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1) As far as I know this is the first album about raising a child with disabilities? How does that feel and what do you hope this album does for the disability community?

When my songwriting partner Pete suggested I write about my family, I was sort of horrified. No way, I’m an ‘artist’, nobody wants to hear about THIS. He made the point that most people, unless they know and/or love someone with a disability probably have no idea what it might be like or how it all might work. He said people might be interested to learn a few things – that we are a family like all other families, that there’s joy, music, and LIFE at our house, just like in everybody else’s house. I thought I needed to keep my music separate from my motherhood. But when I thought about it, I realized, there’s actually nothing else for me to sing about. My family is where my heart is. Through the process, it turned out to be helpful to me to be able sing about what we were going through. My hope is that A Family Album is illuminating with regards to families living with disability, in that we go through the same stuff that the all families go through, highs, lows, laughs, troubles, love and most importantly, joy – even if what we have to deal with might look insurmountable from the outside.

 

2) How did your son Maceo influence your perspective on life and of course, music?

Maceo has influenced my life and my music in pretty much every way. To boil it down, I don’t know WHAT I was thinking about before he came along. I know I was trying to work hard, make good music and be a good person.  But, I was sort of unmoored in life. When Maceo came along, that’s when life got good. Those first two years were difficult, but we always had each other and the love that erupted in our house with Maceo on the scene has been transformative. The hard parts might be hard as you could imagine, but somehow those are not the most important parts. That’s the biggest lesson that Maceo has taught me.

 

3) Two tracks are written from your son Maceo’s POV. What went into writing those songs? How did you tackle the responsibility of being authentic to Maceo’s voice?

Internally, this was something I resisted for so long. He was only five years old at the time and I didn’t want to be inauthentic to his voice. However, as a mom I want him to be known. I wanted to give a voice to what he might be feeling with the caveat that if he hated it or even disliked in the future, we would rewrite it together. I remember standing in a parking lot at the beach in Santa Monica and finally finding the courage to press record on the voice memo app on my phone. I tried to imagine what would Maceo might say to me and these words came out.

I can hear you 

And I know the words you’re saying

But when I go to answer 

I can’t forms the words

I can see you 

And I like the game you’re playing 

But when I try to join you

I can’t make it work

But one day

Things will change 

And I will rise above

And we will understand each other

And you will feel my love

By the time I was finished, I was crying. When I got home, I sat with Maceo, told him what I was trying to do and asked him if it was ok with him. He answered “yes” either by rising his left hand or using his iPad. I can’t remember which right now! This is called Multi-modal Communication which is how many non-verbal people communicate. It means, using whatever means is possible in the moment – whether that’s a device, a switch, looking away, a blink etc. Getting his “OK” for the concept in general, I said the words to him. He indicated he liked them and after we recorded it, I played him the record. The smile of approval he gave me was a huge relief. I told you, he’s super opinionated about music and the fact that the music and the words made him happy meant the world to me.

 

4) Can you discuss the song that most adequately describes your journey with your son and your family?

The song that most adequately describes my journey with my son and family is, “We Love.” All marriages have their challenges and for parents of kids with disabilities, this is amplified. Statistics on divorce in special needs families tell us that 8 out of 10 marriages don’t survive. The chronic stress takes a toll. After writing a couple of songs about troubles we’ve faced, I wanted to write something for Maceo’s dad about how he makes it all work when some days, it just feels so hard. Whether it’s installing mounts for communication devices, a saddlebag hack for Maceo’s wheelchair, keeping us all in incredible music at all times or creating amazing wheelchair costumes for Maceo at Halloween – Joe makes our whole world go round. I wrote a poem about it and from that poem came these words: “With grace, with grease, we love.” Later I realized that though the song was written about Joe, it’s also about all of us loving on another. “In war, in peace, on backs and hands and knees.” The way we get through the really tough times is to love each other however we can, with whatever means at hand and in whatever situation we find ourselves in. That is how my family has gotten though our journey.

 

5) “Family” is such a fun song that shines light on Maceo’s self-confidence. Can you explain what went into the making of that song and the importance of living loudly?

“Family” is definitely the party song of the album! There are many physical challenges that Maceo contends with but in spite of that, he is a self-possessed and confident kid and that’s what this song is about.

If this fun song were to inspire even one little bit more loving, laughing and celebration that would make me happy, cause those are the things we need in this crazy life. We need those feelings to give us energy for the things we all need to do every day.  This is important when you have a child with disabilities for a few reasons, as it is for parents of typical kids – our days are long, we get tired, we get drained, we get stressed. We need all the energy we can find, to get all the things done on a daily basis that our family needs, not to mention to offset the attendant and often times chronic stress in our lives. Most importantly, all kids need their parents to be in a good frame of mind.  When the parents aren’t happy, a kid feels it and it affects everything they do. Kids with disabilities have so much work to do every day, learning how to do the things that most take for granted. They need all the support in the world and that starts with their parents.

 

6) You are generously donating some of the proceeds to the Cerebral Palsy Foundation. Can you explain why you chose them and the work they do that you find the most impactful?

I admire the Cerebral Palsy Foundation very much for the focus they place on improving lives of those with CP today and particularly the way that focus extends to families and parents. One incredible tool that Cerebral Palsy Foundation has developed is their CP Channel app. It’s for people with CP, families, friends, and also therapists and general practitioners who want to know more about the condition. There are videos from doctors and experts in all the fields pertaining to improving lives and caring for people with CP. There’s so much there! It’s a treasure trove of support for families. What strikes me the most is how much it will mean to new parents of infants born with brain injuries like Maceo. It was such a crazy confusing time. If I had had this app back then, I would have gotten such comfort, understanding and instruction at a time when I desperately needed it.  In addition to the learning about concepts like neuroplasticity, early activity and other more technical data, just hearing Dr. Nathalie Maitre on the app talk about parenting a kid with CP, made me tear up with relief and joy.

Read Holly’s story.