I am like a buoy in the middle of vast, deep ocean, constantly moving back and forth. When the breezes are slight, I bobble around gently. When the storms ensue, I am violently thrown around from side to side, gasping for air, dragged down and pulled back up, but never allowed to fully drown.
I did not sleep! From 1 to 5 in the morning I was drowning!!! A very real part of me wishes I hadn't survived!
Sometimes, too much information is too much information, plain and simple. We live in the age of information. The Internet can be a blessing but it can just as easily be a curse. Tonight, it was my very own personal guillotine. Foolishly I decided to do some more research on DPIG. I found nothing but death!!!
I found a variety of research studies but the results were always the same. Then I discovered that I wasn't the only parent to have a blog documenting their experience. In blog after blog (almost 2 dozen) I read about amazing families and saw photos of their beautiful children, all whom had been devastated with this same horrific disease. I read their treatment protocols. It was like looking at a recipe; the same medications, the same dosages, the same patterns. With each blog, I spent time reading about how the family had come to find out. Some stories sounded familiar, others not. I'd stare at the beautiful, cherub face of their son/daughter. Then I'd inevitably scroll to the bottom of the page and find devastation, find death!!! Each story ended the same way!!!
My mind throbbed with unbelievable pain!!! I do not want to become another one of those families. I do not want some poor family in 1 year, 5 years, 10 years finding my blog, with my daughter's beautiful photos, and scrolling down to the bottom to find the most disastrous disaster of all. This cannot be my daughter's fate!! This cannot be my fate!!! This cannot not be my families fate!!!
At one point, I actually got up and started pacing around the living room. I had a wild idea. I paced the same 100 feet over and over and over and over again!! For more than a split second I actually contemplated packing up my clothes and Nina's, getting as much cash from the ATM as possible, and running away. No one would know where we'd gone, no one would ever see us again! It would just be Nina and me. We would just disappear.
I have always believed in God. From an early age my heart happily loved God. But it is now, living my very own personal hell on earth, that the reality of the loving Father of the universe has been fully made to me. In the wildest of spirals of despair, where the pain and agony was so deep that my very bones screamed an impossible scream, God's warm hand calmed down the storm that had taken over my mind. The panic ended and the grief ensued. I cried. God held me. I cried. God held me. I cried. God held me. In the darkness of my daughter's room, I cried silently and God held me silently.
I don't remember falling asleep but eventually I did.
Later that morning, I woke up to Nina's cries and Papa Gordy's melodic voice pleading with her. I didn't remember falling asleep. I didn't remember Nina getting out of bed. It was 9am. I heard Nina cry but it wasn't a cry of pain. It was a cry of anger. She was pissed off!!! How I loved hearing her pissed off!!! It made me smile. Then I heard my father in-law gently try to persuade Nina to change her course to no avail. It made me laugh. I got out of bed and this is the scene I discovered:
Nina was opening the sliding screen door to our back patio, determined to get out. Papa Gordy was delicately hoovering over her, trying to gently block her access to the outdoors. Nina was crying...not tears...just pissed off. Papa was totally overpowered by a tiny 5-year old girl :)
Papa: Nina honey, we can't go outside.
Nina: I want to go to the doctors.
Papa: Honey it's not time yet.
Nina: But I really want to go....it's fun.
Papa: Nina let's go back and watch a movie.
As I watched my willful 5 year old overpower her enormous grandfather, my heart swelled with pride. I had barely survived an invisible storm. If my precious daughter could fight, then I could! I could fight the storms from within. I could remain my daughter's steely mom.
I walked up to Nina and Papa and gently redirected her away from the door back to the living room. She yelled at me with pure fury. She was starving and had been asking for breakfast repeatedly. Papa had told her we had to wait for breakfast until after the doctor's appointment. Even in illness, the girl is brilliant. She figured out that if the key to food was the damn doctor's appointment, then she wanted to get there in a hurry! I love her soo much!!!
We eventually did get to the doctor's appointment. It was a later time than usual but Dr. Amador was back for a third time this week. Nina outlined that she expected french toast with syrup and bacon. As she was in treatment, I fetched the queen's request. I really hoped she'd recover well today. God knew I needed her to recover well.
I ran to IHOP in a jiff and returned to the Cancer Center in no time. I was feeling really good. I didn't know why but I did. I thought to myself, Whatever....I'll take feeling good even if there isn't a direct reason why! I was particularly pleased with myself at how quickly I had managed to race to and from IHOP. As I walked toward the center, my momentary high was literally knocked right out of me....I TRIPPED!
I somehow tripped over the sidewalk. I have no clue how I managed to do this but I did nonetheless. It was an intense trip and I flew across the sidewalk, literally landing on all fours. Of course there had to a ginormous crowd to witness my fall from french-toast heaven. I fell, my left shoe somehow disappeared and IHOP goodies were scattered across the sidewalk. What a joke!! If anyone expected to see me cry, then they were going to be seriously disappointed. I stood up and started laughing hysterically. My life had completely fallen to smithereens so it made perfect sense that I'd literally get knocked down to my knees intermittently. I searched for my shoe, which somehow flew off my foot and landed underneath the motor of the car. I put my shoe back on, collected my IHOP goodies, and grabbed whatever shred of dignity I had left and marched to the front door. The saddest part of this was that although there was a huge crowd around, no one came to help me. Diffusion of responsibility in action! The little old man at the Cancer Center parking table was horrified and tried to come to my rescue but I had collected myself before he'd even taken 10 steps. Distraught woman down...we stare. Humanity is great, isn't it??
Back inside the treatment center, God answered my prayer for a swift recovery with an Almighty, "YES!". Nina recovered extremely quickly. She ate her breakfast and requested Taco Bell for lunch. We've come to discover that if she requests a specific lunch then we are going to have a good day.
A good day we had. We went home, had a feast of Taco Bell. Nina had always loved T-Bell. She scarrfed down two crunchy tacos and some nachos. Her energy was up. She talked, she laughed, she smiled a lot more easily. It didn't require as much persistence on our part. My in-laws particularly cherished this. They beamed each time she giggled. Of course, Teddy took this newfound energy on her part as an invitation to step up is comedy routine. There were elaborate performances involving a myriad of bodily noises. Normally, I would discourage this kind of behavior but I was overcome by the sheer determination Teddy had to make his little sister happy. He was going to do whatever it took! I loved him for it, raunchy behavior and all.
In the later afternoon we were joined by Cami, Katie, and Ella, our neighbor friends. The kids all sat down with Nina on the mattress and watched Tom & Jerry cartoons. Nina always lights up when surrounded by friends. Our neighbors have all been incredible. I joked with the Vinealls some days ago about how we'd all become the "Traci Drive Commune". Our kids happily and freely go from one home to another, we share meals, caretake together, and outright love each other in every sense of "neighborly love"!
|Hanging out with friends!|
|Feed Me, Feed Me! Nina all clean after a bath. The object is the Port where the IV and sedatives are put in daily.|