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Please, More MAG
The room was silent except for the screech of wheels and a baby’s giggles. As Jessica unsteadily pushed the wheeled chair meant for the doctor, I smiled and looked at my mother, knowing her face would be lit up like mine.
Every day I am amazed by how far and how much my daughter has overcome. Within the first few weeks of her life, she was diagnosed with Ehlers-Danlos Syndrome, anemia, and failure to thrive. EDS is an unusual genetic disorder caused by a deficiency in the collagen proteins in the connective tissues. Babies who fail to thrive are usually below the weight and height of their peers, which can result in delays in sitting, rolling and walking.
Jessica’s anemia is the easiest of her diagnoses to understand; it is caused by an iron deficiency in the blood which can make the child lethargic. Luckily, it is easily treated with an iron supplement. Jessica’s doctors still don’t know if there is a greater problem that connects all these diagnoses. For one reason or another Jessica’s speech is also delayed, so she is learning American Sign Language.
Every day that I research or re-read her diagnoses, I cry for her, and selfishly, I cry for myself. It’s not easy leaving childhood behind to care for another. I don’t know whether I cry for the cards dealt me and Jessica, the pain I see Jessica experiencing, the loss of my childhood, or thousands of other reasons. Maybe I cry for everything lost. Still, I try to hold onto hope and put on a smile. I know how hard she works to fight her problems, for her pain is mine.
We sat in silence as we waited for the doctor. The plainness of the white-walled room was getting on my nerves. There was no sense of personality; in this room, you are just one of hundreds, nothing special unless you have some oddity that a doctor wouldn’t mind taking the time to study. Just the thought upset me, for that is the way I fear Jessica’s doctors see her: not as a child but an odd case that they can’t define. With all of Jessica’s appointments, I have a growing dislike for doctors.
I redirected my attention to Jessica, joy swelling in my heart. Only recently did my little girl start walking without support.
“Hey, Jessica, watch -” my mom warned, too late, as Jessica bumped into the wall.
Laughing, I stood and skipped to her, sweeping her up into my arms and tickling her. I brought her over to the examination table, the scent of antiseptic taunting my senses.
“Silly girl, bumping into walls. I think you need some driving lessons.”
“Isn’t she silly?” my mom asked, smiling at Jessica’s antics.
Shrill shrieks rent the air as Jessica giggled in delight. I looked down into her mischievous face as she swatted at me. I sat Jessica beside me on the table and, giggling, she turned on her belly to tear at the tissue sheet. Great ripping and crinkling sounds filled the room. She can be such a little terror.
“Jessica, that’s not nice,” I said. “The nurse won’t appreciate such a mess.” Sighing, I flipped my daughter over onto her back. Soft locks of hair fanned out to form a golden halo against the examining table. Still on her back, she started to kick wildly, catching me in the side as she laughed.
“Hey, that’s not nice. Please stop,” I demanded both verbally and in sign language.
Her legs came to a jerky stop, poised to kick more. As she looked up at me, pure innocence settled across her features. Bringing up her hands, she signed, “Please, more.”
Shocked, I gasped, “Did you see that? Did you?”
My mother smirked, amused by her granddaughter’s display of parental disregard. “Well, we knew she was extremely intelligent,” she said with a shrug and a smile.
“But we only taught her a few signs. We haven’t worked on putting them together,” I said. I was both amazed by her achievement, and indignant that she was such a smarty pants. “You want to kick me more? That’s not nice. No kicking allowed!” I told her.
There was a knock at the door.
“Come in,” I called. Picking up Jessica, I laid her in my mother’s arms. “Please hold her,” I requested. My mother settled Jessica in her lap and busied her with a Clifford book. -*
“Good morning,” Dr. T. greeted us. I tried to smile and managed pretty well.
“Good morning,” I said, forcing warmth into my voice. I sat at attention on the examining table, ready for the tirade of questions. The sturdy table’s ledge bit into the backs of my knees.
It has never been easy, not a single step of the way. In the beginning, I struggled with the adjustment of caring for another person. That’s not counting, before that, the uncertainty and shock I went through when I realized I was pregnant. Before I told my mother, no one knew except my dog, who was acting weirder and weirder around me. I remember the first time Jessica kicked, he was curled on my stomach. I’ve never seen a dog look more shocked.
After Jessica’s birth I couldn’t recall the first time I held her. A few months later, I had a vague memory of that special moment, for which I am thankful. I do remember that tears ran down my face unchecked, marking all the pain, sorrow, and joy of delivering my golden angel. There are moments in a person’s life when you can no longer deny what is real, no longer deny that someone needs you, that you do indeed have a greater purpose than your own selfish desires. That vague moment was a turning point, the moment when a small selfish part of me died and forever changed who I am.
The horror of spending more than two weeks in NICU, the baby form of ICU, can never be expressed. Still in a daze, I watched as feeding tubes were stuck down my child’s throat and IVs stuck in any vein the nurses could get to. I can’t begin to explain the anger that rolled through me whenever a nurse accidentally missed a vein and had to try again.
To make things worse, for every one of those agonizing days in NICU, Jessica was kept from her family. Jessica’s cousins, uncles, great-grandparents, aunt, and so many others were not allowed to meet her. Looking through a window just couldn’t compare to the
real thing. It was during her NICU stay that tests revealed her EDS, failure to thrive, and anemia.
These diagnoses have haunted me ever since. I had thought, with some naiveté, that with time it would all go away. How wrong I was! During the last two years I have screamed and yelled more times than I should have allowed myself. I rage at the unfairness of all the delays my child must overcome and the pain she suffers. I’ve yelled at God and asked, ‘‘What did I do so wrong that you must punish my child so harshly?”
As the doctor droned on, I glanced at Jessica as she flipped the book upside down, screeching because my mother wouldn’t let her rip it to shreds. At 21 months she weighed just 20 pounds. The EDS delayed her walking, motor skills, speech, and so much more. Jessica’s speech was at the level of an 11-month-old, hence the use of sign language.
The parade of medical appointments is enough to drive a person mad. There is physical therapy, occupational therapy, and speech appointments. But it is also during these times, when I watch her explore and learn, that I fall even deeper in love with this child who thinks I’m her world. My importance to her is a fact that I have always had trouble believing, and sometimes still do.
“Jessica, want to swing?” Multena, her physical therapist, asked a few weeks ago. Jessica smirked and raised an eyebrow, a quirky trait she got from me. “Destiny, please pick her up and put her on the swing.”
Jessica was being temperamental and kept shrieking at Multena every time she tried to pick her up. Jessica knew all too well that Multena meant work. Today we were working on her upper body strength, and Jessica had been resistant.
I strode over and picked up Jessica from where she sat trying to open a bag of toys.
“No, we only have 15 minutes left. You be good.” I couldn’t help but smile as I settled her onto the little swinging platform. Sunlight shone through the windows, making the room all the more cheery. Giggling, she flopped onto her belly. Multena reached over and set her in a sitting position, keeping the swing’s movement to a minimum.
Jessica wriggled out of Multena’s grip and slipped off the swing. Straightening on thin, wobbly legs, she started my way. Smiling and giggling, she launched herself at me and crawled into my lap.
“Well, she knows who her mama is,” Multena said, smiling at her escapee of a patient.
Tears sprang to my eyes at Multena’s comment. The tears blurred Jessica’s face as she wriggled in my lap. Then she brought a hand to my face, swiping at my long bangs. Comments like that give me hope and strength. It gives me reassurance that Jessica wants and needs me. Not someone else, me.
“Destiny, I think that’s all you need now. Pick up this prescription and check back in two months,” Dr. T. said, smiling.
“Yes, sure thing,” I said, happy that the appointment was over.
I held up Jessica’s jacket and she slipped her arms in. Walking to the parking lot, my mind returned to the signed exchange between Jessica and me. I smiled, remembering all the times she’d clung to me in the past and not wanted to go to the doctor or therapist. She didn’t know it, but they were giving her, my stubborn little girl, independence. Even though she’s proved she’ll always be a mama’s girl ... my girl.