This post is the first in a series of posts from my (Robin) upcoming book. Release date is early 2020.
This excerpt is from Chapter 6:
Kennady spent the six weeks in the Neonatal Intensive Care Unit (NICU) after she was born including Christmas, New Year’s Day, and the day the University of Texas played the BIG 12 Championship. (Those are big days in Austin, TX!) She had tubes hooked up everywhere. Machines were blinking stats to hospital staff. Nurses were walking around, and there were probably 30 other babies in cribs very close by. We had to wear gowns and face masks to protect the infants from potential illness. Fortunately, each bed had a rocking chair, so at least one parent could sit and rock their baby.
The NICU is not known for its homey atmosphere or welcoming décor. Unfortunately, it is either dark and cold or fluorescent bright white and cold. Either way, it is lousy lighting and chilly. We spent hours in those cold rooms feeding her a bottle, rocking her to sleep, singing songs, and introducing her to new friends and family one person at a time. Visitors had to put on a gown and a face mask and then scrub their hands for 3 minutes before winding through the cribs to see our little miracle.
Christmas morning, marked our thirtieth day in the NICU. Instead of sitting around a beautiful tree and opening gifts with extended family, Erica and I dressed Kennady as a little red elf. We sat around her hospital crib and thought of what life would be like when we left the hospital. We had ridden the roller coaster of emotion. Our daughter is born! What a miracle! She has a horrible diagnosis. She is recovering well! She looks different than healthy babies. We were up and down. Up and down.
One unforgettable day I was visiting with Kennady by her crib. At the foot of the bed was a clipboard of doctor notes. Back in 2001, it was typical to leave a chart at the crib so doctors and nurses on other shifts can stay apprised of the patient’s situation. However, on this day, my sideways glance caught the last line of the progress report. In the doctor’s hand, it read, the parents understand that there is no chance of their daughter having a meaningful life.
The bang of those words rang in my mind like a gavel strike. Judgment passed over my daughter’s entire life with a short yet sweeping sentence. I was utterly crushed and seconds later angry. I thought, My daughter has meant more to me in the last two days than you will ever mean to me. I was furious. The indifference! The audacity! Suddenly his credentials, his education, his years of training were meaningless to me, just as my daughter was meaningless to him.
For ten years, I thought about that moment at the crib and always wanted to go look up Kennady’s medical records to see if they reflect that statement still. I wanted proof. I had almost convinced myself that I misread it. Undoubtedly, the transcriber edited the comment to read more appropriately or medically correct. In fact, one time we mentioned it to our palliative care doctor and she could not believe that a doctor said that.
So, in early 2011, I went through the process of accessing Kennady’s records. They told me that it would take several weeks to get the documents and that I could come to the hospital to find the correct record. Kennady was in the hospital 42 days during that period. You can imagine how many pages of records that included. I finally received the call that the documents were ready, and I scheduled an appointment to review them.
Erica dropped me off at the front door of the hospital and waited outside for me to “run in and get them.” My emotions began to swell as I walked the same stark halls a decade before. I was nervous and excited all at the same time. The clerk took a few minutes and then returned with a large folder of documents. It was about four inches thick. Fortunately, the information I was looking for was close to the top. I turned the 6th page of records and saw this:
Tears fell down my face. I couldn’t believe it. There it was. First of all, the statement in the report was incorrect. Erica and I never expressed the understanding that our daughter’s life was meaningless. That is what seemed so disturbing. It was like they were saying we agreed with them. Wrong. False. Untrue.
At this point, I think it is important that I clarify a few things. The doctors and nurses did a phenomenal job physically caring for our daughter in the NICU. We are incredibly grateful for their hard work. We also do not feel like the doctor had a vendetta or was intentionally trying to be mean in his assessment of Kennady’s life. It merely was a clear sign that our doctor, like many others, was tangled in the entrapping lies of society that define meaning with skewed and perverted definitions.
I stood up from the table, slid the big stack of papers back, and asked the attendant to make a copy of that one piece of paper. I am sure that the rest of the documents contained valuable information about Kennady’s care; however, at this point, all that information seemed worthless. The attendant graciously made a copy, and I walked out of the office. I trekked back down the stark halls. I made it back to the mini-van at the hospital entrance. The three kids were in the van with Erica, laughing and talking and in their world. I got in the passenger door and just sat there. Erica said, “Well, what did you find?”
To which, I flatly replied, “It was there,” and then handed her the copy.
Erica and I often wondered what our daughter would have to accomplish before the doctor would deem her meaningful. If she could walk, would she cross the threshold of meaning? If she was able to form words or write sentences, would she be meaningful? Would she have a high market value if she were able to go to college or get married?
I would love to hear from you!
Please comment/respond to the questions below and be a part of the conversation.
Have you ever wrestled with someone else’s declaration over you?
How has that affected the way you live and see yourself?
How have you been successful at redefining yourself?
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