I remember this one particular evening during treatment. I went to the Ronald McDonald Room, a large room on the 3rd floor of Primary Children’s Hospital where food is donated by organizations and restaurants for parents of sick children. Hayes had gone to bed and dinner was being served. I made my way down there so that I could have something besides cafeteria food. You walk into this place and no one is smiling…it is SO depressing. But I was desperate for some non-hospital food so I got my dinner plate and made my way to a long table with 3 other parents sullenly sitting in silence. Read More
I remember the day Hayes was given an official diagnosis so well. I was upstairs in my closet getting dressed when my phone rang. Read More
I get asked often about what it felt like to have 3 babies squished into my stomach. I can assure you, they were definitely squished in there. Well, two of them were squished, Hayes was as comfortable as can be. He was casually sprawled out under my rib cage while Heath and Reese packed themselves into the depths of my belly, pushing themselves head down battling for first entrance into the world. Hayes was always relaxed and happy with where he was. When I went into labor, it wasn’t a surprise when Hayes was the last to be born…the baby of the bunch. Read More
I have something to admit. Remember a few weeks ago when I said I had gained the courage to take Hayes’ crib down finally? Well, I have a confession, I just moved his crib to the opposite side of the room. I couldn’t bare to take it down so I just moved it in front of Heath’s closet. I literally had to shove it out of the way every time I needed to get clothes for Heath. So at least twice a day. But, I just couldn’t do it. The thought of taking it down felt like letting go of my baby. The guilt has been overwhelming. Read More
It was around 11:30 on Sunday night when I started to feel that all too familiar sting…the cyclical sting that comes on those special days and anniversaries. I realized that exactly 3 years before that very moment I had been getting prepped for my cesarean. I had unexpectedly gone into labor at 31 weeks 5 days with the triplets and my OB saw that my babies were coming whether I was ready or not. Read More
It was two years ago, right before the 5K and the babies first birthday. We were finishing up Hayes’ second round of chemo and I was still feeling naively optimistic. All I cared about was getting out of the hospital for the 5K and celebrating the babies. Hayes was sleeping in his hospital crib and I was sitting on the fold out plastic couch in my daily “uniform”….sweats. We were in the corner room of the cancer unit. There was a double door to get into our room and you couldn’t hear a sound. We were completely closed off from the world in our little corner that overlooked the Salt Lake Valley. Read More
The past few weeks, I lay my babies down for their daily naps and inevitably, they end up talking to each other under their doors across the halls. At first it is really sweet and then all hell breaks loose and Heath is kicking the door….laying on his back, pounding the door with his feet. Yesterday was another one of those days and I found myself feeling more and more angry with each loud kick of his door….sometimes I just need a break from my kids, I will be honest! So needless to say I was frustrated. Read More
The trip had been in the works for 2 years. Although we were dreading leaving our kids, we have had so many amazing experiences in Europe, so to say we were looking forward to our 15 days in Spain is an understatement. Steve speaks Spanish so we were so excited to completely dive into the culture! The trip was set to start in Barcelona for three days. Read More
I remember one night two years ago up at Primary Children’s Hospital. I had spent the day in a dark hospital room while Hayes slept on and off with intermittent showings of Baby Einstein’s on the TV. I played peek a boo with Hayes and then watched as he drifted off to sleep. It was usually when he fell asleep that I began to notice that I was starving. It was about 7:30 and I vividly remember asking the nurse to keep an eye on him while I ran to grab food at the cafeteria.
It was my break for the day so I usually “enjoyed” myself by getting a Coke Zero from the soda machine and even splurged on some cafeteria sushi. You know, the real fancy sushi with the plastic green grass? Yep, I was a high roller sometimes.
On this night, I had just made my purchase and was walking slowly up the stairs to the 4th floor when my phone rang. The caller I.D. said “Primary Children’s Oncology”…I assumed it was an automated call from the oncology clinic so I denied the call and kept making my way up. All of a sudden, over the loud speaker I heard, “Will the parent of Hayes Tate please immediately make their way to his room.” I had NEVER heard this before, for any parent let alone myself. I was in a panic and ran the last set of stairs two at a time. I used my keycard to get into the unit and ran towards Hayes room.
Doctors and nurses were overflowing out his door with anxious looks on their faces. I pushed my way in and Hayes lay right where I had just played peek a boo with him 20 minutes before but now his eyes were closed and blood poured from his nose. How did this happen so quickly?!? I held his hands and nuzzled into his face with my wet cheek pressed into his. He didn’t respond. I whispered “My sweet baby boy…” over and over again as tears streamed. I listened to the doctors as they explained to me that Hayes had been unresponsive and they had called a “Code Blue”.
The next step was for Hayes to have a CT scan to rule out a brain bleed. The blessing came within an hour and the news that Hayes did not have a brain bleed but rather low platelets and an extreme loss of blood was actually a relief. Hayes had scary situations all of the time, daily and sometimes hourly, so this roller coaster of heart break was all too familiar. The blood loss and platelet transfusion were just the teeniest of bumps in the road.
We were back in his hospital room and I sat rocking him in the green pleather chair. As I held him, I cried that night at what could have been. To be honest, it still takes me right to the edge of tears. The irony is that the “what if” has already happened, but it is just a reminder that I lived that fear.
As I held him, the hum of CNN played on the TV. My mind focused and I realized what the political panel was debating. They were arguing the presidential candidates. Who would be the most honest? Who had said what in their past? Who would cut taxes?…..I wanted to throw up, I was so angry. Here these 5 people were, passionately arguing over something that really, in the grand scheme of things didn’t matter, and I had almost lost my baby boy the hour earlier.
The cancer unit is this other world. You have to go through two sets of double doors and every room is pressurized to insure that no germs can get in. It is truly the most locked down area of the hospital because these little bodies are so vulnerable and susceptible to sickness. Because of this, it is incredibly isolating and lonely. You really don’t know what the weather is outside let alone the political climate. So listening to the news that night completely disgusted me. That people were worrying about things that didn’t matter just killed me inside. How was childhood cancer not the subject of their disgust?!
It probably isn’t completely logical. I understand that childhood cancer isn’t everyone’s agenda, but during that 331 day fight, it was all I knew. It was all I could wrap my passion around. I lived the world of childhood cancer. Still, to this day, I have a hard time empathizing with political and social issues and debates. For me, none of that stuff matters. My fight is childhood cancer. It will be until there is a change. This is my forever fight, my forever “Code Blue”.
It is so interesting reading everyone’s New Years resolution posts about a desire to simplify. A desire to purge their homes and lives of unnecessary things. That has been my life for as long as I can remember. I was always taking things to Goodwill and felt zero attachment to inanimate objects and things. I lived the simple life & put all of my attention into decluttering, reorganizing and simplifying. And then Hayes got sick.
Now, I can’t get rid of anything. I am now the lady on “Hoarders” that can’t get rid of a pencil because someone she loves looked at it once. For reals, I am that lady! I can’t get rid of anything. I have closets of baby toys, clothes, blankets, medical supplies, used binkies and even hundreds of blurry Hayes pictures on my phone that I refuse to let go of because they remind me of Hayes. I will look at a shirt and think, “I can’t get rid of this….it has been over a year since I wore it, but I remember I was wearing it when Hayes got done with surgery. I held him in this shirt!”
While I completely recognize that there is no rationalizing this, I am at a stage of my grieving process where unorganization and fear of getting rid of something important is at the forefront. I worry so much that getting rid of that shirt I wore is like getting rid of him. I hold onto anything that even remotely ties itself to Hayes. Anything that ties me to Hayes. The very thought of losing these sends me into a panic.
I was really starting to wonder if this was the new me. But as I was laying in bed tonight, I was scrolling through Pinterest and a “Stages of Grief” diagram showed up in my feed. I looked through it and realized I am at one of the stages. Ugh! I am in a “stage”.
As much as I am annoyed by this current stage, I continue to embrace the emotions that come and go. I definitely feel a patience with myself that I haven’t had in the past. I hope to get to the point where I can just hoard the emotions and not the things. Hayes is in my heart anyway….not in that sweatshirt I wore almost a year and a half ago.
I also recognize that this diagram is not a one size fits all. I have found comfort in reaching out and watching others in their own loss journey. I met Carlie when Hayes was in his second round of treatment. I spotted her and her husband across the hall with their newly diagnosed little boy that looked exactly the same age as Hayes. As it turned out, Cohen was the same age and Carlie and I bonded over our similar situations. I cheered with her when Cohen did well, my heart broke when she received bad news and I was completely devestated when she also lost her little boy to this terrible disease and as a result becoming a sister in this unchartered territory.
Carlie is a women’s nurse practitioner and certified midwife that shares her journey on her blog, Carlie the Midwife. She gives incredible advise and shines a light on her own loss and women’s health and laces it all with well timed humor. I adore her! Her post on grieving the loss of a loved one felt like it was a page ripped from my own heart. Feeling grateful that I don’t have to venture into loss alone.
Read more about Carlie: