Wanda’s Story: Part 3/3

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In 1991, when my Mom was 46 years old, my Dad (who was self employed) paid $50,000 to Rush Hospital in Chicago in order to get my Mom admitted for a procedure in the hospital. Doctors told my mother that a bone marrow transplant would give her a fighting chance against metastatic breast cancer. Although we had insurance coverage, our insurance company considered a bone marrow transplant “experimental.” Experimental meant that the insurance company wasn’t going to pay for it.

Prior to this, my Mom had a mastectomy and chemotherapy treatment. After the bone marrow transplant, three tumors would develop on her brain in which she would then endure radiation treatments. The total bill for all of my Mom’s treatments and stay was well over $300,000. With tears in her eyes, she told my Dad, “Bill, if I live and we have to live in a box on the street, what good is that?”

After 2 year battle with metastatic breast cancer my Mom died at 47 years old; I was 17 years old. Immediately after, our health insurance company raised my Dad’s premium to $600.00 a month. He had no choice but to drop our coverage. I saw bills continue to roll in from my Mom’s treatment along with late notices to pay the mortgage. My Dad managed to hold on to the house. We ate a lot of frozen waffles.

Not having health insurance wouldn’t only have an effect on my health then, but in the future. I remember being sick but not wanting to worry my Dad. I knew we simply didn’t have money to spend at the doctor because we were no longer insured. “A partial repeal of the Affordable Care Act could cost up to 13 million children to lose their health coverage.” When doctors and dentists tell me now that I have a very high threshold for pain, I know where that developed from.

Despite having access to healthcare from insurance now, I drove myself to the emergency room when I needed my appendix out (I didn’t want to wake my kids and thought I just had the flu). I was in labor with my first child for 2 1/2 days refusing any drugs because it wasn’t “that bad yet.” I’m also the one who finally went in to the doctor after my whole cheek swelled up from a tooth that needed a root canal. The dentist said the tooth was actually loose because the inflammation was pushing the tooth out. I’m not sure I was born with a high threshold for pain, but rather, it was a learned behavior.

According to the Congressional Budget Office report, enacting the American Health Care Act means that, “In 2026, an estimated 52 million people would be uninsured, compared with 28 million who would lack insurance that year under current law.” No one should ever be in jeopardy of losing their house over medical bills. No one should have to think they are a financial burden on their spouse or partner because they get sick. No child should be worried to tell their parent they are sick. No parent should have to worry about their child getting sick because they can’t afford to get them the care need. No one should have to think because they have had an illness in the past or in their family history that an insurance company can refuse to cover them.

Where is our line in the sand that We the People no longer allow politicians to cross? Prior to this election, I use to think that covering pre-existing conditions, access to health for all and caring for vulnerable populations was something we held together strong on. We’ve made a few gains in the 25 years that my Mom died. By the House passing the American Health Care Act (AHCA), which repeals major parts of ObamaCare, the estimate premium surcharge for a 40 year old diagnosed with the cancer my Mom died from tops the list: $142,650 more for patients with metastatic cancer. That’s a hard pill to swallow.

Wanda’s Story: Part 2/3

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On a vacation in Florida, in December of 1990, my Mom was unusually tired. (This may have also been the year my cousins and I were kicked out of Grandma’s house. Doesn’t every family have a story like that?) We’d return home and she’d make an appointment to go to the doctor. Through a breast examination, her doctor would feel a lump. She was referred to a specialist and shortly after a biopsy would be preformed. We would learn her lump was malignant and had spread to several lymph nodes.

When my Mom woke up from surgery, she told me she fell asleep thinking of me singing on stage, “Hooray for Hollywood.” The series of events in my Mother’s next chapter wouldn’t be anything to sing about. There is nothing glamorous or pretty about what breast cancer does to a person physically, mentally…and how it attempts to claim your spirit (including those around you). Some things are a blur. I was 15 when this all began. Through the eyes of that girl, I’m going to do the best I can to recall my Mother’s story.

In a reaction to chemotherapy, her hair fell out. She went and was fitted for a wig, but she rarely wore it. She would wear a cloth bandanna most of the time unless she was going to a play of mine. Months after she died while I was cleaning the bathroom, I stumbled across it. I picked it up and smelled it. It still smelled like her. I remember sliding down on the wall to the bathroom floor hugging this little piece of cloth and rocking back and forth- just as she undoubtably rocked me so many times as a baby.

She would lose weight and muscle mass. She would complain that nothing tastes like food anymore. From my room, I would hear her vomit in the hallway bathroom. I’d sit on her bed and tell her all about my day at school and despite being tired, she’d never tire of listening.

After chemotherapy, my Mom wouldn’t be “cured.” The new x-ray of her chest revealed, what my Dad would describe to me as being, “tiny little seeds in her lungs.” Knowing what I know now, cure was the wrong expectation to have. Living in remission, would be more fitting. Not dying from complications of treatments is something I know now is also a factor for breast cancer patients. My parents were given three choices:

  • Continue chemotherapy
  • Walk off into the sunset and live the days you have left
  • Have a bone marrow transplant that would give you the best fighting chance

People would change…

My Uncle, who is also my Godfather, came over after she started treatments. One of the first things he did when he came in our house was accept a cup of coffee from my Mom. For the first time, he didn’t want anything. Maybe he didn’t want to trouble her. She shared with my Dad and I after he left that maybe he doesn’t know you can’t catch cancer through a coffee cup? Her best friend, my Godmother, would phase out of my Mom’s life after 20 years. Maybe she didn’t know how to deal with my Mom’s diagnoses, but it hurt my Mom. Especially being that my Mom said that she was a hypochondriac and she took time to listen to every concern she had. But now that my Mom was sick, it seemed like she no longer had time to talk.

Out of a loss, new friendships were gained…

Like my Mom’s friend Carol who she met during car shows with the ’55 Chevy. I can still hear the echo of my Mom’s laugh when she and Carol would chat. Like my Dad’s car friend who had a disabled daughter, Chrissy. At first, my Dad didn’t know him very well, but when he heard that my Mom needed people to get tested for a bone marrow transplant, he organized the entire thing and ensured she had a long line of people to be tested.

Vows were renewed…

Faith was a struggle. For my parents 25th Wedding Anniversary, for sickness and in health never meant more. My Mom became baptized and confirmed and insisted on getting married in “the eyes of God.” (That meant in a church.) She worried my Dad would be in eternity and she’d have no way to reach him if she died. Prior to the renewal of their marriage, the Priest that interviewed my parents asked some really questionable things. Like when he asked my Dad if she slept with pajamas on? The Priest told my parents that they had to sleep with a line (barricade) of pillows between them until they were “married.” My Dad told him, “We will not! My wife has cancer. I’m going to hold her and comfort her every single night.” That’s when my Dad made it clear that we should never let man’s law get in the way of God’s love.

Hospitals don’t sleep…

Neither do those that watch over their Mom/partner/kids/friends while they are in them. My Dad, brother, sister and I all took turns staying over night to watch over my Mom and be with her during the bone marrow transplant. My Dad stayed the majority of the days~ it was hard to keep him away. Even though she was so sick herself, I remember my Mom talking a lot about how sick a little girl on the same floor by the name of Mandy was.

The bone marrow transplant was a success…

Until it wasn’t. My Mom started walking uneven. She was having headaches. She went back to the hospital and had an MRI that revealed that she now had three tumors on her brain. The decision would be made that she would continue on with radiation treatments. She wanted to live long enough to see me graduate high school in June.

I did graduate from high school in June. She did not live to see me graduate. My mother died on January 23, 1992.

I keep her alive in my heart by talking about her…

At least that’s what I tell my kids about a woman who gave life to their mother. I hear her every time my youngest son laughs. I feel her every time my oldest son hugs me. I’ve educated them early on about eating with health in mind and carcinogens. They know they have a Grandma who died from breast cancer at age 47, an Aunt who died at age 47 (from an unrelated illness) and a Great Grandfather (my Mom’s Dad) who died at 47 from a heart attack. While I have a lot of time before it happens, I do plan on having a VERY special 48th birthday when the time comes.

Sometimes it’s hard to count the years…

but it’s easy to count the milestones since she’s been gone: Prom. High School Graduation. Engagement. Marriage. Pregnancy. Birth of Children. I remember thinking when I turned 34 years old how I’ve now lived 17 years without my Mom- that’s as many years as I knew her. I try to remind myself that I was lucky to have an active, loving Mom for 17 years. Some people have their Mom an entire life time but they fail to have a relationship like I had with my Mom.

I’m not a fan of pink ribbons…

My Mother is more than a statistic. Please don’t ever minimize her to a part of her anatomy by saying something like, “Save the Boobies.” She’s not represented in a pink trash can that is good for business. She did not die so CEO’s could line their pockets in profits from walks and runs for a “cure” while taking advantage of good hearted people that think they are helping. We’re all aware by now, aren’t we? My Mother could be your Mother, or your best friend, or your sister or your teacher…Or, maybe you.

Don’t give in to pink washing, instead demand we find ways to protect women and prevent further diagnoses. Please visit Breast Cancer Action to learn more about breast cancer and raise a little hell about it. #ThinkBeforeYouPink

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Wanda’s Story: Part 1/3

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For Mother’s Day, after my children were born, I use to write a letter in honor of my Mom which included showing appreciation for all of the mother’s of inspiration I knew. These were other Mom’s that either mothered me in some way or Mom’s that displayed some character toward me or my children that left my heart feeling full. This year, I’m going to do something different. I’m going to share my Mom’s story.

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My Dad joked that he was going to be a priest before he met my Mom. She grew up in Kentucky on a tobacco field. One of 6 children, they looked forward going to church where they would get a treat; a fresh apple or orange. She only went to school to the 3rd grade because she had to stay home and look after her younger siblings. She would later go back to school to get a GED in her early 30’s. She wanted her kids to value education and felt like if she didn’t have her diploma, she would be a hypocrite.

My Mom left Kentucky at 16 years old and headed to Chicago alone because her step father was “bothering her.” She worked as a waitress, was married and gave birth to my sister at 18 years old. She was walking home from work on day when she saw her husband’s car outside of a local watering hole. She confronted him with a woman on his lap. He told her, “You better stop or I’ll go get my gun in the car.” She replied, “You may need it.” Needless to say, they divorced and my sister was 2 1/2 years old when my Dad met my Mom.

When my Dad proposed, she didn’t say yes right away because she was scared. She told my Dad that her first husband said he loved her too but was abusive. My Dad wore the engagement ring around his neck until she said yes. My Dad loved her so much, he had her first marriage annulled- direct from the Vatican, written in Latin. My Dad not only proudly took on the role of father for my sister, but they had another child who is 10 years older than me.

People commented to her about how “old” she was when she was pregnant with me. I suppose, compared to carrying her first two children, she was “older.” If you consider 30 to be old…or too old to have children. (I had my first child a week shy of 30.) My parents use to tell me I was their “Love Child” because they were so in love when they had me. Imagine their faces when I grew older and questioned them about the lyrics to the song “Love Child” by Diana Ross.

I recall my Mom briefly working in a photography studio. I’d run in and smell the processing chemicals, see the proofs at her desk and works in progress where she was touching photos up by hand. She always had her camera in hand taking photos of not only me, but my friends.

She was a baker that couldn’t be compared with. She was a gardener who delighted in roses and tulips. She had an open door policy for my friends and was often the one hosting the cast parties after shows. She would go to dance competition after competition and then come home and run lines with me and never complain.

She told me a lot of stories about things she did in hopes that I would learn from her mistakes instead of making my own. She never hit me or yelled at me. We never reached the stage of “teenage drama” that you’d see on the Lifetime Channel. Maybe it’s because she was sick when I was 15 and she died when I was 17? Did we just skip that stage or did we have bigger things to focus on like- breast cancer, treatment, dying?

The Dance.

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My soon-to-be third grader, who is 8 years old, just approached me about enrolling in a tap and hip-hop class (insert tears of joy here). I’ve suggested dance class before because he is always joyfully dancing around and has a natural sense of rhythm. In many ways he reminds me of some of the kids I use to teach dance to. He’s always declined and on occasion has told me, “I already know how to dance.” No confidence issues here, Folks.

Firing up the search engine for hip and tap classes in the East Bay made me think about when I started in dance class. When I was 3 years old, covered in a shades of pale pink from head to toe, complete with a tutu, my mother lead me into a local dance studio. I’m pretty sure she pushed me through the classroom door, where for the next hour (which surely seemed like a lifetime to both myself and the teacher) I clung to a corner of the room under a barre and cried while a very patient assistant with a kind smile tried to coax me out to the center of the floor. Nope. I wasn’t buying what she was selling. I wanted my Mother and wanted nothing to do with standing in first position. I’m pretty sure the drama of it all left a lasting impression for all parties involved. Case closed. We did not return to the ocean of pink.

My Mother shared that story with me many years later while helping me get tights on for a dance competition. It was one of those moments where your heart smiles and you think, “Who would have thought?” It wasn’t until I was my third grader’s age that my Mom suggested a jazz class. Of my own free will, I waltzed into class and I was hooked. Jazz was my gateway drug to the arts.

Dance class brought something out of this shy girl. As soon as she stepped on stage, she beamed with confidence– a confidence that carried over into other things she did (and continues to do). I would often get comments on score sheets about how I “light up on stage” and how I’m a “natural entertainer.” I think for many years, especially my elementary years where I struggled academically, it is fair to say I was most at home performing on stage.

Nothing about my experience was typical in dance- just as the evolution of my dance career wasn’t by any means typical. I didn’t start off in ballet. I didn’t start when I was 3 or 4 years old. I wasn’t tall and certainly didn’t have a ballerina build. I was always more muscular, strong and have a longer torso than legs. I didn’t sport a bun (that happened after I became a Mom). I remember going to a convention and seeing Mia Micheals and thinking, “Hey! She has strong legs like me!” As I grew older and wanted to become better, I branched out into ballet and technique classes. But, it was always the music, not the dance, that moved me. To this day when I hear a song, I see a dance. Much like some musicians see music in colors.

I started teaching as an assistant for jazz class at the age of 14. That assistant teacher that tried to coax me into ballet class as a 3 year old grew-up to own her won studio. She offered me my first dance job. I worked for her for 13 years– and worked at other Chicagoland area studios too– a total of 16 years. I choreographed for shows and musical theatre. I even taught a Saturday class when I moved to Minnesota. I don’t teach anymore, but a song or two are still left in my heart. Despite my aging legs, my feet fall into place in any technique class to.this.day. I’m pretty sure I can still drop it and pop it with many of which are now half my age.

Those early days of dance, both victories and rejections, would strengthen my resilience for future years– the ability to jump in and make new friends, the passing of my mother at 47, a stressed relationship with my family, returning to school as a married woman and mother, walking cultural tight-ropes, the courage to love fearlessly, raising babies, moving across the country, parenting with courage and never giving up on myself. In later years, I would learn that life wasn’t about balance. No, life itself is a dance. It’s the constant push, pull, tug, sway, pivot…ever shifting, keep on moving…the front and back, shift of balance that keeps us moving. I mean, think about it. When you balance, you’re often on one foot- you aren’t moving. Like the heartbeat, life doesn’t happen in the highs and lows. No, life happens in between the marks of the pulse… the movement from one point to another. It’s that sweet spot where we are able to peel back the layers, expose our vulnerability and share connections which engage the mind, body and spirit.

In a world where society pushes for kids to start things younger and younger and often leads us to the impression that if you haven’t started playing baseball when you were 3 years old, perfected your axel by 6 years old, or graduated by 22 and landed your dream job…your hopes are already washed up and have little chance at success… I’m living proof that it’s okay to start “a little later.” For many years, my livelihood was teaching dance… despite starting at 8 years old (gasp). I finished college “a little later” too (with honors). Maybe it’s because I started later in dance that I wasn’t burnt out by 13 years old. Maybe it’s because I wanted to return to school that I achieved much more than a degree– but an education.

As I shared with a friend in my kitchen a few weeks back, you CAN discover your passions and purpose at any age. It’s your story. You have the power to reinvent yourself if you don’t like the story. Life is canvas- it is up to you to find the tool that suits you to create and give life to that canvas. There are no rules on the steps, the order or the pace. In case you think you are too old, or you’ve missed your “chance” to make your mark on this world, here is a little inspiration from some folks that are 40 and older to show you, it’s never too late.

Digital Citizen Tips For Educators

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While there has been a lot written about how to help students (minors) be good digital citizens, not much exists to help guide teachers, administrators and school volunteers on how to lead by example. Far too often, things are posted by mistake, educators don’t realize the implications of “open” social platforms and are not familiar with district policy. While no educator would ever intentionally put a student in harms way, even the most technically savvy educators need a reminder. Here are some simple ideas that you can do now to ensure that you, as someone who either works or volunteers at a school, is making good choices that align with policy, privacy, safety, respect and courtesy.

  1. Personal devices are just that- personal.  Tablets, lap tops and smart phones purchased and registered by schools are appropriate devices for teachers, administration and volunteers to use to document and “share” student progress and work. By storing student photographs (and videos) on your personal device, you risk student confidentiality.
  2. Aware before share on open platforms.  If your school or classroom has an “open” (meaning, any one can view them) Twitter, Instgram or Facebook account, be familiar with the school district’s social media policy on open platforms for teachers, administration and volunteers.
  3. Get permission in writing. With a full disclosure of your intentions, ask permission from parents and caregivers, prior to posting material involving their child. Teachers, administrators and volunteers simply don’t know the history of every child. With a plethora of facial recognition software available, it’s easier than ever to find someone online.
  4. Be respectful, selective and creative.  Focus on the work or project, not the student(s) with a creative camera angle. Always ask your subject (student, volunteer, fellow teacher) if you can take a photo before you do. Angle your camera to reflect the profile, from behind or zero in on materials being used in the hands of the student. If you can identify the student, save that photograph for an individual email to parents or to share at conferences. Be aware of what is in the photograph- crop out any street signs or license plates. Just as your students are to present their best work, be selective about what you share- only your best.
  5. Be mindful of digital footprints. A digital footprint is created when data is collected without the owner knowing. We aren’t sure how this information can be used, but if you are tagging companies or using hashtags, it makes it a whole lot easier for marketers to learn more about not only the gate keepers of student safety, but students themselves.
  6. Know your audience. While social media platforms can be used as a tool to collaborate and share with other professionals, remember to keep your school accounts separate from your personal accounts. Especially, if you are the community social media manager of the school. The school account shouldn’t reflect what is happening with you, but rather the school.

Contact me for

  • speaking opportunities
  • workshops for your organization
  • a social media audit of your school, teachers, administration and district