First blog post

Can you have more than one life in a lifetime?

What if you could lead more than one life in a lifetime? I think as a person with a disability that’s something that has always been my dream.

When I was a child I wanted to be a poet or a cellular neuroscientist.   My poetry expressed my pain and hopes.  My interest in neuroscience was an effort to “find a cause and cure” for the ongoing health problems I experienced that went unanswered for my entire childhood.

I have Muscular Dystrophy, I got sick at 8 and diagnosed at 18. My arms shake in certain positions, no one to this day, can tell me why. I like to say the first few decades of my life I grew up in the health care system. I lived the life of pushing, getting though, ignoring, and getting on with it.

At 18 I lived the life of learning to shape my future, while nurturing my body.  I learned to know my limits, when to push past them and to grieve when I couldn’t.  I went to college and on to graduate school and swallowed my fear of economic survival. I spent my life methodically working to accomplish life goals, while at the same time feeling as if my body was swimming in quick sand, weighted down by fatigue, pain and frustration.

Into my twenties I grew into my identity as a woman with a disability — with all of the dynamics of navigating ableist notions of dating, sex, and love. I formed my career around my experiences in the health care system, helping the industry better respond to people with disabilities needs and teaching the disability community to navigate a system far to complex, inefficient and economically cruel.   I often feel I haven’t done enough to change the system but this is one of my lives…

At 36 I had a baby. My experiences after his birth and the lack of community support for mothers has started me down the path to another life…

I live in Silicon Valley — the techno hyper driven southern side of the San Francisco Bay Area.   The highway to some of America’s most brilliant, creative people. A place where “transformative” change is the mission that drives every breath, fuels every waking moment and haunts many sleepless nights of inhabitants. Nestled into several small towns; winding bike paths make their way through rolling hills of office parks, strip malls, typical houses and DOT.com mansions, all mashed together to form one the most inspiring and yet narcissistic places on earth.   Living in a land of engineers offers a certain level of logical comfort. This continued focus on logical control is romanced by the inspiring youthful energy of intense dreamers of tomorrow’s future.   It also is a place where as mothers we are pushed to LEAN IN.  To Strive to be great and to get support so you can change the world, one over achieving success at a time. Get support from where?  Your parter?  The person you hire?  Your day care center?  Is this the real support we need?

I think mothers don’t have the support we really need. We aren’t allowed  to admit that life with kids is hard, navigating our relationship with our partners is hard and keeping our identity of what we want our next life to be after out kids is even harder.  It’s lonely, isolating, hard to find your confidence and a group of people you feel supported and safe with.  At least it has been for me.

It is a challenging time in the world. So many pressures – economic, environmental, political, religious, social and class tensions, swirl with the social pressures to be something, excel at something, to change something and to be present for everything and everyone. I think this struggle is even greater when you are aware of your own mortality and that of your friends. How do you live as many life experiences as possible in a lifetime full of unknowns? We all have this unknown – yet my unknown is the quite voice that drives me to keep trying, to keep creating and to keep asking how the world could change. The voice can be encouraging and sometimes full of fear and anger.    It’s hard to just be. To not expect more out of oneself than simply breathing, being present, listening to what your real passions are, your desires, your joys, what settles your body, mind and sprit.

As a mom, I have no greater lesson than I can learn from child than to be present. It is a struggle. I have lived the life of just me, a life of we and now a life a shaped by us. What will my life be once my child has grown into an adult? What lesson will I have taught him? Will he live with joy? Will he live with a sense of awe and amusement of the world around him? Will he wake with purpose in his day and sleep with peace at night? I hope so…

Through this blog I hope I will explore my joy and struggles of learning to be a mom and perhaps discover how this life will weave into my next life. Along the way I will share some of my stories as a mom with a disability, not for pity, not to be an inspiration but because it is a fundamental part of me. I am a spastic mom that frequently spills milk and rebels against the notion of “Leaning In.” I prefer to recline with a cup of tea!

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Author:

Through this blog I hope to explore my joy and struggles of learning to be a mom. Along the way I will share some of my stories as a mom with a disability, not for pity, not to be an inspiration but because it is a fundamental part of me. I am a spastic mom that frequently spills milk and rebels against the notion of “Leaning In.” I prefer to recline with a cup of tea!

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