Melody of the Heart

“Technology still wasn’t at the level of Facetiming and Skype, like we had later with Melody. We did do video chats and talk to one another every day. Then I would fly out with Jude to see him two or three times a month,” Lily answered.

“That sounds intense,” Giovanni remarked.

“It was,” Lily replied. Glancing over at me, she said, “I think we waited as long as we did for Melody because we hoped things would calm down some. When I got pregnant with her, I decided I would finally quit my teaching job.”

“Finally is right,” I said, with a smile.

“And how was it going out on the road with two children?”

Lily and I both groaned. “Very, very hard,” Lily answered.

“My greatest regret is we didn’t get our own tour bus earlier,” I said.

Lily shook her head. “It wouldn’t have mattered because I wasn’t ready to live on the road full-time yet.”

“What changed your mind?”

With a smile, Lily said, “When I saw Mia doing it with Bella, I realized I could do it with two children. I also decided then that I wanted to homeschool the kids while Brayden was out on the road.”

I bobbed my head. “Even though I wish we had the bus sooner, I’m still glad that Jude and Melody got to start out their lives with a little more normalcy.”

At that moment, a knock came at the hotel door. When I got up to get it, I found it was Melody. “Hey, sweetie, you’ll have to go back to AJ and Mia’s. We’re not finished yet.”

She shook her head. “No, it’s Lucy.”

I didn’t even have to call for Lily. She was off the couch in a flash and heading out the door. When I came back to the couch, I gave Giovanni a sad smile. “I guess that makes a good segue into talking about our third child.”

“I hope I didn’t appear to be treating it as a sensitive subject.”

“No, you’re fine.”

“I know that you and Lily have been very open in the media about her being on the Autism spectrum with Sensory Processing Disorder.”

“Yes, we always felt it wasn’t something we should hide. Since I was in a position of celebrity, I could raise awareness and funds. With Rhys’s help, we’ve done a lot of fundraising.” I shifted in my chair. “Of course, there’s a lot of research that argues that SPD isn’t a part of the Autism spectrum while other research does. We figured it would be best to combine our efforts with the two.”

“I have to be honest that while I was with your children earlier, I didn’t notice anything different or out of the ordinary. She seemed a bit shyer than your other daughter.”

“She is naturally shyer and quieter than Melody.” I couldn’t help laughing. “Considering Melody started talking when she was barely old enough to be walking, it wouldn’t take much to be quieter.”

Giovanni smiled. “I see.”

“But you’re right. You wouldn’t notice anything right off hand. If you wanted her to give you a hug when you left, she would refuse not just because she doesn’t know you, but because she doesn’t like to be held or touched. Certain noises that wouldn’t bother you or me can send her into a meltdown. To some people, it would seem like little quirks, but it runs a lot deeper than that.”

“When did you first discover something was…different about her?” Giovanni questioned.

“Probably when she was nine or ten months old. We thought she was just going through a phase where she hated to be held, which broke Lily’s heart. She was used to rocking Jude and Melody to sleep until they were far over a year old, but Lucy began to cry until she was put in her bed. Then she would scream during diaper changes, baths, and anytime we had to change her clothes. Then as soon as we were finished, she would be fine.” I sighed as I relived those scary days where we didn’t know what was wrong with our sweet little girl, and then the day when we finally found out.

BRAYDEN

THE PAST

I rolled over in bed to find Lily’s side empty. Raising up, I squinted my eyes in the darkness. When I didn’t see her, I threw back the covers and hopped out of bed. After a glance in the bathroom turned up nothing, I went for the bedroom door. I had three good guesses where she might be, and the strongest led me to Lucy’s room.

It had been a hell of a day. Well, if I was honest with myself, it had been a hell of a few months. But today had us sitting in plush leather chairs in the office of Pediatric Neurologist, Dr. Peter Robsten. After our pediatrician had been unable to diagnose what was wrong, we had come to Emory desperate for answers as to what was wrong with our Lucy. She had been through a gamut of testing, which was terribly intense for a fifteen month old.

Then Dr. Robsten gave us the diagnosis we had been expecting to hear: Sensory Perceptive Disorder with Sensory defensiveness, which basically meant she experienced SPD with defensive actions to sound and touch. Although we had a name to go with what our fears and research on the internet had uncovered, it still didn’t give us a clear plan ahead on how to raise Lucy.

With the door to Lucy’s room already cracked, I slipped inside. Standing beside Lucy’s crib, Lily looked like an angel in the moonlight with her white, gauzy gown and flowing blonde hair. I came up behind her, wrapping my arms around her waist. After kissing her neck, I said, “I woke up, and you were gone.”

“I couldn’t sleep.”

“Babe,” I murmured.

When she turned back to me, tears glistened in her eyes. “I just kept lying there, searching my mind for what I did differently with her that I didn’t with Jude and Melody. Was it because I didn’t breast feed her as long? Was it because she was on the bus so much when she was just an infant? Was it because I gave her those vaccines on time? I mean, we were back and forth on the road with Jude and Melody, so they didn’t get theirs until they were a few months older.” Her agonized gaze went back to Lucy. “What was it I did wrong?”

A sob tore through Lily’s chest. The sound caused Lucy to stir in her cocoon of downy pink blankets. Wrapping my arm around her waist, I drew Lily to me. When she began to cry harder, I led her out of the bedroom. I steered her down the hall and back to our room and onto the bed.

Pushing her long hair out of her face, I stared into her eyes. “I want you to listen to me. There is nothing that you did wrong that caused Lucy to have a sensory disorder. Things like this happen. It isn’t a punishment for us or for Lucy. It’s just something we have to handle.”