Author: Hayley’s Mom

I didn’t know it was possible to hurt any more than I have been.  Again another thing I was wrong on.  My pain, my grief, my longing has deepened over time.  It is bone deep.  My mind says her name or talks to her begging her to come back to me.  It is on a constant loop.  I know when I am talking to someone that they only have half my attention because the other half is screaming for Hayley.  Grief is destroying me from the inside out.  It is all I think about.  It is my companion.  I walk with it.  It is always beside me like a dark shower.

I have not been out of the house since the surgery except for infusions.  This week I was driving again and taking myself to the doctor appointments.  On Friday I went to Bartells for a prescription and the bank in Safeway.  It was surreal.  I feel like I am walking in a bubble of grief.  Can people see that there is something wrong with me?  It was an effort to put one foot in front of the other.  When waiting in line I had to lean against a display which almost ended in a disaster of bottles going everywhere.  So much for the bubble.  I felt like a robot walking through Safeway to the bank.   Like I was watching myself go through the motions.  It is a surreal feeling that I am trying hard to find the words to make you understand.

It is the response to my raw posts on Facebook that keep me going.  I know there are people thinking of me and grieving with me.  The week was particularly hard because now I know another mom in this club.  I met her on a plane ride back home from Phoenix in December.  We became friends on Facebook.  She was traveling with her daughter around Hayley’s age.  They were coming to spend  Christmas time with her oldest son, Jordan.  He was a recovering addict and doing well here in Renton.  We talked the entire flight.  She let me talk about Hayley seeing such a similarity with her relationship with her daughter.  I learned about Jordan’s battle and her constant worry.  In the past week Jordan had a relapse and is gone.  Like Hayley just gone.  I reached out to his mom and we have talked.  I am watching her go through those emotions and the pain of the first days.  Dealing with services and practicalities.  Her feeling are so familiar and raw that I find myself reliving the same time.

I am constantly thinking and dreaming about that week.  What could have been done.  I have relived the moment I rounded that corner and saw her dying in front of me.  I wake screaming her name just as I did on that horrible night.  It is a nightmare at sleep and at wake.  I can’t stop these loops in my brain.

Is this mental illness?  Will I know?  I cannot bear to live without her but I can’t leave my wonderful son.  It is a constant tug of war.

Maybe I am bored.  Since the surgery and not eating for 2 weeks my energy has been zapped and I do little but sit on the couch with CNN on the tv, not really listening.  I cry over the mess of my house but have zero energy to do anything about it.  I have lost 30 pounds from my high point.  I can’t even get excited about it.  Clothes are more comfortable and that helps a little with my physical well being.  But now I start the work of introducing soft food to my stomach and constant nausea.  I have had a hundred moments of what the hell was I thinking.  Already my blood pressure has improved and I am off of one of my medications.  If I have made that much progress in 2 weeks what else can I accomplish.

I was counting on this new challenge as a way to distract me from my grief.  But all it has done was make everything harder.  My grief is still beside me; now he is also hangry.  Unfinished house projects bother me, sometimes Scott’s voice bothers me.  I don’t recall a phase in the grief book of “everything annoys the shit out of you”.  I am going to have to write my own book and tell it like it really is.

I am happy for everyone celebrating graduations, weddings, and accomplishments.  Friends of Hayleys.  But she is stuck back as a Sophomore in College.  It’s not fair, or right.  This beautiful, funny and kind child is just gone, ceased to exist.  I still cannot wrap my mind around it.  I lay on my bed and stare down the hall to her bedroom door wishing she was in there watching her tv shows and at any moment will burst out and come down the hall and say “feed me mommy”.

Maybe I need a new hobby.  I have painted so many rocks it will take me weeks to hide them.  Don’t forget the fact I don’t want to walk anywhere.  I am crocheting a crappy blanket.  I am looking to start school June 25 to retrain to become a college counselor.  But I am nervous.  Do I have the attention span to try to learn new material?  Is there room in my brain with all of the grief.

I know the same people are here for me, I know who you are, I just have to ask.  But I know I won’t ask, they have their lives to live.  I remember a huge number of people say “I won’t stop asking you to go to coffee or go for a walk I promise”.  Guess what?, they have stopped.  I wonder did I say “no” one too many time and they gave up on me.  At the same time I think good, I can live a lonely existence with my shadow, grief.  Together we will walk through what life is left for me.

I am hungry.  Not traditional stomach grumbling hungry, but mentally I feel like I need a donut.  Yes, that means I had my weight loss surgery a week ago.  I did not make the decision lightly.  I made a choice to do something to improve my many health issues so I can be a strong Mom for Henry.  But I would work for donuts.  I am so obsessed with the fact I can only have liquids right now.  It is making me anxious!  The surgery was tough.  I landed an extra night in the hospital due to issues with pain and low blood pressure.  I came home Saturday.  I am very uncomfortable.  I also got dehydrated.  I didn’t keep up with my liquids and ended up in worse condition than I started.  Fail.  But the doctor ordered this amazing thing for me.  It is called a banana bag. (not to be confused with a banana hammock)  I go to a infusion center where for 2 hours I get fluids and vitamins and for a short time after feel so much better.  What I am learning so far is that this process is 90% mental and 10% physical.  I understand why they were concerned about my mental and emotional strength.  It took 2 extra months of visiting with psychologists to get my final approval.  I now get it.

Being physically weak this past week has made it really difficult to control my grief.  It creeps in between the cracks.  I miss her so desperately that I am paralyzed by the anxiety.  So many memories of graduation this month, her last major life milestone.  She would be finish her Sophomore year of college and should be coming home this week.  My brain can literally not wrap itself around the fact that she is not coming home.  Maybe it is not strength that has kept me standing but denial.  My anxiety is ratcheting up as we approach July.  July 4th our last family outing.  July 11th, her surgery.  July 18th, I watched her die.  July 20th, the date on her death certificate.  July 23rd, the day they took her from us and she saved the lives of several people.  Which date is the “anniversary”?  I can’t pick just one so it is going to be two weeks of hell.  Maybe the timing of this surgery was not the smartest but was my only option with insurance.

Henry was talking to me the other day and I just paused and checked out.  How was it possible that she wasn’t here to hear his story.  How is he now an only child?  How is it possible that someone so important to my breathing was just gone.  Gone.  We were a family of four.  How can I say we are not.  It was two and two.  Even.  We are now off balance.  How do I make a table work with only three legs.  It is possible, you can make the table stay up.  You have to shift the legs to different positions.  It will stand but it won’t be as strong.  I feel like a wobbly table.  Like the annoying one at the restaurant that no matter how many folded napkins you put under the leg it still moves.

Which makes me think of food.  My thoughts are just like this.  They bounce around from being hungry, to thinking of food, to pain, to sadness, to Hayley, to oh no it’s time for Scott to give me my blood thinner shot.  Yes, Scott has to inject me in the stomach every evening.  What is scary is I think he likes doing it.

I am not sure that this is very informative, entertaining, or even organized.  But I needed to write again and see if it helps.  I also need to thank my friends Sara and Terri.  Terri spent the last 4 days of her life babysitting, driving me to doctor’s appointments and cooking for my family.  Sara took over the job today, watching Sixteen Candles with me and taking me to my infusion.  So here I am with my incisions and smaller stomach.  Will this help with my grief.  No.  But I feel that I am doing something for the future.  As of today I am down 25 pounds from my highest weight.  My goal is 105 pounds.  So nearly 25% there, that feels good.  I can only hope I sleep tonight and wake up feeling a little better.  I hope that my dreams are not about donuts (again) tonight.  Good Night.

 

I used to post that on Facebook whenever I was facing down a night of insomnia.  “Sleepless in Sammamish”.  Hayley would make fun of me, “Really mom, were you sleepless IN Sammamish”.  Clearly she did not get the Sleepless in Seattle reference.  That makes me realize and remember two things.  Number one we loved each other through sarcasm every chance we got.  Second, I never got to share the best of the 80’s and early 90’s movies with her.  I had thought about it, having a movie night and making her watch an 80’s movie marathon.  Sixteen Candles would have led the night off followed by Pretty Woman.  I would throw in Pretty in Pink and the Breakfast Club.  My plan was to torture her with these movies during her recovery the same way her and her friends tortured me with the IN THEATER Twilight marathon!

But why did I wait?  I had thought about watching those movies with her for years.  Most nights or weekends I was too busy working to be the best at my job.  Why didn’t I turn off the laptop and snuggle on the couch with her and get lost in the Molly Ringwald characters.  Who could beat Ducky and the Donger!?!  She would have loved the one on one time, maybe not the movies but she would have loved the time together.  She was not your typical teen.  She actually wanted to spend time with me.  What did I do?  I tried not to be selfish and tried to push her out into the world to experience fun with her friends not with her mom.  What a fool I was.  How lucky was I.  To have this beautiful child that wanted to spend time with me.  If you have not already, you must watch one of these movies with your teen.  Let them make fun of you, but watch the movies.  Pay them if you have to.

She used to want to follow me around Home Goods.  I love wandering Home Goods.  I didn’t always buy anything it was the alone time and looking for a special treasure.  Sometimes I would sneak out of the house so I could go alone.  When I let her go with me she would be right on my heels, my little negative mojo.  “That’s dumb.  You don’t need that.  No I won’t put that in my room.  Mom there is no more room in my dorm.”  I would get annoyed with her, snap at her, tell her to sit in that chair and I will come get you when I was done.  One time I snuck out to HG and she drove her own car and showed up any way!  LOL.  I was at Home Goods last week.  I would have given any body part to have that stinker on my heels ruining my me time.  If you are so lucky to have a shadow, embrace it.  I didn’t always do that.

Learn the technology.  Instant message your teens.  Try to have an entire conversation in Memes, Gifs, Stickers and Emojis.  The weekend before her surgery Hayley and I did just that.  One of these days I will share it.  If you don’t know how to do that google it!

We liked to go to parks.  If they had water even better.  We didn’t care.  We spent so much time in the parks in Bellingham, yet she had barely explored what that beautiful area has to offer.  We had a plan to buy a small RV and start touring all of the National Parks until we had seen them all.  Just the two of us.  We thought we could do it by the time she was 30.  Not sure if that was ever realistic but again how lucky was I.  Your kids don’t have to be little to benefit from parks.  Buy a discover pass, keep it in your car.  Make it a point to know the parks around us.  Stop and take 15 minutes out of your day with your child.  No cell phones.  Just you.  You would be amazed and possibly dismayed at what they might share with you.  I need to resurrect this with Henry.  I will pay him if I have to.  But get that time outside exploring our tax dollars at work.  Buy the Discover Pass.  Visit one state park a month.  Doesn’t have to be a big planned out affair just know where the parks are and if you happen to be nearby, stop the car.  At that point your teen is your hostage.  Use it to your advantage.  I love thinking about my park time with Hayley.

Do crafts.  Hayley loved to do crafts.  We called it art.  Man we sucked at it.  They are never too old for crafts.  You don’t have to be good at it.  Just do something.  One time I taught her to crochet.  She never made anything except a long curly chain, but she was proud of that chain.  Use magazines to make a collage.  Let them have a can of spray paint and a flower pot and go at it.  They will bitch and moan that they have better things to do.  Again offer bribes.  Once they get going they will have fun.  Plus you will have some artwork for the garage!

Do a Puzzle.  Every summer we chose a puzzle and put it out on our dining table.  I was usually the only one that worked on it but occasionally I would be able to entice a kid to come over and help me.  My trick was to sort the pieces and put a pile of easy ones in front of their chair.  They would sit down start matching them up and wonder why you were such an idiot to miss those pieces.  More than half the summers we did not finish the puzzle but that was not the point.  Another place to “be”.

Like the eighties classics there are so many other things I didn’t get a chance to do with Hayley because I thought there was plenty of time.  I didn’t take her to a glassy baby 2nd sale to show her how grown women lose their minds.  We didn’t take her brother and dad back to show them Washington DC.  She and I had the best trip there but talked about sharing it with the boys.  Some of my favorite family memories include Mariner’s games and Putt Putt golf.  Camping in a small “cabin” with a family of mice.  This was our way to find out the McCutcheons were not campers.  Go to at least one Seahawk game, splurge.  Go to Seattle and be a tourist for the day.  These are all things that Hayley made us do.  She was our cruise director.  If you don’t have a director in your family assign each person a month.  Tell them it is their job to find something for the family to do.  Give them a budget or tell them it has to be free.  Always take a family selfie and print them and put them on the fridge.  Don’t let their whining and complaining stop you, remember you actually are in charge until you are no longer paying their way.  Use this to your advantage to create family memories.

Your child is not going to die like mine did.  But they will grow up, move out, make more friends, find a partner and you will get less time.  Do everything you can while they are your captive little audience.  Post your photos on Facebook so others can steal your ideas!  They don’t always need big expensive entertaining vacations.  We couldn’t, but we made the most of the ones we did take.  Don’t let finances or work or excuses get in your way.  Find a way.  These will be the memories you have created for your teens.  Heck they may at some point think you were actually cool.

Don’t wake up like me one night and regret what you didn’t do.  Think about what you did do.  Create a memory this week.  Do it for Hayley.

 

This past 8 weeks has felt like an emotional tornado.  I have had constant twists and turns with several touch downs.  It started with two of Hayley’s organ recipients reaching out the first week of the month; her heart and a kidney.  Both were exciting and happy contacts but so emotional.  Then it was on to Spring Break and Easter.  A time she should have been home sleeping in her own bed.  We then moved to the eye of the storm, her birthday on the 29th of April, her 20th.  We spent time in Seabrook on the Washington Coast with friends and family to celebrate her day.  On her birthday I came down with a sudden onset of bronchitis that I am still recovering from.  The next weekend on the 6th was the exciting event of meeting Hayley’s heart recipient in person.  Elena and I made a brave decision to let my friend, Marni, from Fox News film the moment.  This had so many layers of emotions.  Then my baby boy turned 16 on the 8th and drove away from the nest that morning on his own.  Then we had mother’s day.  This day included highs and lows.  The 15th Hayley’s and my story were shared with the world when the piece was aired on the local news.  Marni did such a beautiful job with the story that there was ugly crying all over the Pacific Northwest and in multiple states.  This brought on a flood of positive yet emotional messages and responses.  This was the point that we reached a category 5.  The tornado is still touching down and is predicted to last several more weeks.

One of the best descriptions I saw from an observant friend was that I was in an emotional blender.  It has been on puree for so many weeks it feels like the new normal.  Add on top of the storm we have been doing a full bathroom remodel for 7 weeks.  We gutted it 7 weeks ago expecting to find major water damage from leaks we had neglected to deal with, since we kind of had other things kicking our butts.  Only to find minimal damage.  I was the designer and the general contractor.  I can’t really complain because we were lucky that our builders are friends.  I even had an expert friend who knows tile help me pick out the perfect choices, something that was really stressing me out and I talked about in another post.  The bathroom is 95% done and all I can say is Thank God I don’t have to share Henry’s tiny nasty teenage boy bathroom with him and Scott any more.  I have a beautiful shower with three different water fixtures.  I am in mermaid heaven.  It is my coastal retreat and I underestimated how much it would calm me to have it finished.  I hope that the rest of the final touches will be done in the next week.  I am so thankful to the friends that worked on it and I know made it financially possible for us to get it done.  Thank you, you know who you are.  If you need a bathroom, I know the guy for that.

On top of the remodel and emotional tornado touch downs, I injured my arm the Friday of mother’s day weekend.  I was working on a project and picked up materials that included heavy glass pieces.  Did I wait to make multiple trips?  Would wonder woman make multiple trips?  Hell no.  I lined those bags on my left arm, grabbed a box in the right and up the driveway I went immediately regretting my decision but committed.  The next morning I woke up to find out what a torn or pulled muscle near your elbow feels like.  I can’t even scratch my nose with that arm.  Add to it all the fact that Henry and Scott got me an awesome gift, an inflatable stand up paddle board and I can’t paddle right now, it is really pissing me off.  It seems like when I make progress, like wanting to get out and exercise and paddle, something knocks me back.  Yes I am 100% whining in this post and totally feeling sorry for myself.  It even hurts to type.

So my cat 5 tornado is starting to wind down just in time to for the next storm.  We will call the first storm Abercrombie because those models are all skinny bitches.  The next storm coming I think I will call Bertha.  Bertha is a heavy and life altering storm.

Disclaimer:  I am sharing this news because I promised myself to be truthful, raw and authentic on this blog.  If you have positive comments, terrific.  If you have negative ones, I don’t want to hear it.  My decision is made and was made with a lot of thought and a lot of research.  I don’t need any additional negativity.  Keep that shit to yourself.

I have never thought of myself as a fat girl.  When I graduated high school I weighed about 118 at 5’8, I needed to eat a burger.  College I filled out in all ways but was still at the right weight for my height.  As pregnancies happened I was a little more than I should be, but still felt comfortable in my clothes.  In 2009, to prep for my 20 year High School Reunion I began running 5ks and working on my overall health.  That all ended in cardiac arrest and heart surgery for a pacemaker in October.  From that year on, the weight began to creep up.  Many of you women can guess what happened in 2001, I turned 40 and my metabolism came to a screeching halt.  In fact I think it left skid marks in the culdesac in front of my house.  I broke my ankle, had surgery in 2012 that was a big fail and the weight went up a little more.  I also started a demanding job that had me driving sometimes up to 200 miles a day with goals that had me working every evening and most weekends.  Drive thru windows were my bitches.  10 pounds a year and the job ended the summer of 2017.  Then like a freight train that is baring down on you, I lost Hayley.  I went on many medications, one fun one, caused a 32 pound weight gain in 6 weeks.  That was painful.

This very detailed history is important to understand how I ended up at 255 pounds in January of this year.  I met with a bariatric doctor.  It became quickly clear that I was a good candidate for bariatric intervention in the form of surgery.  In addition to the weight I have 3 of the 4 health issues that are primarily weight driven.  High Blood Pressure, High Cholesterol, and Sleep Apnea.  Add in my heart issues and my family history of heart failure and obesity, winner!  My insurance would pay for the procedure 100%.  I brought my most level headed friend with me to the first meeting.  I knew she would tell me straight up what was a good idea and what wasn’t.  Both of us agreed that this was a reasonable treatment plan for my situation.  I am doing this for my health not my appearance.  If you see me at all you know I don’t care about that at all, I only care about missing Hayley.  But this decision is about being here for Henry.  Being healthy for Henry and myself.

I have been working my way through the very difficult process to get to a surgery date.  I have met and been examined by 7 different physicians.  I have had to seek approval from 4 different mental health professionals.  I have spent hours with dietitians (who by the way are all super skinny and really annoyingly cheerful).  My grief has been an obstacle.  Both Scott and Henry are 100% supportive and have promised to support me and join me with our new lifestyle changes.  I know that this will be the 2nd hardest thing I will face in my life.  But I am confident and excited about it.  I plan to blog about my journey.  I won’t hold back and I won’t sugar coat it.

Today was my pre-op training classes.  I met with the physicians assistant that will handle my care pre and post surgery.  He was awesome.  He knew my concerns before I even had a chance to voice them.  Then myself and 5 other patients spent two hours with a psychologist and a dietician going over every single requirement.  It was overwhelming but really helpful to not be alone.  The first 5 weeks will be the toughest.  I have tons of support from family and friends that will be there for me in this journey.  Tornado Bertha will be touching down on May 31st.  June will be painful and stressful but I know that if I am strong enough to put my grief on display to thousands of strangers to further a cause, I can make it through a liquid only diet with out hurting anyone.

On Mother’s day I was lucky to go to the Pink concert with some wonderful women.  There were several Hayley triggers, the dancing was beautiful and she would have loved it.  But the new trigger was something that I will remember when the transition after surgery gets tough.  This gal came down our aisle and needed us to stand so she could get out.  I went to stand only to find myself coming to a halt midway up.  With a feeling of horror in my chest I realized that my ass and hips were stuck between the cupholders on the arms of my seat.  I could not stand.  I sat back down only to win me a wtf look from miss small bladder.  I had to turn sideways in my seat to haul my ass up.  Never had I had such an obvious fat girl moment.  Today in class we had to go around and introduce ourselves and share one thing that we are looking forward to after surgery.  One gal said only using my own seat on an airplane.  Another said jumping from an airplane.  (no thanks)  I said that I am looking forward to having no sleep apnea and not being tired all day.  But what I really wanted to say was “I am looking forward to not getting my fucking ass stuck in the seats at the Justin Timberlake concert next November”.

A huge from the bottom of my grieving heart, thank you to Marni Hughes and her staff at Q13.  I have known Marni for several years from my work at AHA.  There was no one better than her to share Hayley’s story.  We met in December and she has filmed multiple occasions.  Including Life Center NW president.  I was in awe of how she edited the piece and how it all flowed together.  She had hundreds of photos to sift through and hours of video.  How she pulled the most powerful parts and seamlessly put them together was amazing.  Thank you Marni.

http://q13fox.com/2018/05/15/heart-of-a-dancer-a-mothers-message-about-organ-donation/

For the last week I have tried to figure out what to write about May 6th.  I posted photos and videos from my meeting with Hayley’s heart recipient.  The response is overwhelming.  Over 100 comments and messages.  Nearly 400 “likes”.  I knew the day was special but had no idea it would touch so many people and touch them so deeply.

We made a commitment the week Hayley died to honor her wish to be an organ donor.  But for me it was not enough to donate just any organs.  I was absolutely obsessed that week with her heart.  I knew if I could hear it beat for another then she wasn’t really gone.  Each day for 5 days we had to decide to continue walking through hell.  Could we wait for her heart to get stronger so that another could live.  Hayley’s heart was amazing.  It loved big.  She never had an issue telling you how she felt.  Her heart would not hold back.  Someone very lucky was going to get that heart.

The night we watched her being wheeled into the elevator knowing we would never see her beautiful hair, face and body again was gut wrenching.  We had to remember to breathe.  I could barely comprehend what was happening.  We went home to wait for news.  It was not long before we received a message saying that Hayley’s heart was indeed perfect.  It was being transplanted immediately.  We assumed this was a local donation and we hoped that we would be so lucky as to meet that person.  Last Sunday that dream came true for me.

In early March I began the process of reaching out to Hayley’s recipients.  You write a letter and send it to the Organ Procurement Organization in our state.  They then review the letter and forward it to the donor advocates.  They decide if the letter needs to be altered and then forwards it to the recipient.  In both cases I know about so far, both women were notified that a letter was on its way.  That must have been exciting and scary all at the same time.

In the case of her Heart, she received the letter on March 31st.  Her name is Elena. (pronounced E-Lane-a)  That afternoon I was home alone when I received a FB messenger request from a stranger.  Her name was Elena.  There was not message and I figured it was another one of those phishing messages and began to point my mouse towards delete.  But I accidentally clicked accept.  I waited and there was no message.  I could see the “….” that she was typing.  While I waited I decided to troll this stranger’s FB page.  I immediately saw a photo of a lovely woman with three teenagers and a dog.  I thought to myself, Hayley’s heart recipient had three kids.  In my mind those kids were young as we were mistakenly told she was in her 30s.  I struggled to scroll fast enough to find July 2017.  There she was in a hospital with the tell tale open heart pillow!  Open heart patients receive these pillows to help hold against their chest when coughing or moving at all.  Imagine trying to keep your healing chest from falling apart.  It was then that her message came through.  My first response was “are you her?” “Heart?”  It was.

I began hyperventilating and frantically walking from room to room saying “omg, omg, omg”.  The dogs thought I had finally cracked.  I called Terri, she was there when Hayley died, she needed to know.  She came over with adult beverages as Elena and I began to chat.  At the same time I was calling everyone that had been there that week.  The support.  The  people that escorted Hayley to that elevator.  I read them the message.  Everyone cried.  I called Hayley’s closest friends, they needed to hear this news!

When Scott got home I realized he was not ready to hear this news.  He had indicated when I wrote my letters that he didn’t know how he felt about it and it was too overwhelming to explore.  I understood.

For the next couple of weeks Elena and I chatted online nearly every single night.  I learned she messages from the shower.  She tends to run late.  She is a single mother.  She has two sons 19 and 17 and a daughter that just turned 16 on Hayley’s birthday.  She was born in Peru.  She served in the military for several years.

She told me her transplant story.  When she entered the hospital she was not sure she would ever leave.  Think about that.  You are 44 with three kids and you don’t know if you will live another month.  How brave she was to enter that hospital.  She told me this was her second transplant.  Her last heart lasted 14 years.  Hayley’s heart needs to be her forever heart.  I immediately responded with how amazing that was and how strong she must be.  She asked me “don’t you think I am greedy?”  What?  She thought I might think she didn’t deserve two 2nd chances.  I couldn’t believe it.  Not even for a second did that cross my mind.  I knew that the person in the most need that was a match to my child’s heart was the one that deserved it.  That was Elena.

We found that we had things in common besides being close to age and mothers.  We have had similar careers.  She was a dancer, dancing ballet for many years.  She continues to do Zumba and I laughed remembering Hayley making fun of me doing Zumba.  I asked her did she have a new love for reality tv.  YES, since her transplant she watches the Kardashians and doesn’t even like them.  I cried and smiled, Hayley’s heart would be happy.  I asked about food cravings!  She had not eaten meat for many years and now she craves steak all the time, one of Hayley’s top 5 foods.  She can’t get enough chips and salsa!  I don’t know if I believe it has anything to do with her new heart.  But it is fun to think that my girl is influencing her life in some way.

Hayley has done more than save Elena’s life.  She has saved three children from losing their mother.  She saved a mother from losing her daughter.  She saved a sister from losing her sister.  Elena has indicated how much Hayley’s story has inspired her.  She refers to it as Hayley’s heart.  I think the thing that gripped me the most was when she told me Hayley’s heart was so strong that they have to medicate her to combat its strength.  Her heart is big for Elena’s little body. But we all know Hayley had a big heart in all ways.

When we began talking about meeting I told her about my friend, Marni, a local news anchor, filming Hayley’s story.  It was scheduled to air soon.  I told her about how seeing Bob Conner’s story on the news on father’s day had initiated my conversation with Hayley about organ donorship.  I was hoping she would be willing to film our meeting.  We have the opportunity to reach thousands of people, to inspire them with Hayley’s gifts to be donors themselves.  I was shocked to learn that her own daughter had received a heart transplant as an infant.  If or when her daughter needs another transplant it could be from someone that saw our story, made the courageous choice to donate and saved lives just like Hayley did.  She agreed and we set the date of May 6th.

We decided to meet at my brother’s home in Orting.  This was exactly in the middle of our two homes.  This also gave Scott the option to be involved.  He chose not to attend this meeting.  He just was not ready.  Since last week he has been interested in learning more about Elena and is looking forward to watching the story when it airs on Tuesday.  He even sent her a FB friend request today.  I was sad that we didn’t share the moment together but grateful that we have such respect for each other and our journeys alone and together.

A few days before our planned meeting Elena asked if we could speak on the phone.  She was nervous about the filming idea.  When I answered the phone I was taken aback by the fact that she had such a cute accent.  Duh, Dawn, she was from Peru.  Yet this had never occurred to me.  We talked for 45 minutes.  I told her how important this was and she was able to get past her nerves.

On Sunday I was a nervous wreck.  I was bitchy, emotional and barely able to breathe.  I was nervous about two things, being filmed (aka being fat on film) and how would I react to hearing my child’s heart.  If I let my brain go to far and think of the actually physical science behind the act I felt nauseas and  knew I couldn’t handle the day.  On top of all that I could not find the stethoscope I had ordered.  My amazing sister in law called around and found one at a Walgreens and despite the fact that strangers were descending on her home AND it was her birthday, she drove to get it for me.  Once I had a xanax on board I was able to go to the store, pick up fixings for a bbq and head south.  I shook my head in the car thinking, I am having a bbq to meet my daughter’s heart.  When Marni arrived shortly after me, we came up with the plan.  They would wait out front for Elena and interview her briefly and put her mic on.  I was already wired for sound.  I would then answer the door when she knocked.  My family, brother, sister in law and two nieces watched out the window as Marni and a wonderful cameraman watched for Elena.  4:00 was our meeting time.  Crap, I forgot to tell them about Elena time!  At about 4:15 my sister said she was there and described her.  I told them to stop spying.  When the door knock came I took a deep breath and opened the door.

We embraced, she is so much smaller than me!  How can someone so small be so mighty?  I couldn’t stop hugging her.  I hugged her until it may have been awkward.  She handed me yellow flowers.  I looked to Marni, what now?  We headed to the back yard and sat.  I couldn’t stop staring at her and her scars.  My mind was numb from trying to comprehend that my daughter’s heart was right there below the surface.  We were a bit awkward I think because we were being filmed.  I can only hope they edit it so we appear calm and collected, lol.  We exchanged gifts.  I had brought her a Hayley glassy baby that I had purchased for her before I knew her.  She gave me a teddy bear with what looked like a speaker with it.  I knew immediately what she planned to do and I was overwhelmed.  She plans to record her heart beat on the 24th when she has her next biopsy and therefore an Echocardiogram.   She even asked if I wanted to go with her.  What an absolutely perfect gift.  I am excited to be able to listen to Hayley’s heart at home where I can ugly cry without witnesses!

I asked if I could use the stethoscope.  I cannot tell you how I felt because even I am not sure.  I am still trying to process my emotions from that moment.  It may sound silly but I knew that sound!  She said “you made that heart”.  I started to lose it but pulled back emotionally and made a crack about our gene pool.  Awkward.  I clamped down so hard on my emotions I could feel my heart cramping.  But I had to do that.  My mind still cannot process Hayley’s death completely.  If I thought too hard about what I was hearing I knew I would crack.  I had to pull from a pool of strength I didn’t know I still possessed.

My sister in law, brother and niece listened too.  They all had the same reaction, tears of joy and amazement.  Even Marni who had met Hayley on a few occasions listened in awe at the wonderful heart that was beating on.  If I had gotten to pick her recipient I could not have picked a more worthy woman than Elena.  She is kind, funny and real.  Just like Hayley.

 

Our story will air on Tuesday, May 15th at 9:00 p.m. on JoeTV, locally 110 and again on Q13 Fox news at 10:00 p.m. on channel 113.  Depending on the news cycle it will air again on Q13 at 4:00 or 5:00 on Wednesday.

 

 

 

 

 

 

If you follow the blog you may remember the 7 page letter that I wrote to Hayley’s heart recipient.  You can find it here.

I never sent that letter, I thought it might scare the woman away.  We had been told not to expect to hear from any recipients for at least a year and most often it took at least 2 years for them to be ready to contact a donor family.  The way it works is I, the donor family, writes a letter.  That letter gets sent to the O.P.O.; Organ Procurement Organization.  A family advocate reads the letter, makes a decision if any of it needs to be redacted (I love that word), redact, makes me think of what Cohen or Trump is probably doing right now!  Sorry, got distracted.  The letter is then forwarded to a counterpart that handles the recipient’s case.  Eventually the letter gets to the organ recipient.  I was not in a hurry to write this letter only because I had been so discouraged about the statistics of how long it takes to get a response.  I felt I deserved to know whose life my daughter saved.  At the same time I am lucky to know a recipient and through those conversations saw it from their perspective.  They deal with survivor guilt.  When I put myself in their shoes I can’t imagine what I would say to the mother of the donor that saved my life.  I just wouldn’t know.  Add that they just survived a life threatening time and you realize that their emotional and mental state must be just as erratic as mine.  So I get it.  I put off the letter, I suck at disappointment.  If I didn’t write then the control was still mine.  I couldn’t get hurt.    I hurt enough.

In March I decided it was time to grow a pair and send the letters.  The worst thing that could happen was that I still didn’t know any more than I knew the day before.  I tried to keep the letter simple and one page.  I read it over and over looking for any words or phrases that would make these people feel anything remotely like guilt or reluctance.  I also tried not to sound crazy.  I just wanted to be me.  I wanted them to understand how happy I am for them.  That saving their lives gave me a purpose during the worse week of my entire life.  It gave me something positive to focus on and allowed my daughter to end her life as she lived it.  She was a beautiful and unselfish person at heart.  She wanted to live a life that helped others.  This was her final gift to the world.

Let’s be honest, I also wanted to know what kind of people were living with a piece of my daughter.  I hoped they were grateful.  I hoped they were a good person.  I hoped they might not have voted for Trump!  I hoped they were loved.

I told myself I had no expectations, yet I called the OPO the last week of March just to make sure they had gotten the letter and it had been forwarded.  I needed to know if it had arrived and they were choosing not to write me back.  I checked the mail daily much to our mailman’s delight.  Normally he is trying to cram a week’s worth of mail into that small space.  He politely asked me once if I lost my key.  No return letters.  You see I was told it might take a long time to get a response but I really couldn’t believe it.  I felt it would be ungrateful not to respond.  Then I would feel guilty for those thoughts.  I don’t know what they are facing in their lives.  But those were my honest feelings.

On March 31st Scott was in Yakima at a golf thing.  I had sat noticed a new request on my phone.  Great another phishing scam.  I seem to get a lot of the fake requests from fake “friends”.  I was ready to delete the messenger request.  There was no message yet.  As my finger headed for the reject button I saw the telling dot, dot, dot that you see when the other person was typing.  Okay, I will wait for it, maybe it will be entertaining, nothing good was on CNN that day.  Boy was I wrong.  This is what I saw:

Dear Dawn, I so very much hope that my contacting you like this is ok. I’ve just received the most beautiful letter I’ve ever read about your beautiful Hayley. My name is Elena and your daughter saved my life. Thank you!! Thank you for letting me stay with my family a little while longer. Write me back anytime. I’m always available for you. My heart will always be yours and Hayley’s. Much love, Elena

I asked “Are you her?”  “Heart?”

“Yes” 

She then sent me a picture of my letter and the photo card of Hayley that I sent.

I started ugly crying and talking to the dogs.  “it’s her, it’s really her”.  All I got was tail wags and blink blink.  I started calling people.  People that were there that week and read them the message.  Everyone cried.  My friend, Terri, came straight over with a bottle of lavender vodka and made us martinis.  I started to chat with Hayley’s heart recipient.  It was fitting Terri was here.  She was there every step of the way during those two weeks.  She witnessed everything I did. She was as thrilled and emotional as I was.

She apologized for being impatient.  She said she was writing me back and decided to look up “Be Like Hayley” and found me.  I loved that, she was a rule breaker just like both Hayley and I.  How perfect.  I told her impatience was my middle name.  We begin to chat.  We begin to build a friendship.  We are of similar ages, she 44, me 47.  She has three teenagers.  Her sadness for me and the guilt was obvious in her messages.  I reassured her that she was giving me a gift.  Since that day we chat often.  On Thursday we talked on the phone.

Today I will meet her.  I will get to listen to Hayley’s heart.  It will be filmed by Q13 and my friend.  She has been working on Hayley’s story since December when we first talked about how could that story make a difference.  It worked out perfectly.  The first filming we did I talked a lot about what it would mean to meet her heart recipient.  The story had not aired yet so now it will include our meeting today.

How do I feel?  I feel excited and nervous.  Excited to give my new friend a big hug.  Nervous that I will completely lose it and ugly cry all over her.  Scott will not be there.  He is not ready.  I am trying to understand.  I am respecting his decision.  (see I can be a grown up when needed)

The meeting will take place at my Brother’s home in Orting.  This is about half way between her home and mine.  I wanted to share this with my brother and sister in law.  They were there every minute.  I want them to be included.  So I have my stethoscope ready, I figured this was better than sticking my face in her chest.  I will listen to my child’s heart beat.  I can remember hearing it for the first time in utero in 1997.  I can hear it as I laid my head on her chest last July as they prepared to take her from me.  I don’t know how I will feel.  Will I recognize it?  I am so happy it continues to beat for such a quality person.  But it is hard to wrap my brain around it.  Hayley’s ashes sit in a beautiful blue urn on my mantel.  How can a part of her body still be alive?  The science behind it is mind blowing and honestly really difficult to wrap my brain around.  If I think too hard about it I can’t handle it.  I think about how amazing that heart was.  It was beautiful, it was healthy, it was golden, it loved big, it laughed long, it lived for the most important girl in my life.  I miss that heart with every fiber of my being.  If I think too hard I realize that if I am honest I am still in the denial phase.  She is just at school in Bellingham.  She will be home soon.  If I hear it beating for another how can my brain use that excuse. Has my brain used that to protect me?  What happens when it is gone?

I think about her, the recipient.  She is so brave.  She has grieved for me.  I know she has.  But she will come face to face with my grief today.  I will have to be strong for her.  I have to shut down the thoughts of scars and words like donor or procurement.  I have to not think of the Sunday that Hayley was taken from me but the Monday that this single mother woke up and knew she would still be there for her daughter and sons.  I need her joy to be my joy.  I need to remind myself that we did exactly what Hayley wanted.  Her life was not wasted at the end.  It gave life to so many.  Her heart beats on and today I will hear it.

 

In a little over an hour what was one of the most extraordinary dates of my entire life will be upon me.  It should be Hayley’s 20th Birthday.  But instead it will be a painful, brutal and in your face reminder of what is missing in my life.  I am typing through a cloud of tears.  I have been at the beach since Wednesday and barely cried.  But now that the actually turning of the clock is here I am getting more and more agitated.  Scott saw it.  He can’t handle it.  I feel like I am going to break into a million pieces at midnight.  The only thing keeping the pieces together is the overwhelming support I am receiving from everyone else.  My cousin and her daughter are here to keep a piece together.  Tomorrow my longest friend, Sara will drive almost 3 hours to be here just for the day and to hold another piece.  My brother, sister in law and two nieces will also make the drive for the day to hold their piece.  There are so many of you thinking of us and you are holding the rest of the pieces.

My greatest fear is that it won’t be enough.  How do I survive the date I became a mother without the child that made that happen.  April 29, 1998 at 3:30 p.m.  Hayley Storm McCutcheon entered this world and turned my world upside down.  She brought the sunshine into my life.  Almost 4 years to the day Henry completed my universe.  I had my sun and my moon.  I cannot understand how the world keeps turning without Hayley.  As I have walked on the beach I have felt her. I can imagine her coming in to my bed at midnight like she does every single year.  She would crawl up next to me and say “guess what day it is?”.  I would say “I don’t know, Sunday?”.  And it would go on until I hugged her, said Happy Birthday, I love you more.  Just more.

I would have to wait until she finally went to bed to pull out the balloons I would leave outside her door.  She knew they would be there every year and she would come out of her room with a huge smile when she saw her balloons.  The fact that I would have to wait until she was asleep and pretend she didn’t know always made me happy.  I would have carefully picked a present, ordered or made her a cake per her instructions and we would have the day scheduled down to the time we would go to dinner at either Stan’s BBQ or most years, Golden Chop Stix at Redmond Town Center.  We always sat at the same table.  She often had a friend or two with us.  She lived for tradition.  Will I ever sit at that table again.  I wonder if the owner has noticed our absence.

My favorite year, was the year of the necklace.  This year I decided Scott needed to be more involved.  I gave him very specific instructions to walk to Bellevue Square from his office and pick out a necklace for her that would be just from him.  I gave him suggestions of where to go.  I even sent him about 6 different options that she would like.  He chose to ignore all of that and go to Brass Plum at Nordstroms.  He probably stopped someone and asked where in the store do I buy a necklace for my 15 year old daughter.  Well he brought it with the silver bow on the box to dinner.  She opened the box and the look on her face was priceless.  Her friend and I knew immediately what she thought of it.  She quickly hid her disdain and said how much she loved it.  But the damage was done, he knew she hated it.  I can’t blame her it was an ugly ass necklace.  It actually had feathers.  We all cracked up at the same time including Hayley.  It was so funny she told him she would treasure it always but not actually wear it.  I wonder where it is now.

You know it is just a date now.  It’s not a birthday.  A birthday requires that the person be present and turn a year older.  That is what we celebrate.  Instead it will just be the date I gave birth to a perfect baby girl.  But the date seems to hold so much power over me.  I can only hope that the pieces will hold together for the next 24 hours.  How will I feel on April 30th?  Will I be relieved.  Will I feel guilty if I am relieved it is over or will I just move onto the countdown to the next big milestone.  Our lives revolve around time and dates.  I wish for just the next 24 hours that time could be more fluid that I wouldn’t need to watch the time and count the minutes until 3:30 and beyond.  Our lives are just dates lined up waiting to happen.  When you are faced with unimaginable grief, dates become your enemy.

Being at the ocean this weekend is soothing.  As I sat today and watched the ocean I thought it really doesn’t matter if the day was April 28th or a Saturday.  The tide keeps going in and out every single day.  The tide does not care if it is a Saturday or a Thursday.  Those are just labels humans gave the cycles of time.  Sunday is not tangible, you can’t see it or touch it.  How do I take its power away?  Will I miss her more because it is April 29th?  Will it hurt more?  Only if I give it the power.  I wish that I could at this very moment figure out how to take the power away from a date.  But I can’t.  The tide will still be low at 6:30 am and high at noon.  At 3:30 it will be half way, not in and not out.  I feel like my grief is like the tides.  It rushes in and it slowly backs away.  The only thing I can count on is that the tide will continue until I take my last breath.  At this point I have no solution or answers.  The date is going to roll around in 45 minutes.  I can’t control it.  I can only try desperately to control my reaction to it.  Can I rise to the occasion and celebrate what was, who she was versus mourning what is missing.  Do I have the strength?  Will this be the date I finally shatter?  Only time will tell.

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.