When there is no “getting better”, your definition of “better” changes.
Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.
Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”
However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:
“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”
Now, does this mean that you shouldn’t ask me if Lyra is “better”? Absolutely not! Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.
And really, there is no cure for cute.