Moms with MS

 

 

Alex sported a new haircut on his first day of kindergarten and, as I recall, was both nervous and excited on that warm August morning a decade ago.  His first day of high school last year was definitely less warm and fuzzy.   Note the contrast in both photos between the innocent five-year-old and the grumpy teen. However, despite Alex’s eye rolling, I would not be deterred from capturing his “first day of high school” image for all eternity.

 

Alex turned 16 a few weeks ago, and the months until he goes to college seem to be accelerating. I would love to press the rewind button for a year and get my bearings, but time marches on and I have no choice but to hang on for the ride.

Several mothers I know also want to press rewind-but for a much different reason. These moms remember their lives before they were diagnosed with multiple sclerosis and everything changed. Before MS, they did not have to go to the neurologist and take powerful medications with sometimes nasty side effects. Before MS, they did not have to think about the summer

heat or consider whether they have enough energy to help the kids with homework and cook dinner before soccer practice. Before MS, they did not have to explain to their kids why they sometimes can’t walk straight or why they need a cane some days but not others. Before MS, no one accused  her of being drunk when  They want to do all that they used to do before MS interfered, and sometimes they can, but not always. Before MS, they could be spontaneous, and peace of mind was more easily attained. Life was simpler before MS.

When Mom is diagnosed with MS, she has to make room in her life for a chronic, unpredictable disease. She instantly becomes a patient. One day she might wake up with blurry vision or numb legs, or she might drop a carton of milk on the kitchen floor because her hand did not grip it strongly enough. She might need to have frightening tests at the hospital or start giving herself injections. Sometimes her MS is invisible, so only she knows that her legs are numb or her eye hurts. A mom with multiple sclerosis instantly learns she cannot take her body for granted anymore, and while MS will probably not shorten her life, nothing will ever be the same.

Almost everyone knows someone with MS. We are moms, grandmothers, aunts, daughters, cousins and, of course, sons, husbands and fathers. Not all of us use canes or wheelchairs, but we are all fighting the same battle. Women of childbearing age are diagnosed with MS more than other populations.
I realized the value of meeting other moms living with MS years ago, after I met another mom living with MS through Alex’s Little League team. We formed “Moms with MS” in 2010, and our group still going strong nearly 8 years later.

Moms with MS is the only MS support group for mothers in Southern California. “Moms with MS” meets monthly in Rancho Cucamonga and is sponsored by the National Multiple Sclerosis Society. The moms in our group offer support, share experiences, and exchange ideas with one another as we navigate the sometimes bumpy road of MS and motherhood. Most of our group members were diagnosed after their kids were born, but several (including me) were diagnosed before we started our families. I was diagnosed seven years before Alex was born. Our children range in age from newborn to adult. The moms in our group share experiences, offer advice, and discuss current medical research, and vent. It is so helpful to discuss our illness with other moms who understand how we feel.

We are building friendships as we learn from each other.

March is MS Awareness month.  I am certainly aware of it!