"He keeps me singing as I go"

Jackson and Darrell spent Tuesday night at the Texas Children's Health Center—this time to fit Jackson with a sleep mask and determine the right amount of oxygen to pump into it.

I don't know why I thought he would be wearing only the mask (wishful thinking I guess), but he was outfitted with all the electrodes and restrictive paraphernalia as during the sleep study, plus the mask, which was much bigger than I anticipated. How pititful is this photo? I can't imagine trying to sleep with all that on.

After repeated adjustments of the oxygen level throughout the night, the correct level was finally determined and Jackson slept peacefully for a few hours. When he awoke, with the mask still on, he started singing "Old MacDonald Had a Farm." I'm sure he was really glad that the night was over. "E-I-E-I-O" indeed.

Williams kids have a profound affinity for music. As a baby, music would soothe Jackson when nothing else could. As a young child, he would listen with tears in his eyes to Ray Charles' soulful rendition of America, the Beautiful. And Jackson's musical tastes have no bounds. He likes it all!

What really thrills my heart is that he recently began singing. Up until two years ago, Jackson's vocabulary was limited to "yeah" and "huh." Now he communicates verbally, although he's not easy to understand. I sometimes have to ask him to type on the computer what he's trying to tell me. But when he's singing a song I know, I can tell by the melody alone. And his pitch sounds perfect.

In a store with Mema the other day, Jackson loudly sang "Ring of Fire" by Johnny Cash. She knew what he was singing not only by the melody, but by his fairly clear pronunciation of "down, down, down," which he accompanied with hand gestures.

While spending the night with me Thursday, Jackson was on the computer for hours. He searched for body sprays and watched an odd assortment of videos. The whole time, he kept a separate browser window open in the background with songs playing that he sang along with intermittently. After "Ring of Fire" played about 30 times, he swtiched to a cartoon Mickey Mouse Club song. I was sitting on the floor next to him and reading, and realized that I couldn't understand any of the words he was singing. Looking up, I discovered it was the Norwegian version of the song! What an amazing child God gave to us.

Jackson typed the word "mall" and pointed to it, so I said I would take him in the morning. The next time I looked at the computer screen, I saw a Google map to Willowbrook Mall. I assured Jackson that I remembered how to get there and that we would go the next day. The first word he said when he woke up was "mall."

In three differerent stores, Jackson covered his hands and arms with nearly every tester spray they had. He often broke into song and even danced in one perfume department where the piped-in music was loud. Getting into the swing of things, I mixed a few scents on my body as well and occasionally accompanied him on the chorus of "Ring of Fire."

On the way home, we stopped at the grocery store to get snacks. My sense of smell had become desensitized, so I didn't realize how we might attract more attention than usual. When I ran into a dear friend and we hugged, she commented on how very sweet Jackson and I smelled. That had to be an understatement. I explained to Bea why we smelled like we did, and if any Kroger shoppers who were there that day happen to be reading this, I apologize for what was surely an assault on your sense of smell.

During the night, I had woke up at 4 a.m. to find Jackson sitting in the bed and rocking. I rubbed his back and talked about how he'll sleep a lot better when he gets his mask, but Jackson adamantly shook his head no. The ENT doctor will write a prescription for the sleep mask next week. Please pray that my sweet boy will accept it.

Although he's had a lot to endure, Jackson has always seemed to have a song in his heart. I'm so thankful that the songs are on his lips now and we can hear them. In God's creation of Jackson, He gave him a special love for music. And in God's care of Jackson, He continuously gives him reasons to sing.

Everyone who knows Jesus has reason to sing. To hear the music, though, we've got to keep our focus on Him. Like the classic hymn says, "Jesus, Jesus, Jesus/ Sweetest name I know/ Fills my every longing/ Keeps me singing as I go."

I used to wish that life was like a musical. I realize now that with Jesus and Jackson, it actually is one.