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!