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.
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