Saturday, May 9, 2015

'Mommy, would you stop a bullet for me?'

"Mommy would you stop a bullet for me?" My younger daughter wanted to know whether a mother's love was strong enough to put herself in the the path of a bullet to save their child. I know that reaction can only be instinctive rather than planned so I found it difficult to answer her honestly.
Three years ago a doctor explained to us that my daughter's condition and pain could only be treated by surgery. Normally, this would not be daunting considering the number of surgeries that are performed every day but this was my daughter and the surgery was on her brain. Moreover there could be no guarantee that the surgery would be 100% successful, nor could they tell for certain the impact of the surgery on her physical and mental abilities after they were done. In fact they could not tell how many of these surgeries they needed to perform to get the job done.
Those were the hard facts I had to consider and make a decision on her behalf because she was a minor. Her father was sure about his decision: No one was to touch his daughter's brain, but he was far away in Africa and I was in the Walt Disney Children's Hospital in Orlando, Florida and I was the one who would either sign the consent forms or decline the surgery. Joannah also had made up her mind, she wanted the surgery. It was her condition and she was the one suffering from multiple seizures sometimes up to ten times a day and she had had enough of it and did not care what happened after the surgery, she just had to have it. But then again, she was a minor and did not have to sign the consent forms so it came down to me.
I thought and prayed and consulted and thought and the doctors reminded me that there was a long waiting list and I needed to make up my mind soon. Finally, I agreed and we joined the waiting list and waited a long three months for the day August 27, 2012. And as sure as day turns to night, the day arrived. I took my annual leave got on a plane and had over 23 hours of flight time and lay overs to Orlando, enough time to think about what had now become inevitable. When the consent forms were presented to me the choice was crystal clear: I had no choice if my daughter was to have the semblance of a normal life and she deserved a normal life like mine and other kids her age, so I signed the forms.
They asked if she wanted her whole head shaved or just the part they needed. Vanity prevailed and she opted for the latter. They explained that the procedure would take about 8 hours. They would shave part of her head and cut a circle through her scalp. The circle would be removed just like the lid of a jar and placed aside as they placed sensors on parts of her brain to determine the exact places where the seizures were triggered. With the sensors now placed on her brain and connected to wires that transmitted messages to a screen that would monitor her seizures for a couple of days; they would place the lid back over her brain and bring her to me in the ward where she would be watched, nursed and monitored. Then they would take her back in for another 8 hours to remove the wires and cut out those parts of the brain tissue that were triggers for the seizures.
I remained strong for her as they talked us through the procedures. I listened in disbelief, in awe of what science could do and in the worst possible fear of what could go wrong. Was I playing God with my daughter's life? How could I have signed those forms? They rolled her away from me on a hospital bed, the theatre doors closed behind her and finally I was alone and could cry my heart out. 8 hours is a long time and I could only cry for some of those hours. In the third hour I knew if I stayed any longer in the waiting room, I would go crazy so I decided to do something crazier: the laundry! I went to the ward, picked our laundry and went to my brother's house in Lake Mary to do laundry and pretend that this was another ordinary day. At the 8th hour I was back in the waiting room with no more tears to cry, I waited quietly for the doctor to emerge. They called me into another room and my legs turned to jelly but still I remained silent. The neurosurgeon walked in with a smile and said everything had gone well. They brought her back to me awake but groggy, with her face swollen and her head looked like a football. This time I could not stop the tears from running in her presence.
The two days past as slowly as two months could and I alternated between being strong and weak for Joannah. And at one time when I cried and put my arms around her weak body she spoke to me: 'Mommy, everything happens for a reason. Don't be sad!' I broke down and bawled even harder. She remained stronger than me throughout the ordeal. They took her back for 8 hours and came back with the news that they had found more trigger centers than anticipated so they had to staple back her scalp with those sensors and wires still inside to do some more monitoring. Two more days of agony and she was back in surgery for another 8 hours and this time they brought her back to me with no wires but with parts of her brain cut out. The worst was over and the nurse showed me pictures of my daughter's brain in full color.
She was in pain but she remained strong and this gave me strength. They discharged us and we went back home to my brother's house to wait and see if she was all healed. The neurologist warned me that this was unlikely because I objected to the removal of that part of the brain that controlled speech and if removed she may not have been able to speak again. I was ready for almost anything except for not hearing Joannah call me 'Mommy,' again.
So Hannah asks: 'Mommy, would you stop a bullet for me?'

At 50 I know that I do not know that I could stop a bullet for my child but for me the real challenge has not been to decide whether to take a bullet in my child's place but to suffer through situations when you cannot take your child's pain and can only 

stand by and watch and pray

— feeling challenged.

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