Wednesday, September 22, 2010

In sickness and in health

Twenty five years ago I said, “I do” to my best friend on a rainy September Saturday. We vowed to each other, “from this day forward, for better or for worse, for richer or for poorer, in sickness and in health”. In those words we promised to stand by each other in marriage, no matter what, as husband and wife, the epitome of relationships.

Back in the day, many engaged couples preparing for married life together, selected tableware at Daytons. My fiancĂ© and I went to Daytons but the hair salon instead, helping my Mom select a wig during her cancer treatment. In one way or another, our marriage has appeared secondary to illness, including the rare disease diagnosis of our son. Usually, I don’t share many of the events that make up our life story, assuming the majority of people will consider it impossible to believe.

Truth be told, it’s a story of two soul-mates who love each other deeply, unconditionally and faithfully. A relationship defined by a partnership that values respect, service and commitment. Mistakes have been made but because of them, we are better than we were the day before. We are richly blessed by family and friends who have celebrated with us and cried with us, in sickness and in health.

Now, twenty five years later, we more accurately understand the gravity of the words exchanged on our wedding day. We can’t predict what the future will hold but faithfully we can look forward to what lies ahead. Possibly another exciting twenty five years together, assured that no matter what comes, we can endure.

I do, continues to be spoken silently in daily acts of kindness. Honestly, the words I spoke in September 1985 are the same ones I would say today to the same man who's still my best friend. DZ, for as long as we both shall live, I promise to love, honor and cherish….and of course Be the Change.

Wednesday, September 15, 2010

Laughter and tears

“I will have a regular coffee with a vanilla sugar-free shot” is what I said every Wednesday morning before meeting three wonderful women to share a morning cup of coffee. I looked forward to my time with “The Coffee Ladies” except for Tuesday nights. They often felt a bit short because of the early rise required the following morning. We met once a week at 5:30 a.m. for an hour or two, depending upon varied schedules and the topic of conversation.

At times, I questioned my ability to stay committed to that early hour. Yet, the pearls of wisdom and faithful visions I was given each week not only equipped me for the challenges I was facing but, removed any doubt as to my return the following week. My time with the coffee ladies began shortly after Michael went to heaven. Jessica was finishing high school and preparing for college. I was healing from cancer treatments and devastating grief, somewhat unaware of my desperate need for restoration, so the timing was perfect. In a circle of love around a small table, the importance and value of relationships was, once again, demonstrated to me.

It was not unusual for me to be laughing one minute and crying the next, all while sipping coffee, soaking in graceful insights and valuable truths. Many things spoken by the coffee ladies embrace me daily similar to the way those women did every Wednesday morning. However, one particular statement stands out in my mind. “It is laughter and tears all in one day”. Those words of wisdom dramatically changed the way I grieve the loss of my son.

At the beginning of my grief journey, I tried to compartmentalize my sadness, saving it for only certain times and places, which honestly, made it worse. The grief of loosing a child, attached to the necessity in moving forward without him, is experienced daily. It is impossible to put it into a tidy compartment, separating it from everyday activities. When I learned it’s doable to cry and laugh all in one day, sometimes all in one minute, it opened my heart’s capacity for joy. It taught me that joyful is different than happy. Joyful is a state of being, happy is merely a feeling. Even though I might have cried at one point in the day, I could still remain joyful and have a good rest of the day, despite feeling sad for awhile. Shedding some tears gave my grief an exit, which created new space for other things such as hope and gratitude.

Through laughter and tears, I display the depth of my love for Michael and my whole family. It also, gives others the chance to do the same. Typically, it will lead to a story that brings renewed life to a fading memory. The trusted relationship that developed among the coffee ladies, gave way to the sharing of life experiences and simple, yet profound, wisdom. Created and designed uniquely by a partnership that enhanced our human experiences.

Currently, meeting for coffee early Wednesday mornings doesn’t happen for the coffee ladies. However, the fruit from seeds planted by women changed through faithful discussions around a table, does. It’s the very heart and soul of Be the Change.

Friday, September 10, 2010

A human experience up close and personal

It was late Monday afternoon February 2005, six months after his kidney transplant, when Michael was being admitted to the hospital with pneumonia. It started with a fever the night before. Michael begged me not to take him to the emergency room, even promising to keep a cool towel on his forehead in order to keep the temp down. He said he just wanted to sleep in his own bed that night. Considering he had a follow up appointment already scheduled at the University of Minnesota in the morning, I gave in to his request. That was the last night Michael slept in his bed on 250th street.

His mid morning appointment at the UofM dragged on for hours. We waited and waited for the lab results to confirm what I already knew. Michel had another infection and I could tell it was getting worse as the day wore on. His low grade temp remained steady the night before but now it was climbing. Definitely not the day our family had planned for that particular off school and work Monday. It was suppose to be a short appointment for Michael, lunch at our favorite Chinese restaurant, and then off to the American Cancer Society to pick out my wig. I was preparing myself for chemotherapy, which was the course of treatment following the bilateral mastectomy I just had done. Amidst everything, I was diagnosed with breast cancer in December 2004.

That gloomy Monday in February, we desperately needed nursing care that went beyond the usual admit check list. Not just for Michael, but for me too. After multiple frustrations with the original admit nurse, my husband sought help from another nurse he happened to locate at the nurse’s station. She listened with her heart as we explained our situation. We needed a private room that Michael could navigate with ease in his wheelchair as well as accommodate a cot for me to lie down on. Despite the drain tubes still in place from the mastectomy and pleas from my husband to go home to rest, there was no way I was leaving Michael. Instinctively I knew he was much sicker this time than we were willing to admit to ourselves. Plus, I had promised Michael, long ago, that I would never leave him and I wasn’t going to break that promise now.

The second admit nurse arranged a hospital room that had two beds in it, which allowed me to stay with Michael and take care myself too. I wasn’t able to lift Michael because of my mastectomy so she arranged a male nurse for Michael’s bathroom assistance which meant my husband could go home in the evening to be with our daughter. She became my partner in meeting Michael’s physical and emotional needs, those of our family unit and mine as his Mother and a cancer patient. Unexpectedly, that February hospitalization turned out to be Michael’s last. That second nurse gave me a priceless gift in the way she arranged for me to stay with Michael. Outside the box thinking and top notch medical skills, she displayed with excellence how to nurturethe human experience in a complicated medical scenario.

That exceptional second nurse is one of the many faces behind Be the Change, representing how one person can affect the human experience, completely altering how a patient and family cope with medical trauma. She understood our human need both physically and emotionally, which created a human experience I will never forget. It’s an experience that has often comforted me as I grieve, reaching far beyond the kindness extended in a hospital room.

Be the Change believes sharing stories such as that, allows them to make an impact on the medical community, which will influence the choices and decisions they make. We hope in sharing this story, another family won’t have to look for a second nurse to
Be the Change.

Tuesday, September 7, 2010

The human experience

Clearly defining ways to enhance the human experience in health care is easily avoided. Mainly, because it involves an act of service that’s woven with many layers of human emotion, causing difficulty in knowing where each one stops and starts. Making attempts to explain what the human experience is can be daunting, and discussing it, challenging, because it tends to expose unrefined emotion.

Each of our unique, individual stories writes a different human experience based on the varying paths we walk in life. The human experience for a family involved in a short, one time hospital stay might be very different than the long, multiple hospital stays of a family involved in chronic or rare disease. Appearing to be different, there is a simple truth that is the same for both. Each experience demands a human element that requires mutual respect, understanding and partnership between all parties involved. Be the Change is anchored in that broad spectrum, regardless of how big or small the medical experience, devoted to patients and families seeking high quality health care as well as remaining intact as a family.

I was reminded just recently how difficult it is to integrate emotion with service. A medical provider must maintain a healthy balance between themselves and their work with patients and families. At the same time, they can’t lose sight of the human exchange, which is definitely the intricacy involved in providing the best possible outcome for everyone. A consistent presence and dialog between medical providers, patients and families outside of any medical crisis is how the patient perspective will define and protect the human experience, aiding medical providers in creating a healthy balance not just for themselves but for the patient and family too.

Concepts that speak into the human experience, going beyond mere words, are such things as making outpatient coordinated care a constant priority for every clinic or a daily commitment to consolidating inpatient blood draws for every medical provider. These conceptual ideas are frequently discussed and marketed but far too often don’t consistently match real, tangible action for the patient or even offered as a solution. These are a few of the insights and suggestions that come from personal experience and are a portion of a Be the Change presentation. Our real life experiences attached to medical expertise allows the human experience to impact change and becomes more action than words, providing an outcome we all desire.

Be the Change shows the medical community, my human self and the human qualities of a family that struggled from complicated dynamics of a rare disease. It is emotional, which makes it difficult to talk about, but makes it even more important in the attempt to keep it real, not just a diagnosis, displaying our everyday life experiences which have been altered and changed due to medical experiences. When we are willing to push through the fear of an emotional mess, we inch our way closer to a place where medical experiences are influenced by human experiences, aligned by both the provider and patient perspectives, giving patients and families a real chance in not becoming a statistic.

That combined medical and human experience will be centered by the best of the human heart and mind, giving those who suffered from a lack of humanness, a hero’s capability to Be the Change.

Thursday, September 2, 2010

We love weddings

My family absolutely loves a wedding. We love talking about weddings, planning events associated with weddings and of course, attending them. We are getting ready for a busy wedding season this fall, beginning with a wedding for my nephew and his beautiful bride.

To me, weddings are the epitome of love in the world. It creates a special place for those who are in love, to fall in love all over again. Equally, it lends a perfect opportunity for anyone desiring love, the chance meeting of the person in their dreams. Both scenarios offer a priceless gift to wedding guests that can not be contained in any gift bag.

One of my treasured wedding memories is from a family wedding held in February 2005. That special wedding turned out to be the last one we shared with our son Michael. The wedding was a grand event, not just for the bride and groom, but for Michael. Months of dialysis were over and a successful kidney transplant made him feel like the king of the ball. Guests at the wedding noticed his happiness as well as the numerous cans of Mountain Dew stacked on the table where he was playing cards with his cousins. His comment, “Thank you Auntie Mar for the kidney”, followed by another gulp of pop, made the day complete.

In his wheelchair, he danced the night away with a constant line of beautiful girls around him. For our family, it’s a circle of aunts, uncles and cousins occupying almost every inch of the dance floor, promising to bring out the dancing queen in each one of us. That particular February Saturday night was no exception.

Weddings are just one example of a complicated truth about love. It is absolutely wonderful but at the same time, it’s a risk. Nothing loved is without an element of risk. When a vow is made, either in a wedding ceremony or in your commitment to a child, an eternal bond is made. You and a part of the world are changed by it, making all the risk worth every minute of it.

Allowing me to speak about Be the Change to your group or organization involves some risk too. The risk lies in being impacted and changed by the stories of a boy named Michael who was willing to take risks, even in his wheelchair at a wedding dance. Courage moved him beyond the risk of limitations and discouragements, filling him with hope and possibility as well as everyone watching him.

I might need to brush up on my Cha-Cha Slide skills for the next wedding dance. Many would agree that’s a risk too. Whether you enjoy dancing or not, keep stepping towards the many ways you can Be the Change, and like Michael, don’t be afraid of taking a risk.

Wednesday, September 1, 2010

Vote 4 Hope


The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition

This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. We have a good idea that will dramatically help millions of children affected by rare disease, and we can win a grant that will allow us to fund this important effort! Fund Hope For Sick Kids – it’s as easy as a click of a button everyday in the month of Sept. Make A Difference – Vote Today!