Be flexible. Be present. Lean into, or dare I say, “Embrace the uncertainty?" Face the scary unknown that lurks. Lurks for years, months, days, or even hours away. Minutes. Shock slowly bleeds and seeps into a place of rage. Anger. Acceptance or a calm surrender emerges. A resignation perhaps. Or maybe the wrestling of optimism. Trying to pin flames down that hop and flick. A sense of helplessness. A weighted blanket that smothers. Hopelessness. Despair.
I put on my headphones. Muffling out the clanging of weights. Trying to pull myself up and out of the pit. The abyss. Trying to channel the emotions of the music. Trying to get my body to move. Trying to think straight. My functioning has been like wading through a thick heavy fog with 25 pounds weights strapped to each foot. The music blares, “I get knocked down, but I get up again. No one’s ever going to keep me down.” Where is my fight? “Bounce back.” Bounce back? I’ve never been knocked down so hard.
The mornings. Ugh. Getting out of bed. It feels like I’m smothered by the heaviness of scans, blood work, and The Lump. Get up. I have to get up. I just want to sleep. Pull the covers over my head and block everything out. Escape the IV beeping. Wailing chirps because the nurse has not changed the bag yet. Push away the cancer that rages through my son’s body. The chemo consuming him. Emaciating him and robbing him of thick red curls. Eyebrows gone. All his hair is gone. I keep his locks in a bag. Locks I scavenged after he and his "Lost Boy" friends shaved all of it off. He had to shave it. It was just falling out. Being blown away while driving with the window down. The red strands being whisked out of the window. Robbed.
I feel a shake. “Momma?” My eyes open and focus. My brain tries to comprehend the bald headed boy standing over me. “Momma!” Sitting up I hear his panicked voice. “I have a fever. We have to go to the ER!” I’m stumbling. My brain is awake, but my body has not caught up to the desperation to find clothes. Jacket. Keys. Thermometer. Fever. Driving. Pushing the speedometer while talking to the doctor. This is something the doctors drilled into us. If he has a fever it can be life threatening. It is imperative we get him to the ER.
ER doors slide open, but not fast enough. Go quicker! Hurry. This is an emergency! Bryson is admitted. It's a temporary relief. We see the doctor and I know they will send us to UVA. It’s 3 in the morning. No one else is awake. Bryson has drifted asleep. I've texted family and I know my texts are something they will wake up to. I’m desperate to process this. To be held. To be comforted. The door opens and medics come in. They careful navigate the gurney down the hall and in front of the ambulance. My stomach starts to twist and heave. Bryson is loaded onto the ambulance and he flashes me a look. Can you come with me? The medic answers him with a slow head shake. I almost vomit. The doors close. Clunk. Clunk.
My mind is spinning faster than the tires gripping the road. It just showed up one summer morning. The lump. On the right side of his neck. “You need to get that checked out” commanded my father as he hands my children over into my care after a weekend. Yes. His neck. His lymph node was swollen. It was visible. I take him to the doctor. His body is examined. He’s tested for COVID. Strep. Blood work. We answer questions. Yes. I have a wild boy who puts frogs in his mouth for a giggle, jumps off of things, and pushes the limits. A teenage boy who thrives on having as much fun as possible and making his friends laugh. He’s the center. The sun of his friendships. His warmth spreads and is so infectious.
It’s nothing serious. He got a bug from the frog. But, the lump never goes away. He calls me. Something is wrong. He isn’t feeling good. I drive an hour to get him. He's with his friend's at a lake house. It's a Sunday. I know something is wrong and take him to another doctor. More tests. COVID, Strep. And now, mono. And that’s what the doctor tells us he has. Mono. But "it looks like he is getting over it." A month later, The Lump is getting bigger and bulges. It's the size of a golf ball. I take him back to the doctor. I tell the same story. He's tired. Physically tired. This has gotten worse. The doctor listens. He has a worried look on his face as he scans through all of the tests we have already gone through. We can't test him for anything else. Cat scratch fever. COVID. Strep. Mono. He examines The Lump again and his brow furrows. I hear a faint concerned hmmm. The doctor looks at me and back to the tests. The terror starts to set in. The doctor is slower in his speech. More contemplative in his thoughts. And steps outside. He returns with a referral and an appointment that has already been made to an ENT and it’s urgent. Next week. Tuesday morning. "It is urgent." Three doctors. Three doctors. Three fucking doctors.
Another waiting room. Another doctor. It’s November and the leaves that are left are vibrant and rusty shades of red and orange. I sit. Watching. Observing the ENT's eyes. Facial expressions. He makes small talk and connects with Bryson. Another runner. He has boys Bryson's age. I examine the ENT's eyes. They are concerned eyes. He gently feels Bryson's neck and around his jaw. Under his jaw. Pausing again on The Lump. "It has to come out." Next week come out.
I am waiting with my dad in the hospital. Waiting. The surgery went longer and tears are welling up along the white rimmed lashes of my daddy's bloodshot eyes. He can’t stop wiping away tears. He says he’s sorry. I shake my head at him and smile. I snuggle closer. I get a text that he's out of surgery and I go back to meet with the doctor with Bryson's dad. It’s cancer. More lymph nodes were removed. We don’t know what kind of cancer or what stage. Cancer. When I approach my father and sit down. I nod and take his hand. I have to utter those words. Utter those words to my father. A cancer survivor. Who lost his mother to lymphoma. "It's cancer."
Scans. IV's, blood work. These have all become routine. I got lost the first time I went up to the pediatric floor. I walked into the pediatric ICU. The cribs. The babies. The IV's and monitors. I was in the wrong place. Horror washed over me. I never knew this place existed. I mean I did, but to walk through and see the worried parents, doctors, and babies. Precious babies. To hear them cry. That was a reality that pummeled me. The tears started streaming soaking my COVID mask and someone stopped and asked if I was ok. "I think I am in the wrong place," I murmured. The nurse directed me to wing Bryson was on.
When you see a seven year old bald child, it stops you. They are standing in their PJ's. Holding a teddy bears and with the other had holding the shirt of their parent. Hooked up to IV's and you know they have a port. Just like your son. I crawl into the hospital bed with Bryson. We have sweet moments together watching movies and playing games. We have spiritual and gut wrenching conversations. When he falls asleep with his head on my shoulder I want to stay here with him. Let him keep dreaming. Keep him away from the reality of lumbar punctures and waves of nausea. He is woken up to check his vitals. Heart rate. Blood pressure. Temperature. This is our new norm. The hospital bracelets. Weight checks. Food passes to the cafeteria. Pushing food onto him. Trying to get him to eat. Holding the trash can when he vomits. Normal.
It is interesting who shows up. Who calls. Sends food or a card. People I never expected or had ever met. And then, the people you expected to show up. The one's you needed. Then hoped they would show up to support or comfort you. And they never do. It is a weird blur of the twilight zone layered with disappointment, hurt, surprise, and appreciation. The people that ask about Bryson. It stands out. All of his friends wrote letters, cards, and sent care packages of candy and his favorite snacks. Lot's of sweet tea. Those "Lost Boys" are tender and sweet. They play games with Bryson online and understand when he gets tired or when a nurse or doctor enters the room. He is so loved.
Bryson's last treatment ends. The last chemo. The last lumbar puncture. The last breathing treatment to protect his lungs and immune system. It is a count down. He takes a shower and rolls on deodorant. The port is still in. I can see the bump beneath his skin. It stays in. Just in case. When that comes out, I will exhale. He dresses and sits on the hospital bed. He is nervous. He has been practicing ringing the bell. Shaking his hand back and forth. Asking me if what he has planned is ok. If he will do it right. He does not know what to expect. This is a road we have not walked down. Like first tracks on powdered snow. The bell. A milestone. A finish line. They are ready for him. His father exits the room and Bryson pauses. He looks back at me and I reassure him he is ready. It's ok. He looks around the room. Checking to make sure we have not left anything. He steps forward. I follow him into a crowd of people. Confetti drifts down around him and he stops in front of the bell and gives it a sharp bang. Bang. Bang. Bang. That precious sound is chased by applause and shouts. Tears. He steps back and grins. He feels so awkward. There is a silence and he fills it. The gawky teen thanks everyone for taking care of him. People rush to hug him. High five. fist bump. What shocked me was the bell was so close. Only a few feet from his room. I had walked passed it and never noticed it. And, there is was. All along. Like the room of requirement in Harry Potter. It was there when you needed it. Bryson rang the bell. Three days before his 16th birthday.
Comments