On Monday, my daughter started kindergarten and I changed my "less-than-full-time but not-exactly part-time mommy-friendly schedule" to one that is slightly more so. I can now walk my daughter to school in time for the first bell and pick her up earlier in the day than I did when she was in full-day preschool.
Instead of working (officially, at least) 32 hours over four days, I'll work 30 hours over five days. Not a remarkable change but still one that will require some adjustment. And even more time on the Blackberry!
This shift made me think about the many women I know – women still in the workforce – who have changed the who, what, when, where and even why of work to sync better with their children's lives.
I have friends, acquaintances, and former colleagues and classmates who, like me, have left the private sector for the more "family friendly" venues of government, non-profit organizations, and academia. (Of course, jobs in these areas are often demanding too, just in different ways.) Women who have shuffled the numbers and the hours and retooled themselves as consultants and entrepreneurs to build in flexibility (and fulfill chauffeur duty). For the most part, they seem happy with their choices, although the perils of part-time work, e.g., forfeited income and deadend assignments, and the rock-hard glass of the glass ceiling of the "mommy track" always hover overhead.
Of all these women, though, none has made as dramatic a change as my friend Lisa. She did not just tweak her schedule or figure out a way to consult for her former employer. Or transfer her existing skills to a technology-enabled job. She changed her career entirely - from a high-paid advertising executive to a part-time special education teacher for preschoolers with developmental delays.
Like many women, Lisa made a few changes to her schedule when her first child, Julia (who is now 14) was born, but kept her job in advertising. And, like many others, she decided that model didn't work when she had her second child, Rebecca. But not for the usual reasons.
You see, Rebecca - who is perhaps my favorite of all my friends' children -
was born with familial dysautonomia (FD), a rare and progressive genetic disease.
FD almost exclusively affects Jewish children of Eastern European origin. It causes a child's autonomic and sensory nervous systems to malfunction from birth with severe consequences for every major system of the body, including gastrointestinal, cardiac, pulmonary, orthopedic, renal and ophthalmologic problems. In practical terms, it means that many FD kids can't swallow and chew normally, can't feel pain or distinguish between hot and cold, and experience frequent lung infections or extremes in blood pressure. FD is not, as it once was, automatically fatal. But children with FD must overcome tremendous challenges, including frequent hospitalizations, major surgeries and daily medical and supportive therapies as they try to live normal lives. FD, sadly, is still associated with shortened lifespan.
Rebecca, who is now 12, has a comparatively mild case of FD. She leads an astonishingly "normal" life considering her diagnosis. Like many tweens, she lives for her friends, camp, Facebook quizzes, and the Jonas Brothers. Lisa attributes this "normalcy" to lots of early and sustained interventions (medicine, surgery, occupational, physical, and speech therapy, nutritional counseling, and therapeutic horseback riding). And to her own efforts to educate herself to serve as Rebecca's advocate. Even now, keeping Rebecca's routine on track is a full-time undertaking for Lisa and her family.
The New York Times captured this "tremendous effort" a few years ago in a profile on Rebecca and her family: Mission Impossible: A Routine Childhood. The article describes the medicines and therapies - and the incredible love and support - Rebecca receives. It also describes the effect of Rebecca's disease on Lisa's career (and on her husband's employment choices as well):
After Ms. Newman had her first child, Julia, now 12, she continued working four days a week for a Manhattan advertising agency, making $100,000 a year. After having Rebecca, she quit working for several years, then went back to school nights to get a master's degree in special education and now works part time as a teacher of preschoolers with disabilities. She earns a third of her old salary, she says, but it helps pay the bills and makes her a better advocate for Rebecca.
As much as the Times' article provides a true glimpse into Rebecca's illness and her family's tireless efforts, it doesn't explain how - or critically, why - Lisa chose to take all that she's learned and experienced in her more than full-time role as "Rebecca's mom" and turned it into a part-time special education career. So I asked Lisa to explain it for CurrentMom.
Lisa framed her decision this way:
When Rebecca was 3, life had moved beyond "medical crisis" and into a more "normal" schedule and I could see a light at the end of the tunnel: Kindergarten!! A good friend who is a reading teacher gave me sage advice: she said that I would have to be Rebecca's advocate for her entire life and that I would be much better at that if I were inside the system rather than outside. . . .
I took nearly three years of classes and graduated with a double master's in Special Ed and Elementary Ed. Rebecca had a [special education teacher] assigned to her in her preschool, and I wanted to do that type of work, knowing it could allow me to do valuable work, make a very good hourly wage, and give back to others.
Lisa now spends a good portion of her days shadowing preschoolers in mainstream classrooms, facilitating their interactions with other children, adapting the "curriculum" for them, and helping them develop language and other skills. She works with all types of therapists as well as doctors and the "regular ed" teachers as well as her students and their parents. Because Rebecca has had so many types of interventions, Lisa knows a lot - from personal experience - that can help the parents. She can truly empathize with them and help guide their choices.
Lisa also has another "job" - as a board member of the Dysautonomia Foundation. She spends a lot of time raising awareness about FD and money for research and treatment. Because FD is so rare, there's no big fundraising operation in place: money is raised mostly by affected parents and friends. For the past six years, Lisa and her husband, Jeff, have organized a charitable bicycle race, the Tour de Foliage, in Westchester Country, New York. This year's race will take place on September 27.
Right now, Lisa is busy gearing up for the start of school, the bike race, and Rebecca's bat mitzvah (the ritual marking a Jewish girl's coming of age) this January. She is reflective about her old career, her new avocation, and the importance of living a balanced and meaningful life. When I spoke with her about this CurrentMom blog, Lisa told me that when Rebecca was first diagnosed, she was "quite depressed" for a time. But, eventually, Rebecca began to get stronger and healthier, and make progress, and Lisa moved ahead too. She explained:
I was very impressed by Rabbi Harold Kushner's book, When Bad Things Happen to Good People, and in particular, his comment that life will throw adversity your way, but the choice that we have is, how do we respond to that adversity? With fear and depression or with grace?
So I decided to try, as best as I could, to live with grace and optimism and strength. It varies from day to day, but most days I firmly believe that Rebecca was put here to help improve so many people's lives. Everyone who comes in contact with her is better for it.
When I worked in advertising, I used to think that it was such as meaningless way to make a lot of money, and that eventually I would do something with more meaning.
Then I had Rebecca.
Even though Lisa has been my friend for well over two decades and we've spoken many times about Rebecca's impact on her life, her words floored me. And inspired me. Lisa makes a real difference every day for her daughter, the FD community, and other children. More than any other woman I know, Lisa truly has integrated her full-time commitments and her part-time career.
Photo: Rebecca, Lisa, and Julia on vacation
This is quite inspiring!
Posted by: DGT | Wednesday, September 02, 2009 at 01:58 PM
Thanks for this entry, Stacy. An excellent reminder of what's most important in life.
Posted by: Tara | Wednesday, September 02, 2009 at 02:31 PM
This is a beautiful story about beautiful people!! I am glad to know them!!
Posted by: ann | Wednesday, September 02, 2009 at 06:31 PM
OK, I am officially in tears. Lisa, Jeff and the girls are truly remarkable people and I'm glad they are in my life.
Posted by: stacey reichman | Wednesday, September 02, 2009 at 08:29 PM
watching Rebecca grow up with her tremendous smile everyday, is truly a reflection of her wonderful family!!! Jeff and Lisa are unbelievable parents and they are all very lucky to have eachother, and we are very lucky to have them as our neighbors!!!!
Posted by: Hope Lott | Wednesday, September 02, 2009 at 10:11 PM
I guess we see where Rebecca gets her resilence!
Posted by: Donna | Thursday, September 03, 2009 at 08:25 PM
I am always awed by their positive attitude toward life. I marvel at the "normalcy" of their lives and they are a constant reminder to not sweat the small stuff. I concur that I feel lucky to know them and have them as a part of my and my family's life.
Posted by: Rachel | Wednesday, September 09, 2009 at 12:24 PM
Thank you Stacy for sharing your beautiful story, about your beautiful friend, Lisa, her beautiful family, and a beautiful child named Rebecca..
Posted by: Gerri D. Klenosky | Wednesday, September 09, 2009 at 07:32 PM
I also have tears in my eyes. Lisa is an inspiration. I am a mom to a little boy with cerebral palsy; I work fulltime, and always feel so guilty about that. It is absolutely incredible what an impact Lisa has had, both on her daughter and on other kids with special needs. Thank you for sharing this. If Lisa would ever want to come share her wisdom with all the moms of kids with special needs who read my blog, To The Max, I would so welcome that.
Posted by: Ellen | Saturday, September 12, 2009 at 01:49 PM
This is a wonderful story about a very special person, my cousin Lisa. Although this story did bring tears to my eyes, in general, Lisa, Jeff, Julia, and Rebecca, are the people who bring smiles to your face and joy to your heart.
Posted by: Sue Levine | Monday, September 21, 2009 at 10:11 PM