Chapter One – The Diagnosis
Hunter was different. He was a messy eater, slopping breast milk everywhere, leaving us both a sticky mess. He couldn’t grab on because he had very low tone in his mouth and cheek muscles. I figured he would grow out of it, or that he would learn to nurse if we persevered. Hhmm. I had to change tactics and nurse my breast with my hand and squirt the milk into Hunter’s mouth so he could get enough nutrients to thrive. It was hard to be discrete!
Because of his Traumatic birth, Hunter was followed up at the Medical University of South Carolina High Risk Clinic every four months. At his 8 month appointment I watched the doctor examine Hunter as she played with him on the exam table. She tried to get Hunter to sit up, but his head repeatedly fell forward, pulling his body with it. She caught him and put him on his stomach and encouraged him to crawl. He kicked his legs and moved his arms a little, but he stayed where he was. She encouraged him to roll over. He couldn’t do it. She put him on his back and encouraged him to roll onto his stomach, he failed. She played with his fingers to see if he could grasp hers.
“Mrs. Bonawitz, you can pick him up now. I’ll be right back,” she said, as she left the room.
I held Hunter and supported his head and bounced him gently in my arms and broke the silence with a goofy song. The doctor returned with another woman and they both looked grave as they came in the room. I felt like a ghost was sucking the air from my lungs.
Mrs. Bonawitz, has anyone mentioned anything about Hunter’s condition?” asked the doctor.
“No. Well just that he may be a little slower than other kids.”
“It’s just that I don’t see any improvement in his development from his last visit four months ago.” I didn’t know what to say as I stared at the doctor, waiting. The distress on the doctor’s face made me shiver.
“I’m afraid your son has cerebral palsy,” she said.
I sat paralyzed holding Hunter in my arms as panic and fear chipped away at my heart. I finally spoke in a shaky voice. “I don’t know what that is. I’ve heard of it, but I don’t know what it is,” I said.
“He suffered brain damage from the birth trauma and it has affected his motor skills, and probably his speech as well.”
“Are his lungs okay, his heart? His kidneys? How are all his organs functioning?” I asked frantically.
“Everything seems fine in that regard, Mrs. Bonawitz.” I’d forgotten about the other woman in the room who was there as back up and to support the diagnosis. They both were very empathetic. Hunter’s doctor gave me the name of a book she said may help.
Hunter and I left. I was shaking. On the freeway, tears blurred my vision and I could barely see the white stripes dividing the lanes. I’m surprised I made it home.
I put Hunter in his crib for a nap and walked into the kitchen. I slid down to the linoleum and cried and cried. Grief overtook me like never before. It felt as if my organs were malfunctioning; I was breathing with my heart and I suffocated. I don’t know how long I stayed like that, but when I woke up in the fetal position in a pond of tears, with stinging eyes and a burning throat, I stood up, brushed away the trail of dry salt on my face, took a deep breath, shook my arms like I used to do on the pool starting block before a race, and made a phone call.
“Mom, hi, it’s me.”
“Hi, Toad, how’s it going?” she replied. I didn’t know how else to tell her, so I just blurted it out.
“Mom, Hunter was just diagnosed with cerebral palsy.” Silence. “Mom, are you there?”
“Yeah, I’m here. I’m sorry to hear that. Everything will be okay, do you hear me?”
“Mom, he’ll probably never walk, or talk, or do any of the things normal people do.”
“Let’s wait and see. He’s still so young,” she said. “Where’s Lee (my husband)?”
“He’s at sea for another six weeks. I’ll tell him in person when he gets back.”
“Is there anything I can do in the meantime?”
“No, I’ll have to deal with it.” We hung up and I lifted Hunter from his crib and drove to pick up Remington from pre-school.
Never in my life thus far had I felt so heavy of heart. I’d hit the bottom of the black hole. But I’m actually glad I did. I needed to be that low in order to climb back out. The difficult part was figuring out how to climb out so my heart would lift from this burdensome weight in order to be a good mother to this special child and maintain my own happiness in the process. The next post will describe this process.
To be continued . . .