Last week, after Steve got home from work, I went out for a “mommy vacation” to the gas station to grab a Coke Zero and just drive for a minute. I got into my car, plugged in my phone and turned on my music. I backed out of my driveway and started my evening drive. The sun was still up, just low in the sky. The breeze was rustling the fresh leaves in the trees. It was beautiful. As soon as I got onto the road, that all too familiar heaviness sunk into my chest. In the quiet, the tears began to sting my eyes and that lump started to grow in my throat. In the stillness of my car, I feel my baby, I always do. We spent so much time together in the car. Just him and I, back and forth to the hospital, to Bo’s games, to my appointments. I never left him behind when he was here because I wanted to keep him safe. I still don’t want to leave him behind.
Some days hurt so much. It is a nightmare to go through. The pain is at its worst when I am driving by myself because it is a reminder of the times when he was with me…just him and me. It is like I start my car and my mind slides through every memory I have of him, trying to hold onto every picture in my mind. When I am by myself, the tears don’t hold back and flow freely with the memories. I am sure the cars that drive by feel really bad for the crying crazy lady next to them. But, I can’t help it and to be honest, I don’t want it to stop….I don’t want to “help” it. I want to embrace every emotion related to my boy because that is him, inside of me once again. Read More
I will be honest, when Steve asks me what I want as a gift, I honestly can’t think of anything. What really makes me happy is his traditional chocolate covered strawberries! I really do have everything I need and more in life. But, I do realize that my family likes to give me love and so I have put together a list of my favorites. From clothes to bath bombs. All of these are no question, my favorites right now! So, hint-hint to all the husbands out there, these are a few ideas to keep your wife around! 😂
First off, my obsession ever since having the triplets has been baths. I had to take a bath nearly every day when I was pregnant because my body was in so much pain. Since then I take a bath about once a week. For me it is my favorite way to unwind. I usually do either bath salts or bath bombs and I have tried both of these.
All through my teenage years I looked for a signature scent. I tried Clinique Happy for a while and Tommy Hilfigger perfume when I was in high school. I lost interest in smelling good though once I had kids. I didn’t get the big deal and it was just another step in the getting ready process that I didn’t care about so I stopped. Fast forward to right after I had the triplets and I found a dream scent! Burberry Brit perfume is hands down my favorite! I think it is subtle but strong. It is a beautiful smell.
Next, have you tried the latest rage in nail care, dipping powder? It is THE best! I refuse to do anything else on my nails. It is easy, strong like acrylic and lasts 2-3 weeks. I haven’t tried this at home starter kit. I have only done the dipping powder at the salon, but this has my attention.
I am adding clothes to the list because I have a problem…I really, REALLY like clothes. Lately I love the texture of embroidery and when it comes to jeans, I love high waist. Express Jeans are my favorite. And when it comes to tops, you really can’t go wrong with graphic tees. They have always been my go to.
And lastly, for those moms that love gardening, this is one of my favorite things. I have a lemon tree on my dining room table and it is the cutest. You can buy lemon trees straight from my go to, Amazon. These plants are indoor and outdoor. So charming!
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!!
It was nearing the end of round 3 and it was starting to happen. It was always the same, every round Steve and I would start to lose our minds at around day 14. Hayes usually felt great at this point which was deceiving because his white blood counts needed to make their way back up after being knocked out by chemo and he was extremely susceptible to infection. It was a waiting game for when we would get to leave the hospital. Every day we would wait for Hayes’ bloodwork to come back and we would pray that his white blood counts were safe enough for us to go home. I was always so hopeful. I would talk to steve first thing in the morning and before his lab work was back I would “guarantee” that his counts would be up. I would promise to call him when we were on our way out the door. But then results would come back and disappointment would kick me in the gut. We were usually not going anywhere and Steve and I would both be so frustrated. It was out of our control, out of the doctors control and out of the entire staffs control. We could do nothing but wait and sit in his hospital room watching Daniel Tigers Neighborhood and Baby Einstein over and over and over again.I remember one morning crying to Steve that I was starting to lose my mind. We weren’t going home that day and I missed all of my kids, my home and the comfort of normalcy. Steve was frustrated too and missed the support of having a spouse at home. We were always ready at this point to be done! I got off the phone and sat down on the couch listening to the classical music coming from the TV. I cried in frustration and I looked over and Hayes was asleep. He was bored so he would take catnaps throughout the day. I turned off the TV and decided to take my frustrations out on a hospital room circuit workout. I was laying on my yoga mat doing sit-ups when I looked up at the sink above my head and noticed marker written on the under side of the sink. It was a note from someone that had been where I was 2 years before. It said:
“If you are reading this it probably means you are also sleeping on the floor…stay strong!!! Your child will thrive off of your support and love. *SAWYER STRONG 2014*”
I stopped what I was doing and immediately began to cry. I didn’t even know who this person was but I felt like I wasn’t alone. I felt loved by this person that had paved the way before me. I knew I needed to be strong but this person made me realize it that much more.
When your child is diagnosed with cancer, you immediately become a part of the club. A club that no one wants to be a part of. Before Hayes was diagnosed, I really didn’t even know there were enough kids with cancer to “have a club”, as it turns out, there are so many people in this club it is heart breaking. But, if there is anything I learned through this experience, it is that our children are stronger than we realize and we, as parents are stronger than we can imagine.
After Hayes’ stem cell transplant, Hayes had to have a G-Tube put in. He was not eating well and so rather than having an NG-tube down his nose to eat, he had a tube put directly into his stomach. He was much more comfortable, but I was so intimidated by it. I had given Hayes shots, I had flushed his lines, I had changed his dressings, but out of everything, the G-Tube scared me to death! The tube could get pulled out and you had to quickly push it back in and inflate a little balloon. In theory it seemed easy enough but in comparison to cancer, this was a whole different area of expertise. It wasn’t Life or death but I felt completely uneducated on what to do if it came out.
When Hayes was readmitted back into the hospital when his cancer returned he was being taken down for a scan. I had been holding him and had to lay him back down in his crib when my foot caught on his G-tube and yanked it out of his stomach. He had had it for 4 months and this was the first time this had happened. The nurses were right there and I looked at them in a panic, “What the heck do we do?” I was expecting them to grab him and calmly put it back in but they looked back at me mirroring my same expression. They didn’t have to deal with G-Tubes in the cancer unit very often so they had no idea what they were supposed to do. They were just as confused, if not, more than I was. I thought about having them look for someone that knew what to do, but I worried that the wound would begin to seal shut, that I would miss the window of time to help him because I had been scared. I took a deep breath, reached deep inside myself and found the knowledge I had tucked away. I put the tube into his stomach, grabbed a syringe from the drawer and inflated the balloon. I DID it! I was genuinely proud of myself! It had been something I deeply feared and I had faced it head on because I loved my baby! To others this may seem small, but this was bravery for me.
I keep Hayes’ emergency G-tube kit in my car as a reminder that I can do hard things. As a reminder that I love my children. And as a reminder that there is nothing I won’t do for the people I love!
“Love gives you a crazy kind of Brave.” I know that now.