Callie keeps on keeping on. She’s 10-½ years old, a fifth-grader. 

Ten years ago, when Callie was diagnosed with SMA, we learned the disorder would shorten her life. We didn’t receive an official estimate for her lifespan, but our most generous projections didn’t anticipate 10-½ years.

Callie has lived these years to their fullest. Sometimes we marvel at her spirit — the way she chooses to embrace her life despite her significant physical limitations. In so many ways Callie is a normal little girl who likes to crack jokes, eat pizza, play video games with her brothers, and study for her spelling tests.

But living her life requires a lot of support, both from us, her parents, and from a variety of other people. We’ve restructured our lives around Callie’s needs, and even that’s not enough. We need help from so many others to give Callie a full life.

So in the spirit of Thanksgiving, we’d like to share our gratitude to some of these people and groups:

Callie’s schools

Throughout Callie’s life, starting with preschool, we’ve had support from good schools. Leaders and teachers at all three schools Callie has attended have welcomed Callie and given her space to learn and express herself.

This year Callie started fifth-grade at High Point Friends, a Quaker school near our house. We walk her to school most days, and being a valued member of the class adds a lot to Callie’s quality of life.

We’re grateful to the Friends School — as well as Callie’s public elementary school, church-based preschool, classes at church, and the local Upward sports league where she cheerleads each fall — for looking beyond Callie’s obvious limitations and seeing the normal little girl inside the medical fragility.

Callie’s nurses

We’ve mentioned Callie’s nurses on this blog before. They have come and gone over the years, but we have a core group who know Callie and can anticipate her needs, giving her more control over her life and giving us a break from the demands of caregiving. 

Other medical support & guidance

Over the years Callie has seen dozens of physicians, many of whom have been instrumental in guiding Callie’s care. As Callie’s condition and our approach to her care have evolved, we have seen fewer doctors, but we have consistently relied on a few. We’re especially grateful to Dr. James Anderson, Callie’s primary care pediatrician; Dr. Richard Kravitz, pediatric pulmonologist at Duke; and Dr. Savithri Nageswaran, pediatric palliative care physician at Wake Forest.

At this point Callie wouldn’t survive more than a few days without her bipap machine which supports her breathing. Her cough assist machine has also helped bail us out of several illnesses she wouldn’t have survived. A feeding pump keeps her hydrated. We’re grateful for Callie’s medical equipment providers and their staff members.

Callie also wouldn’t be alive without the medicine she takes to support her breathing. We’re thankful for Hospice of the Piedmont for its staff members, past and present, who have helped us make hard decisions about her care.

We’re also grateful for the state programs that help us pay for these services.

Family 

Callie has three brothers. Twelve-year-old Peter is a constant companion who has never known life without Callie. Callie and Peter argue and tease each other sometimes, but ultimately they get each other. We joke they’re two for the price of one — if you get Callie, you get Peter. Even to the point of Peter gladly attending an all-girl candle-making party earlier this fall.

Callie’s older two brothers, Isaac, 18, and Ezra, 16, have shared in the pain of her diagnosis and have experienced a different childhood than they would have experienced without Callie. They aren’t always happy about it, but Isaac and Ezra help with errands and housework. Callie’s also harnessed the power of candy and snacks to lure them into a number of tea parties. Callie loves and admires all three of her brothers for different reasons.

We live several hours from our extended families but we always know they’re available for support if needed. Callie looks forward to seeing her cousins, especially the babies, and she loves visiting all her grandparents, going to the beach each summer with Christy’s family, and getting together with everybody on Thanksgiving. 

Flexible employers

Balancing Callie’s needs with the demands of everyday life has always been a challenge. We’re thankful to have jobs which allow for flexibility such as working from home and at odd hours and supervisors who understand we’re balancing difficult challenges along with work challenges.

Donations

Donations have helped us buy Callie a wheelchair-accessible van and other essentials. We’ve never been very active fund-raisers but we’re grateful for all the support we have received, from a benefit concert in my hometown of Ware Shoals, S.C., to the occasional people we don’t know who feel moved to give or to secretly pay for our dinner in a restaurant.

Early on we tried to do some SMA fund-raisers but quickly became overwhelmed by advocacy work. Still, people have given money to SMA research in honor of Callie. 

This research has recently paid off with a couple new therapies which are making a huge difference for babies diagnosed with SMA today. No such treatments existed 10 years ago as we were learning about the realities of Callie’s condition.

An uncertain future

When people ask how Callie is doing, it’s hard to answer. We’re so close to Callie we don’t see the minor changes and her little losses in ability. 

But when we see pictures from a year ago or step back and take a broader view, it becomes clear: Callie continues to grow physically weaker and more dependent on medical support to get through each day.

As we enter this winter, we’re worried. It takes only one cough, one sneeze, or a stuffy nose to put us on edge. The constant yo-yo of emotions is always hard for all of us, even when everything turns out okay.

We’ve never known from year to year how long Callie would make it, and we are grateful for not knowing the future. Uncertainty has given us space to let Callie grow and learn and become her own person.

Ultimately, all our gratitude falls in one category: thankfulness for more time.