Do What You Can


When you hear the test results, see the x-ray, or learn the prognosis a numbness sets in. Unfortunately, I have found myself in this undesirable situation many times. “Do you have any questions?” the doctor inquired. Like an indignant child, I wanted to tightly close my eyes, stick my finger in my ears, and chant “I’m not listening. I’m not listening.” But the truth had a way of always finding me.


Dr. Edward Buckley reported that Grant’s optic nerves were severely damaged and he would need an immediate MRI. Dr. Herbert Fuchs stayed up all night reviewing the images trying to decide if my 4-month-old needed a shunt to be surgically placed in his brain to relive pressure. I can still hear his emotion filled voice through the phone telling me that he wanted to wait and perform another MRI in a few months. Once he operated, Grant would have to continue to have brain surgery for the rest of his life to extend the shunt as he grew, and this loving neurosurgeon wanted to be certain it was utterly necessary. He never needed that surgery.


As Grant’s pediatrician, Dr. Gordon Worley would become the captain to guide me through the dizzying maze of decisions. Dr. Worley specializes in Neurodevelopmental Disabilities, a sub-specialty of Pediatrics focusing on the management of the medical problems of children with physical disabilities. Short in stature, with white hair and glasses, he wore a perpetual genuine smile. He is one of those individuals where you have no idea his actual age, but his knowledge and expertise seem to transcend time. Never hurried, he would answer every question and propose the therapies that would help Grant learn to walk and talk. He was ethereal and peaceful. I realize in this very moment…I never thanked him for keeping me hopeful.


One appointment remains in a file marked “Life-changing” in my memory bank. Tears flowed as I whispered, “What kind of life is my son going to have?” Cheeks red with embarrassment and shame, I locked eyes with Dr. Worley. Perhaps he has given this response to thousands of parents, but I pretend that this was our miracle moment. “He will have an extraordinary life. It might not be the one that you had imagined, but it will be extraordinary.” Somehow this man could see beyond medical conditions, and witness the hearts and spirits that dwelled inside the precious children he treated. Experience had proven to Dr. Worley that every child has something to share, but sometimes even parents don’t take the time to look closely enough.


What is the one thing I wish I had done differently as a mother? LISTEN more intently to the pure honesty that emanated from the precious souls of my children. Even in the silence…they spoke to me. I didn’t want to face reality. It was far easier to pretend and allow the norms and societal standards to become the measurement for how I was performing as a parent. I lacked the courage to be one of those Lifetime Movie Moms that rises up and fights back. The actor that plays my part in the retelling of my story need only have the ability to perpetually cry and overeat on the daily. If I was such a total mess, how did I end up with two fantastic sons? With gratitude, I now recognize the individuals that had the ability to translate the words that I could not hear.


My diagnosis changed it all. Perfection and control fell by the wayside. Stumbling became acceptable. Understanding that I did not have the answers to every question, nor did I possess the qualities needed in many situations was more than okay. In case you missed it…I will say it again a bit slower… I LET GO. And guess what happened? Countless angels entered my world and rescued my children in ways I could not.