“They say I must be one of the wonders of God’s own creation and as far as they see they can offer no explanation.” -Natalie Merchant
“Kick your legs never give up, boy. If I could I’d turn it around…you know the feeling when you’re in too deep and then you make it out the taste so sweet.” -Dave Matthews
Generally I believe my ipod’s shuffle feature operates by random, pulling up songs with its teeny computer brain and mechanically creating sound waves. But every once in awhile it manages to surprise me with exactly what I need to hear. Recently the song was Natalie Merchant’s “Wonder”. I quickly discovered that Ms. Merchant wrote it while reflecting upon her own experiences with children with special needs, and it serves as an anthem for lots of unique people like Joel. I particularly like the artist’s own description of the song:
A few days later, John asked me if I had listened carefully to the lyrics of the song “Sweet” from the newest Dave Matthews Band release. I hadn’t. I liked the chorus, a melodic repetition of the word “sweet”. I had certainly thought of Joel since he embodies the definition of the word, but I realized that the bittersweet encouragement Dave offers his son is powerful. Apparently he wrote the song about his son learning to swim, but now I think of Joel and his fight to learn skills that most babies half his age have mastered. He works hard. every. single. day.
September and October flew by quickly for us as we added weekly (alternating physical and occupational) therapy at Children’s Hospital while adjusting to big brother Luke’s preschool schedule. Joel was also evaluated for speech therapy, particularly focusing on oral motor functioning. [He eats well, but he is still working on really chewing.] Currently we’re awaiting a speech therapy slot that fits into our busy schedule. He’s also still receiving monthly in-home visits from our county specialist and four therapists. Our OT at Children’s suggested we look into a more intensive therapy program offered through the hospital, which we will be investigating in the next few weeks. If it works out, it should help streamline our efforts into small group therapy sessions. Joel and I saw kids from the program this past week when they were trick or treating around the facility. He was completely taken with them, studying their every move. A good sign, I think!
Our team of doctors has been quite pleased with Joel’s progress. This week we dazzled our pediatrician when we discovered that our little guy gained two pounds in three months, putting him at the 15th percentile (as opposed to the 5th in July). The opthalmologist and visual therapist were impressed with the evolution of his sight, and his neurologist praised his overall strength and focus. Bloodwork recently showed a lower level of CPK than we saw in the spring (down to 318 from 476, with 270 being the upper limit of “normal”). We are also waiting for the official results of a precautionary echocardiogram and EKG from last week.
We learned last week that Joel has been referred to genetics because preliminary labs showed a duplication on his X chromosome. This could mean nothing or it could be something big/another piece of the Joel puzzle. And so we wait some more…
But this report of Joel’s development doesn’t begin to describe the joy contained in this one sweet, wonderful child. He is getting stronger, more observant, sitting longer (PR of one minute, but never for a camera!), army crawling farther, and vocalizing more each day. In his mind, Trick or Treat was a grand game of peek-a-boo in which he giggled and squealed his way around the block to find smiling faces behind doors. He doesn’t care about candy yet. People are the treat, even better if they smile and wave at him.
We are thankful that we live in a city with a top-notch Children’s Hospital and a team of experts dedicated to helping our son. We are thankful for friends and family who can see that Joel is so much more than his diagnosis. Most of all we are thankful for this boy (and of course his big brother) who has taught us more about unconditional love in 21 months than either of us discovered in our 30+ years before he came along.