Code Blue

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”.

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Raising Baby Geniuses

Let me start out this post with a preemptive warning that I actually believe that toddler “education” is not something to stress about. When Bo was 18 months old, he was no joke, a baby genius. He said his first word at 7 months and his words skyrocketed after that. He was literally reading by 3 years old. I will be honest. I was kind of cocky about it and I sort of took credit for his success. I read books with him, worked on his sounds, colors and shapes and pretty much, from what I could tell, I had created a baby prodigy. All the signs pointed to his genius mom.

Then Mia was born. I took the exact same steps with her. I began reading her books and “testing” her on her knowledge and bless her sweet heart….she wasn’t a baby genius. In fact, not only could she not read by the time kindergarten rolled around, but she honestly knew maybe 5 of her letters, if that. Mia ended up doing fine and actually is super smart now. What I came to realize was that I actually didn’t have as big of an impact as I thought. I feel like kids cognitive interests will be perked when they are ready. So then what the heck is the point of trying to teach them at all?!

I decided that teaching my babies is actually the perfect opportunity to spend time with them and for them to spend time together. Maybe they aren’t becoming baby geniuses but the time together is kind of perfect! There is a lot of laughter, a lot of bribing and frankly, sometimes a little toddler tantrum thrown in the mix. But at least I am exposing them and giving them the opportunity to learn. It can’t hurt!

There are a few things that help me find success. First of all, high chairs are key for most of the activities! I can strap them in and they can’t get easily distracted with toys. Second off, I bribe them. Their bribes of choice lately are suckers. They will list off the parts of the face like Einsteins if they see a sucker on the horizon. It actually is kind of how I am with Peanut Butter M&M’s, but I digress. And thirdly, we sing A LOT! I wouldn’t necessarily say my voice is the voice of an angel but it motivates them enough to have me wondering if maybe it is!

Another activity I have found success with is stringing Cheerios on spaghetti noodles or skewers. This keeps them busy forever! Supposedly it helps with fine motor skills but it also will provide you with at least 10 minutes of quiet time. Que the Coke Zero and peanut butter M&M’s.

Last thing I usually do is work on colors. I usually draw about 6 different colored circles on a paper. I then have them sort fruit loops into coordinating colored circles. I have found that these things have worked for us. Even if it is just small things to help them follow directions, I feel like I am helping them become somewhat decent members of society.

Let me know if you try any of these. I am curious to know if it works for other kids. And if you have different ideas, I am always on the hunt for more!

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Dreaming Big

I remember as a child sitting next to my dad on the couch and watching the Miss America pageant. I was fascinated. The women were beautiful, dressed in sparkly gowns, they were incredibly talented and on top of all of that, they were smart. I am sure he could see the amazement in my eyes and my dad asked me if I wanted to be Miss America. I responded with a shrug and my dad answered the shrug by looking me in the eyes and telling me I could be Miss America if I wanted. He followed it up with, “You can be the president if the United States if you want. There is nothing you can’t do.” He believed it…I had no doubt he believed it, but what I didn’t say out loud was that I doubted both…I wasn’t smart enough, I wasn’t pretty enough and I definitely wasn’t talented enough. I was probably 6 years old and I didn’t feel enough.

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Stages of Grief

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:

IG: @carliethemidwife

BLOG: www.carliethemidwife.com

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The Voice of Thousands

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.

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