Category Archives: Holidays

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.

Our 7-year-old

callie-7

Callie turned 7 years old today. Zaxby’s was her choice for dinner, followed by a strawberry cake with a snowman on top.

We’re glad to have reached this milestone. With each birthday comes an awareness that it could be her last. We feel that very acutely this year. We’ve seen some recent changes in Callie’s overall strength and fatigue levels, and her last illness was the most severe we’ve seen in years.

We’re so grateful for the time we’ve been given, and we’re proud of her determination, spunk and kindness.

Happy Birthday to our one and only girl-baby.

Six!

callie-6Yesterday, we celebrated Callie’s sixth birthday. She took mini-cupcakes to school and for dinner, Zaxby’s was her restaurant of choice. Her favorite presents were mini Lalaloopsy dolls – a perfect gift for children with muscle weakness – and a tiny, shelf-sized guitar.

callie-guitarDespite a couple illnesses, Callie’s health has been good overall. She’s determined and continues to excel in school, despite needing frequent breaks. Her teacher and nurse are wonderful and regularly adapt activities and play time so Callie’s always included.

Birthdays tend to be bittersweet for our family. It was around Callie’s first birthday that she wacallie-dollss diagnosed with SMA. With each year, we’ve watched her personality and intellect explode with curiosity as her body has grown more and more fragile.

We’re grateful that Callie has reached this birthday, and we are looking forward to the next.

Wedding fun (and other news)

Alicia and Callie

Alicia, the bride, and Callie before the ceremony.

The event of the spring for our family was my sister’s wedding. Alicia got engaged last August and asked Callie if she would be her flower girl. So from August until April 19, when she started down the aisle in Nathan’s arms, flower basket in hand, she talked constantly about her upcoming job.

And boy did she relish her role! With a happy, yet serious, smile on her face, she dropped the petals one by one—on her way in and out of the ceremony.

Callie and Nathan

Nathan helps Callie, the flower girl.

The wedding couldn’t have been at a better time because Callie has had several illnesses this spring—some before and some after the wedding. She would’ve been heartbroken if she had missed the wedding.

As always, those illnesses took a toll on our family. We’ve been concerned because she’s never had so many problems in such quick succession. With each illness she becomes weaker and as a result, more vulnerable to complications. She finished her most recent course of antibiotics a week ago, and we’re anxious to see her return to her typical strength.

For now, we’re looking forward to our extra time together this summer before our big girl heads off to kindergarten in the fall.

5 on the 5th

Today Callie is officially a 5-year-old! And she’s certainly proud of it. She talks constantly about all the big-girl things in her life — soon she’ll get a special big-girl bed; we take her to the potty like a big girl; and she’ll start kindergarten this fall.

Callie's 5th birthday

Callie opening her birthday presents.

Last year on Callie’s birthday, she was starting to get significantly ill. We’re so grateful that we’ve had another year with her. But in all honesty, there is always a sadness we feel, particularly during celebrations.

Callie asked for a bicycle this year, thinking she could ride it. Then she asked for crutches, thinking they would help her walk. Our oldest son Isaac, who’s 12, asked us to look on the Internet to see when a cure is coming for SMA.

But oddly enough, this disease has also brought us joy. The joy of listening to Callie interact with her nurses who come to care for her at night. The joy of seeing her 3 brothers naturally adapt whatever game they’re playing to accommodate her. These are things we never would’ve known without SMA.

In Callie’s 5 years, we’ve learned that sadness and joy can both exist at the same time. And once again, we’re grateful for this time.

Happy Birthday Callie-girl!

Summer news

Next week Callie will start her last year at Child Enrichment Preschool. Summer has been enjoyable and fleeting for our family. We live near a YWCA where our older boys have been swimming almost every day. And Peter and Callie enjoyed their 3-day-a-week summer preschool sessions.

In early July, Callie had an appointment with Dr. Kravitz, her pulmonologist at Duke. Her lung tests looked good in that they’ve pretty much stayed the same with no decrease in capacity that we can tell.

Callie on boat rideSince Dr. Kravitz is Callie’s primary specialist, we also discussed our continued commitment to a palliative approach with Callie’s care. With SMA, there is no treatment, but there are many interventions that can be done. It’s easy for us to cling to the idea that these interventions can somehow save her. They can buy her time, but at what cost?

Callie’s spine is now curved forward and we know that eventually it will impact her lung function, if it hasn’t already. We could put rods in her back, but we’ve chosen not to. Even if we found a surgeon willing to operate on her, it would take Callie away from everything she loves: her school, her home and her family. She would be in tremendous pain. And to what end? What would be next? As horrible as it is, our little girl was not made to survive.

I have a friend who was watching her husband die from ALS. She said to me recently, “I’m trying not to make selfish decisions.” That’s how we feel as well. And truth is, the longer we prolong Callie’s life, the more we put her at risk for more complications and more pain.

Callie on beachThere’s a different kind of pain associated with SMA that Callie is now experiencing: the pain of knowing she’s different. She talks a lot about walking. We’ve been honest with her and have told her that she will walk when she gets to heaven. But just a few days ago, she asked Nathan if he would teach her to walk.

This summer, with the help of our children’s social worker with Hospice, we took our older boys, ages 10 and 12, out for an evening and told them that Callie is likely to die from SMA. Back in February, two days after her birthday, we almost lost Callie. She’d already been sick, but suddenly her muscles were too exhausted to coordinate her breathing. Her oxygen levels dropped, her heart rate spiked and she turned gray. We had to force oxygen into her lungs and it took a total of 8 mg of morphine to relax her muscles enough to where she could coordinate her breaths on her own again.

Our oldest son was at a friend’s house that night. We realized he could’ve come home and his sister could have been gone. We don’t want our children to feel the responsibility of adult problems, but because of SMA they do have adult problems and we need to all be able to talk about it honestly.

Callie and NathanLast week we went to the beach with my family and had a great time. Callie absolutely loved it! We took her bath seat and put it in the sand and let the waves wash up to her.

We also had an unexpected surprise: My little sister got engaged while we were there! The wedding is set for the spring, and Callie’s been asked to be the flower girl. She’s very excited about getting a pretty dress and the importance of her job. She could drive her wheelchair down the aisle, but I’ve been thinking that maybe her daddy should carry her down the aisle.

Snowy days

Three years ago we never could’ve imagined Callie being on a ski slope. But last week she was.

Callie has always wanted to make a snow angel, and she insisted on giving it a try.

Callie has always wanted to make a snow angel, and she insisted on giving it a try. Click on the image for more photos.

Callie wanted to go some place snowy, so the Make-A-Wish Foundation sent us to Smugglers’ Notch ski resort in Vermont. No one in our family had ever set foot in skis so we were in for an adventure.

We packed our car — yes, we drove — and traveled two days and 1,000 miles to Vermont.

Smugglers’ Notch has an adaptive program for people with special needs along with specially trained instructors, so they were more than equipped to handle Callie. Callie used something called a Bi-Ski, which is like a little sled with skis on the bottom. After getting over her initial fear of having strangers customize the seat to meet her needs, she had a blast. She even got to go on the ski lift!

Smugglers’ Notch had all sorts of other fun things that Callie loved — a Ben&Jerry’s ice cream shop, shuttle buses, a heated pool and special Smugglers’ Notch mascots. Callie was particularly fond of Mogul Mouse.

The staff there was amazing! They gave us all ski or snowboard lessons and made sure we had the appropriate ski equipment and clothes. After our first day out in the snow it became clear why they said we really shouldn’t ski in jeans.

We’d like to especially thank Smugglers’ Notch public relations director Karen Boushie who coordinated our stay and went above and beyond to make Callie’s trip special. She arranged a sleigh ride at a nearby farm and took care of many little important details that tend to get overlooked.

We’d also like to thank Alisa Anderson, who manages the special needs program and was Callie’s instructor. Her last-minute flexibility and accommodations based on Callie’s specific needs at the time were invaluable.

Gene, one of our instructors, was Peter’s constant companion for three days. There’s no telling what Peter told Gene about our family. Fortunately Gene doesn’t seem like the blackmailing type.

And, of course, this trip would not have been possible without the staff and donors of the Make-A-Wish Foundation. We’re especially grateful for Liz Patton, Callie’s wish coordinator.

We had a wonderful three full days in Vermont and were sad to leave. But we packed up our car — again — and drove two days and 1,000 miles home.

It was truly a once-in-a-lifetime opportunity.

Our birthday girl

Today is Callie’s fourth birthday. She’s been talking about this day for months.

Callie wanted pink cupcakes to share with her classmates. Those are ready. Callie’s nurse Marsha gave Callie some restaurant gift cards so we could go to one of Callie’s favorite restaurants. Most of her presents are wrapped. One of the teachers at her preschool made a snowman cake.

callie

But Callie has been getting weaker over the past few days, and yesterday (Monday) she started coughing a lot, and she has a runny nose.

This always seems so sudden and unexpected to us. We’re hoping this is just a minor cold that we can fight off over the next few days. But we know, too, that Callie is very weak and vulnerable.

Today is her birthday. Over the past four years Callie has taught us how to adapt our plans to what’s really important, and that’s what we’ll do today. Instead of going to school we’ll see about dropping by just for cupcakes. We will enjoy take out if Callie is too tired to go out.

We’ll have a good day, but we’re also worried. So we ask those who are inclined to send up a prayer for our birthday girl.

Happy birthday, Callie!

The new year

Callie is doing great. For the first time, she was really excited about Christmas this year. On Christmas Eve as we put her in bed, her head was shaking back and forth non-stop. That’s one of the main ways she shows her excitement.

Callie lives a good life. She talks almost all the time at home. She’s a little more shy in public, but not much.

She’s become a pro with her power wheelchair. She can maneuver it through tight aisles at the grocery store. The chair has a horn, and she hasn’t quite learned good horn etiquette. She and her 5-year-old brother Peter are quick to honk the horn at people who stop in the aisles.

We stay busy just taking care of Callie’s daily needs and the needs of her three older brothers. So we do not have much time to think about the future.

But the new year that begins tomorrow naturally brings thoughts about the next 12 months. Callie is so vulnerable. There’s always the possibility that she will catch a cold or a virus that she can’t get over. Will this be the year?

Those aren’t thoughts that we dwell on. We’ve gotten pretty good at thinking about only the present. In the present, all members of our family are here with us. We have food to eat and a safe place to live. Nothing else really matters that much.

Our thoughts and prayers go out to those whose lives are incomplete in this new year.

We also cannot begin to thank the people who have shared so much to help our family over the past year.

Happy new year.