When my son Maceo was born, there was no breath in his body. He was grey and shaking and my doctor looked mystified.“What’s happening?” I asked. “I don’t know,” he said gravely, his voice trailing off. After an ideal pregnancy and a short labor, my son had gotten hurt on his way into the world. We spent two months in NICU, which is the Neonatal Intensive Care Unit for the uninitiated. The doctors were dire in their predictions. Maceo had suffered a brain injury due to a lack of oxygen leaving him with the immediate diagnosis of Hypoxic Ischemic Encephalopathy, which eventually resulted in diagnoses of Cerebral Palsy, Chronic Lung Disease, Swallowing Disorder and Cortical Visual Impairment.Today Maceo is a vibrant, music loving nine-year old who is learning to use a head mouse with his communication device and lights up a room with his smile.
Back then, we didn’t know any of this and we didn’t understand what was going on. The doctors took us into a dark room and keep saying “It’s bad. It’s very bad.” Finally we said “Ok! We know it’s bad. What can we do?” They said “It’s very bad, every area of his life could be affected but you can get Regional Center services and someone will come to your house and watch him so you can go out to dinner once a month.” We were like, “Huh?” We were stunned, confused and also angry at the lack of constructive communication from the medical professionals were dealing with. They looked at us like we were absolutely crazy as we expressed our love, our hope for our boy and our endless questions about what we could do to help him. We switched hospitals, cleared all pessimists and naysayers from our team and sought out professionals who corroborated our hope. The first two years were arduous as we tried to figure out how to take care of our guy. There was medical equipment, a suction machine, pulse oximeter, food pump, g-tube, in-home nursing, therapies, sometimes 3 a day and sometimes 90 minutes away. We had a hyperbaric oxygen chamber kindly donated to us and we built a crawling track for him to move down hoping to organize left and right sides of his brain.
All of that said, even back then, we have always had a lot of fun at our house! Challenges notwithstanding, for both my husband Joe and I, life is infinitely better since Maceo came along. He is persistent, funny and loves music more than anyone I’ve ever met. I am a musician and my husband a passionate music lover so there is always music playing in our house. When he was a baby, Maceo’s body used to be very tight, wound up like an infant-sized coil of wire. Due to the dystonia in his body from his brain injury, his main physical expression when uncomfortable which seemed to be most of the time, was arching back and turning his head to the side. In those days we used to roll him from side to side on his back, pushing one knee up to his belly and rolling him over then back to center and then the other knee up and rolling to the other side. This was the one thing that eased his discomfort, getting him out of extension and relaxing his body. And then one day, sitting at the computer with my husband Joe, something else happened. Joe put on “Human Nature” by Michael Jackson and Maceo transformed. Right as the first couple of notes of the opening riff played, his eyes opened very wide, he turned toward the screen and every drop of tension left his body. Joe and I looked at each other, looked at him and back at each other in amazement. It was like magic. Maceo has been a music fiend ever since and it should be noted, he is THE most opinionated person about music that I’ve ever met.
When Maceo was two I caught up on the phone with a songwriter friend of mine Pete Glenister who lives in London. We had lost touch for a while and he said, “What are you up to these days?” I said, “Well, I’ve got this amazing kid, Maceo.” I told him what we’re working on, sharing some of the ins and outs of our journey and to my great surprise, he said, “That sounds beautiful. I’d like to write songs about that.” “Really?!” I said. He said, “Yes, I think you should share your life in your music and I’d like to do that with you.” It took us six years to write and record A Family Album as Pete lives in London and I live in Los Angeles, and also, you know, life! We started writing over Skype, sending each other ideas back and forth and whenever we had enough songs to finish, I’d head over to Pete’s place and get ‘em done. Eventually, we had a finished album which turned out to be a collection of snapshots of our family, and so we decided to call it A Family Album.