Lioness
This morning while I changed my son's diaper, carefully cleaning the area beneath the foreskin, I was struck again by a sense of irony. I made the decision to not have him circumcised after the available research convinced me it was the right thing to do. I wanted to spare him the pain.
On his second day of life his blood sugars dropped and he had to have an IV inserted to pump him full of glucose and water. I looked at him in the neonatal intensive care crib and felt completely helpless. My best efforts to breastfeed him had failed, and now he had to endure the needle.
A day later his bilirubin levels went up. That meant daily sticks to his tiny, perfect heels for over a week. Every poke through his silky soft baby skin made my muscles tense.
When my daughter Melody was born, things were so different. I cried more than she did at her first set of immunizations. She entered the world with a smile on her face. In fact, I'm pretty sure she's grinning in one of her ultrasound photos!
For Daniel it was not to be. He cried with what we thought was colic, all day every day. He always seemed to be hurting. When he wasn't crying for unknown reasons, he wailed because of the lab sticks he was subjected to.
When he was labeled with microcephaly (small head = small brain), I was numb from trying to protect him and the rest of us from the pain. I thought I'd die myself if it turned out that he was as neurologically compromised as the doctors predicted.
I remember where I was when I felt the first nudge away from hopelessness. My dad and I were driving near my house when we were having our usual "I know he's going to be okay" pep talks to each other. I asked, almost in a whisper, "But what if he's not?" My dad answered, with simple compassion, "Then we'll love him even more."
When he voiced those words it helped me know that Daniel's disability was not the unthinkable, unlivable thing I'd been so afraid of. This little boy would need us in a big way, and we would rise to the occasion.
Since before his birth, I'd been deciding that I would do all in my power to make my son's life as painless as possible. I think it's instinctive for mothers to want to spare their children suffering. We're like the lioness protecting her baby cubs. Heaven help the predator who threatens them! We'd just as soon eat them as look at them.
I remember an incident that happened when Daniel was just fifteen months old. We were admitted into the hospital after he'd had several episodes of vomiting and losing consciousness. The doctor's first guess was that he was having gastrointestinal problems. He even underwent swallow tests. At our urging, a neuro consult was done. During an EEG the next day it was confirmed that he was having seizures
Once the diagnosis was made, the neuro ordered lab tests. I sat across from him in a chair in Daniel's room explaining how difficult it is to obtain blood from him. The learned doctor suggested that we would get all of the tests in one shot. I still felt uncomfortable.
The nurses took Daniel to a room reserved for such procedures, and the laboratory tech arrived with a basket of needles in hand. She began hunting for a vein. I explained to her the best place to start was his left antecubital space. She glared at me and said, "just let me look, okay?" My husband, who is an M.D., stood by as helplessly as I did while she tried to get blood from our baby.
I left as Daniel cried. I went to his room and into the bathroom to stare myself down in the mirror. I actually spoke out loud! "Carolyn, go back there and take control of this situation. Right now!"
I stormed into the lab room. "How many sticks has he had?!" I demanded. My husband took the wind out of my sails when he said, "We're going to get it through a heel stick." I mumbled an okay and then held Daniel while she worked.
This was much worse than the venipuncture probably would have been. The tech squeezed and scraped while my baby cried in agony. She then complained that I wasn't holding him tightly enough, so could someone else take him? (Looking back I realize how much my kahunas have grown since that morning. I'd never tolerate that now.)
When the entire ordeal was over, one of the nurses present explained that the technician thought that I was a staff member, thus the rudeness, because I was wearing scrubs. "No", I explained, "my son has vomited on every piece of clothing I have here, so the nurses gave me something else to wear."
We went back to the room exhausted. Another doctor arrived from the Intensive Care Unit to tell us that he was to be moved there. As she spoke, Daniel went into his first grand mal seizure. It was horrifying.
His entire body jerked and his face turned blue. Thank God he already had an IV infusing and his oxygen levels were being monitored. Daniel's father was starting to panic and wanted him intubated (a tube placed through his trachea so that he could breathe). The ICU doc and a roomful of nurses pumped him full of drugs, finally ending the seizure with a dose of Ativan twenty minutes into it.
From that point on I was no longer a cub. I grew up. I let everyone know that I believed the stress of the lab experience provoked the life-threatening seizure. One of the nurses laughed it off and actually said, "you think so? Na, we torture kids here all of the time." You better believe I went into lecture mode at that point. The guy obviously didn't know his stuff when it came to the effects of stress on an already stressed out body. I'd as soon eaten him as looked at him at that moment--smile.
Pain comes with the package. We're born into physical existence with no guarantees. Emotionally, physically and spiritually, sooner or later we all hurt. We can't escape it, if we're human, no matter how loud we roar. Whoever said, "The only way through it is through it," knew what they were talking about. It's something that we parents of kids with special needs learn very early on. We also learn to use our voices and roar when we need to.
No, I haven't been able to spare him all pain. I have, however, managed to minimize it whenever I can. I've turned down lab tests that I knew could wait until later or be grouped with others to avoid multiple needle sticks. I've insisted on having the best of the techs try to hit blood first rather than last. I've opened up my Lion Queen mouth and let a doctor or two know that their plans and mine were not in sync. And if my kahunas had been fully developed at the time of the seizure hospitilization, a heel stick would not have occurred. He'd have been given the chance to rehydrate and rest before ANY attempts at striking blood occurred. You live and learn.
My dad was right about the love Daniel would have in his life. It's a love that grows to meet challenges that most parents never have to face. It's a ferocious love, and it keeps us strong.
Written by Carolyn Murray
February 2003
