Thursday, July 19, 2012

My second daughter, Abbey, was born with a cataract in her right eye. We did not discover it until she was just over four months old when a doctor, in passing during an appointment for my oldest daughter, said he wanted someone to look at her eye. She always squinted that eye, and I never thought much of it beyond that it was an infant practicing her facial muscles and just her cute little way of looking at you. But, it was her brain learning that if it didn’t use that eye, it could see a lot better. So, her brain was basically throwing the eye away b/c it didn’t work. Thankfully, this was not genetic. The doctor described it as getting hit with lightning and her left eye is pretty perfect. So, when she was five months old, her natural lens was surgically removed from that eye. She would outgrow any artificial lens implant, several times over before her late teenage years when her growth would slow down or stop. So, the plan was to use an artificial prosthesis (glasses or a contact lens) on it and then patch the good eye to force the brain to learn to use the prosthesis. So, when she was patched, she was legally blind with only the bad eye to see. This caused great distress to her, as you can imagine. As a baby, she experienced sensory deprivation. When the brain is deprived of one of its senses, it freaks out and basically shuts down by way of sleep. A few minutes after we put it on, even if she just got up for the morning, she would fall asleep and sleep for hours. The patch, obviously, only worked if she was awake. As she got older she would pull it off when I wasn’t around or peel the corner away and cheat. She could see fine without the patch with her one eye, but with it she saw almost nothing but light and shape. At some point, I tried to reason with her about wearing it. I said, “Abbey, this helps you see better.” She looked at me like I had just landed my spaceship in the kitchen and said “take me to your leader” in some sort of high-pitched beep language. She said, “no, mommy, no, I see much better without that patch.” It was a tough sell and she never did buy it. It’s hard to sit here with Eli’s little body being beat to an internal pulp and be told it’s helping him. But, unlike a 4-year-old Abbey, as a mature adult I can look at the evidence of scans and imaging to see that it’s working. But, still in the moment of him throwing up, and shaking, and crying, it’s hard to remember that. They count the days down when they are in-patient for chemo. So, today was “day minus four.” As of this writing, the day was going as expected with the usual reactions until we hit this afternoon and headed down a familiar path. He began running a fever and popping a rash. So, they drew cultures, but don’t want an infection to take hold before they can get the results back so he is on antibiotics with wide coverage. His blood pressure is a little low sided, but stable. The puking has decreased in exchange for diarrhea. He will have an hour of chemo in the morning and that’s it for tomorrow, aside from dealing with the aftermath of it all which will have cranked up by then. But, for now, the night, she comes. Just like Abbey struggling with what she knows to be true and what I was telling her was true, I struggle with what I know I want and what God has promised. We are so invested in our earthly lives that it makes it difficult to see the big spiritual picture. We ask God for things and expect the answer to be an earthly answer. I ask God to save my son and then dare tell him how I want him to do it. Shameful. Eli sets such a strong example in how he trusts me to do what is good for him. Never a question about what is asked of him. God through inspired writers speaks pretty highly of children and tells us to use them as examples to follow. I believe Eli, unknowingly, is one such child and I hope to be more like him. The picture tonight is just of Eli in the room.

1 comment:

  1. A hard time on a Mother for sure, but you are learning lessons everyday. My prayer is for you and Eli, asking God to help you through this time. Wish I could do more.

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