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, 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 She stopped eating and, for a couple days, was withdrawn and not very interactive.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, 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, 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 and her brothers at Carolina Beach.