Sunday, March 26, 2017

Don't Tell Me What I Should've Done

Please don't tell me what I should've done with Tay. My kid is nothing like yours.

She not only has a rare kidney disease, but she also has cerebral palsy. It is a brain injury. It affects her coordination as well as her senses. I could have affected her speech or intellect, but it didn't.

Don't tell me that if I'd only exposed her to more germs or other kids, that she wouldn't be sick. Tay spent the first year of her life under a self-imposed quarantine. On top of not be allowed around other people who could possibly get her sick, we had to fight to get her an immunization series that would HELP should she get sick with RSV. (More info here.) And then, even after our winter quarantine was over on her first birthday, she still couldn't go into a day care or preschool setting until she was two and a half years old. Thankfully, she's hardly been sick and it hasn't been anything really bad, but those first two years were awful. If we went anywhere, we wiped everything down with Chlorox wipes, even swings! I dreaded going into ANY doctor's office for fear of people coughing or sneezing too close to her. And if there was ANY sign of puking, lethargy or any other symptom of possibly having her electrolytes out of balance, we were in the emergency room.

Don't tell me that if I'd only let her get dirty or wet or play, that she wouldn't have the fits that she does and she'd want to get dirty or wet or play. Tay spent the first three months of her life in a hospital. Therefore, she wasn't exposed to those normal, every day sounds and experiences that your child was. My child's "white noise" was the beeping of monitors and machines, not the vacuum cleaner or washing machine. Therefore, the vacuum, auto-flushing toilets, large crowds, sirens are all "too loud." Dirt is "too messy." Water is "too hot" or "too cold" or "too wet," depending upon the day or hour of the day. We have made a TON of progress with her sensory issues, but still, there are times that things are just too much. She has learned a lot of coping mechanisms: running/walking in circles, snuggling, hiding under things, and various other "stims." All of these things help her make sense of the world around her. No amount of "letting her play" is going to change it. Giving her all the opportunities I can to INCLUDE her in things is what I am trying to do. Give her the opportunity to see that sometimes dirt can be fun or water can be fun or any other "normal" kid thing. Believe me, I have tried. Maybe one day. Maybe not.

Don't tell me that "God gives His toughest battles to His strongest warriors" or "God only gives you what you can handle." These are FALSE. They are platitudes said by believers all the time when they don't know what to say to people going through tough times. The Bible is riddled with instances where God used people who believed they were weak and not leaders to lead people. Moses was one such person. He argued with GOD because he felt he couldn't do what was being asked of him. God will give you MORE than what you can handle so you learn to lean on Him.
"For I can do everything through Christ, who gives me strength" -- Philippians 4:13
So please don't tell me what to do with my special needs child. Don't tell me what I should have done with them when they were younger. Unless you have walked in my shoes and dealt with my child, you have no idea. And believe me, when you do deal with her, she will likely be having one of her "good" days. She'll hold it together because she knows that's what she needs to do to get by. But the second she is home, she'll meltdown on me. That is just how it goes. She knows how to hide her invisible disorders and disabilities. She's 4 and she's already figured this out. She knows how the world works. She knows who she can trust.

So don't tell me that I should've have done something different. Believe me, if I could have, I would have. But sometimes, there are no other options.

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