It’s 9:36pm on a Sunday night, ending probably the worst week of my life. Just a mere 1 week before we were a generally happy family unit with a new baby. Donovan Kylo is 5 months old and smiles and laughs for most of the day. His smile and energy lights up a room. It stops me dead in my tracks and I feel my facial muscles infectiously rising with his, no matter what I’m doing. Last month he rolled for the first time. This month he sat by himself for about 5-10 seconds with no help! His daddy loves him so much I can just see it in his face. Sometimes I just watch them together and it makes me the happiest person alive. Donovan is a tiny version of his dad in both looks and positive attitude. Everyday I notice something new about him that reminds me of Jason.
It was April 19th, while breast feeding my boy, I noticed his tummy looked pretty puffy. I felt around and noticed the right half was pretty hard and solid, while the left was soft and squishy. I couldn’t even feel his lower ribs from the right side of his abdomen. I immediately felt heat run up my face. I knew something wasn’t right. After securing a doctors appointment for the next day, I spent almost the entire night scouring the internet looking for possible reasons half of his belly could feel so hard. Every time I typed in “hard mass” or “lump” or “hard” anything in babies abdomen, cancer showed up tirelessly. I skimmed a few readings and decided that cancer was too crazy and far fetched to ever be right. Finally I concluded it must either be gas, a lateral hernia, or an enlarged liver. The next day (4/20) my entire world changed in the matter of one phone call. After an ultrasound earlier in the day, my doctor called to say my happy smiley baby boy has a mass on his liver that looks like hepatoblastoma. I yelled “that’s not malignant right?!” Desperately seeking comfort that he would be fine and it was nothing. She said yes it is. That’s when my mind collapsed into a whirlwind of emotion, questions, and catastrophic scenarios. Would he survive this? Why would God do this to such a happy boy?! Simultaneously feeling fear, anger, and both hopeless and hopefulness. Would we ever see our baby grow up or will that all be taken from us before he’s even able to say mommy and daddy for the first time? And why would this gift of his life be given to us just to be ripped away just as quickly?
We need our baby to know we love him, that we will fight for him until the end of the world and then we will fight some more. The nights are always the hardest. Watching him innocently sleep having no idea what is happening inside of his body. I watch like a hawk always checking if his chest is rising properly. My heart stops in between his breaths when I don’t feel anything. Every time. Then he inhales and makes a tiny sound and I’m reassured just for that moment.
