Most of the time, we barely notice Gracie’s disabilities. They are part of her, and part of our everyday life, and so much part of the routine. Once in a while, though, they reach out and slap us in the face, reminding us of how different she really is.
We just got home from a fabulous spring break trip to California. It was everything we needed and wanted it to be—full of great times with family and fun in the cool California spring. We all needed the rejuvenation.
Mostly, Gracie fit right in in California, too. Her cousins are familiar enough with her to not be shocked at her differences; it seemed that they, too, barely noticed them. She is accepted as herself, which is absolutely lovely. One incident, though, reminded us all that no matter how much we want it, she cannot just be a normal kid.
The kids begged all week to go “swim” in my brother’s hot tub. He keeps it at a balmy warm-swimming-pool temperature, and it is essentially my niece’s personal swimming pool. We were finally able to go swimming on our second-to-last night in California. The three kids (my two and my niece) were gleefully splashing in the lukewarm water for quite some time. Eventually, the kids all decided it was time to get out, Gracie last of all. When she got out, we had an instant reminder of her differences—Gracie’s legs were abraded from the knees down, blood trickling out at various points where the abrasions broke the skin. She, of course, had no idea.
We took her inside and gave her a quick bath, then I dressed the wounds with some of the fancy wound care supplies I brought with (packing is a different sort of beast for us). It was challenging to figure out how to bandage the wounds; they were so large that it was hard to dress them without having to tape over other wounds. Wound care is a specialty of mine, though, and soon she was fixed up and ready to play.
The brother at whose house this happened is no stranger to blood and guts; he is a paramedic and his wife is a nurse. Still, the sight of his young niece abraded over so much of her body with no knowledge of the wounds was shocking to my sweet brother. He had a slap-in-the-face moment—a moment when he realized what we live with on a daily basis—and it broke his heart a little.
It broke my heart, too, but not until the next day, when we had to cancel our trip to the beach in order to keep her wounds clean, and again the following day, when we were in the hotel and I couldn’t allow her to swim in the hotel pool (always the highlight of every kid’s hotel stay) because of the possibility of more abrasions or infection.
These little heartpangs are infrequent but they hurt the same amount every time. I like to tell people that we feel all the pain she doesn’t—the difference is we feel it in our hearts. It hurts to see a small child with her toenails partially ripped off, who has no idea she’s bleeding until she sees the blood, who has red angry wounds from the knee down on both legs and doesn’t know it. It’s a major slap in the face.
We had another slap-in-the-face reminder of Gracie’s differences right before our trip. Starting with the last Monday in February and continuing to the weekend before we left, Gracie had recurring fevers. She would spike fevers every few hours, shaking and moaning as her temperature rose. Motrin and Tylenol brought the temperatures down temporarily, but could not eradicate the cause of the fevers.
We made several trips to the pediatrician’s office and one trip to the ER during this two and a half week period. Each time, the doctors would look in her ears and throat, check her lungs, palpate her stomach, and find no answer. She had strep swabs, blood tests, urine tests, and a chest x-ray, but nothing returned any results. “Probably viral” became dreaded words of non-answer.
Fevers happen because of infections. Sometimes those infections are bacterial and other times they are viral. Bacterial infections can be treated with antibiotics, but viral infections must be allowed to run their course because modern medicine still cannot effectively fight them.
Normally, infections are very painful, but not in Gracie. She does feel some pain sometimes, but she lacks the ability to accurately quantify the pain. When she broke her wrist, she told her helper that it hurt, but she said it nonchalantly, as someone would remark about a chilly breeze rather than two broken bones with three fractures total. She has had numerous painless infections in her fingers, she has had painless urinary tract infections, and she has had a painless kidney infection. We cannot trust that she would feel an infection if it were painful enough; she has proven that she would not.
This is scary because certain infections, like appendicitis or meningitis, have no symptom other than pain at first and can turn life-threatening very quickly. If the appendix bursts, it will spew infection throughout the abdominal cavity, which can cause sepsis and, ultimately, death. Normal people feel intense pain with appendicitis. We have all seen images of people doubled over with appendix pain—a few of us have even experienced it. I cannot confidently say that Gracie would feel that pain. I am not sure if she would feel anything, and even if she did I doubt she could quantify it. She may nonchalantly remark that her stomach hurts, but she would not be doubled over in pain. This is the stuff of mommy nightmares—would I know something was wrong? Would I be able to get her help in time? Or would I just wait and see, not finding any other clues until it was too late? The recurring fevers brought me panic, and it was miserable to have to trust that the doctor probably would have found an infection if it was there.
Fortunately, both of these slap-in-the-face moments ended happily. Gracie’s fevers eventually broke, and her illness was indeed probably viral. Her legs are healing nicely—only one of the wounds looks less than perfect, and I’m keeping a watchful eye on it. So far, I think she will heal fine on her own without antibiotics.
And Gracie is back to her normal environment, where her differences are so much a part of her as to be unnoticeable.