The Mother Lode: Highlighting the Special Moms of Scleroderma Patients
Along the street lined with neatly planned townhouses, an effervescent spirit zigzagged through the households at midday. Every person under the age of 8, including me, felt hackles rise up on the backs of our necks. A tinkling of chimes, a muffled cry. My eyes widened. “Ice Cream Boy!” I yelled to my sister as I flew down the stairs, taking them three steps at a time.
My mom placed two nickels on the landing and we grabbed them greedily, swinging the front door open with wild abandon. We ran down the sidewalk only to be stopped by the mob of little shorties shouting their orders at Ice Cream Boy.
Waiting for my turn, I prayed and prayed to the Neilson’s ice cream gods, hoping my favorite Tiger Tail ice dairy treat would still be there. The artificially sweet orange tang was balanced by salty lashes of creamy black licorice. It was quite sophisticated for a kid’s palate, but this was Canada, where candy included rolls of port wine-flavored gummies.
I skipped home, Tiger Tail in hand, and met my mother hanging the wash up by the side porch. “I want to marry Ice Cream Boy!” I squealed. She looked at me, her brow furrowed. There were no more nickels on the landing after that.
Mothers. They’re never perfect, but that doesn’t stop them from trying. Worried about my stiffening hands, my mother has given me every kind of ointment secreted from the known animal and plant kingdoms.
In honor of Mother’s Day, I’m highlighting three very special mothers of scleroderma patients.
Evelyn Torres-Rangel was diagnosed with scleroderma in 1990. At the time, she was married, a mother of two young children, and a teacher at Woodrow Wilson High School. Her rheumatologist didn’t give her much information or guidance.
Her mother, Charlette Torres, stepped up and researched the condition (pre-internet) until she found Dr. Philip J. Clements at UCLA and encouraged Evelyn to contact him. Dr. Clements put her on the correct therapeutic course. Through him, she was introduced to Tina Burger and the Scleroderma Foundation.
Charlette continued to support Evelyn emotionally, mentally, and spiritually, and even attended Scleroderma Education Days with her. Through their journey together, Charlette bought every type of glove imaginable for Evelyn.
Sadly, Charlette passed away last year at the age of 90, but Evelyn is forever grateful for her constant love, support, and infinite supply of gloves.
If you’ve been to a SoCal scleroderma support group, you’ve probably met Kamila and Kathy Dada. Kamila was 14 when she was diagnosed with scleroderma. Her school nurse recommended she see a doctor when she would experience bouts of Raynaud’s during classes. Kathy, Kamila’s mom, was teaching at Eagle Rock High School but took early retirement to be a full-time caregiver as her daughter’s condition progressed.
I spoke with Kathy about her experience caring for Kamila.
DCW: What are your biggest challenges as a caregiver?
KD: Staying positive and encouraging. I say that Kamila can and will get better, and try not to say or do things that may make her feel guilty that she is taking away from my “happy” life.
What are your favorite activities to do with Kamila?
After doctors’ appointments we go to our favorite places to eat, like Rod’s Diner. I drink coffee there until I’m drowning in it. We also like watching “Jeopardy” and “Wheel of Fortune” for brain activity.
What advice would you give the parent of a newly diagnosed child?
Educate yourself and your child about the disease, your medical insurance, and how the healthcare system works. Join a support group. As an adult, be a vocal, but polite advocate to get what you need in terms of care, meds, etc. Coordinate with all the child’s doctors, unless they already are a team, so they can do their best for the child’s overall health. Give doctors and their staff holiday and thank-you cards and treats to keep them on your side and willing to help you when you need it.
I have always done that. I consider it very important, and it’s effective. When you “sign up” to be a mother, you deal with whatever comes your way without resentment. Since Kamila is so nice, it’s easy to care for her and not “regret” that you have to do it.
When I was a shortie, I asked my mom with all childlike innocence and sincerity why she wasn’t a contestant in the Miss America pageant. She could have told me it was because she was married, or a mother, or that Canada wasn’t America’s 51st state. Instead, she leaned down and gave me a chest-crushing hug — not a regular occurrence in our Chinese family — and looking back, I think I gave her the very best Mother’s Day gift ever.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.