Category Archives: Daily life

Letting go: Our final weeks with Callie

Callie died on Sunday morning, April 18, 2021. The following blog post shares her final two weeks with us.

A two-week notice

This story begins in late March. Callie and her 13-year-old brother, Peter, were on spring break. We decided to visit Charleston, S.C., to see our 18-year-old son, Ezra, who had just started a temporary job there.

Callie with family in Charleston, S.C.
Peter, Callie, and Christy in Charleston’s Marion Square on Monday, March 29.

We had a great time. We stayed near the historic part of town and enjoyed walking around and taking pictures. We visited Ezra and also got together with other family and friends in the area. 

That trip felt like the beginning of a new chapter. Our oldest two boys were more or less grown all of a sudden. We had become a family of four — Callie, Peter, Christy, and I. On the way home we talked about all the other trips we could take to visit our older sons and other family and friends.

Yes, Callie had been very sick several times in her life. She’d been close to death more than once. Every day she relied on medical equipment to breathe. Caring for her had become a full-time job for more than one person. 

But no medical challenge had ever diminished her love for life. Inadvertently, as the years passed, we’d started to assume Callie would always find a way to keep going. She always had, for 12 years, and we were excited about the next 12 years of life with her.  

We got home from Charleston on Wednesday, March 31, and spent the next couple days getting back into a regular routine. On Friday of that week, Callie said she wanted to talk to us alone. This wasn’t too uncommon. As a 12-year-old, Callie sometimes had things she wanted to discuss without Peter listening.

She told us she was tired, and we affirmed her feelings, reminding her of the long trip we’d just taken.

“No,” she said, “I mean too tired for life.”

Again we jumped in with solutions. The pandemic had kept us home for about a year. Callie was always so sociable. Being home so much was particularly tough on her. We offered to visit some of her favorite places, to go for more walks, to find more fun things to do. With state restrictions lifting and vaccines rolling out, we’d be back to normal life soon enough. 

She said, “There’s nothing you can do to help this.”

She’d gotten our attention.

“I want to say it but it’s too sad,” she said. She meant it would be too sad for us. We encouraged her to tell us what was on her mind.

“I feel like it’s time for me to die,” she said. 

We listened. Callie made it clear her main concern was whether we’d be OK if she died. We promised if she went to Heaven, whenever that happened to be, we’d miss her terribly but that we’d be OK. 

Not telling anyone

Callie insisted we not tell anyone the way she felt except for her brothers and her best friend, Gillen.

Her brothers had shared so much of Callie’s journey with us. They would be surprised, though not shocked, by this development. But maybe you shouldn’t text this information to Gillen, who was 11, we said. At least not yet. Not until we knew a little more about what was going on.

Callie with Gillen
Gillen and Callie on Friday, April 2.

Callie was insistent. She said she had to tell Gillen or she couldn’t relax. She couldn’t go to Heaven without talking to Gillen first. So Christy called Gillen’s mom who re-arranged their family’s entire day, making time for a visit.

The two girls cried together but were laughing again soon enough as they played video games and shared jokes as usual. Seeing them together made us think maybe Callie had been feeling lonely and simply needed to see her best friend. Maybe life would be back to normal soon after all.

But Callie never wavered in her certainty that her time with us was coming to an end. Not that day and not in the days ahead. 

We asked Callie if we could tell her grandparents, her teachers, or any of her other friends. She was against it. She didn’t say why, exactly, but now we think she wanted to spend her last weeks doing the things she enjoyed without a lot of extra attention. This was, after all, how she enjoyed living her life. 

As that weekend progressed we went for walks and ate good food. Christy fried some shrimp which was one of Callie’s all-time favorites. 

At times, she’d take on a far-away demeanor. Her voice would sound weaker. She’d want to take off her bi-pap mask which was essential for her breathing. She mentioned seeing angels and Heaven but she couldn’t describe what it all looked like. 

“Anything you see on TV is ridiculous,” she said. 

Letting go of earthly things

Callie lived her normal life over that weekend, which included Easter Sunday. We walked (power-chaired) over to the track and ballfields behind the high school near our house.

Callie in wheelchair at the track
Callie at the track, without her bipap, on Monday, April 5.

Callie wanted her bipap breathing machine off during long stretches of this time so she could smell the world and feel more a part of her surroundings as she circled the quarter-mile track. Then, back at home, she’d want to lie down and would seem contemplative. Yet she always came back to herself and wanted to get back up.

By Monday, the day after Easter, Callie had become confused. She felt ready for whatever was next. But her body, though damaged and twisted, showed no signs of letting go. Callie wondered if she’d been wrong to think she was ready.

Christy called our Hospice nurse. Hospice of the Piedmont, along with the pediatric palliative team at Brenner Children’s Hospital, had guided us through several complex illnesses over the years. 

The nurse had an answer for this particular phase of life, too. She called it a lag time — a period in which the body hasn’t caught up with the spirit’s awareness that death is near. This explanation satisfied Callie’s concerns. 

School returned from spring break that week. Callie wanted to go back but could attend only sporadically. She did make it through the entire day on Friday, which was one of her goals for the week. She loved going to school. 

Our oldest two sons came home that weekend: Ezra from Charleston and Isaac from his trade school west of Nashville, Tenn. They’d FaceTimed but still wanted to visit, even though none of us really felt like Callie would be leaving us all that soon. 

The following Monday morning, April 12 — six days before she died — Callie went to school for the last time. Her school nurse was on a different assignment so Christy went with her that day. Within a couple hours, it was clear Callie was too exhausted to carry on at school any longer. Christy told her it was OK to go home.

Schoolwork on Callie's last day at school
Doing a word search on her last day of school, Monday, April 12.

That afternoon, back at home, Callie agreed to let us tell her teachers and principal why she wouldn’t be back to school. We couldn’t offer very much specific information. The only certainty we had was Callie’s certainty. She calmly assured us she was almost finished with her life.

I didn’t believe her, at least not fully, until that evening. We’d gotten some food from Subway which included Callie’s favorite chips, Barbecue Baked Lays. As we ate, Callie was reminiscing about a summer evening a couple years before. On that night we’d walked Peter to his swimming lesson and then stopped at the Subway across the street from the pool.

Callie’s story prompted me to say something like, “We’ve had some fun times, haven’t we?”

“Yes,” she said. “We did.”

More than her descriptions of the angels she’d seen taking other people to Heaven, Callie’s use of past tense — “We did” have some fun times instead of “We have” — told me she was letting go of the life she’d lived with us.

Beginning the dying process 

Callie had always wanted to paint a mailbox for our yard. Probably because she noticed other nice mailboxes on our walks around the neighborhood. Someone from the post office had installed our mailbox when we moved in. It was gray and simple.

I put off this project, month after month and year after year. With so much else to do, replacing a mailbox never made the cut.

Callie’s best friend, Gillen, has an older brother whose high school required a service project before graduation. He asked if Callie needed anything, and we thought of the mailbox idea. 

So on Tuesday evening, April 13, Gillen and her mom dropped off a new mailbox and visited with Callie for a few minutes. Gillen and her family were still among only a handful of people who knew how Callie had been feeling during this time.

Painting her mailbox
Painting her mailbox on Wednesday, April 14.

At bedtime that night, Callie said she’d like Christy to cook sweet-and-sour meatballs with homemade, baked macaroni and cheese, one of her favorite meals, the next day.

The next day was Wednesday. Peter left for school and we got the mailbox and some paint out for Callie. She had almost no energy left to sit up. She needed both hands to hold her paintbrush. But she managed to paint “The Goldens” in yellow paint and our house number in big black numbers.

Callie loved to paint, and her artwork often included a bright, smiling sun with one eye winking. She was nearly out of energy, but she put her trademark winky sun on the back of the mailbox so we could see it from our front windows.

winky face on mailbox
Her trademark winking sun.

After painting, Callie was ready to lay back down, and I decided it was a good time to run a few errands since she’d likely go to sleep. As I backed down the driveway, Christy called and asked me to come back in. Callie was still in bed but was upset, saying everything hurt. She couldn’t explain the problem beyond that.

With Callie so agitated, afraid, and unable to understand why she felt so bad, we reached out to Hospice. Callie’s nurse, Nancy, came over. Dr. Maike Copeland, a Hospice physician who knew Callie well, also stopped by.

They suspected Callie was experiencing terminal agitation, a common end-of-life occurrence. We asked lots of questions, and they said Callie’s prognosis was uncertain. 

We were also in touch with the palliative team at Brenner Children’s. This team, led by Dr. Savi Nageswaran and nurse Andrea, had been equally helpful over the years. 

We asked if Callie’s bipap was causing more harm than good. We learned there was nothing we could do to stop Callie from dying. She was transitioning into the dying process. Keeping her comfortable — whether on bipap or off — was our top priority.

After a few hours, Callie managed to calm down and get some rest. 

A special meal

Christy cooked the dinner Callie requested and made her a plate, cutting the meatballs and macaroni. Callie had always insisted on sitting up and feeding herself. This night was no different. 

This night resembled any other evening in our den in other ways, too. Callie sat in the special recliner we’d bought for her. She referred to the chair as her “nest” because she kept it filled with her things — drawings, collections of small toys, books, pencils, and anything else she wanted nearby.

Callie and Peter watched TV together. They started an episode of “Full House,” the sitcom from the late 1980s. Callie loved these little joys of life: Eating good food, spending time with family, watching TV shows.

She couldn’t eat, though. She didn’t have an appetite. She wanted to lay back down. As we put Callie back in bed, Christy wished out loud that she’d cooked sooner, maybe for lunch instead of dinner, so Callie could have enjoyed her meal.

Callie rested well for several hours that night. At about 2 am she woke up very thirsty and drank most of a cup of water — a lot by her standards. She mentioned being hungry but wanted to wait until the morning to eat.

At 4 am she woke up again. This time, she couldn’t wait to eat. I got her up. Christy heard the commotion and came to help us. Callie wanted a bowl of Honey Nut Cheerios, which she ate energetically. A few bites into the bowl of cereal, Callie remembered the meatballs and baked macaroni from the night before.

She wanted her plate reheated. She let us help her eat, and she enjoyed her special meal. 

I wondered, once again, if all this talk of dying was just a big misunderstanding, an exaggeration. If her appetite was back, maybe she’d be feeling more like herself as the day went on.

Her hunger satisfied, Callie drifted back to sleep.

Three days holding her

We spent the next three days holding her. We’d take turns, a few hours at a time. 

Nathan and Callie
Nathan and Callie on Thursday, April 15.

Callie slept. She moaned some on the first day, Thursday, April 15. We kept her on her bipap machine that day even though the machine’s air pressure seemed to be agitating her at times. With the Hospice nurse’s help we learned how to use medicine to keep Callie comfortable.

We lowered the air pressure on her bipap, but the machine still seemed to be impeding her rest. By Friday the machine was clearly too invasive, so we stopped using it, and she continued to rest well without it.

You’d think three days spent on a couch would creep by, but they didn’t. Each day passed too quickly. Throughout those days we told her how much we loved her and how well she was doing. Peter was a constant presence, too. He reassured Callie and told her what a good sister she was.

Once, she looked up at me and said, “Are you OK, Dad?” For those couple seconds it seemed like she was back with us, but then she drifted away again.

She wanted both of us equally. It had been a running joke around our house, based in reality, that Callie preferred me to hold her. Lots of times, when she needed something, we’d ask whether she wanted Mom or Dad.

She’d normally answer, “No offense, Mom,” and we all knew what that meant. 

But on these days she wanted us both, and neither of us wanted to give up our turn too soon.

Christy and Callie
Christy and Callie on Saturday, April 17.

Whoever wasn’t holding her took care of details around the house. Christy washed every item of Callie’s clothing and sheets that she could find so Callie could have all her favorite outfits to choose from. I kept trying to get some work done. Taking a break would require acknowledging what seemed to be happening.

The Hospice nurse visited each day. One of our pastors stopped by, too, after Callie agreed to share what was going on. 

We also heard from our longtime family friend, Sandy. Between busy lives and the pandemic we hadn’t been in touch with Sandy and her family lately. But we’d continued to share a set of hair clippers for boys’ haircuts, passing it back and forth as needed. Sandy needed to pick up the set from our house.

We asked our pastor to drop off the hair clippers at Sandy’s house. We knew Sandy would find it odd if our pastor showed up with a set of hair clippers, so we asked our pastor to let Sandy know what was going on with Callie.

Soon after, a bag of Chick-fil-A food materialized at our front door right after we saw Sandy’s van driving down the block. We ate, not knowing we’d even been hungry.

Though she was only occasionally conscious, Callie kept to her routine. In the mornings she’d get out of bed and we’d move to the couch. In the evenings we’d move everything back to her room for the night and tuck her in.

Telling family 

Saturday night, as we put Callie in bed, she was weaker than I’d ever seen her. She could still communicate with us through little sighs and nods and by fluttering her eyes a little. 

As a nurse, Christy has cared for dying patients. She recognized something in Callie’s breathing and appearance that left no doubt Callie’s life was nearing its end. It seemed possible Callie wouldn’t make it through the night. 

At this point we still hadn’t told Callie’s grandparents or other extended family what was going on. Callie had asked us not to, and she hadn’t told them either, despite being on FaceTime and having opportunities to do so.

On this Saturday night we told her we really needed to tell her grandparents. Callie nodded her consent. We got both sets of grandparents on speaker phone, one after the other, and quickly filled them in.

Over the phone, Callie got to hear how much she was loved and how much her life had touched other people — people she didn’t even know. She heard how proud everybody was of how she’d lived her life. 

She heard her 2-year-old cousin Olivia’s voice and fluttered her eyes in recognition. She adored Olivia. She heard Olivia’s mom promise to tell Olivia all about Callie when she got older.

Callie’s insistence on not sharing suddenly made more sense. She’d wanted to live her normal life as long as possible. Callie wasn’t outwardly affectionate. She got to hear how much she was loved without having to participate in the conversation.

It was a hard hour. We turned off the lights and neither of us wanted to leave Callie’s room. I encouraged Christy to go to bed so I could do what I was in the habit of doing, taking care of Callie at night, one more time. She did, but I don’t think she slept much, if any.

At first Callie’s heart rate was way too fast and her oxygen level was too low, and I didn’t think she could make it until the morning. After midnight, though, she settled into some of the best vital signs she’d had in days.

During those hours she would occasionally call out, “Hey, Dad.” I could barely hear her. I never knew exactly what she needed but would try out a few things, repositioning her head on the pillow or offering her a sip of pink lemonade which she could take only through a small syringe at this point. Maybe I guessed correctly since she’d settle back into sleep within minutes.

At 3 am Christy came up the hall to relieve me and I slept a couple hours. Callie was resting comfortably, and I knew she could make it through the night.

Final moments

When I got up Callie was still resting comfortably as Christy cared for her. Christy was wearing a sweater that Callie loved. Even though it was made out of a rough material, Callie had always liked resting against it. 

We started to get Callie out of bed, just like we had on the previous days, and I thought we may have yet another day to hold her, back and forth, on the couch. 

We didn’t make it out of her bedroom that morning. Callie’s oxygen levels started to decrease. This had happened a few times in the preceding days, but this time her numbers weren’t bouncing back.

I called Hospice to let the nurse on call know what was going on. 

We needed some basic medical supplies so Christy had asked her friend Sandy to drop them by on her way to church that morning. Sandy arrived in time to tell Callie goodbye, and she also agreed to stay in case we needed anything else.

Callie’s oxygen level was reading lower than I had ever seen it — below 80, and then below 70. By then, Christy was holding Callie in the recliner we kept in Callie’s bedroom. 

Callie asked for me with a quiet “Hey, Dad.” As I held her, the vital signs we’d spent so many years monitoring started to decrease slowly. Her oxygen level kept falling, gently, gradually. Her heart rate began to slow down, just as gradually. Peter had been in the room with us throughout that morning. We told him he could leave if he wanted to. He went into the living room to visit with Sandy.

Christy sang that old song “My Girl” which Callie had always loved. When they got to the chorus, Callie would always chime in with her part, just those two words, “My girl.” On this morning when that line came, Callie grunted her part, and we knew she was still with us.

We turned the pulse oximeter off. Its numbers no longer mattered. Callie kept breathing, gently, quietly, more slowly. Then she inhaled and didn’t exhale. Christy and I froze. There was nothing to say or do. We sat still and held Callie. I could still feel a little air moving around in front of her nose for a few more minutes.

Then, the room changed: a feeling that this, even this, was OK. Christy felt the same way. We both looked up, simultaneously, in response to that feeling. 

Later, after the funeral, we wondered if what we felt had been Callie turning around to hug us as we held onto the body she’d just left.

Bath and funeral home

The on-call Hospice nurse came in. She listened with her stethoscope and confirmed that Callie had died. It was 9:45 am Sunday, April 18, two hours after she’d gotten up. The nurse called the funeral home. Christy started calling family members, starting with our older two sons.

I got Callie’s little body in the bath because she’d had no energy for one the previous couple days. With the Hospice nurse’s help, I used Callie’s most recent favorite soap which smelled like coconuts. We also used her favorite shampoo and conditioner.

Christy and I got Callie dressed in a teal shirt and dark Capri pants which she’d asked for just two weeks earlier but had worn to school only once. We put her pink socks on her feet.

During this time Peter was giving Sandy a tour of the yard, and we were glad she had stopped by. Christy dried Callie’s hair and put up her side ponytail, which had been her most recent style.

With nothing left to do we sat on the couch and held Callie, waiting for the funeral home to arrive. Her body still felt the same as it had when she was alive.

When the two men from the funeral home came in with a gurney, Christy asked them not to rearrange Callie after they took her. Callie’s legs didn’t stretch out and she had to have her pillows arranged just so to keep her from rolling over since her spine had rotated so much. We’d had this same conversation with nurses prior to several surgeries over the years. 

The two men from the funeral home were patient and kind. Christy was holding Callie when it was time for her to go. I took her and laid her on the gurney, and we arranged her properly.

By this time Peter was back inside. He was explaining to the funeral home employees how special Callie was and how much he wished they could have met her.

They took the gurney out the front door and down our front steps. When Callie reached the bottom of the steps, beyond the shadow of our roof, the sun lit up her face. 

What’s next?

Three months have passed. Our lives are totally different. We’d shaped everything we did and every choice we made — big and small — around Callie’s needs. 

Those habits are hard to break. We still reach for her favorite foods in the grocery store before realizing. We still plan ahead as if one of us needs to be at home or close to Callie’s school just in case.

our mailbox with flowers
The final mailbox service project included planting some of Callie’s favorite flowers.

We promised Callie we would be OK, and we will, but OK doesn’t mean we don’t miss her.

We worry most about Peter, and we’ve noticed others seem to feel the same way. When the kids at Callie and Peter’s school learned about Callie’s death the following Monday, Peter’s well-being was the students’ top concern.

He’d never known life without Callie, so there was good cause for concern. Overall he’s been doing well. He’s been overwhelmed by sadness at times, but he’s also been able to enjoy his life.

Our two older sons are doing OK, too. It’s different for them being away. We’ve noticed it’s been hard when they’ve come home and felt Callie’s absence more directly. 

We don’t expect to understand Callie’s purpose or to know what she accomplished in her life. We do know that for 12 years we had the best little girl, a girl whose quiet bravery and love for life gave our lives more meaning.

The special needs-coronavirus connection

Many people have asked how our family’s been doing during this coronavirus scare. We’ve been doing very well. In some ways, our life isn’t much different. Some things are more difficult — Callie’s going stir crazy because she loves going places. But life is also easier — because we can’t go places. 

Going anywhere with Callie takes tremendous physical effort and mental planning. Not long before the shelter-in-place order, Nathan stayed home from our Wednesday night church dinner and classes a couple of times so he could get some work done. It took me and all three of our boys to survive those three hours. 

callie peter in class
Peter and Callie holding down their end of the table in class at church.

Our two older boys unloaded a special activity chair (about 75 pounds) from the back of our van and rolled/carried it downstairs to the church dining area while Peter helped me carry some equipment (about 25 pounds) and I pushed Callie in her stroller (one she uses for riding in the car) with another 25 pounds of equipment on it. 

Callie and Peter attend a class after the meal which meant it was time for more logistical adventures. The boys helped carry equipment as I pushed Callie in her activity chair. There’s a door at the top of the wheelchair lift that connects to the next building where Callie’s class is located. Since that door was locked, one of our teenagers ran around the long way to unlock it from the other side. The boys then went to their youth group as I got Callie settled in for her class.

After class I read a “Warriors” book to Peter and Callie while we waited for the older boys’ youth group to finish so they could help get us all home. They carried her activity chair and equipment downstairs while I carried Callie and put her back in her stroller. The boys put the activity chair in the very back of the van while I lowered the ramp and pushed Callie in. We strapped her chair down and then drove the one mile to our house and did everything again in reverse. This is why Nathan and I say that if someone spent a day in our life they would never wonder why we were late to anything. 

callie outside in powerchair
Callie loves roaming the neighborhood in her power chair.

Being home so much has given us a break from this hectic brand of normal. But Callie misses going to school, even as she and Peter have enjoyed the extra time together. They have evolved into what they call their “morning routine” — watching “Little House on the Prairie” during breakfast; playing Minecraft; having a snack; getting some schoolwork done. That’s followed by lunch while watching a movie and then a little schoolwork if we’re feeling extra motivated, then time playing outside. 

Callie can still use her power chair for brief periods of time, and she thoroughly enjoys it. Nathan always has to be the one to take her outside because she’s a daredevil and it causes me major anxiety. I prefer to sit inside and pretend I don’t know she’s flying down the street. 

In some ways, special needs parents are already set up for coronavirus living: Parents don’t have much of a life of their own; health is not a guarantee and your entire life is suddenly dictated by a disease you can’t control; flexibility and innovation are essential. I think many people are getting an inadvertent glance into a special needs kind of life.

club rules
Callie and Peter wrote these rules for their outdoor gathering space. “Bugzly-bucks” is code for their two older brothers.

How do you make a good life when everything is so limited? You figure it out through trial and error.

How do you enjoy the day when you have no time to yourself, deadlines to meet, people to feed, errands to run (when you can’t take everyone with you but you also can’t leave them at home) and wondering if every little sniffle could be deadly? You learn what actually matters in life and let go of the rest. 

How do you hold down a job at home while also being a full-time caregiver? You mix work and caregiving together (as Nathan does) and do them simultaneously, around the clock, at least 16 hours a day, six days a week.

How do you find your way back to normal? You realize that “normal” has changed and you have to move forward even though you’re still trying to get your bearings. 

How do you know what to do when everyone has an opinion and what one doctor says is the exact opposite of what a different doctor says? You make your decisions out of love, trusting you’re doing the best you can with the information you have.

This is how our family has lived for over a decade. It’s exhausting, painful, overwhelming, and stressful. But it’s also possible. And somehow, it’s better than we thought it ever could be.

Gratitude

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

at the movies
Callie and her mom, Christy, at “Toy Story 4” this past summer.

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

on the train
Callie on a train at a school fair with her dad, Nathan.

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.

halloween
Callie, dressed as a cat, and her brother Ezra goofing off with our cat Gracie on Halloween.

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.

Callie with birthday cake

Double digits!

Callie’s had a busy life since we last posted in the fall.

She’s continued to enjoy having a baby-girl cousin. Callie has regularly managed to claim first dibs on any holding and feeding of the baby.

Callie and Peter in the snow.
Callie and Peter in the snow. We got about 15 inches in December.

We had a great Thanksgiving with our families in South Carolina, and Callie got her requested Lalaloopsy oven, a modern version of an Easy Bake Oven, from Santa.

We also had a really big snow in mid-December. Callie has always loved snow. She insisted on being outside as much as possible. She even went sledding. Things like that make me incredibly nervous, so I’m grateful that Callie has Nathan, who’s much calmer than I am. Otherwise, Callie would have fewer experiences that fall into the thrill-seeking category of life.

Callie and Peter
Callie and Peter spend a lot of time together.

Callie had a couple of health scares in December and January. We were never able to determine an exact cause. She didn’t have a cold or pneumonia. She was just extremely tired, had trouble with aspiration and began experiencing apnea (a pause in breathing) while she slept. Fortunately, adjusting her Bi-pap settings directly addressed this complication, and we haven’t had any trouble since then.

And on February 5, Callie turned 10 years old. This is a milestone many people, including us, weren’t sure she’d reach. At the same time, it’s difficult to look back and see how strong she used to be. She’s worn her Bi-pap all night for several years, but as recently as October she didn’t need it for the majority of the day. Now she wears it anywhere from 20 to 22 hours per day, and it seems she wouldn’t survive more than a day or two without it.

Callie's picture of our cat Gracie
Callie painted a portrait our cat Gracie. Gracie wasn’t terribly impressed.

Callie’s not one to be slowed down or underestimated. She loves painting, homemade Rice Krispy treats, baseball, our new local ice cream shop, Wonderful Wednesday at our church, and Dragons: Race to the Edge on Netflix.

Occasionally she lets some of her heartache come through: Like a few weeks ago when she said, “If I could ride a bike, I would get one with a basket on the front. I’ve always thought it would be fun to carry things in it.” But she always comes around to embrace the brighter side of her life, and everyone around her can’t help but to follow her lead.

An autumn update

Early last week, we took Callie to see her pediatric palliative care doctor so we could discuss some problems Callie has been having the past couple of weeks. Callie had become extremely fatigued, needing naps and asking to wear her bi-pap during the day. Callie’s stomach was also hurting when she ate, but she didn’t have any other symptoms, such as a fever or cough.

Harry Potter World

Visiting Hogwarts at Harry Potter World in Orlando.

Callie naturally has some days when she’s tired, especially after having a lot of activity. We’d been to Harry Potter World with my parents as a special trip, but that was back in October. And despite all the wand waving, playing in the pool, and traveling, Callie had seemed okay during the trip.

As we were telling the doctor how tired Callie had been, she and Peter were up to their usual antics — pretending, laughing, putting on plays with the owls they’d just made out of construction paper with a volunteer in the waiting room.

On previous visits to this doctor, Callie hadn’t had any of her brothers with her. She cried and was apprehensive the entire time. The doctor enjoyed seeing this side of Callie — the side we see so frequently and the reason we were there for that appointment: We don’t want to see that joy diminish.

Callie with cousin Olivia

Callie with her new cousin, Olivia, the daughter of my younger sister and her husband.

Peter and Callie told the doctor all about their new baby cousin, Olivia. Callie was thrilled the new baby was a girl, and she immediately inducted Olivia into our “Girl’s Club,” which until then consisted of Callie, me, and our girl kitty. Peter wanted me to show the doctor the picture of when Olivia, at 6 days old, reached out to touch Callie’s face. The doctor was appropriately impressed, which only widened Callie’s smile.

Eventually we started discussing the reason for our visit. The doctor thinks Callie is probably not maintaining sufficient oxygen levels because of the compression on her lungs from her worsening scoliosis. As a result, she’s building up carbon dioxide (CO2), which causes sleepiness. The stomach pain is still mysterious, but we suspect it ties into the respiratory problems as well.

We developed a plan: more cough assist and bi-pap to help Callie clear more CO2 and an adjustment to her medication to help with the pain. So far, between keeping Callie on her bi-pap essentially all day and night, and adjusting her medication, we’re seeing an improvement in her energy level, appetite, and pain. In the meantime, the doctor said she would be reaching out to other specialists to see if they have any other theories or ideas.

Callie’s continuing to live the life she enjoys and is looking forward to visiting our families for Thanksgiving. Being the youngest of four children, she’s used to sibling arguments and having to present her case for what movie to watch, where to eat or whether to play with Lalaloopsy dolls or army men.

So she’s very pleased that she managed to “call” holding Olivia first, knowing her brothers will simply have to wait their turn.

Wrapping up another year

Callie with friend

Callie with one of her best friends, Ella Rose.

Callie just finished third grade. It was a good year, with the exception of shedding tears over math.

The kindness of children who are in Callie’s life always amazes us. Everyday, a group of girls has recess inside with Callie instead of going outside to run around on the playground with other classmates.

The girls play with mini Lalaloopsies, draw, or play teacher together. Friendship is one of the biggest blessings in Callie’s life.

Callie and her teacher

Callie and her teacher, Miss Packer.

There were bumps along the way this school year. In December and January, Callie completed the four loading doses of Spinraza and we ultimately decided not to continue with the treatments.

Nathan and I didn’t see any improvement in Callie’s strength or stamina, and we were putting Callie at risk with every treatment, which was administered by spinal injection.

We have always believed Callie should have a say in decisions that affect her life. After asking her on several occasions if she was sure she wanted to stop the treatments (something she’d been begging to do after the first injection), she finally said, “I can’t do that [Spinraza] for the rest of my life.”

It’s her life to live, and we’re grateful for the peace God has given her heart.

In February, after her ninth birthday, Callie got what we think was the flu with recurrent pneumonia. She stopped eating and, for a couple days, was withdrawn and not very interactive.

After an uncertain couple of weeks, Callie began improving, and we’re grateful for the additional time we’ve been given with her.

As always, Callie is making the most of her life. She’s looking forward to a busy summer:

  • We recently got a trailer that hitches on to the back of Nathan’s bicycle for Callie to ride in. Not being able to ride a bike has always been one of Callie’s greatest heartbreaks, but she was determined to do the next best thing. She loves it.
  • We had Vacation Bible School this past week, something that’s always one of the highlights of her summer.
  • The minute she heard about a cheerleading camp, she wanted to be signed up, even though it’s a new place where she doesn’t know anyone.
  • We’ll be making a trek to the beach where she’ll no doubt want to stay outside all day.

So many people help give Callie the high quality of life she has.

Callie with her nurse

Callie with her nurse, Alisa.

Her school nurses, Alisa and Marsha, enable Callie to attend school regularly. Her teacher, Miss Packer, encouraged Callie through her tears and all.

Callie’s older brothers play such a significant role in her life. The grief of her diagnosis has gotten only more intense for them as they’ve gotten older.

Callie with her nurse

Callie with her nurse, Marsha.

But they’ve never distanced themselves from her — on the contrary, they play on the beach, pull her on a snow sled, have tea parties, visit Callie’s made-up universe called Twintopia, and cheer her on in everything she does.

Like any other child, Callie will get her feelings hurt or feel left out. She can get so tired that she can’t play like she wants to. But it never stops her from embracing life.

We take each day as it comes, and as long as we’re seeing her smile, everything feels okay.

Callie at the beach

Callie and her brothers at Carolina Beach.

Spinraza update

Callie has had three of her four loading doses of Spinraza. The second and third doses went well, although Callie had to stay overnight the third time around because her vital signs weren’t stable enough to go home.

We thought she would panic when she heard she’d be staying overnight, and her panic would have made her respiratory status even worse. But she actually said she needed to stay. For us, that’s evidence that God provides peace in all our hearts when it’s needed most. She steadily got better during the night and we went home the next day.

She’ll receive her next dose at the end of this month. But before then, she and I are taking a girls’ trip to the mountains (with Nathan coming along as well). Callie and I have a couple books to read together, and we plan to do what we always try to do — enjoy whatever each day brings.

Moving forward

Callie is now a third grader.

Callie with her tea set at the beach

Callie with her tea set at the beach.

Over the summer, she spent her mornings eating waffles with syrup and toast drizzled with honey. She played Minecraft on the PlayStation with her brothers, went to Vacation Bible School, and played on the beach. I’ve also been reading aloud the Harry Potter series to Callie and her brother Peter. With a homemade wand in her hand, she goes back and forth pretending to be Hermione one minute, then Harry the next.

Over the summer we also learned that Callie has received approval for Spinraza, the new and only treatment available for SMA. The drug is administered as an injection into the spine and Callie would receive the injection several times a year for the rest of her life. We’re hoping to start her injections within the next couple of months. There’s no guarantee the medicine will help, so it’s been a difficult decision to make.

Nathan and I are always weighing the pros (potentially seeing a mild increase in Callie’s arm strength) against the cons (an invasive procedure that will require sedation) when we make medical decisions for Callie. We plan to move forward with the treatment because we think there’s a chance it can improve Callie’s comfort and quality of life.

Snack time at Vacation Bible School

Snack time at Vacation Bible School.

One thing that has had a significant impact on Callie’s level of comfort is the rapid progression of her spinal curvature, known as scoliosis. Although we know Spinraza cannot reverse the damage SMA has already done to her body, we recently got X-rays of Callie’s spine in order to examine the extent of the damage, as well as determine if there’s any kind of intervention that might allow Callie to benefit more from her Spinraza treatment.

We learned that a spinal curvature of greater than 40 degrees is considered severe. Callie’s curvature is 120 degrees. After discussing a number of scenarios with a pediatric orthopedist, who regularly cares for SMA patients, we had basically one course of action: Admit Callie to the hospital and infuse nutrition straight into her veins to try to improve her nutritional status. We’d then have to use halo traction, a procedure that would involve putting 12-15 screws into her skull, attaching them to a circular metal device above her head — the “halo” —with weights behind it to slowly stretch her muscles and spine in preparation for surgery.

Then, if she tolerated the halo traction and managed to gain weight, she could have back surgery with a tracheostomy placed. When we told the orthopedic surgeon we’d already decided against Callie having a tracheostomy, he said if we didn’t consent to a tracheostomy, he wouldn’t do the surgery. Based on his experience and research, she wouldn’t be able to come off the ventilator after surgery, so without a tracheostomy for breathing, he would be performing a surgery he knew would be fatal.

Nathan and I have done plenty of research on this topic, so none of this surprised us. But it was still very hard for me to hear. In the few months leading up to this orthopedic appointment, I had allowed my mind to drift towards things that might magically come true, thanks to Spinraza. I’d allowed myself to hope that Callie might even walk one day. Sitting there in the doctor’s office sealed what I already knew to be true — this dream of Callie’s, of our entire family, was impossible.

I’ve had to do my best to let go of that and move forward. After all, as Albus Dumbledore told Harry Potter, “It does not do to dwell on dreams and forget to live.”

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Happy 8th birthday Callie!

Callie enjoying our big snowstorm last month.

Callie enjoying our big snowstorm last month.

Callie is 8 today! She’s very excited about the big day, just like any 8-year-old would be.

Days like this remind us how normal our lives are, despite the time and effort Callie’s care requires. We have support from so many people — nurses, people who have given money, Hospice of the Piedmont, co-workers who generously prepare a meal for us every week.

We are grateful for this help because it helps Callie live a life that is not defined by her diagnosis. Life seems so normal that, sometimes, when someone asks how Callie is doing, it takes us a second to recall the details of her daily challenges.

This sense of normalcy has been disrupted over the past six weeks, ironically, by a piece of very good news. The FDA on Dec. 23 approved a treatment for spinal muscular atrophy. The drug, Spinraza, could be available for Callie this spring or early summer. Had this drug been available when Callie was younger, it might have rescued her from the devastating effects of SMA.

Now, though, SMA has twisted her spine. She has contractures, subluxations, almost no muscle mass. She is weaker and more vulnerable than ever. She can sit up for shorter time periods. She depends on her bi-pap machine for breathing support every day. This medicine has arrived too late to prevent these effects for Callie.

But her spirit is so strong, and we’ve learned not to underestimate Callie’s determination. So over the past few weeks, we have been considering whether this new treatment could help Callie even in small ways. We know it won’t reverse the damage SMA has done to her body. But could it help her stay in her power wheelchair longer, giving her more independence? Could it give her enough strength to sit up longer, which could enhance her quality of life by allowing her to interact more with friends and family?

callies-cakeOr would the treatment only slow the progression of her condition, requiring her to endure more pain with little or no benefit to her quality of life? There are no simple answers.

Next month we have an appointment with a neurologist, and we’re hoping he will provide some more information to help us determine whether this new treatment would be good for Callie.

Until then, she’ll celebrate her birthday with food from Barberito’s, one of her favorite restaurants, and a cake with a snowman family on it that Callie helped design. This coming week she’ll go to school hoping the cafeteria will serve her favorite lunch, beefy nachos. She’ll watch her favorite shows, Sofia the First and Phineas and Ferb. She’ll draw pictures, tell jokes, and live her life.

Second grade and summer recap

Callie at school

Callie on the first day of second grade

Callie is in second grade this year. Her nurse during the school day knows her well, and Callie has the same teacher her 8-year-old brother Peter had last year, so the transition has been smooth.

Callie’s spring and summer were filled with activities. The highlights for her were a trip to Carolina Beach in May and Vacation Bible School at our church in July. Callie loves to sing, even though it can make her really short of breath. We love to listen to her sing because she has such a classic, out-of-tune, child’s voice (video below).

This fall, just like last fall, Callie is a cheerleader. At first, we weren’t sure if it was worth the risk because she’s weaker and has more difficulty maintaining a comfortable position than she did last year. But not long before the season began, Callie said, “Why haven’t you signed me up for cheerleading yet?”

There’s always an undertone of anxiety that feels as if it’s settled in our hearts permanently. It doesn’t take much – Callie needing oxygen at night; seeing a tired look in her eyes – for it to rise to the surface. We constantly remind ourselves that this is her life, and no matter how tired she is, she insists on living it to the fullest.

We’re going back to Carolina Beach again soon. Callie and Peter made a list of things to do while there. Some of the highlights include eating dinner on the balcony, watching the sun set, sleeping in the bunk beds, getting up at dawn, eating bacon and eggs, and drawing in the sand. With the exception of getting up at dawn, we’re looking forward to it.