Playing games on the floor, bicycle riding, swimming, boating, hiking, running, rock climbing, surfing, skiing, scuba diving, and horseback riding; all activities my kids have asked me to do with them. Oh, how I wish that I could do all these things with my son and daughter. The reality is my autoimmune disease prevents me from enjoying these forms of recreation.
When I was ten years old, I was diagnosed with scleroderma; a disease that causes hardening of the skin. The symptoms of scleroderma vary greatly for each person, and the effects can range from mild to life threatening. The seriousness depends on the parts of the body affected and the extent to which they are impacted. I have lived with scleroderma for 30 years and am supremely grateful that for many of those years, I’ve enjoyed a relatively stable health status. Of course, I endure chronic pain, disfigurement, Raynaud’s Phenomenon, excruciating calcification deposits, blah blah blah…. Nevertheless, until 2006, I counted myself lucky to be living well and not in imminent danger of scleroderma influencing my life expectancy.
All that changed in 2006, 12 hours after I gave birth to my second child. I had a high-risk pregnancy and was dutifully visiting my obstetrician weekly. Despite this close monitoring, my scleroderma masked some symptoms of preeclampsia. Unfortunately, my preeclampsia went undetected until after I had given birth. What began as a postpartum ileus spiraled out of control and led to 218 consecutive days in the hospital. During the seven months following my daughter’s birth, I underwent eight major surgeries, lost my colon and spleen, had two tracheotomies, and experienced I.C.U. psychosis, neuropathy, cardiac arrest, and temporary total paralysis. For many months, I could not eat, breathe, speak, or move. My husband cared for our newborn and 3-year-old while I teetered between life and death.
I believe that my son and daughter saved my life. During this difficult period of my life, all I wanted to do was go home and be a mother to my children. Knowing how much they needed me, strengthened my resolve to claw my way back to them. When I finally returned home in a wheelchair, I faced 6 more months of intensive physical, occupational, speech, and respiratory therapy to regain my ability to walk, eat, and breathe independently. There were plenty of times I wanted to succumb to my illness, but somewhere deep in the crevices of my heart and mind, I knew I could not leave my kids. I was fortunate to be surrounded by a tremendous medical team, a family that held my hand and refused to let go, and the most incredible circle of friends. This exquisite tapestry of support carried me through my darkest days and I made a remarkable recovery. I am thrilled to be back to just having plain old scleroderma.
Please don’t think that because I survived a near-death experience at the age of 31 I now eat rainbows for breakfast and live every moment drinking in life’s sweet nectar. Animated leprechauns do not follow me everywhere I go singing a happy tune. I have gone through periods of depression, self-pity, and low levels of self-esteem to name a few. I struggle to balance motherhood, marriage, and my career like most women in America. Some days I do it well and other days I fail miserably. The important thing is that I get to wake up each morning and try again.
There are a lot of things my autoimmune disease keeps me from doing, but living a fulfilling life isn’t one of them. Like all of us autoimmune moms, I fight through intense pain to be the best mom I can be to my son and daughter. Sometimes I worry that my disease will taint their childhoods. Then I think of what my scleroderma can teach them. I hope they’re learning that we can derive strength from suffering and courage from beating tough odds. I hope my husband and I are modeling the importance of resilience and maintaining perspective. Life isn’t fair, but it is wondrous. When they reflect on their early years, I know they’ll remember the things I wasn’t able to do for them because of my disease. But I hope those thoughts do not take center stage and they instead carry with them the values we’ve instilled and joyous memories we created as a family. I hope the soundtrack of their childhood is laughter.
Snuggling in bed reading a book together, art projects, science experiments, helping with homework, driving carpools, packing lunches, planning birthday parties, coordinating playdates, attending ballet recitals, basketball games, and chess tournaments, taking nature walks, vacationing, baking, volunteering, debating politics, and laughing; these are just a few things I get to do with and for my kids. I am one lucky autoimmune mom.
About The Author
Lisa Goodman-Helfand is a married mother of two living near Chicago. In addition to her career as a reading specialist, she recently launched her blog: Comfortable in My Thick Skin (comfortableinmythickskin.com). Lisa is passionate about patient advocacy and raising awareness for autoimmune diseases.
This blog post was originally published by AutoimmuneMom.com, written by Lisa Goodman-Helfand, and first published on Jan 29, 2015.