Gracie turned 6 a few days ago. We celebrated at home with her favorite dinner—steak, cheesy fiesta potatoes (my homemade version of her favorite Taco Bell delicacy), and strawberries—and enjoyed watching Gracie’s glee as she opened her presents. She didn’t get the one thing she wanted most (a Fin Fun Mermaid Tail—totally inappropriate for a kid who can’t walk well, doesn’t know how to swim, and doesn’t have a pool), but she settled for the other toys that are now strewn about our living room.

Grace’s birthday was a little more relaxed this year than it has been in the past. She didn’t spend as much time in the hospital last year, didn’t have as many scary life-threatening infections, didn’t cause us quite as much stress and heartache. Her past birthdays have felt like a limp to the finish line—exhausted and broken, we have dragged ourselves through the year, collapsing as we made our goal. Reaching birthdays has seemed a nearly unattainable feat when we go through so much just to make it through the present moment.

Gracie has been hospitalized on or around her birthday several times. In fact, both of her fingertip amputations happened after late-August hospital stays. She lost the tip of her right index finger when she was just two; she was actually in the hospital on her birthday that year. She lost the tip of her left index finger when she was four. She managed to stay out of the hospital long enough to have her first-ever birthday party but was admitted days later with a nasty infection that streaked halfway up her forearm. And yes, she was four before she got a real birthday party—that’s what happens when you spend half your life in the hospital or at doctors’ offices.

But this year is different. She has no major wounds right now (knock on wood!), and even the huge pressure sore under her cast is healing nicely. She is looking forward to her birthday party, which will be in a few weeks at our house. She requested a mermaid swimming party, but Mean Mommy nixed that—she has a cast on her arm, so a swimming party is a recipe for disaster. Gracie settled for a makeover party instead. She invited all the little girls in her class plus some close friends. The first of her classmates RSVPed tonight, and hopefully several more will be able to join us for makeovers and hairdos. Little girls will run around our yard with full face makeup, chattering and climbing on the playset and generally having a great time.

These little slices of normalcy are something I cannot ever take for granted. Gracie is anything but normal—I mean, she’s amazing, but she also lives a life that most people would never imagine. To her, going to the doctor is normal. Having x-rays is normal. Getting IVs is normal—as is heckling the nurses if they don’t “get the blood” on the first try (or second, or third…). Spending large chunks of time on wound care every night is normal. Falling a lot is normal. Having the mother of all helicopter moms is normal (hey, it’s not easy to keep her safe!). But just running around the yard with other kids? That’s not normal for her at all. In fact, that’s not even something she can really do—she can’t keep up with the others. And having a swimming party? Totally not normal for her—usually she has so many wounds in various stages of healing that I worry about exposing her to the germs in public pools and won’t let her swim. We cannot risk a serious infection; she gets enough of those without the extra exposure to public germs.

Each birthday is a gift, for all of us. Most of us take that gift for granted—we have no reason to suspect we may not make it another year. But for someone like Gracie whose life is so far from normal, the gift becomes more real. There have been so many close calls, so many bad infections that could have ended her life. I will never forget her first pneumonia as an 8-month-old baby, when her arms and legs turned purple because her blood oxygen level was so low. I will never forget the first time she spiked a high fever, when her whole body shook and Chad and I panicked about whether to call an ambulance or load her into the car for an ER trip. I will never forget the knee infection of last summer that did not respond to IV antibiotics for three days, spreading in the hospital until almost her whole leg was infected. I will never forget so many scary moments, so many times her life was not to be taken for granted. And I will never, ever forget that she is a gift—a beautiful, sweet, charming, loving gift of Grace. Her birthday is a gift to all of us.

Happy Birthday, Amazing Gracie. ❤