She said a lot of swear words. Many found this trait offensive, but I did not live in that camp. I thought, “Hey, she’s battling for her life. What’s a swear word or two?” But she swore like a sailor and she was only seven.
She wandered the halls on her own, dragging her IV pole around with her. She’d stop at each room to see who could entertain her for a moment or two. Sometimes she’d get bored quickly. Sometimes she wasn’t welcome. Sometimes she was too tired to give a crap. So, she’d move on to the next thing to take her mind off the disease that was quickly killing her.
Her parents had many other children at home. Some say it was as many as 10. I know that the mom was pregnant when we first moved into Children’s Hospital, as I was, too. It was our initial bond. How will we have the energy to care for a baby and a critically sick child? But this mom had many other children at home. I did not. All I had at home was a dog and two cats, which we promptly gave away to Matt’s family upon Ben’s diagnosis. I couldn’t imagine having anything else needing my attention. I was in awe that this mom had so much on her plate. But, I quickly learned that she was rarely around the hospital. Her attention was divided into so many pieces that it seemed like she only came to the hospital for respite from everything else pulling at her.
There were many children like this… many kids who sat in rooms alone or hung out at the nurses station because their parents had to work. Or they only had one parent. Or some other painful issue. One parent was just sixteen. Her infant had cancer. She would sit in the family room with me at the hospital and talk and talk and talk. She had no one else. Her parents were done with her. Her boyfriend was long gone. She had no job. No insurance. And soon, she would have no baby. How do you start over from that at such a young age? She had to grow up so very fast.
Anyway, that February day that Ben ended up in the ER just before being diagnosed was the last day I ever truly worked. As I was walking out of my building, somehow I knew that I’d never be back as an employee. I was lucky to have that luxury. Matt continued to work and I was able to focus on Ben and the impending arrival of baby-yet-to-be-named. If I wasn’t at the hospital, then Matt was or my mom was or Aunt Patty was. Someone was always with Ben. Always. He never had to endure chemo alone. He never had to wake up without someone by his side. He never had to hold his own emesis basin as he threw up. It was hard to not be mom to all those lonely and hurting and terrified children who didn’t have the same privilege of having someone with them all the time.
So, when the sailor came around, I’d let her come in unless Ben wasn’t doing well. Once Madeline was born, she liked to visit often. Her face lit up at the sight of my baby. She’d always tell me about the baby her mom just had but rarely got to see. Madeline was breastfed so she was able to stay with us all the time at the hospital. My little sailor’s new sibling rarely made an appearance. She must have felt like she was an outsider. She was trapped in the hospital as everyone’s life went on around her.
And somehow, she knew she wouldn’t live much longer. She didn’t say it in a negative manner, nothing like “everyone’s just waiting for me to die,” she just understood that her time was limited. It was almost as if it was a relief for her. Her neuroblastoma never gave her a break. She didn’t respond well to treatment. She consistently relapsed. She just knew that she wouldn’t be a long-time-on-earth kind of kid.
And the last conversation I had with her mom was about faith. I was standing in the doorway of their room while Ben slept and a nurse carried Madeline around the halls. The nurses just loved taking turns carting Madeline around the floor. She was such a precious baby and brought so much joy to everyone. I had a little time to myself so I went down to see my sailor. She was under the covers but at the very bottom of her bed. I could see just a small tuft of newly forming hair poking out from under the covers. Mom was in a rocking chair trying to soothe her anxiety. She was rocking really hard. I could feel the tension in the room and within moments of arriving, my little sailor jumped up screaming in pain, shouting some swears, and crying. The morphine was administered and she drifted back to wherever little kids go when they’re trying to avoid their very real hell. Mom went back to rocking, the shell shock so very apparent. I stood in the doorway and listened to her trembling voice explaining that she had faith. She had a good idea of how this was going to turn out for her daughter, but she fully believed that it was God’s plan.
I didn’t know what to say. And as her daughter shot up out of bed in tremendous pain less than ten minutes from her last dose of morphine, I had a pretty good idea of how it was going to turn out, too. So, I listened to her Mom in between the fear-invoking moments of listening to neuroblastoma killing her child. She was scared but, somehow, she felt safe.
That was the last time I saw them. My sailor died sometime during the night and they moved out before the new day dawned. I sat on the tiny toilet in Ben’s bathroom silently crying and swearing for my little sailor and wondering what the meaning of this “plan” could possibly be. I still don’t know. My heart still hurts. And, yes. I’m terrified that this is the same plan that God has in store for my Ben. I feel so broken. So helpless. So scared. This all sucks so bad.
And I think that’s worthy of a few swears.
Words can be a great comfort or distraction to be used as needed. Say as many as you need to in whatever form is necessary. ❤
I’d say more than a few are in order . As I read some of your blogs I often wonder if the plan behind this is to teach the rest of of something. If you and your family are somehow giving life lessons/or even comfort to those of us who read your blogs. Somehow you are making people better people know that, or at least stirring our thoughts and hearts
Your brilliant! You shine! Your gift of words carry so many of our own feelings within them. Thank You for speaking from your heart and from ours…..
From our corner to your corner….tight understanding hugs, warm love, healing light and Prayers. And more Prayers.
Funny how certain children always remain in your heart for whatever the specific reason. Talk about a kid wise beyond her years…and SO articulate! In her honor & memory think – I express on her behalf FOUR symbols worthy of your little sailor and ask you interpret accordingly #%&*!!!!
Let ’em FLY!!!
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