Finding Our Way
When the kids were itty bitty and we’d just found out that my daughter had the vision disorder her brother had and we found out he had the kidney disease it happened in a 3 month window.
It’s a time I always refer to as “The Fog” because I am not sure how I made it day-to-day. That period last about 6 months to a year, I’m not really sure. As the years went on the new of all the diagnoses and new treatments were still shocking but it didn’t take as long to return back to our normal. Somewhere along the way I became flexible. More flexible than I’d ever been.
When I say “somewhere along the way” I mean that years into it – maybe 3 or 4 years – was the time for me. I know that all of us have time markers that we remember when a flip switched. For me, it was when my husband had to hold down our son and I had to inject him with a medication what would make him feel better but would hurt. It stung horribly. I realized that sometimes things just get worse and it’s be better for me to go with the flow instead of expect one particular outcome.
That isn’t to say I don’t hope. I hope every single day. Sometimes my hope is noticeable some days it is not. I’ve just come to a place that I don’t hope so much and so high that if (and when) something crushes it, I can’t recover. That helps me. That’s the way I deal with this life. I’m smart enough to know there are a a lot of ways to deal with the ups and downs of medical and developmental special needs.
What are your coping skills?
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I go into what I call nurse mode. When I was working, I found I would switch into nurse mode so I could handle the stress of taking care of sometimes very sick people, calling in the rescue squad, etc, and basically running on adrenaline but staying calm at the same time. But then I got home, where I was able to relax and let my guard down, and that’s when the stress of the day would hit me.
With the kids, and especially Micah, I frequently don’t get to decompress at the end of the day because we’re in the hospital or waiting days, weeks, or even months for test results, but it’s still the pattern I follow. Maybe that’s why I subconsciously reach for my scrub pants on days when I’m stressed? Changing out of them and into pajamas at the end of the day is comforting, a reminder that life will get back to “baseline” even if it’s not what others call “normal”.