Wonder, understand, believe....always hope

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"Do what you can, with what you have, where you are" -Theodore Roosevelt

What do you call your Mother?

Mother, Mom, Mommy, Mum, maybe even Mumz. Whatever your term of endearment for that woman who loves you more profoundly than any Hallmark card can describe, make it special. Consider the fact there is no other relationship like mother and child. It’s a gift sealed in more than DNA, divinely created by one of the other.

My relationship with my one and only dramatically shifted when I was nineteen. As my Mom battled cancer, I began to comprehend and appreciate her role in my life in a renewed way. She died when I was barely twenty seven and now, I’m close to living more of my life without her than with her.

There isn’t a day I’m not reminded of my Mom’s gentle way and the powerful impressions they left. I recall the extreme gratitude in her thank you. I remember her small hands washing clothes, ironing or at the sewing machine. Her prideful face as she canned fresh vegetables out of her garden. The smile she gave requesting a little 7-up on special occasions and the rhythmic way she would follow my Dad on the dance floor.

My Mom was self-less, hard working, faithful and always, always kind. She molded my thoughts and instilled values in me that are permanent threads woven into my non-tangible quilt. She showed me what real faith is and that it is possible to endure. Her spirit simplified the complicated aspects of unconditional love, all of which expanded our relationship beyond typical boundaries.

My Mom’s commitment to family speaks in the shadows of Be The Change. This blog entry is dedicated to my Mom and the others whose home isn’t allowing cards or phone calls. In honor of them this Mothers Day weekend, call your one and only her special name. Have a conversation between two hearts only the two of you know the words.

It becomes a story, which lasts forever. Might even Be The Change.

Leaving on an airplane

Everyone has a story about airplane travel. Anything from awkward barefoot security encounters, the missed connecting flight to long waits for luggage. Including highlights such as aching knees from bumping into the seat in front of you or the intentional lean to the right because of the sleepy stranger seated at your left.

Whatever the tolerated situation maybe most airline passengers don’t endure what the physically and medically challenged traveler does. A travel check list is long enough without the need to add wheelchair or ventilator as must have items.

Traveler, Carrie Salberg can not be without certain medical items such as those two, due to her muscular dystrophy diagnosis. A Star Tribune investigators article says in January, aboard a return flight to Minneapolis from New Orleans, Carrie Salberg was asked to get off the plane. A battery brought on board by her nurse, which had a certificate of compliance, caused serious inconveniences. Things were done correctly, yet still not enough. Interesting to note, her flight to New Orleans from Minneapolis went without issue, even included a free first class upgrade.

In a small way, I can identify with medically challenged passengers like Carrie Salberg. Although only traveling once with Michael by airplane during his fragile medical years, I understand the complexity involved with adding critical details. Along with the normal vacation preparations others have, that one trip required extra phone calls, particular doctor appointments and many additional considerations other travelers don’t have.

Michael received air travel approval from his medical team but it came with a promise to have a medical letter with us at all times and act in accordance to it, if necessary. The letter explained Michael’s rare disease and said should he experience stroke symptoms in-flight, parents will alert flight crew of an emergency medical situation. Airplane will be expected to land immediately. Right before our trip I saw myself banging on the cockpit door yelling, “Land this plane, STAT!” Fortunately, it was only a dream.

Even something normal like attending a school field trip required extra time and details to assure Michael’s special wheelchair needs were accommodated. It’s surprising the number of locations, which are not easily “handicap accessible” despite the signs suggesting otherwise.

Be The Change asks you to demonstrate large doses of patience and tolerance for physically and medically challenged travelers. Let’s not add to an already extensive list of concerns. Be the one who holds the door in assistance and offers a helpful hand. Always give a smile instead of a stare and Be The Change!

Through your window...

My husband Donn, is one of the kindest human beings I know. His birthday is coming up, giving me the perfect opportunity to highlight him and tell you a little bit about him.

Donn reads the Star Tribune paper copy cover to cover, daily. He remembers high school friend’s birthdays but can not recall the one thing he needed at Menards without his trusty yellow post-it notes. He dislikes hot weather but absolutely loves the hot sunny beach of a winter Mexico vacation. Mosquitoes and other bugs flying around his head make him feel “buggy” so he’s often found swatting them with his newspaper. Without question, he drives the cleanest car in town and makes certain I do too.

He has been my best friend for over thirty five years, which includes twenty five years of marriage. I assume his many friends would agree he’s not only kind but one of the friendliest guys you will ever meet. As a son and brother, he connects to his family with an open heart full of love and commitment. Since the mid 1970’s that abundant love overflows onto me, creating a bond that instantly made them my family too.

Donn and I have shared more life experiences together than apart. No matter what, Donn’s loyalty is constant. When my Mom needed a wig during cancer treatment, it was Donn that drove us to Dayton’s in Southdale. At a social event, Donn will always find the time to chat with old neighbors about all the fun they had growing up near Lonsdale. He’s the kind of person who loves when someone asks him to help with a project. Sure to arrive with a trunk full of things he has to make the job easier.

Donn cries at weddings and screams “like a girl” watching a scary movie but is embarrassed that he does. He’s the type of husband that never leaves without kissing me goodbye. Everyday he comes home from work with a smile on his face. He is a hopeful optimist, never giving up on me or our family even though some days were pretty rough. He supports me one hundred percent even the day I came home from work and said “I’m quitting my fulltime job to “Be The Change”.

In his role as Dad, Donn gives me a glimpse of heaven each time I witness the depth of his love for our two children. In addition to saying the words I love you, he demonstrates love in action. Teachable moments he has with Jessica, makes me wish I could stop time. The silent grief he carries for angel Michael makes him a hero. My memories of Michael and Donn together lend moments of perfection.

Donn helped his parents wash windows a couple of days ago. In an email note of thanks his Mom said, “Through our windows, the world looks better.” Her words reminded me of looking out the windows of Michael’s hospital rooms, most of them water spotted and dirty. Never allowing a clear view of the world outside, something each of us longed for. It’s where I learned random acts of kindness go beyond the act. They provide a fresh gaze with a new hopeful view through any window. It did then and it does now.

Thanks Donn, for giving us a better look at the world through clear windows of your love, kindness and respect for life. People like you inspire others to Be The Change!

Read before you sign

As patients we sign a few forms before clinic appointments, hospitalizations and surgical procedures. A recent Eyewitness News report suggests we should be more aware of what we’re signing these days.

Prompted by online review of doctors has some healthcare providers adding another form to sign. In addition to an already overwhelming stack of paper work requiring signatures, patients must be cautious of a waiver called “mutual agreement to maintain privacy.” This kind of agreement can be categorized as a patient “gag order” and, according to Angie’s list, its use is relatively new. Angie’s list offers an online collection of consumers real-life experiences designed to help members find high quality service companies and health care professionals.

A patient can expect to sign a few forms such as release of medical information or HIPAA Privacy and it’s no secret many patients don’t read the myriad of paperwork handed to them. Along with that concern is; are patients provided a proper atmosphere or time frame to read and understand lengthy important forms?

Now adding to those issues is a type of “gag order” waiver, which apparently can be confused with a HIPPA form. This should definitely make patients take another look at what they’re putting their signature on. As consumers we should never hesitate to ask questions or feel pressured to sign something we don’t completely understand especially when it involves our healthcare. If necessary, ask for more time to read forms or request your healthcare provider to explain what the forms really mean to you as a patient.

In a respectful relationship between patient and provider there should always be time to discuss concerns whether it’s about paperwork, healthcare or other. A healthcare provider giving quality medical service should be confident in patient word of mouth acting as the best marketing tool available, having no desire to sign that away. In a patient-provider team, open dialogue is critical for obtaining the level of trust exceptional healthcare demands.

Be The Change agrees with Angie Hicks, founder of Angie's list, “If a doctor is asking you to sign this, they are not trusting you, so maybe you shouldn’t trust them.”

Next time you have a few forms to sign read them first…. Be The Change!

One missing....

I have seven wonderful brothers and sisters. Together as siblings we have weathered many storms; Mom’s cancer years, Dad’s sudden massive heart attack and Michael’s rare disease.

I love them both collectively and individually and share unique relationships with each of them, especially with my three sisters. As women and mothers, we travel a road distinct from my brothers. We recognize features in each other that nurture the treasured place we come from. Others comment about the similarities we have, which are proud moments for me.

The last few years, I've shared a weekend with my sisters at an exclusive B&B up north. (That's what I call my youngest sister’s home!) This year, four turned into three because my oldest sister was missing. Ovarian cancer treatment currently limits her choices, but a faithful and hopeful optimism continues, leading her towards a healthy future.

I struggled with whether or not we should do sisters weekend this spring since all of my sisters weren’t able to partake. Should we still go regardless of my oldest sister’s plea to go with out her? This particular week was picked months ago for an opportunity to watch our nephew’s high school play performance. We certainly didn’t want to disappoint him in having “the aunties” from his Mom’s side in the audience.

During my decision making process I began to recall times when I encouraged my siblings to do things without me during some of our personal healthcare circumstances. That actually helped me make my final decision.

We don’t always get to choose what we do, or if it will be together or apart. There are seasons each of us will walk a narrow path purposely built only wide enough for one. In life’s occasions one might be missing, either temporarily or permanently. I believe the best way to honor anyone missing is to live life joyfully and make decisions that best represents them. Joy isn’t simply defined by what is, but in what was and in anticipating what is to come.

In grief, one is acutely aware of something missing and eventually learns to adjust accordingly. In grieving my parent’s death and then my son Michael’s, I have experienced the importance of making choices filled with life giving energy. My parents often said, no matter what, with or without them, we are a family. They showed us that in standing together, we lighten the load of life’s burdens. Now I see my siblings demonstrate that philosophy, respecting the words of wisdom passed down by two people we adore.

I just returned home from my northern retreat with my two sisters. We had a good time but certainly aware of one sister missing. In our hearts, she came with us. We look forward to the next time we are all together to Be The Change!

Ways to be a wise consumer

WCCO News recently reported about Gov. Mark Dayton ordering competitive bidding for state contracts and a new level of financial disclosure. The story grabbed my attention since I have over twenty years of medical insurance experience plus it shouts Be The Change!

Real reform begs each of us, from legislators to healthcare consumers, to have a renewed focus on where our money is going. We must consider how much bang we get for our buck not only in the quality our dollar purchases in healthcare, but also in terms of insurance reimbursement standards.

The days are over when consumers only concern is insurance out of pocket costs in comparison to their premiums. Consumers have a type of vested interest in the ways medical insurance administration act as wise stewards with our healthcare dollars, which translates into available healthcare options and overall costs. It all goes hand in hand.

Be The Change supports financial disclosure and bidding competition for health plans. It’s necessary to build new pathways for some much needed change in that healthcare arena. Corporate profit can not continue to dictate the choices patients and families must then struggle to cope with, especially in the case of chronic and rare diseases.

Cub or Rainbow isn’t the only place we need to be wise consumers. Insurance choices such as a Health Savings Account and other similar plans is creating a product awareness that puts much needed focus on the cost of healthcare services rendered in relation to insurance coverage. Health insurance companies play a big role in the healthcare environment and need to reform along with everyone else.

Ask your clinic, hospital, pharmacy and even your insurance company about the varying competitive costs of services and reimbursement rates. Information is powerful therefore shop around, get more equipped to make wise consumer decisions and Be The Change!