A Mom With A Disability: I Adapt Parenting To My Body
08/27/2013 - 20:40
Shana Schochet Lowell
Shana Schochet Lowell
Shana Schochet Lowell

“Your son is crying down in the playroom,” my friend offered helpfully.  “I know,” I responded. “He’ll let me know if he needs me. “ We continued our meal at the Shabbat table as she looked uncomfortable and I internally debated my response, partially driven by my parenting philosophy, and partially by my pain level.

In these days of helicopter parenting and tiger mom parenting, attachment parenting and free range parenting, it’s hard enough to know how to parent your children. In my case, my choices are frequently influenced by the state of my body, which, quite simply, doesn’t work the way it should.

My back started deteriorating when I was 17. Over the past nine years, I’ve been diagnosed with degenerative disc disease and fibromyalgia, a debilitating musculoskeletal pain disorder. Both disorders involve fluctuating pain levels on any given day.  

Life holds many challenges for me. Making ambitious plans and having to frequently pull out last minute is depressing. I’m a very unpredictable dinner date. I studied for years to become a clinical social worker, but can’t work outside the home. Shabbat takes me three days to prepare, and after all that effort, I sometimes miss sitting with my family because I’m too worn out by week’s end. Ironically, even keeping consistent therapy appointments that treat my conditions becomes difficult; some days I struggle with taking a shower and eating breakfast. Things are very different from how I imagined they would be when I was a young and ambitious twenty-something who used to hike mountains without breaking a sweat.

In theory, I ascribe to much of attachment parenting. Yet some modern attachment parenting activities have proved impossible. Baby-wearing beyond the newborn stage was a no-go. We tried to cloth diaper as well, but I couldn’t keep up with the increased laundry demands. Every parenting choice I make is a careful accounting of my current strength and a calculation of what I have left to do for the day. 

Nontheless, I wouldn’t trade having a family of a husband and three children for the world. After a long and painful pregnancy and recovery blessed us with our oldest child, we chose to pursue a gestational surrogacy for our twins, knowing that my body couldn’t handle another pregnancy, but wanting more children. “How are you going to handle twins?” my shocked sister-in-law asked, upon hearing the news. The same way anyone else does. You make it work. And I started drinking coffee.

We were faced with a choice while confronted by my increasing disability when our eldest was born, the same one pondered in the iconic movie, "The Shawshank Redemption." You either get busy living or you get busy dying. In my case, although it isn’t what most people might consider “normal,” we got busy living. Sometimes we ask for more help from the neighbors than we would like. We have wonderful relatives who help. We adjust our expectations and accept that things will not be as we once envisioned, and we do our best.

I have had to adapt my parenting to my body. And my children have had to adapt to me. Some days are very hard; I don’t like telling the kids I can’t do something because of my body. I try to plan well, but you can’t always outsmart an erratic illness.

And there are also days I realize the unexpected benefits of exposure to my illness. My children learn compassion, giving, and self-reliance early on. While still barely walking, my younger two learned how to climb in and out of their high chairs and strollers. All three have taken responsibility for clearing and setting the table and carrying their laundry to the laundry room. And they understand that although Ima can’t pick them up anymore, I will always, always sit down, no matter where, and provide hugs, kisses, Band Aids, and even rocket ship kisses (much stronger healing than regular kisses, and strategically delivered on the easily accessible tops of their heads).

Shana Schochet Lowell studied Psychology and Jewish History at Bar Ilan University, and holds a Masters in Social Work from Columbia University. She also learned at Midreshet HaRova for several years while living in Jerusalem. She is passionate about biblical history and birthing rights, and hopes to return to clinical work when her health allows it. She currently resides in Hillside, NJ with her husband and three young boys.

Comments

Have been diagnosed with disc disease and stenosis know what you are going through JESUS shows me great mercy and gives me lots of strength.

Beautifully written, Shana. You are an amazing mama and your boys are lucky to have you! (That includes ari!) May this year be a year of healing and of miracles, and a year of hugs and kisses wherever they need to be!!

Wonderful story! The females in my family are rife with CIDP, fibro and Charcot-Marie-Toothe, so I have experienced Shana's situation from both sides.The most important lessons we all need to take from this is to do what we can of what we want, don't feel deprived and don't give up.

Thank you, thank you, thank you! I have been waiting to hear your voice for months. It is a wonderful present to me on my Birthday.
I have been diagnosed with arthritis (possibly two different types at the same time and fibromyalgia. And I have 8 kids ages 16 to 11 months. The hardest thing for me is to stay "nice" regardless of pain. To stay loving even when I want to scream because my joints are on fire.

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