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To the Friends Who Say They’re ‘Busy’ This Holiday Season

It’s the time of year for baking Christmas cookies, taking kids to see Santa, walking through fields of Christmas lights, visiting friends and family, wrapping gifts, decorating the house and tree, going to shows and shopping — all the traditional holiday things my family did last year. This year, it’s a different story.

This year we try to perfectly plan dates to fit in some of these traditions because of our son Johnny’s medical needs. We get many responses of, “Oh, we’re busy that weekend, can we try for another?” And our response is, “We can try, but we’ll have to see how Johnny is that week.” The word “busy” to us is completely different than what busy is to many of our friends.

To those friends, I would just like to say:

Ashley’s son Johnny

I’m busy, too. You may not see it because I don’t have freshly baked cookies, a perfectly decorated house or all my gifts wrapped. I didn’t send Christmas cards this year, I’m not attending any holiday parties on weekends and I ordered all our gifts online instead of going out shopping.  It’s not the same “busy” that you are, but believe me, it’s busy.

I’m making appointments for lab work and clinic visits. I’m lining up multiple insurance appeals for medications our son has been denied, yet needs because they are life-saving. I’m giving him nebulizer and chest treatments four times a day because he has a terrible cough. I’m driving back and forth to a hospital that’s two hours away at least once a week so he can have blood work to keep his leucine levels in check. I’m weighing every gram of food he eats and counting every calorie he ingests to make sure he’s getting just enough of everything to keep his body from being catabolic.

On top of that, I’m working a 32-hour week so I can maintain our health benefits. I’m a mom to an almost-4-year-old who I adore and who still needs my attention, love and time. I’m a wife to a husband. I’m trying to get meals on the table and keep a house maintained. I would love to be baking cookies, visiting Santa, seeing Christmas lights, going to parties and doing everything that your family does, but this year, that’s just not our reality and that’s not our “busy.”

I can’t promise that next year will be any better, but that’s OK. This is what makes our family and our life so unique. This is what I love. My “busy” is the best “busy” for us and I wouldn’t trade that for all the Christmas cookies in the world!

Ashley with her daughter and son

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.