Simplifying Memorial Day

I woke up on Monday morning feeling a dark cloud over my heart. I was on the verge of tears all day long. Why? I really don’t know why that Day set me off so much. Every day is hard, but I had to pull myself out of bed and force a smile on my face that day. Celebrating Memorial Day once meant swimming, barbecues and over eating. While I want to continue to keep those traditions going for my children, I couldn’t help but feel the need for a new set of traditions as I woke up that morning. I know Memorial Day is meant to honor soldiers that made the ultimate sacrifice and gave the gift of freedom. But, I do feel that my baby gave the ultimate sacrifice in his own way. I have a deep belief, possibly hope, that one day the world of pediatric cancer will be changed because of Hayes. He is my hero!

We woke up for the holiday and decided to take the kids up to Park City, Utah. It was so beautiful. The hills were so green and we all felt Hayes close. Fittingly enough, I saw several butterflies. It is strange how after you lose someone you love, you see them in everything, even a butterfly flitting above the grass. We call them “Hayes Hints” or love notes from Hayes. We drove to the Big White Barn and decided to check it out. Both Steve and I had never experienced the famous white barn so it felt like the perfect activity to start off our day. The barn was charming and had a definite Magnolia Silos vibe.  

Later we bought flowers for Hayes and took them to his perfect resting spot. We chose big yellow sunflowers because they felt youthful and playful, perfect for Hayes. The cemetery was so beautiful that afternoon. So many people were there celebrating their loved ones. One of my favorite sights was seeing kids playing football and laying on the grass next to their loved ones graves. The cemetery was lively and homey. The complete opposite of how I have always pictured cemeteries. It has now become an extension of my home because a piece of me is there. We sat around Hayes’ headstone and looked at the beautiful pictures, a story set in stone while bagpipes played in the distance. It was perfect and peaceful.

After leaving we headed home and ate as a family. We spent the rest of the evening outside, playing basketball, sitting in the yard and being present for each other. This is what I love about life now, these simple times mean the most!  

While Memorial Day had its ups and downs and definite sad times, I feel grateful for these moments that keep me grounded. To finish off the day we received a gift in the mail that just blew my mind. It was a large wooden sign with a beautiful quote. Sometimes perfect strangers know exactly what you need. I am forever grateful that Hayes is cheering me on forever. I absolutely, wholeheartedly believe this!  

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Grief Is…

Before Hayes passed, I thought I could imagine what grief felt like, I was so scared of it and justifiably so, I had no idea the depths of pain it would cause me. Now it is all that I have left of him. The other day I was putting laundry away in the boys room. I opened up the closet door and that pain punched me in the gut. There on the floor in the corner of their closet is a pile of grown out clothes. A pile of clothes Hayes once wore. I fell to my knees, picked up each piece of clothing and remembered what we did when he wore them. That is grief…a pile of his old clothes in the closet.  
I remember last spring, when Hayes was going through treatment and I was browsing the toddler boys section of Target. I remember seeing a sweater and thinking I should get matching sweaters for the boys to wear in the fall, when Hayes was done with cancer. I never thought I would be that mom, but I loved buying their clothes in two so they could match. Very clearly, I remember for a brief moment fearing buying two of the same because what if Hayes wasn’t going to be around. I remember the distinct feeling of being disgusted with that uninvited thought. Of course he was always going to be there. So I bought two of everything I wanted for them trying to force the guilt out of my mind, to will that thought out of my head. Grief is looking in their closet now and seeing all those duplicates still with tags on the collars.  


If you go into the boys room, it is still distinctly both of theirs. Matching cribs, matching bedding, matching “H’s” above their beds. A thoughtful design to keep them connected. His crib is still there. His “H” is still hanging. His bedding is still neatly folded next to all his stuffed animals in his crib. Grief is seeing Heath grow bigger every day and realizing with dread that I will one day soon have to take Hayes’ crib down to make room for Heath’s “big boy” life.


Soccer teams, tee ball teams, late night giggle fests, triplet birthday parties, learning to ride bikes….everything in groups of 3. Everything I never knew I dreamed of. Grief is the what could have beens.

As the school year came to a close last week, I found myself reflecting on what my kids just fought through. It was a rough year academically and socially. I find myself being ok with a “C” on their report cards or being ok with them falling behind in their reading abilities and being ok with them acting out at school. I try to talk them through it as best I can. We are all treading unknown waters so I let things slide and hope for a day when sadness won’t overtake their school work. Grief is watching your older children struggle academically and socially because of their loss. And along those lines, grief is feeling guilty that my other children need me and I don’t know how to be there!

Tonight I went out and sat on my porch. The sun was setting and there was a light warm breeze twisting and turning the “Hayes” wind chime that hangs on my front porch. The street was quiet, no one was in sight. I just sat in the chair and listened as the wind chime sang to me. Tears flowed and I felt Hayes close. Grief is feeling him in everything. The wind, the sky, a smile, the rain….
The odd thing about grief is that it never gets easier. It hasn’t gotten less painful with time. In fact, it feels like it gets more and more painful each day. How does the world move on? How can the world function without my sweet Hayesey. Grief is watching the world move on and realizing I still have a lifetime without him. I am sure pain will come few and far between as the years go by, but it is hard to find solace when I feel like my heart breaks more and more each day! I promise I will continue to choose joy, but on a day like today, Memorial Day, where we remember the fallen, I am choosing to feel everything I have left of him.

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Friday Faves Childhood Cancer Edition

When our sweet, 10-month-old Hayes was diagnosed with Choroid Plexus Carcinoma in January of 2016, our world completely shattered. Unbearable, extended hospital stays that separated our family made it difficult to maintain any sense of normality! The side effects of chemo and the constant anxiety of possible unexpected hospital admissions meant worry and sleep deprivation for the entire family. And through it all there was an underlying and unspoken worry that we might lose our son, our baby.
To say this was a hard time in our lives is an understatement. But what got us through was the incredible outpouring of support and love from our friends and family. It helped ease the painful blow that was our journey through childhood cancer.

I often get asked by people what they should do to help families with a newly diagnosed child with cancer. On the HayesTough blog I recently shared 10 ways to help an entire warrior family. Here is the link to read more on that, but for today’s Friday Faves, in honor of Brain Tumor Awareness Month, I am sharing some of the necessities for the child going through treatment. I unfortunately know what a difference they make. Each of the things I am sharing were amazing for Hayes’ quality of life and if you happen to have the heart breaking experience of having a child close to you diagnosed, these will hopefully bring them comfort as well. So to start the list off, Hayes’ aromatherapy stuffed puppy was a life changer!  It is one of those things that truly brought him comfort.  It is weighted, can be heated, frozen and the smell relaxed him when he was stressed.


Aromatherapy Puppy


Aromatherapy Hippo

An interesting thing that happens when you walk into a hospital is this immediate hit of the chemical smell.  I hated it so much.  It depressed me to smell something so stale.  I know it can be worse, but it was hard for both of Hayes and me.  So I began bringing in aromatherapy wall plug ins.  I had one of those plug in wax warmers and I would drop about 10 drops of my favorite essential oil and then fill it with water and turn on the light. Without question, Hayes’ room always smelled like home.

Wall Plug In

Frankincense Essential Oil

Lavender Essential Oil

Another little known fact about childhood cancer warriors, if they have what is called a port, you have to “access” it every time you need to draw blood or administer medication.  This entails sticking a large thick needle through the skin to the tube that lies just beneath the skin.  It gave me anxiety, so I can only imagine how it is for these sweet kids.  I also sometimes had to give Hayes shots at home.  These two favorites were so helpful for all of these scary polks.  I even was able to give Hayes a few shots while he slept without him waking up screaming.  Made such a difference.

The Buzzy

Shot Blocker

The next thing is this lullaby night light elephant.  While he was sleeping, the comfort of having that sweet music next to him in bed brought Hayes some normalcy and consistency each night and nap time.

Night Light Lullaby Elephant 

The last thing is one of those tragic mecessities I wish I didn’t know about.  From the outside this may seem extremely simple, but I could hardly supply enough in my house.  Poor Hayes would vomit all over the bed in the middle of the night and all I can say is thank goodness for Chux!  I would lay one of these down in his crib and if he threw up on it in the middle of his sleep I could slide it out from under him, throw it away and slip another one underneath him.  All without having to wake him much.  These were SO helpful!  They have also become my go to for my other kids when they have the stomach bug.

Disposable Changing Pad

*Many of these things I include in our comfort kits that we supply to cancer warriors on our website. Go there to donate a comfort kit to a child in need!

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HayesTough Cancer Awareness Video

It was less than a year ago, I put together this video to help raise awareness for childhood cancer.  Hayes had just rung the chemo bell and our whole life shined brightly ahead on the horizon.  I was incredibly optimistic. In fact, I felt guilty because my sweet baby was doing so well when so many kids were not.  That is why I made this.  I wanted to do anything I could to help the other kids still fighting.  Now my baby is in heaven and I still feel that fight.  Brain Tumor Awareness Month is quickly coming to a close.  I hope I helped make you aware.  I hope I taught you that childhood cancer is a common, ignored epidemic.  I will keep fighting and I will try to maintain that optimism that I had when I made this video.  It will be a much less naive optimism, but I will continue to hope for the kids that still fight.  Thank you to everyone that has donated and helped in our fight!  We couldn’t do it without you! #hayesarmy www.hayestough.org

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We Won’t Let Each Other Disappear

I mentioned the other day that the past few weeks have been a little hard.  I find myself on the verge of tears daily.  I am ultra sensitive as well and even find myself getting offended super easily.  This is so unlike me.  It is unusual to experience all of these emotions I am not used to feeling.  I have done so well emotionally up until recently.  I feel like I have been running on adrenaline and now it is really starting to hit that this is my new life.  I have been transparent from day 1 with Hayes and I will continue to be so.  Depression is often times very hush hush, but it is understandably a real possibility for me; I am already addressing it with the help of my doctor.  Hoping that the strength I have inside will fight off the deep sadness I have been feeling lately.  


The thing of it is, I am honestly so blessed.  The joy that my family provides me is beyond what I could hope for!  I am grateful for every single one of them.  I look back on my day and I smile when I remember Reese’s extreme fuzzy bed head when she woke up from her nap.  I smile remembering Heath coming right up to my face to get my attention, pressing his nose up to mine repeating over and over again, “Mom! Mom! Mom!” I smile remembering my older three accomplishing goals they have set.  Mia dancing on stage in front of judges with a duck face and booty shakes.  On a side note, how is she my daughter?!!  And I smile when I think about my crazy boys wrestling and laughing contagiously from across the room.  And I smile thinking back on Steve slapping my butt and kissing me when he walks in from work.  I have a beautiful life.  I am grateful for each of my perfect people.  I ache with each memory of Hayes, but then a song comes on that reminds me of him or a picture pops up on my phone and I realize he is sending me a hug…a Hayes Hint.  One thing I can be sure of, my family loves me and they won’t let me disappear.  

Whenever I start to worry about Hayes, I lean on the belief that where he is, he is healthy and happy.  Tube free and cancer free. I like to imagine that Hayes is doing everything he would have loved to do.  Playing on a playground, using his little froggy legs to push their way up the ladder to the slide.  Chasing after bubbles, laughing with other kids.  Climbing on the backs of the angels.  And sometimes, when he misses us, he is able to look down at us and see that everything we are doing is in honor of him.  I feel like he is cheering me and all of us on. 


Just last week, I received a message from someone.  She lives in California and she wanted to honor Hayes by tying a green ribbon around the chain of the very swing Hayes so beautifully swung in 2 weeks before he passed.  When she sent me the video of the swing lightly swaying in the breeze I immediately broke down.  It felt like a message from Hayes.  Then when the little boy ran by in the background with the green shirt, I was sure.  Hayes was telling us that he is doing great.  It came right when I needed it.  Hayes won’t let me disappear either!

That is the beauty of family.  You have a mini army fighting for you every step of the way.  There is nothing I won’t do for them and I feel the same from them.  I feel like we all take our turn at the bottom.  We let each other feel what needs to be felt without fearing those emotions, but when needed we step in and pull each other up.  That is love.


Until this wave passes over, I will continue to share my story.  I will continue to share my experiences.  There are those that need to know that they aren’t alone in their emotions.  Because of this, I hope to continue to transparently shed a light on our journey.

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What We Wore: Family Photos

Is there anything more annoyingly stressful than choosing out outfits for a family photo shoot?  It is so unimportant, but I care!  I have been able to come up with a little system in picking family outfits.  I usually have one person wear a busy, patterned outfit or stand out color, that is the first outfit I figure out.  Then I highlight with other colors from the pattern or that subtlety compliment.  I work around the pattern and do subtle textures and slight patterns from there.  Sounds easy enough, but gees…it sucks!  

I started out with my dress.  I mentioned it before, but I love this Target find!  It is so flattering on and I feel like it was the perfect springboard for the rest of the outfits.  

I am so happy with these photos. I was so nervous to take pictures without Hayes, but no doubt I will find a way to incorporate him forever!  The giant green balloon was the perfect representation of him for these pictures!  While there were hard moments, I felt Hayes close. Plus, if you look closely, in some pictures his little orb is ever present! Here is to conquering fears and seeing the beauty in the outcome!  Which one is your favorite?

My outfit

Dress /  Under Slip / Shoes


Steve’s Outfit

Top / Pants / Shoes


Bo’s Outfit

Top / Pants / Shoes


Mia’s Outfit – Old Navy Dress no longer available

Similar Dress / Similar Dress / Similar Dress   / Sandals


Wes’ Outfit

Linen Shirt / Shorts


Reese’s Outfit (similar romper below)

Denim Romper / White Skirt / shoes


Heath’s Outfit

Shirt / Shorts / Shoes


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Momcologist

Summer is coming, there is a warmth in the air and with it comes my wardrobe from the back of my closet. A wardrobe I haven’t seen since last summer. Last summer when I had all of my babies under my roof. Last week was really warm. So warm that I was able to pull out the gladiator sandals that I hadn’t worn for almost 12 months. In that moment, I was excited because summer is my favorite. I love the warmth of the sun shining on my skin and feeling the little beads of sweat building on the small of my back. Most of last summer was spent in the hospital with Hayes. Some days I didn’t even leave the surrounding walls of Hayes’ hospital room. I was constantly engulfed by the filtered, dry, cold air of the hospital for almost the entire summer. So sliding my feet into those sandals got me excited because now they would be able to step in the grass and not have to monotonously walk the white tiled floors of the cancer unit. I walked down the stairs with a little hop in my step, headed straight into the backyard and sat on the back patio steps that had already warmed up in from the sun. I looked down at my feet at my sandals and I noticed some white spots of something that had stained the leather of the sandals. In that moment, tears began to well. I knew exactly what it was. A sad momento from the previous summer. It was stained from one of the countless times Hayes had vomited up his milk. It had splashed on my shoes and now I had a constant reminder of Hayes. A sad little splatter of breast milk like graffiti that said “Hayes Was Here!” Cue the never ending tears! The odd thing is that as sad as it made me, I still haven’t washed them off.  


It got me thinking back on all of those symptoms that just became regular life. Symptoms that were just a part of my every day because my child had a brain tumor. Vomiting was one of the first signs that Hayes had a brain tumor. It was one of the many symptoms.
In the beginning, it was small. I began noticing that Hayes was irritable. For him, this was not normal. He was my happy baby and all of a sudden there was a switch. The only thing that would console him was sleep. He would have slept all day if I let him.  


The babies had all learned how to sit on their own around 8 months old. We had worked hard to build those muscles and they were getting stronger every day. But then, I began to notice that Hayes could no longer sit on his own. Within weeks, Hayes had lost his ability to sit on his own completely and then he could no longer lift his head during tummy time. I tried to make excuses. I blamed it on teething, ear infections, a cold…anything to excuse away the fear that was building in my gut.  
I remember one morning handing him a toy and he grabbed it with his right hand. For me this was odd because babies usually grab things with both hands. So, I moved the toy closer to his left hand and he reached across his body with his right hand, without moving his left hand at all to grab the toy. I had zero clue what this could mean but I knew it was a sign of something bad. Within those few weeks he no longer used his left side.

Hayes no longer doing tummy time
It was around this time that Hayes also began to throw up. I changed my diet, I switched to soy. I tried everything I could to settle his stomach. But it was in vain. Hayes would get a bottle and within minutes of finishing off the bottle, he would throw up the entire 8 ounces. Completely emptying his stomach. To be honest, at first it was a relief to me because I immediately came to the realization that he had a stomach bug. I was relieved because now I had a solid reason behind Hayes’ behavior. But then I wasn’t relieved. A week after the vomiting began, he could no longer hold down a drop. I was now panicking.
The last symptom that really set me off was when Steve and I were googling symptoms and all signs pointed to meningitis. The strangest sign of meningitis was the raised soft spot. The babies were napping at that time and Steve grabbed a flashlight, ran full speed up to the babies room. He quietly opened the door to their room and shined the flashlight on Heaths head first. His soft spot seemed slightly sunken. Then he walked over to Hayes’ crib, shined the light on his head revealing an unmistakable raised soft spot. I was so scared. If you google raised soft spot there are three really  frightening diagnosis’. Those are meningitis, hydrocephalus and the last possible diagnosis was a brain tumor. I was sure he didn’t have a brain tumor so I convinced myself he had hydrocephalus. 
I remember being scared but after reading up on shunts, I decided that out of the three possible sicknesses, hydrocephalus seemed the most treatable. We now see that my own diagnosis’ were wrong. A brain tumor could not have been farther away from my radar. But that is what he had. He had hydrocephalus but that was the result of the tumor. What a horrifying nightmare!  

As a mom of a brain tumor warrior, there are so many things I know I have in common with other warrior mother’s. We become momcologists. We are able to read our child’s symptoms and sometimes diagnose better than even the doctors themselves. We have reflexes that we didn’t ever use before…..vomit, the symptom that scares a regular mom to death. But, for warrior moms, our instincts kick in and we catch the throw up with our bare hands without batting an eye. We give our child shots, we flush their central lines, we place feeding tubes back through the nose, we change their dressings and we problem solve! All these abilities were qualities I never knew existed inside of me before. I am stronger than I knew. They are stagnant qualities that I feel every mom possesses, buried deep down until needed.
I guess that is why I haven’t washed off my sandals. I don’t want to say goodbye to a part of me that I am proud of. I still have an alarm that goes off on my phone every day that says “zofran”. I miss that feeling of having my baby rely on me wholeheartedly. I am so proud of the person I became during Hayes’ treatment. Although my life is arguably easier, I miss that fight. I miss giving Hayes his meds. I miss changing his feeding tube. I miss flushing his central line. It was the one time in my life that someone relied on me, 100%. I hope to teach my children that they are powerful, they are strong and they are fiercely loved by their mother. To all those moms out there fighting for their child. We see you!  You aren’t alone.  You have an army behind you! #hayesarmy

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Teen Love to Triplets, Part 3

After we had our first kiss, our relationship quickly morphed into one of those relationships that I had always made fun of. I was crazy about Steve. He made me laugh, he was confident, athletic and he was the best kisser! I couldn’t keep the butterflies at bay. Along with our love for making out was our equal love for the show Survivor. It all started 18 years ago when we would get together to watch our favorite reality TV show. Because of our friendship, we found excitement in the mundane and seemingly small things.  At this time Steve was trying to decide where he wanted to go to college. He was an amazingly talented football player that had played quarterback and was being recruited to play safety. He had offers from a few universities and was trying to make his decision. I had already made mine. I was going to Utah State. A school 2 hours north, in Logan, Utah. Although Steve had a scholarship offer from Utah State, I assumed he would go to the University of Utah and that we would be going our separate ways for college. I stayed out of his decisions for where he would go because this was his future and his possible future career. I didn’t want to sway him one way or another so I mostly listened to him as he expressed the pros and cons of each opportunity. The idea of going our separate ways gave me a pit in my stomach. I had known for a long time that my feelings for him were deeper than a typical high school relationship but I had zero desire to freak him out with my expressions of love, so I kept them to myself. I had never seen a high school relationship work out long term so I braced myself for our inevitable goodbye.

I remember one night in January of 2001, I drove my little, red, Ford Festiva up the winding streets to Steve’s house less than a mile from my own. It was a cold winter night and I rushed to his house. I only had an hour to spend with him because it was a school night so my parents liked me home by 9:30. I parked on the street and walked up to Steve’s front door. He opened the door before I even had a chance to knock. He was excited to see me and clearly had something to tell me. He welcomed me with a hug and as he wrapped me in his arms he said, “Guess what?! I am going to Utah State!” 
This may seem like a small thing, but it was a major turning point. We were going to college together. Our love story didn’t have to come to an unwanted end. All of a sudden a future with him was a real possibility and not only was I ecstatic but Steve was as well. We were falling, HARD, and I was letting myself embrace it. I had never planned on falling for someone while I was so young, but I couldn’t help it and I felt propelled toward my future with him. We went to dances, spent countless dates together and shared so much laughter. It really was sweet and beautiful and innocent. A relationship built on a solid friendship.
Oddly enough, I knew I loved him. I had loved him since we were juniors, but I never had the guts to tell him. I was so scared of losing our friendship so I quietly kept it to myself. The months went by and our friendship and relationship grew deeper with each passing day. Graduation was quickly approaching and I wanted to tell him before we graduated because now I knew I had to take the risk…he needed to know that I took him seriously.

I decided to be really mature and write him a long love note finally putting into words that I love him, in his yearbook. Yep, his yearbook. Because in high school, the yearbook is the ultimate sign of lasting love. As they say in the high school flick of our senior year, Can’t Hardly Wait, “The yearbook is memories frozen in time, people!” 

Steve and I exchanged yearbooks and I got to work on revealing my actual feelings. Putting it into words wasn’t hard. My feelings flowed. I had so many emotions that had been building for years. I knew exactly how I felt, the fear I had was letting him in on my feelings. Tonight, as I reminisced, I found his yearbook buried away in an old dusty box.  Reading what I wrote is actually super sweet. It stirs up those feelings of newness. I genuinely cared for him:

Dear Steve:

Well, there is no one place to begin. You are so amazing! I have so much appreciation for you and it grows every moment we spend together. There is not a second that passes by in the day that you aren’t foremost in my thoughts. Thinking about you helps me realize how worth the wait through our friendship was. I knew from the first time we talked that you were someone worth fighting for. I knew we had something special and the potential for an incredible friendship from the beginning. Our friendship has far surpassed my expectations. The thought of you in my future makes me happy and I can’t wait to see where Utah State takes us. The best is ahead of us, I am sure! There are times you look at me and I honestly melt. I know that sounds cliche, but you make me feel special without saying a word…it’s what you say in your eyes. You make me happy and because of that, I love to be around you! Thank you so much for your friendship. You have made high school the most memorable time of my life thus far. I know I am a wuss when it comes to telling you my feelings, but I am sure you know how I feel. I couldn’t hide it if I tried! I care for you more than I can put into words; I love you, I really do! Thank you for the memories, I can’t wait to experience life ahead with you.  

Love you always,

Savanna

Cheese ball central, but real. Love comes to anyone, at any age. That is the beautiful thing about love, it intertwines with everything we experience in life. It is the root of happiness, sadness, passion, and anger. Love is everywhere. What is amazing is that our love has grown exponentially with every moment and every experience we have had together. I believe that it is because of this base, this beginning, that we are where we are at now. He knows me at my best and he knows me at my worst. He accepts me and actually helps me feel appreciated through the weaknesses that I have. Can’t wait to see what is ahead! Here is to a lifetime of anniversaries ahead! I love you babe!

On a side note, for those interested in seeing the full story, KSL news did a story on us last night.  Best surprise ever.  I am thankful every moment for the love and support I get from Steve! Here is the link!

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Currently Loving Friday Faves

On some of my recent Instagram posts I have been asked about each of these.  So I am divulging some of my current faves in my closet and makeup drawer.  Guys, this is super random but for reals, I am obsessed with each of these! The truth is revealed, I am shallow on Fridays!  Here’s to the weekend! 🙌🏻🙌🏻🙌🏻

I used this back pack for my trip to D.C. It is made for a laptop but it has lots of compartments and the color is so dang cute.  So for those that asked, here is the bag/purse I used.


Laptop Back Pack

I am in love with these shoes.  Like beyond obsessed.  They are wedge sneakers and the fact that they are converse just makes me that much more in love with them. I have them in white too, they are that perfect!

Wedge Converse 

White Wedge Converse

Currently loving all of these!

Flowy Top

Black Overalls

Muscle Tank

I have also tried so many different mascaras, but this one is no question my favorite.

Mascara

I have used a lot of different self tanners and recently started using this because it is cheaper than the others. So far I am liking it.  Foam is essential for me and a good mitt is necessary as well.

Self Tanner

Tanning Mitt

I hope you all have a great weekend and a Happy Mother’s Day.  I think as random as this post is, it is a good indicator that I am trying to keep myself slightly distracted this weekend.  Not that it is necessarily going to be more difficult than any other weekend, because every day is hard.  But, having the label of “Mother’s Day” is a constant reminder.  Thank you all for reading through my mindless Friday posts. Happy weekend.

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Brain Tumor Awareness Month

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

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