{"id":46,"date":"2017-08-27T07:07:37","date_gmt":"2017-08-27T07:07:37","guid":{"rendered":"http:\/\/hayleysmom.com\/?p=46"},"modified":"2017-08-27T07:39:51","modified_gmt":"2017-08-27T07:39:51","slug":"hayleys-team","status":"publish","type":"post","link":"https:\/\/hayleysmom.com\/index.php\/2017\/08\/27\/hayleys-team\/","title":{"rendered":"The Wall"},"content":{"rendered":"

Tonight I am home alone. \u00a0This alone is a rare occasion. \u00a0Scott very much like Hayley, is a homebody. \u00a0It is not that he is anti social. \u00a0When 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. \u00a0 I have never minded spending time alone. \u00a0My friend has a family home on Hood Canal that I am lucky enough to visit and that is where Scott is tonight. \u00a0I have stayed there many times alone and it has always been peaceful so I suggested he go. \u00a0My friend and I are going in the morning to enjoy the sun, meet up with another friend and paint rocks. \u00a0Evidently painting rocks is \u00a0a thing now. \u00a0You paint them, maybe with a message, leave them about town for people to find. \u00a0I used to set up a kid size picnic table in the backyard for a four year old Hayley and our neighbor Conner. \u00a0Those two could occupy themselves for hours painting rocks. \u00a0I guess I was ahead of the trend.<\/p>\n

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I am lonely, so very lonely. \u00a0Before all of you freak out and start messaging me that I could call you anytime, let me explain. \u00a0I don’t want company tonight so when I say I am lonely it is not a complaint, just a fact. \u00a0If someone asked me to describe the grief of losing a child one of the first words to come to mind would be lonely.<\/p>\n

I did not just lose my\u00a0\"\"daughter, I lost my best friend. \u00a0She would have been thrilled to have the house be girls only tonight. \u00a0I would have felt obligated to sit and watch one of her crappy recorded reality TV shows. \u00a0We would have sat on the couch in the family room, at some point I would rub her head and play with her hair. \u00a0Just a brief show of love and affection. \u00a0These are the times I miss her the most. \u00a0I would watch every episode of Kardashians and the spin offs to do that one more time.<\/p>\n

When we were in our third hospital in one week, \u00a0faced with the fact that she would not be going home I would curl into a ball on a small twin bed. \u00a0This hospital had rooms for rent. \u00a0It was called The Inn. \u00a0It was basically old hospital rooms from Providence days. \u00a0We rented one with three beds squeezed into the small space, my bed was the first on the right up against the wall. \u00a0The 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. \u00a0 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. \u00a0The wall was cold. \u00a0It was like I needed something solid to hold on to so my world would stop spinning. \u00a0I could hide. \u00a0Hayley’s Team as I called them had a group of leather fairly comfortable chairs outside my room. \u00a0A kitchen and a table to put puzzles together on. \u00a0I 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. \u00a0I would always be in the same position, hand on the wall. \u00a0It worked. \u00a0I left the door unlocked. \u00a0My family and friends could enter, sit on the bed next to me or the bed across to check on me. \u00a0They would speak to my back. \u00a0I didn’t have to look at anyone this way. \u00a0I didn’t have to see the pain, grief, sorrow and tears on their faces. \u00a0If I did not acknowledge their pain maybe my pain would not be real. \u00a0Maybe the entire thing would be a bad dream. \u00a0I felt incredibly guilty for not staying in her room. \u00a0Scott did. \u00a0There was room for one person to sleep in there, that was Scott. \u00a0The last night he could take no more and slept in the Inn, I was going to sleep in her room. \u00a0I ended up telling Hayley stories all night to the nurses keeping her body alive for the benefit of strangers.<\/p>\n

I could still manage and direct people in my usual ways from my position on that bed with the wall holding me up. \u00a0It felt like I had to hold that wall up. \u00a0If I didn’t I felt it would crash down on all of us. \u00a0My palm on that wall was my focus point. \u00a0Remember 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. \u00a0My object was a small stuffed classic Pooh Bear. \u00a0I used it in both births. \u00a0I almost squeezed its head off both times right before I got the epidurals. \u00a0I still have it. \u00a0Scott and I seem to reverse roles that week. \u00a0He was the one that greeted all the parents and young adults that we had invited to the hopsital to say goodbye to Hayley. \u00a0He hugged the girls while they weeped. \u00a0An entire evening of this. \u00a0I could not do it. \u00a0I could not see my grief on those girl’s faces. \u00a0He did the job for both of us. \u00a0So I held up my wall.<\/p>\n

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. \u00a0He was losing his sister. \u00a0He spent a short amount of time quietly touching her arm while the tears ran down his face. \u00a0I was there for that. \u00a0Then he joined me in the Inn. \u00a0He had the far bed, he slept almost all of the time that he was at the hospital, he held up the other wall.<\/p>\n

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. \u00a0We sat in someone’s office while he told us she was brain dead. \u00a0Our pediatrician was there, she kept me upright, she held my hand when I asked him are you 100% sure. \u00a0He coldly said “Well nearly 100% we have several tests we run, there is protocol before it is official”. \u00a0I looked him in the eye and said you will save her if she codes. \u00a0I know one thing about my daughter and if there was a 1% chance she would find it. \u00a0Scott backed me up when it felt like the doctor was trying to convince me to change my mind. \u00a0I looked to Tracie for guidance, she had been caring for my daughter’s health since she was 2. \u00a0She 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. \u00a0I didn’t stay there long, I had to get back to holding up my wall.<\/p>\n

Back in my Inn, hand on that cold, ugly, beige wall. \u00a0I laid there thinking to myself and asking questions in my head. \u00a0Am I in denial? \u00a0Did I understand what he said? \u00a0Would I really be “hurting her” as he put it if we bring her back if she codes? \u00a0Several times a day you would hear codes over the hospital intercom, this was an intensive care hospital. \u00a0I had already heard at the last hospital the code with her room number “rapid response team”. \u00a0I had heard “code blue” and her room number at this hospital. \u00a0No 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. \u00a0I knew the fastest way to get to her room. \u00a0I thought about it later, how happy and relieved we were that it was not her room number. \u00a0But now I think, it was someone else’s room number. \u00a0Another Family.<\/p>\n

In another post I will share in more detail what led to Hayley’s death, this is not that post. \u00a0But I want to share how extraordinary those 7 days were. \u00a0We don’t have family that live near us. \u00a0The closest is my brother and his family. \u00a0I love him and his wife more than anything. \u00a0They live an hour away. \u00a0But 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. \u00a0He was there. \u00a0He was there fast. \u00a0My little brother, 8 years my junior, a brother that was really raised in another household. \u00a0We had only lived in the same house together for the first 6 years of his life. \u00a0We were raised \u00a0as only children. \u00a0But he was our rock that week. \u00a0I have always enjoyed my sister in law’s company, but that week I got to really know her. \u00a0I 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. \u00a0Hayley would have loved how she bosses her Uncle around and he seems to love it. \u00a0Terri was already with me, she had been with me for the first week of this journey. \u00a0So this was the start of our. \u00a0My best friend and Hayley’s second mom was there in the middle of the night. \u00a0She lost her daughter, Ali, when our girls were in kindergarten. \u00a0I knew her after, Ali brought us together. \u00a0I knew she avoided hospitals. \u00a0She was also flying out in a day to the east coast with her girls for an important trip. \u00a0But I saw her. \u00a0She was there. \u00a0We didn’t need to talk.<\/p>\n

This is where it was an extraordinary experience. \u00a0By this time we had our Inn room and we sat in the circle of chairs. \u00a0I found comfort falling into my normal role as the planner, the boss, the organizer. \u00a0Everyone fell into a role naturally. \u00a0Kevin was the note taker, the creator of the caring bridge page. \u00a0His role was to be at there with us at every crucial moment, clear headed and asking the questions I could not voice. \u00a0Even through his own greif. \u00a0When my sister in law arrived she fell into role as the gate keeper. \u00a0My friend from high school and the one that held a leg while Hayley was born was keeping a close eye on me. \u00a0Terri somehow made food appear for everyone and erased my constant thoughts about how we were going to handle this financially. \u00a0She and Sara would stay with Hayley when I couldn’t. \u00a0They also kept an eye on Scott. \u00a0When my cousin arrived from Vegas, she was in charge of the dogs and Henry. \u00a0 Susan and her daughter arrived, she offered medications and made me actually laugh. \u00a0I sat there and said what I needed to happen and every single time the exact right person made it happen. \u00a0I needed medication. \u00a0That took three of them to make that xanax happen. \u00a0I gave a verbal list of which girls would need to say goodbye, I did not want it to become a circus of teen girls. \u00a0Jessi worked with Darin and Tamese to make that happen. \u00a0They had a system for the arrivals. \u00a0They made sure that all I had to do is hold up my wall. \u00a0 Tena brought food. \u00a0Susie brought food and booze. \u00a0We all were shocked and dismayed at the basket with the makings of lemon drops. \u00a0But guess what Susie is always right. \u00a0By the last night everyone needed and had a lemon drop. \u00a0\u00a0My mom arrived from Florida. \u00a0Her role was to guard Hayley as long as she could do it. \u00a0She was the one the hospital staff would know not to mess with. \u00a0When 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. \u00a0I can picture his face. \u00a0I can hear his insensitivity. \u00a0My mom was in the room. \u00a0Big mistake buddy. \u00a0I almost felt sorry for him.<\/p>\n

I was spending time with my child, I will leave the room when I am ready and then you can do your fucking test. \u00a0If the first three tests were correct she was not going to be any less brain dead in 15 minutes. \u00a0Even though I was ready to go back to my room in the Inn, \u00a0I stayed longer on purpose sensing his frustration. \u00a0I knew I had back up. \u00a0I laid my head next to Hayley’s and whispered to her “I am so sorry that this man is a dickhead. \u00a0But because he is, mommy is going to keep her mouth in your ear for a few minutes just to piss him off. \u00a0So just go with it sweetheart. \u00a0I told her I loved her and that grandma was in the room and I felt sorry for this guy because of it. \u00a0I 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'”. \u00a0No joke this is what I whispered, while he stood there preparing his test that would trigger a death certificate for my only daughter. \u00a0I am not sure if it was that day or another day, but my mom raised hell about that guy. \u00a0When 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. \u00a0This team knew instinctively what I could handle when I didn’t even know. \u00a0Everyone had a job at some point that week. \u00a0Scott and I had handlers. \u00a0I could hardly be in a room with Scott without losing the ability to breathe. \u00a0When 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.<\/p>\n

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. \u00a0We got that right always. \u00a0We met in the Inn when we had to make decisions. \u00a0After 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. \u00a0It still didn’t feel right. \u00a0What I didn’t mention is that I knew she was gone. \u00a0I knew exactly when it had happened. \u00a0I can’t talk about it in writing yet, but soon. \u00a0But 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. \u00a0Scott sat on the middle bed and cried. \u00a0He was ugly crying. \u00a0I held up my wall. \u00a0We knew we had to make some decisions. \u00a0So we pulled it together and sat across from each other with our knees touching. \u00a0These are things parents should never have to talk. \u00a0I knew what Scott wanted if he died, but I had not ever thought about what I would chose for my children. \u00a0We were very business like.<\/p>\n