Awareness

Images of brightly colored ribbons and notices of awareness months are all over our community these days.

Before Maddie Kate came along, I definitely thought it was awesome for the community to recognize our differences in this way but didn't fully grasp the essential nature of awareness. There is one vivid example ingrained into my memory of a day my eyes were opened to its importance. Maddie went through a bad stretch with UTIs between the ages two and three. They got so severe that they would travel to the kidneys and cause really high fevers to spike rapidly. We went through four episodes of febrile seizures which were some of the scariest occurrences I had ever witnessed, and unfortunately I have seen a lot with my little one. On once such occasion, we called an ambulance to transfer her to the hospital. I jumped in with her, comforted by having her in “capable” hands for our thirty minute ride. Before we left the yard, one of the paramedics asked, “So did she not have her spina bifida vaccination?” With those nine words, my confidence plummeted. I got so angry that this was not just an average person asking this question. It was a trained person that was supposed to be educated to take care of my baby in this very scary moment. How could she help take care of Maddie when it was clear that she knew nothing about my child’s condition?

In retrospect, as hard as it is to admit, I cannot expect everyone on the planet to walk around knowing what spina bifida is. I can’t expect them to know what it means to intermittently cath her every four hours. I can’t expect them to understand enough to show a little more patience and privacy when we take a lot longer on the public changing tables. Trust me, if I had any possible way around it, I would not be doing it here in the first place. So where does this leave us? I am still trying to fully reach this conclusion myself, but what I've come up with thus far is pretty simple.

Awareness is so much more than a yellow ribbon every October. It’s so much more than a month dedicated to a cause. These things are so so important, vastly more so than I ever understood, but truly impacting your community is a daily job. It’s choosing to let my rambunctious four year old loose on the cereal aisle at Publix in her chair while I struggle to keep up with a cart full of goodness knows what. You should see the smiles from everyone who passes her as she is spinning and smiling carrying the latest Dora cereal that she never eats after we buy it. It’s taking her to the park with all the other little kids and helping tote her up the slide over and over so she can play with them. They smile as they see how she army crawls like the best little ranger. They are getting exposed to the differences that make us special at an early age so they won’t even think twice about it when they are adults and see someone in a chair. It’s being brave and immersing our family in all aspects of everyday life so that people can realize a chair doesn't make a person any less a person. In fact, I have so many people come up to me and remark on the sheer beauty and strength they see radiating from my little girl.

Awareness needs to be about Maddie being comfortable in a world that is hers for the taking as well as that world being blown away when they see all that she can and will accomplish. Let’s tie a yellow ribbon around this truth and hold it close always.

Amanda

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