The fall of 2019 was a difficult time. In late August, Grace came home from school one day with a red and swollen thumb. Due to the redness and heat, we started her on antibiotics, but the thumb didn’t improve. After three days of antibiotics, she was able to get in with her regular ortho doctor. Turns out it was a displaced fracture, not an infection—antibiotics don’t do much for fractures. However, the x-ray showed something much more alarming.

Almost all of Grace’s distal phalanx bones had dissolved. Infection had won the war of attrition against her bones.

In a normal hand x-ray, each distal phalanx is a few millimeters long. It’s a skinny bone with an angled tip and a slightly wider base. In Grace’s hand x-rays, there was just a base with a nub. Nothing else. The entire top part of the bone had dissolved in almost all of her fingers. It was far more horrifying than the displaced fracture in the thumb.

Grace’s infectious disease doctor decided to treat the chronic osteomyelitis that had dissolved the bones with long-term antibiotics, and so Grace continued taking Keflex even after the thumb was determined to be a fracture.

Sometime in September or October, Grace developed a wound on her left ring finger that didn’t look right to me. It was too red—very infected-looking—and she would get blisters occasionally for no apparent reason. Every time we followed up with infectious disease and ortho, I would show them the finger, but because she was already on antibiotics, nothing further was done.

By early November, she developed a mystery fever and the finger looked redder and felt hotter, so we went to the ER. The finger was only red and hot at the tip when we got there, but a streak had developed on her hand by the time we left. She was not admitted that first day at the ER, but when we bounced back the following day, they sent her upstairs. She spent about 5 days inpatient that time. When she was discharged, she had a few days of mild improvement, or at least not worsening, but she was so pale. So, so pale.

About a week later, she developed a streak in a toe that we’d been battling since July, and her opposite knee became red and hot. Those streaks developed on a Saturday night that happened to be my birthday. Or maybe there was no coincidence; we had friends over that night, and perhaps it was too much excitement. She was still ghost-white, an outward sign of her internal battle. Anyway, it was late when we saw the streaking, and we decided to wait until our already scheduled Monday appointment instead of going back to the hospital.

Grace didn’t really improve throughout the month of November, and I kept her home from school all month. She looked so sick; she was deathly pale and had no energy. She cried and moaned about being kept home, but I was worried that if I sent her to school, she would worsen. Finally, on the first school day in December, I allowed her to go back to school—it seemed like she may never improve, and she had already missed all but one day in November. The next day, she had a streak in the opposite toe—her fourth major infection at the same time. That was the last straw. We went back to the ER.

That time, she stayed in the hospital for an entire week. She came home with a new accessory, a long-term IV called a PICC line so that she could get IV antibiotics at home for the next several weeks. She got her PICC line out on Christmas Eve, just in time to see Santa parading down our street, which was great because we’d missed our scheduled Pictures with Santa event while she was in the hospital.

Grace still looks a little pale to me from time to time, but not the deathly white she was throughout November. She had a hard time recovering from the virus she had the entire month of March (it might have been COVID-19), and her bones have dissolved a little more since last fall. She is not entirely out of the woods and she may never be the same. There will be lasting consequences of that illness; not just physical but also psychological. (More on that later! That’s a post unto itself.)

I learned some lessons from the sickness of last fall. Probably the most important one, to me, is that we must live life while we can. We are not guaranteed anything but this moment. Grace could have died last fall—she had a few very scary days where I wondered if she would make it through. No matter how tough it is to parent her, it is a blessing to do so. She’s amazing and sweet and beautiful and loving and kind. I am so grateful to have the chance to be with her, every single day.

Love you, Amazing Gracie. ❤