Today is May 1….the first day of Brain tumor awareness month. While I don’t intend to celebrate brain tumors, I don’t want to harp on depressing facts. We know brain tumors are depressing and devastating and I will share facts, but my goal is also to show that there is always hope and there is always a silver lining in this journey of life. During the month of May, every penny donated to the HayesTough Foundation will be donated to a brain tumor warriors family. Let’s spread kindness! Let’s spread hope!
My sweet friend Bianca Merkley is an incredibly talented singing artist and she has graciously given her talents to this cause. Her song “HOPE” is available on Bandcamp. You can download the song and choose the amount you want to donate. Whether it is 50 cents or more, every penny goes to a family in need. What I love about this song is that it’s intended to provide hope in all times of trial. Whether it is financially difficult times, marital troubles, miscarriage or cancer…we all have a story, and we can all use hope.
So gift this song to someone that needs that silver lining or gift this to your mom for Mother’s Day! Or gift a HayesTough shirt to someone that loves awesome shirts 😉! Let’s raise more money than we have before! And let’s gift hope to a family in need! We are #hayesarmy.
I woke up this morning feeling anxious and that all too familiar sick feeling. I had dreamt of Hayes all night, but not in a happy way. In my dream, Hayes was gone still, but I was going to the state prison to meet his killer….cancer. I had personified cancer in my dream and the hatred I felt for him was unlike anything I have known. It was as if all of a sudden I was able to direct all of the unfocused and figurative “Cancer took my child” anger at the “man” that killed my child. In my dream I was so scared to meet him and to finally see his face. I knew a piece of glass would be between us and in my dream I remember feeling a frustration that I wouldn’t have the ability to jump across the table and strangle the life out of the man that tortured my baby. But, I also felt relief that the glass would be there too because if I was being honest, cancer was the scariest man I had ever met. Read More
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.
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.
May is Brain Tumor Awareness Month…it’s a real thing. I actually despise that there has to be an awareness month, but heartbreakingly, it really is necessary. Before Hayes was diagnosed I did not realize that there was an awareness month, or that Gray was the color for brain tumors or that brain tumors are the leading cause of death in children. I had absolutely no clue. I knew that brain tumors were a bad thing, but I assumed it was a rare thing that never happened, like a scary lottery. You want to know a frightening statistic? Your chances of winning the lottery is 1 in 175,000,000. Chances of your child getting cancer is 1 in 285! Out of that number, 26% are brain tumors. But here is the thing, just like you, I think numbers are so arbitrary…they lack emotion and connection. These kids are so much more than statistics! I would say that I have literally gained hundreds of friends through social media of parents of kids with brain tumors. People I never knew before but we have a link, and now a deep connection. We are parents of brain tumor warriors! It is a club I wish on no one.
I remember one night up at Primary Children’s Hospital. I had just laid Hayes down for bed and I needed to get out of the room and eat dinner. The Ronald McDonald room was located on the 3rd floor and they were giving out a free meal. I was so sick of cafeteria food so I made my way down to get my free meal. If I am being honest, Steve and I really didn’t like going there. It was depressing to be around other sad parents. But, I was sick enough of the cafeteria that I ignored the hesitation and went to the Ronald McDonald room anyway.
I sat down at a table of other quiet parents, sadly eating their food in silence. I couldn’t eat my meal in silence so I asked what brought them there. A couple of parents were there because their kids had RSV and I listened as they told their frightening stories. Another mom was there because her son had cancer. I immediately reached out to her, feeling that connection of cancer mom to cancer mom. I asked her what cancer her son had and she told me leukemia. She reciprocated the same question and I replied with “brain tumor”. Her face immediately dropped and with total sympathy she said, “Wow, that’s really, really bad. I hear treatment is the worst for brain tumors and results aren’t great.” She continued on with the shocking responses over and over again. With each response my heart dropped a little more with the reminders that we really were in a terrible situation. We were a part of the cancer club, but in that moment I felt even more isolated as I realized that I was a scarier subtype. I tried to stay as optimistic as possible but in moments like this I would immediately be brought back to the reality that I desperately wanted to ignore. The reality is, research is massively and significantly behind for brain tumors as opposed to other cancers. I tried to loop Hayes in with the other cancers to keep hope alive, but if I am being honest, the second that Hayes was diagnosed with a brain tumor he was at an extreme disadvantage. Many kids survive brain tumors, but many more do not. Breaks my heart to even put that into words, but it needs to be said. These kids deserve to be fought for! This is why Steve and I went to D.C. We lived through the nightmare of a child with a brain tumor. I dread other parents receiving a cancer diagnosis’ for their children! Brain tumor or not, cancer is a real life horror that is killing more kids than AIDS, cystic fibrosis, asthma, diabetes and heart disease COMBINED! Cancer is hunting down our children and it feels like the government is ignoring it. The challenge that comes from the government not funding more than 4% on childhood cancer research is that it is our job to donate to foundations that fund private research and donate to cancer families! Here is one final frightening statistic, in 3 days, Americans will spend on Starbucks coffee, what the federal government spends all year on childhood cancer research. So, for the month of May, I have a challenge for you all. Whether it is Starbucks that is your weakness or a Coke Zero, try to forego one day of paying for a drink and donating what you would have spent, to a foundation. Do this for a whole week, once a week, once for the month. Whatever you can. There are so many good foundations if you already have your favorite or there is the HayesTough Foundation (wink, wink, nudge, nudge 😉). Imagine the difference we could make if we all did this together! 🎗🎗🎗
For everything donated during the month of May, we will donate proceeds to a brain tumor family! Let’s change the world together. #hayesarmy
Yesterday has come and gone. The buildup is over and now we wait. We spoke to congressmen about a bill that needs to be passed to raise funds for pediatric cancer research, the STAR act. We told our story a lot. There were lots of tears, and I am sure Hayes’ picture spoke to people. I felt like I was pleading with people to listen and FEEL our story. I felt like they did. He is fulfilling a mission. It is amazing to be a part of. All we can do now is wait and see if what we said made an impact.
While growing up I always thought I wanted to be a politician. I had a dad that genuinely believed in me and would tell me I could be the President of the United States if that is what I wanted. To be honest, now that I am older, I have no desire to be a politician. I am completely out of my area of expertise and seeing the behind the scenes in DC yesterday, it is even more clear that politics is not any desire of mine. It has been an interesting experience! But, I hate when I start to question myself and what I can actually accomplish.
Can I, a young mom from the west, that didn’t graduate from college and stays at home with her kids really make a difference? I read a quote the other day that really stuck out to me.
“People who really want to make a difference in the world usually do it, in one way or another. And I’ve noticed something about people who make a difference in the world: They hold the unshakeable conviction that individuals are extremely important, that every life matters. They get excited over one smile. They are willing to feed one stomach, educate one mind, and treat one wound. They aren’t determined to revolutionize the world all at once; they’re satisfied with small changes. Over time, though, the small changes add up. Sometimes they even transform cities and nations, and yes, the world.” – Beth Clark
If Hayes taught me anything, he taught me that every individual holds value! We all have the ability to make life better for those we stand by. Standing up for childhood cancer research isn’t going to change what has happened to my sweet Hayes. But, if I can help other families, ease their burdens and hopefully increase research, maybe other families won’t have to go through what we did. It is easy to hide away after a tragedy, but I don’t want to look back in ten years, on this moment, and imagine how much of a difference we could have made, but we were too afraid. In ten years I want to tell the world that fear tried to break my family down but we pushed through and didn’t let it. We chose to stand up for thousands and honor our Hayes.
So, now what? We keep fighting. And now is when you can help. Sometimes, getting involved from a legislative standpoint seems very overwhelming. There are so many organizations that can help you get involved from a grass roots level! Our government needs to be held accountable to make sure that they are doing everything they can to stand up for our children. Join Speak Up for Kids’ Cancer. It is free and easy and will help you stay in the know about the most important childhood cancer issues and legislation and give you everything you need to take action and write your congressmen. Go #HayesArmy!!