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 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.
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.
I recently read the beginnings of a memoir by a 46 year old man that was diagnosed with endocrine cancer. As different as my situation is, I related so much to the cancer experience of this man. The journey from symptoms to discovery to diagnosis….I have walked that path. But as a mother as opposed to the patient, our paths diverged. As I read him describe his “painful” chemo cocktail of etoposide and cisplatin for 3-4 months, tears began to burn my eyes. Not only did Hayes have those exact “painful” chemo drugs, but he also had 8 more chemos over the course of his 8 Month protocol. My sweet 10 Month Old Baby was exposed to those same drugs and more. It was our only option, but as parents you do anything. You do anything to keep them safe and comfortable while at the same time, knowingly giving them poisons that nearly kill them, day after day. But that is our only hope. It is the only weapon we have to fight the monster that is just as relentless as we are.
Looking back over the battle we had, I realize that during that fight, I really didn’t recognize the magnitude of what we were facing. I was devastated and scared, but every day I clung to the hope that chemo would fix my baby. Having hope was the only thing I had control over and I unceasingly held onto it.
I remember so vividly what I was doing a year ago today. It was Halloween of 2016 and Hayes was Home. I woke up early, got my kids in their costumes and excitedly dressed my 3 babies in their themed carnival costumes. Life was beginning to “normalize” and I had nearly let go of all the fear of cancer I had accumulated over the past 8 months. Although Cancer was in the rear view mirror, a deep, hidden part of me knew I was forcing it away; running from the monster that would forever stalk us. But, I ignored it and I have no regrets about my denial…it allowed me to feel peace and happiness and joy which my family so desperately deserved. Life was blissfully naive for a few short months.
I feel like my life is mostly in black and white now. I still smile, my kids still smile and there is laughter. But, that rich deep feeling of life that is seen through saturated color is not felt very often anymore. I sat through my kids Halloween parade today and watched as my kids marched through the halls of their elementary school, proudly showing off their costumes and my babies danced to the Halloween music playing over the loud speaker. I smiled as the scenes unfolded before me, but then it hit, it always does, that Hayes should be here and the magic of another holiday vanishes. It is painful. Steve and I always smile for our kids, but deep down, we want to hide. Sleep away the winter that brings with it all the painful reminders of our sweet angel boy.
I don’t like to focus on the pain, I really don’t, but this is also our story. Life isn’t easy, unfortunately. But, in a strange juxtaposition, what gets me through these hard days is hope. Hope for a brighter future, hope for a happy tomorrow & most of all, hope that I will see my Hayesey again. Hope is what got me through that original fight and ironically, it gets me through my days without him now. I will continue to slap that smile on my face with a hope that one day it won’t be so forced. With hope that one day I will be able to have a life where Hayes is simply a warm, happy memory and not a painful reminder of loss in my heart. Until then, I hope.
There is no question that in the moment Hayes took his last breath, a part of me changed. It felt like a part of me died, and they had forgotten to bury me. To be honest, so much of grief is just surviving. Day to day, hour to hour, Minute to minute and moment to moment. I have a lot of moments left to survive in my life. Read More
Let me preempt this by saying that I know I have issues. I am sure after you read this, you will probably agree with my personal assessment. Since Hayes passed away, I feel like I have become incredibly in touch with my own emotions. I am a bundle of lots of different feelings from one moment to the next. But, for someone that is so aware of my own emotions, I feel like I have become extremely detached from most everyone else’s. I almost feel like I have lost a slight bit of empathy in my life. Odd I know! I am actually embarrassed to admit it.
I remember when Hayes was fighting so hard in his bed at the hospital when the presidential debates were going on. Ugh, politics I know…but bear with me. I remember how scared everyone was. How deeply entrenched people were in the presidential candidates and I was sitting in the cancer unit with my sick baby boy, surrounded by rooms of sick children fighting like hell for their lives. I remember being so jealous of people, where politics was all they had to stress about in life.
Now, fast forward a year later and here we are in childhood cancer awareness month, in the heart of my daily rants about my complete disgust for the monster that is childhood cancer. I miss my baby boy so much, it is gut wrenching. Then Hurricane Harvey hits. I know it is a tragedy. People have lost everything…but really, have they? I was watching an interview with a family that was crying about the loss of their house and all of their possessions. They said this as their 2 year old and 4 year old played on the hotel room floor in front of them. The father bent down and rubbed his daughters head as the mother sobbed. In my skewed grief and I guess bitterness, watching him rub his sweet girls hair, I thought to myself, “You get to ruffle your daughters hair. I would trade you in a second! If I could have all 6 of my children here in my arms, but the trade off was that I didn’t have a house, I would take that deal in point two seconds.”
Now logically, I understand that they have a right to their heart ache and their own feelings of loss. It has got to be so hard and so frightening. But at the end of the day, they have their family. They have each of their healthy children. That is ALL that matters in the end because at the end of this life, you can’t take your house or your possessions with you. Up at the cancer unit of every Childrens hospital is a version of Hurricane Harvey that is killing children every day, but the horror isn’t being seen. It deserves its own state of emergency.
For those that came to my blog for my usual sweet posts, I am sorry to be so angry today. But this is grief, it ebbs and flows with everything I see and experience. Sometimes it doesn’t make sense…maybe I am actually totally crazy. I wouldn’t rule that out. In a strange bizarre way, I feel like this is my way of keeping Hayes alive and remembered. But, regardless, thanks for listening to me on my own little soapbox corner of the internet every day. It probably gets old. I can’t stop. I have walked the path that has shattered my heart. A path that few completely understand. I will forever be scooping up the broken pieces. I will forever be holding my own little telethon and relief efforts, for the hurricane that is childhood cancer. Rant over….oh wait, we all know that isn’t true, I have days and years of rants ahead of me until this disease is stopped.
I woke up yesterday morning feeling complete. For a moment I sat in that in between time where I didn’t know what was reality and what was a dream. I didn’t feel any rush to wake up because I was in pure bliss, holding my sweet baby boy again. In my dream I was sitting in that all too familiar Hospital room at primary children’s, holding my angel Hayesey, but in my dream he wasn’t an angel, he was very much here and fighting still.
I have been open from day one and I will continue to be open. The reality of my new world of grief is that I shift from sadness to doing ok to anger to everything in between. The past few days I have been angry. I sometimes feel like life has moved on without us. We are in this bubble of our home and I have zero intentions of leaving. I can’t bear the thought of going out into the outside world, where stresses are things I would give anything for. I lost my baby…8 months today. I ache for him.
Sometimes I feel like this can’t be real. This was not how I imagined my life would be. I was going to raise my six kids and stress about naptimes, carpools and school lunches. Was he ever actually here? Or was he the best dream of all time and now I have to live each day wishing for sleep hoping for that dream to return. He was here right?
I guess it gets strange in my mind because the world moves on and I have to learn how. How? I have found ways to distract myself, to slowly close up my broken heart. The foundation has become a bandaid that I am so incredibly grateful for, but I know deep down, it is just a bandaid. I am still broken inside and most likely, I always will be. I have to learn to live broken, I guess.
I have this feeling that Hayes is busy. He hardly misses me because he is discovering everything he missed. It has been 8 months but to him, I hope it feels like 8 seconds. I hope he feels no sadness for me because all I want is for him to experience joy…pure unpained, cancer-free, toddler joy. Ugh!! I miss him so much.
I have to keep reminding myself that this pain, this is life. Life is a mash up of earth shattering lows and the highest of highs. I am so lucky to have known those highs…when all 8 of us slept under the same roof. When we drove to California and Disneyland. When we would get Hayes out of bed at 10pm to play with us in our room. I have known a perfect life. I will forever have that to be grateful for. It is ok to be mad sometimes…that is just how I feel today. Sad and mad and heartbroken and grateful. I am a sad but I am a lucky one.