A long way home

Whether we realize it or not, we are constantly in search of the road that leads us home. Every day in some varied and subtle way we look for home.

During the day to day Monday through Friday work grind, we daydream of the highway that leads to the comfy couch in our home. On Sunday afternoon, we wish for the Friday night of yesterday, which holds the promise of two days at home. Even on vacation, we secretly wait for the first evening home to lay our head on the familiar pillow we missed.

It’s stepped out in love that’s found in the mother who waits for her student to step off the school bus and return to the securities of their home. In the late night pace of a father who waits for the sound of the garage door and his teenage driver to arrive home without a scratch. In the parents who anxiously wait for the summer return home of their college influenced young adult. Each in their own individual confines, family members look for a collective path home, even if it’s only shared in memories and stories.

As a young girl I would stare out the window from my upstairs bedroom and dream of a different home that was waiting for me beyond the dusty farm road. Now older, I wonder why I was so eager to leave the gravel lane of my home. Reflecting back, I’m able to return there. In my soul, I still live there. In retrospect, it was all part of the journey.

It’s not a cliché or just a line from an old movie. There really is no place like home.

I have lived in many homes over the years. All of them were beautiful, comfortable and served a purpose. But as the years fast forward and my home dynamics change, I realize I’m most at home with people I spend time with, not the house I reside in.

Home travels with us on uniquely planned paths we stroll through in our world. On roads that are more the same than different when they are viewed with eyes of gratitude. We are not our exterior. We reside in the sacred of our interior that will always lead us home.

What place do you call home? This Friday, after a long way home from your travels and before Monday’s in view, take stock of your own little corner of residence. Be The Change because of it!

I love Easter

Actually, I love every holiday because at the center is family. I have many brothers, sisters, nieces and nephews, which translates into lots of family time. Just the way I like it!

In varied examples, different for each person, a term like family often extends out into friends who are like family, a spiritual family prayerful and faithfully connected or even a healthcare community formed by similar diagnosis can feel like family because of their shared experiences.

My family is rooted in tradition especially religious ones. That means many evenings during Holy Week are spent at church. Back in the day, retail business in our small town closed at 3:00pm on Good Friday, which gave everyone equal opportunity to attend their church services.

Although the years have faded many Easter holiday memories, there's a few vivid ones I hold dear: The sight of my Mom peeling potatoes at the kitchen table in preparation for our big family dinner. The colorful Easter basket filled with candy that me and my siblings shared. The Easter egg hunts at my husband’s family farm when our kids were young. These visions dance with others and are inspired by love; the very essence of Easter day.

Every family does a dance and the lessons are our experiences that turn into our memories. As a family we learn a melody of a song only each other knows and dance steps that go along with it. There are times when we’re all in tune and move along methodically. Other times, one or random few learn a new song and they become teachers of a new dance step the whole family can learn. A new rhythm can be complicated, confusing, and out of step. But love unites the family members and shows the way until everyone knows the tune again.

Our fondest memories are created in the experiences we share as a family. They are held together by invisible love strings that bind us with a purpose that requires more than a surface glance. I attended a workshop recently where it was said that when a healthcare provider sees a patient they should see the family too. That resonated in me, not just because of my medical experiences but because of the current Easter season with my family.

People see us as individuals, but they view parts of our family in us too. We represent each other not just physically, but emotionally and spiritually by our choices, decisions and actions. Each one of us, in the unique way we were created, are influenced and inspired by family. Not just our biological family but also by the additional family categories I mentioned earlier.

Whether it's a polka, gentle waltz, or even an occasional cha-cha slide, get familiar with the dance steps only your family knows. Treasure them and value each ones purpose. You never know when one of your dance partners, for one reason or another, has to sit out temporarily or maybe permanently.

The dance continues to move by lessons that teach the steps. Each one renews the other and creates experiences that might Be The Change!

March...In and Out

As the saying goes, March roars in like a lion… and goes out like a lamb so dear. These popular Lori Hill words are especially true for me.

Among the typical March occurrences like the return of the Robins, warm outdoor temperatures, and disappearing snow is the anticipation of my son Michael’s heaven day. A term we fondly use, which marks the day Michael left our Lakeville home to his eternal home in heaven.

Michael’s heaven day has occurred seven years and similar to the March saying, it comes in roaring like a lion and gracefully leaves softly, like a lamb. The anticipation of the day always seems to disturb its loving contents.

Preparing for the arrival of the date jogs all sorts of memories. A wider view makes me realize I’m not alone in this kind of solemn space. There are others who anticipate March in this way. Our friend Darby has a March heaven day. He rests with several who have this kind of March day and other family’s who might be familiar with the roar.

Just like spring, there is no plausible way to stop it or the flip of the calendar from February to March. In my spring excitement are the sleepless nights and loneliness so concrete it’s almost touchable. But when I press in and look beyond my circumstance, Michael’s spirit flows. I can recall the memories of a happy boy full of life; his charm, his smile, and the fun, which defined him. Not just in my thoughts but he is revealed through others in the stories they share, their smiles and joy in a life with Michael and now a continuance with us who remain.

I was reminded of that very thing at an organ donor follow up I attended recently with my sister Marilyn. The appointment coordinator asked us several questions about the circumstances that led up to this organ donation. She wanted to hear our story. I saw love in my sister’s smile and heard love in the words she spoke about Michael and her decision to be his kidney donor. What a gift!

Michael’s spirit lives in those who love him. People continue to know Michael through us. We honor his life, our love for him and the Creator, in the way we live our life. That is true for each one of us.

This spring, March 2012, we once again celebrate the life of Michael Zimanske. He roared like a lion, he left like a lamb and created a legacy called Be The Change!

You won a trip

The caller said, "Is this Theresa Zimanske?" Hesitantly I replied, "Yes". The caller quickly announced, "You have won a trip to San Diego, compliments of Fox 9 Morning News." Silence; I didn’t know what to say.

I glanced at the front door unsure of what to expect next. Was there a group of people by the door with a balloon bouquet in hand? No-one was at the door. The caller persisted and ended my shocked silence when she said, "You do remember entering the contest, right?

Then my more typical chatter shifted into gear as I explained to the Fox 9 news marketing coordinator, that this type of thing never happens to us. We never win contests, especially something like this. She hears that often was her reply and I sensed a smile in her response.

Suspiciously, I waited for the stipulations and hidden costs to become a part of our discussion. But with every one of her answers to my questions, the suspicion was lessened. She assured me the prize included flight, hotel and rental car at no cost to us. I won a trip! Non-stop air travel to San Diego, CA. Five glorious days at a hotel resort on Mission Bay. What a huge blessing.

Recovery from illness and grief is a silent battle often fought while most others are unaware. A trip, whether long or short is a saving grace that provides the necessary respite for a weary soul. Sometimes I’m asked to suggest ways one can push through the kind of grief piled on by the loss of a child. I admit there’s no easy answer, but in my opinion, going on a trip is one answer to that complex question.

A trip, even for a day or two, gives me the opportunity to rest and ease my burdens in a remote, more relaxed environment. It calms the sea of accumulating emotions in a neutral safe zone. Lends ample time to read, write or have delicate conversation about confusing issues, unraveling their complexities.

Once home, I find myself more confident, ready to move forward again, and back into whatever waited that now needs attack. By no means do I leave it all behind. That's far from the truth. But a change of location complete with the rest and fun vacation provides, gives me a renewed perspective over the various things I war against. Loneliness, discouragement, and grief fatigue are a few, which dissipate on a sunny beach or an afternoon boat ride.

Whatever your burden is, seek what gives you rest. Whether your fight is illness, injury, loss of a loved one or other, consider taking a trip. Even a one day, coupon inspired excursion, away from daily ups and downs can offer a fresh and renewed approach.

Who knows, maybe you too will experience an unexpected call from someone who’s about to Be The Change when she says, "You won a trip!"

It's a birth date

A few of my healthcare experiences happened as I waited for the grand entrance of my first baby, scheduled to arrive late January 1988.

As a wife and soon to be new mother, it was the happiest of times. As a daughter it was challenging times because of a mother with cancer in its seventh year. Those years spent with Mom at oncology appointments, emergency room visits and hospitalizations definitely prepared me for the many healthcare obstacles I faced.

Due to my Mom’s declining health, I felt the limitations held inside joyful anticipation when multiple life altering situations are happening at once. The days my Mom prayed to live long enough to see me walk down the aisle were now being replaced by new prayers for another gifted opportunity. To hold another grandchild and see one more of her children have a child of their own. I understand her deep desires much better now.

My baby was born January 18, 1988 making that particular day a one of a kind, very special day. The pediatrician’s words of, “it’s going to be a couple weeks yet”, which he spoke to me a few days prior, made it an unexpected and welcomed early birth date miracle.

My birthing experience was dramatically altered by a nurse working the early evening shift on 1-18-88. My water had broke the day before and trickled without any contractions. I was admitted to the hospital that evening. In the morning with no sign of contractions, a medication drip was started. That produced immediate and intense labor contractions that continued for ten hours with only fifty percent progress.

When that evening nurse came on duty, discussions and preparations for a cesarean birth were already underway. I’ll never forget the moment she came face to face with me and said, “Theresa, you are not having a c-section”. Minute by minute she instructed me and provided laboring techniques that worked! At 10p.m., weighing 6 pounds 12 ounces, a princess was born - without surgery.

Unfortunately, I have never spoken to that nurse again. Her skill changed the whole experience. Not only on that birth date but in the days and months that followed. Her commitment and conviction impacted both my medical and human experience. If I had the chance, I would tell her without a cesarean birth, I had the energy to care for baby Jessica and for my seriously ill Mom. Both things equally important to me and were made possible by her outstanding labor and delivery expertise.

Those were extremely happy times, despite the challenging ones mixed in. I can recall the look of awe and wonder on my Mom’s face as she held baby Jessica for the first time. I hope I have that same look every time I see that baby’s face. Even now, twenty four years later.

Happy Birthday Jessica! Be The Change girl,
Be The Change!

In this house...

Be The Change was first spoken in our house just a few years ago, yet I believe its purpose was spoke long before that. I questioned who can Be The Change while bombarded with the kind of changes most can hardly imagine.

In this house, Be The Change is inspired by the life of Michael Zimanske and educates the world, especially those involved in healthcare, that our real life experiences challenge each one of us to Be The Change. This expanding campaign gives a voice to the perspective of patients and their family members with positive impact on relationships with medical providers. It offers endless opportunity for everyone to join in and Be The Change in their respected role.

The intention of the Be the Change campaign is to motivate and spark change in others. Little did I know I would be the one most changed by the compelling stories and countless experiences shared with Be The Change makers.

Most definitely, I’ve been primarily changed by rare disease and the passing of my son's earthly life to his eternal one. Michael was a life changer, a big change maker. However, I’d be remiss not mentioning I’ve also been changed by my parent’s medical scenarios, their end of life events, my own breast cancer and my husband's heart condition. It’s a lengthy medical list defined by medical and human experiences, resulting in life changing events, which speak into Be The Change. They are at the heart of the campaign and created more change makers.

In this house, among the varied changes are model change makers. They enlighten, teach, and encourage as we travel a changed bumpy road together. First and foremost, they are my husband and daughter who always believe in me, my family and friends who stand by me. Faithful change makers that demonstrate how to love a changed person with no manual or instruction.

Additionally, I’m constantly changed by healthcare providers inside and outside of medical crisis through gifted talent. Medical change makers who believe with me that each one of us share in the responsibility to Be The Change. They think outside the box and put provider-patient-family collaborative care into day to day practice. These women and men are our medical future, striving to provide high quality and safe healthcare for us. The outcome is humanized medicine through service hard to measure.

Most profoundly, I’m changed by the patients and families who today fight the battle of disease, especially rare disease such as SIOD. They are courageous, resilient warriors that give definition to the word hero, with no badge of honor. Each day, weary from the day before, they stand bravely in the midst of tremendous human and medical challenges and press on. For them, BTC continues with a promise to advocate on their behalf, represent hope and possibility in their perspective and will never forget the face of suffering.

Thank you change makers, for doing great things. Mother Teresa once said, “Not all of us can do great things. But we can do small things with great love.” That’s what we do in this house.

Happy New Year…Be The Change in 2012!

Present or presence this Christmas

My son Michael loved presents. Christmas morning he would line them all up, counting each one, in anticipation of the moment he could rip one of them open. He would tally his number of gifts against the number of gifts his sister had. Every parent and child knows the discussion that followed.

As the sixth Christmas approaches without Michael physically present and longing for his presence, these memories are priceless treasures wrapped inside my heart. They quiet my grief and provide clarity in the debate over presence versus presents, especially at this time of the year when making gift giving choices.

Although Michael loved a large number of presents, it was my presence before and after the gifts were opened that he loved even more. He desired my full attention while he counted each gift and as he guessed what each one contained. He could hardly wait to have me play the new game with him he received Christmas morning or sit next to him drinking pop and watching the new movie Santa brought. I recall some of my responses to his persistent requests for my time. In a minute Michael, after I finish dishes, I need to make a quick call, were a few.

It was my presence in those experiences that made the present more valuable to Michael and definitely to me, then and even more so now. Due to Michael’s life limiting disease I was naturally more sensitive to each passing day. However, it was still a challenge to find a balance in it all. Often our circumstances or my daily tasks at hand became more important than the gift of time together.

Michael was relentless in asking minute by minute when it would be time to open presents, at Christmas or other. I was always present for his gift opening but I’m quite sure I wasn’t always as present other times. Moments that didn’t seem as important as the things on my to- do-list, but in retrospect, they really were. I don’t remember the gifts we gave Michael, but I remember the times we spent together.

I’ve become much more conscious in how and what I give and the meaning that drives it. It’s one of the reasons behind the choice to not send Christmas cards this year. Even though I consider it an important tradition, my time and presence was needed elsewhere. Each year, its many changes invite us to ask the question, where are my gifts tangible and other, most needed?

Because of the experiences I’ve had with people in my life no longer able to open presents with me, I find little reason to debate presents versus presence anymore. Being fully present in relationships, giving our presence just as much or even more often than presents, is usually the real gift we seek. A little boy taught me that.

From our family to yours, Merry Christmas, Happy New Year and…Be The Change!