“How are you?”
The answers we give to this question reveal a lot. Of course, some answers are flippant and simply mean the words used. “I’m okay fine” can mean “fine”…if a man says it. (NOT if a woman says it.)
Some of my favorite responses are “Living the dream”, “Fighting the good fight” and “Surviving”. I’m thinking of those responses today as I sit and feel completely full and empty simultaneously. We spent the morning with people who were fighting the good fight…to survive and heal. We spent the day in the UNC hematology/oncology department.
Have you ever revisited a place from the past and felt a bit haunted? I haven’t set foot at UNC since The Conqueror was three weeks old. It was the day before Thanksgiving and the appointment was by far the worst we’ve ever experienced. Nearly two years later, I didn’t want to return. It felt eerily familiar to push the stroller along the tunnel and feel the breeze of the opening doors. I was thankful to be in a different department.
As I entered the hospital our first stop was…well, the restroom. It was a 1.5 hour drive! I pushed the stroller past a dozen adults. One had a notebook full of charts with a pink ribbon on the front. The next woman wore a scarf over her bare head. A few elderly men looked exhausted in their chairs. The faces of those truly enduring looked at me, a few smiling at my little one. New life brings hope. We all need more hope.
I finally spotted the Women’s Restroom sign under a much larger one that read “Cancer Center”. After a diaper change I started to push the stroller out of the door, which is always an awkward process. It caused me to pause long enough to hear something; a woman in a distant stall was quietly sobbing. You hear crying with your ears but you hear despair and suffering with your heart. It’s a sound you only recognize once you’ve heard it well from your own chest and through your trembling lips.
I paused for a moment wanting to reach out, but knowing better. We rolled on. It was a relief to get to the children’s wing. The bright colors, toys, refreshments and smiling faces brought out the smiles in us. The Conqueror quickly made friends.The waiting area’s toy room was full of fun kids, to include a 3 year old who also had Down Syndrome. Today was his final treatment for leukemia before the maintenance stage. I immediately clapped and celebrated; the boys both joined in. Fighting the good fight is a team effort. Celebrating should be too.
I’m pleased to report that our new doctor was fantastic. He was friendly, attentive, thorough and clearly adored my son. For the past year his blood platelet count has been low which is a concern.
Individuals with Down Syndrome often have an increased risk of Leukemia. Although The Conqueror does not show other symptoms of Leukemia or other potential illnesses, I’ve learned to be diligent and thorough.
The waiting room was full of smiles, toys, a few hairless heads and some tired parents. A refreshment area had treats and fountain drinks. I’m always floored by the amazing service at specialty hospitals. The dolls on display were not for playing house; they demonstrated ports and IV pieces. A little girl played with a puzzle while a blood transfusion slowly dripped into her arm’s IV. Her mother stood over her as mothers do, playing while standing guard. We smiled and gave each other knowing nods. College students in the UNC program came in to play with the kids. The CPALS laughed and spread joy all over the kids. The Conqueror was doted upon by a sweet blonde who will start nursing school next semester. The place had an upbeat and hopeful feeling which is truly remarkable.
As we moved onto our blood draws I considered these families surrounding me. I no longer feel pity or grief; I hated being the recipient of that when my baby was hooked up to IVs and monitors. No, spending a day with the kids, families and staff all fighting cancers feels much like spending a day with a large group of soldiers. There is a silence that screams what words can’t express. The experiences can’t be adequately described but you know when a battle buddy is in your ranks. T
Until you’ve fought the fight you can’t fully appreciate the sweetness of the victory. If there is anything I’ve learned from fighting alongside my Conqueror it is the power of faith and hope. By the time we reached home we were both exhausted but speech, dinner and a nighttime routine awaited. It was a typical day…the ordinary and extraordinary often arrive together. Now that jammies are on, teeth are brushed and the dishes are done I wonder if today’s exhaustion indicates surviving, fighting or living the dream. You know, I think the answer is all three. Fighting the good fight is living the dream.