My 19-month-old son, Spencer, is a rock star. Music is ingrained in his DNA. It really doesn’t surprise me since his dad and I have been schooling him since before he was born. When I was pregnant, his dad and I would fight over what type of music “the fetus” would listen to in the car—Metallica or Phantom Planet. I would drum on my stomach along to Nofx songs and Spencer would kick right along. I sang The Gaslight Anthem songs and played MXPX on guitar for him and he would “dance” on my bladder. His dad was waiting for the baby to come so he could brainwash him into being a heavy metal kid. I was planning on sharing my love of punk and indie with our little bundle of joy. Needless to say, we knew Spencer would love music just as much as we do, and he does. His face, his entire body, lights up when he hears music notes.
Music didn’t even fall on the back burner when Spencer was born with a very rare genetic disorder and spent the first three months of his life in the NICU at Cincinnati Children’s Hospital and Medical Center. We requested a bedside CD player and his dad brought in Iron Maiden. We are fairly certain Spencer and his roommate stayed up all night, every night, rocking out to “The Number of the Beast,” and having wild parties with the preemies a few beds over. The nurses didn’t approve.
When Spencer failed his newborn hearing screen, we just shrugged it off; we had more than his hearing to worry about. When he failed his first ABR, a more comprehensive hearing test, the audiologist reassured us that it was because he had some fluid buildup in his ears. After we came home the hearing stuff was quickly forgotten amongst his medical conditions.
Along the way, I began to suspect that Spencer couldn’t hear me. He would acknowledge I was talking, but never seemed to respond to my voice, unless I was singing to him. While he never responded to me, he seemed to hear his dad fine, as he has a really deep and monotone voice. Loud noises never bothered him. A train could have come through the house while he was sleeping and he wouldn’t have flinched. I chalked it up to him being a NICU grad and being used to the constant beeping of machines at the hospital. After a while, it was apparent to me that it had to be something more than just being used to noise. I was reassured by multiple doctors that it was all due to fluid in his ears, so hearing impairment never crossed my mind.
We found out that the Spenceman had moderate to severe hearing loss shortly before his first birthday. During his PE tube placement due to chronic ear infections, an ABR and bone conduction test were done and showed that Spencer needed hearing aids. Everything was a blur as the audiologist explained her findings and told me that she fit him for ear molds. Our kid was only supposed to have gunky ears that needed ear tubes, not life-long hearing loss that needed hearing aids.
As I waited for Spencer to get out of surgery, I didn’t cry. I was numb. In my ignorance, I mourned momentarily for all the things that he would never be able to hear correctly. All the music he wouldn’t be able to enjoy and the music he wouldn’t play. I mourned for the rock star he would never be. I looked up at the ceiling in surgical waiting and asked the heavens, “what else?!” And then I started laughing. I laughed at the irony of it all. The hearing loss diagnosis was the breaking point for me and his giant list of mostly non-life threatening medical conditions became comedic. I realized that hearing loss was just one more thing we would figure out along the way, and mentally started finding sign language classes and planning how we would introduce Spencer into the deaf community.
A Love for Music
His dad and I had planned on buying Spencer a piano for his first birthday. We couldn’t decide if we should still buy the piano since we didn’t know what he would be able to hear. This was all before he got his hearing aids, so we didn’t know quite what to expect. After many weeks of trying to figure it out, we decided to get the piano anyway because we vowed from the beginning to never treat Spencer any differently because of his disabilities.
Spencer was fitted for his hearing aids shortly before his birthday. We chose baby blue ones with blue ear molds. On his birthday we put his “ears” in and put the piano in front of him. Immediately Spencer started playing the piano like he had been playing all his (short) life. We had to tear him away from it so he could open all his other presents. Seven months later, the piano is still his favorite toy. He will sit and play it for hours, completely focused. Spencer actually makes beautiful music rather than just pounds the keys, like most children his age would. I’m convinced he’s a prodigy.
The kid who we were convinced wouldn’t share our love for music is obsessed with it. Mozart will calm him down during tantrums. He “Doodlebops” (dances) to commercial jingles. He stays glued to the TV when he hears the theme song for Star Trek. He ferociously attacks any toy that makes music. He drums on any flat surface. He is also starting to sing. We are pretty sure he was singing along with “Enter Sandman” in the car the other day. He will imitate the opening wail from Led Zeppelin’s, “Immigrant Song.” He also has favorites, such as Queen and Tony Sly. While he prefers Lady Gaga over Against Me and Pennywise, what matters is he has preferences, as terrible as they may be. He is a toddler after all.
My kid definitely has song in him, something we embrace every day. His love of music has also taught us an important lesson: to never underestimate our kid. I have absolute confidence that Spence is going to grow up to be a world famous musician. There are plenty of musicians with disabilities out there, so why can’t Spence be one? After all, Beethoven was deaf, wasn’t he?