When you have a child with cancer, it's easy to let it define you. It's almost second nature to use the disease as an excuse for not meeting your own potential, to allow clinic visits, chemo treatments and at-home medications to replace the goals you used to work toward. Life tends to wrap itself around cancer. Though this may be understandable, it is not a wise way to live. After all, Leukemia is temporary. There will come a time, Lord willing, when this is all a memory, and we will be left with the versions of ourselves that we have either built or neglected.
I think that many parents of sick children struggle to this conclusion. It wasn't instantaneous for me, anyway. When Steven and I learned of Natalie's diagnosis, the earth stood still for a moment and then began to spin out of control. Within a few hours life as we knew it was gone. One day I was a journalist and a sergeant in the National Guard, and the next I was a stay-at-home mom caring for my sick toddler. It was a whirlwind, and I felt so many of my dreams and goals crumble around me. I was suddenly a cancer mom.
Then one day it hit meāI could take this diagnosis and design my existence around it, or I could include it in a life that is different, but no less fulfilling than the one I had planned.
I decided this on a particularly rough day, one of the hardest of my life thus far. It was a warm fall afternoon, and my daughter and I were busily preparing for Christmas (we decorate for Christmas in early November, because the Kuykendalls don't take the season lightly). Natalie and I were making decorations in the den when her little voice piped up, asking to go to the park.
Because she was about to get sick from an intense phase of treatment, I agreed. I don't like to keep her indoors in such beautiful weather, and her immunity levels weren't dire, so I dashed around the house getting ready to go while she wriggled in excitement at the foot of the stairs.
When we pulled into the playground parking lot I noticed more cars than normal, which made me nervous. School children often mean viruses, and a virus spells hospitalization for a cancer kid.
"Sweetie, why don't we go to another park? There are a lot of people here."
"Just 5 minutes Mommy, pwease?"
Reluctantly I wheeled into a space and shifted to park. Little Natalie's face glowed as I unbuckled her car seat. "Mommy, my sisters are here! I wuv my sisters," she said, wiggling about and hopping out of the car as soon as she was free.
I sighed. Natalie called every little girl she saw "her sister," and she usually chased them around hoping to play. It never failed hurt me, seeing her try so hard to make friends, and every episode made my heart a little harder. To see my little girl struggle to keep up with healthy kids is something I hadn't yet become accustomed to.
We had been swinging for a few minutes when I spotted her: a girl around Natalie's age, wearing a dress from "Tangled," one of my baby's favorite films. I closed my eyes, dreading what I knew was coming.
"Mommy! Rapunzel! It's Rapunzel!" Natalie squealed, eyes shining and head craning to see around me. "That's my sister, I want to go pway wif her." She held up her little arms with an excited smile. Slowly I extracted her from her swing and set her on the ground. I collected her dolls, which always accompany us to the park, and followed her as she ran off to play with "Rapunzel."
Natalie's version of a run is a little different these days, with her weakened legs and lack of energy, and her hair is almost gone. It is a source of pride for me that my girl takes these changes in stride. She never complains. She never asks for anything different. She accepts that this is her life, she deals with it, and she looks forward to surprises, pizza nights, and the occasional milkshake run.
My girl doesn't notice the changes that have happened to her, but other children do. So when she ran up to that little girl in the princess dress, the girl took one look at her and ran off.
Natalie looked so hurt. I make it a point not to cry in front of her, so I was happy that my sunglasses hid the tears that welled up in my eyes as I watched Natalie run on her wobbly legs after the girl, so sure that she would soon have a playmate. The little girl didn't stop running away. Every time Natalie approached her she would take off, looking at my sweet child like she was an alien from outer space.
Natalie was persistent, but after a while I stopped her.
"Sweetie, why don't we go swing some more? I think your babies want to swing."
Her little lip quivered as she looked around me at the girl who wouldn't accept her.
"But I want to play wif 'Punzel."
"I don't think she feels like playing right now, sweetheart."
It was a lie and Natalie knew it, but she let me lead her away to the swingset. It lasted only a few minutes before the girl and her giggling group of friends caught her attention again.
"Mommy, Rapunzel wants to pway wif me now."
I sighed. I didn't want to see her get hurt, but I was proud of her perseverance and positive attitude. I let her run off again. It was worse this time, because all four of the little girls grouped together and stared at her before they told her she couldn't slide with them. Every time she tried to join them they ran away. She would stand alone for a moment, confused at their collective exclusion, then she would try againĀ while I ached from her loneliness. At one point she burst into tears and they crowded around her, staring, before sauntering off, leaving her alone in her misery.
One of the moms came over to me and attempted small talk, but not a single one of them said a word to their daughters. I didn't understand that. Why would you teach your children that it's ok to be cruel to another child? This was aĀ sharp reminder of the importance of living as I want my girl to live, of always carefully setting the example I want her to follow, in word and action.
Finally Natalie came running over, sobbing because one of the group had shoved her to the ground.
"If someone pushes you, push them back, baby," I told her, but she hugged my leg and bawled as only a heartbroken child can. I scooped her up and took her to the car. As we left, she waved at the group of girls. They didn't wave back. I silently sobbed as we drove away.
Things got better later in the day. I let Natalie pick out a My Little Pony surprise at the store, and we binged on junk food and TV after we got home. We talked to Daddy on the phone, put together a puzzle, and Natalie told me all about Santa Claus. Santa was a big deal in the Kuykendall house this year, and we talked about him quite a bit.
This episode may not seem important to other people, but to her it was a miserable experience that she didn't soon forget. Because it was a big deal to her, it was a big deal to me, too. That's parenthood in a nutshell.
I read a quote that night, attributed to Josh Shipp, that was shockingly appropriate to the events of the day.
"You either get bitter or you get better, it's that simple," it read. "You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you."
Then and there I decided that cancer and the troubles that come with it wouldn't define me, and they wouldn't define my daughter. Leukemia is a problem that will pass. What we learn and the habits we form during the struggle are the only things that will last.
I thanked God for sending that quote to me that day. It is amazing how perfect his timing is, how he turned a heartbreak into a lesson that will give fruit for the rest of my life.
Things have improved a great deal for Natalie since that day at the park. Steven and I bought our first home and have wonderful new neighbors who have two little children. After months of isolation, Natalie now has friends. It heals my heart to hear her laughing and running with playmates, to see her in company instead of standing alone, wishing she could join in the play of others. We have been richly blessed.
So we keep going. Natalie's struggles are far from over, and I have no doubt the heartbreak of a mother will find me many times more, but I am a bit more prepared, and a bit more at peace than I was before. Blessings laced with pain. Life is very good.
