by Lisa Goodman-Helfand
Scleroderma is an autoimmune disease that causes the hardening of the skin, and I’ve spent 20 years battling its effects. Sometimes the battle wanes, and I’ve been able to enjoy periods of health, and other times it rages and I’ve had to fight my way back to wellness. Yet through it all, I’ve focused on my kids and being there for them. And, I believe my kids saved my life when I was struggling with some severe complications from my autoimmune disease. For that, and many other reasons, I am a lucky autoimmune mom.
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. And oh… how I wish I could do all these things with my son and daughter. But that’s not my world. Unfortunately, autoimmune disease prevents me from enjoying these forms of recreation.
Even though there are a lot of things my autoimmune disease keeps me from doing, it doesn’t change who I am. I am a mom who works hard to inspire my kids and be the best mother I can be to my son and daughter. And I am a lucky autoimmune mom because my kids helped to save my life and give me the strength to fight my disease. I hope my kids will be inspired from my struggles, and remember all the wonderful things we can do together.
When I was 10, 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. I have lived with this illness for 30 years, and am especially thankful that for much of my life, I’ve remained in relatively good health. Of course, I still have chronic pain, Raynaud’s Disease, and other symptoms… Nevertheless, until 2006, I felt lucky to be in decent health and not severely affected by my autoimmune condition.
Everything changed in 2006, 12 hours after I gave birth to my second child. Unfortunately, due to complications from my scleroderma, I suffered from preeclampsia which spiraled out of control and led to 218 consecutive days in the hospital. During those long seven months, 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 much of the time, I couldn’t eat, breathe, speak or move. My husband cared for our newborn and 3-year-old while I teetered between life and death.
Being a mom is what inspired me to keep fighting my illness
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 kept me alive and strengthened my resolve to fight my way back to my family. When I finally returned home in a wheelchair, I faced six more months of intensive therapy to regain my ability to walk, eat and breathe independently. There were plenty of times I wanted to give in to my illness, but somewhere deep inside, I knew I couldn’t leave my kids. I was lucky to be surrounded by a tremendous medical team, a family that held my hand and refused to let go, and the most amazing 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 age 31 that my life is always wonderful and easy. I have gone through periods of depression, self-pity and low levels of self-esteem, just 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 wake up each morning and try again. And I have my kids.
Sometimes I worry that my disease will ruin my kids childhoods. Then I think of what my illness can teach them. I hope they’re learning that we can become stronger from suffering, and get 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 wonderful after all. When my kids reflect on growing up, I know they’ll remember what I wasn’t able to do with them because of my disease. But I hope those thoughts don’t take center stage, and that my kids will instead remember the values we’ve instilled and all the fun-filled and happy family memories. I hope the soundtrack of their childhood is laughter.
Snuggling in bed reading a book together, art and science projects, working on homework, carpools, preparing lunches, planning birthday parties, arranging playdates, attending ballet recitals and basketball games, taking nature walks, vacationing, baking, volunteering, debating politics and laughing; these are just a few of the many 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).
You can find this article and others about autoimmune disease on autoimmunemom.com
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