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 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
Earlier last year, in February 2017, I woke up to a direct message in my Instagram mailbox. I get lots of messages and I really try to respond to each one because so many are from parents of newly diagnosed children and I want to help them as much as I can. Waking up to a new message was not unusual, but seeing who it was from was definitely shocking. It was a message from Rachel Parcell. In the Instagram world, Rachel is a big deal! I had been following her for a very long time. Here is what it said: 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”.
When our oldest, Bo was 2 years old, I remember him getting a whole bunch of hand me down clothes from his older cousins. We were poor college students so getting “new” clothes was really exciting. In the bag of clothes was a pair of toddler, khaki cargo shorts. Perfect fit for my buddy. I vividly remember him reaching his chubby little fingers into the pocket of those pants and discovering a little boy treasure. He pulled out the teeniest, little 1/4 inch monkey figurine from his pocket and beamed with pride as he studied it. I laughed that something so tiny had survived the trip….like a baton pass that Bo was accepting.
I knew that little guy was going to be lost in no time. How could something so small survive? Especially when we lose large toys on the hour. Well, throughout the years, through many moves, from different states, houses and children, that little monkey mascot continues to pop up. Just yesterday as I was cleaning out the toy box I found that little guy for the thousandth time. I took a picture of him, sent it to Steve and threw him right back into the pit of toys to get lost for another few years. That monkey continues to surprise me. When I saw that little figurine, it got me thinking.
As I head into a new year, I obviously do a lot of reflecting as I am sure most people do. I try to set goals, but, the new year to a grieving mother means another year of missing her child. And I do miss Hayes so so much! It doesn’t get easier and it hasn’t gotten less painful. The hard moments have become less frequent, but when they hit, they are more intense than ever before. Did I mention that I miss him?! So how do I push for any goals when I am consumed by missing my boy?
I was reading an article written by another cancer mom. She is in the heart of her child’s battle and she angrily expressed that she was not going to advocate for the government to fund “More than 4” because it doesn’t work. She was extremely bitter, and part of me totally relates to that. But another part of me realizes that I can’t let bitterness win. I have a lot to be angry about, but I have so much to be grateful for. I also am not in the heat of the battle of childhood cancer so I can view the fight with renewed strength and determination. From a new perspective of someone that has been there.
I have lost a child. I can choose to collapse and never stand up again or I can declare war on the enemy that took my child…CANCER. Because of my new perspective, I can be their voice. The voice of thousands of mothers and fathers that can’t leave their child’s hospital room for fear of something happening if they leave the room to go and get a bite to eat. The voice of the thousands of parents that have the secret, never uttered fear of “what if’s” that could happen to their child running through their head. The voice of parents that don’t want their spouses or children to see them cry so they save their silent tears for the hospital shower. And the voice of thousands of parents that are told they are so strong but they feel shattered and broken inside. I will be their voice!
So, with all of that being said, what is my New Years resolution and what does that random, tiny little monkey have to do with anything? I am an advocate. I am a soldier. I have no other choice now because this is what helps me feel that Hayes did not pass in vain. Will signing that petition for “More than 4” make a difference? Will flying to DC and talking to members of congress change anything? Honestly, I don’t know, but I have to try, because I am the voice of those thousands! And more than anything, I am the voice of my angel warrior Hayes. I refuse to allow him to be silenced! For all of them, this year is for you and probably next year and the year after that until all of this changes. I will not be stopped. I hope I continue to surprise people. Like that little guy, I may be one small person, but I am not going anywhere.