The Wall

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

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

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