift cards to do family activities.  We were overwhelmed.  She said the messages would be on between 8 and 8:15.  Hear negative buzzer, nope didn’t happen.  During that time over and over we read that Jason loved Daina and that Bill and Karen Witter had something special going on with the space needle back in 1983.  Now the Cinderella family, Stacy, Dave, Brittany and Cousin, Tony; could win the funniest family from the East coast.  We made up creative stories about Bill and Karen.  Mostly to keep ourselves warm.  We figured the messages were behind.  Another 15 minutes and the “L’train” got away with the no obscenities by using a very nasty urban dictionary term that clearly AHA or Space Needle guy didn’t google.  But we did!  That gave us another 15 minutes of laughter.  Henry was starting to do the 15 year old freezing boy thing.  I said, this is too important to too many people our asses will be out here until we see this or we get hypothermia which ever comes first.  Poor Stacy.  My New Jersey friend was ready to hurt someone.  Not to mention the ladies that all pitched in had a group message going asking her why it had not happened, keep in mind they are watching a live feed of it from the comfort of their warm homes with glasses of wine.  Lots of swearing on our end.  As 9:00 approached we were starting to become weary and that is when it happened.  I thought it would be anticlimactic after freezing our asses off for an hour.  It was not.  It was the most amazing thing I have ever seen.  It scrolled the following message on the side of the most recognizable landmark in Seattle.  “Be Kind #belikehayley.” “Be Real #belikehayley” “Be funny #belikehayley” “Remembering Hayley McCutcheon”.  I weeped.  I cried because I knew so many amazing woman that were honoring my daughter to try to help me realize she was not forgotten.  I cried because my daughter’s name was in lights.  I cried because it would never be a message from a boyfriend like Jason showing his love for her.  Scott and I held each other and cried.  The tears practically froze on our cheeks.  After watching it scroll three times I hope the Cinderella family knew how thankful we were that they stood outside with us.  But then we said “let’s get the fuck out of the cold”.  Just amazing.

I still had laundry to do and packing but it was totally worth the lack of sleep.  The next day the three of us and one of Henry’s friends headed to San Francisco for the holiday break.  Thank you to all of the women that made what had been a tough day into something special.  I was missing my valentine so badly, this put it in lights.  Thank you.