No perfect trick or treat

I have great Halloween memories with the kids. The 1991 Halloween blizzard when Jessica got her boot stuck in the snow trick-or-treating, dumping her bucket full of candy in the snow. The year Michael dressed up as a Dalmatian puppy and cried for ten minutes because he didn’t want his nose painted. The time Jessica carried two large pumpkins from the furthest corner of a pick-your-own pumpkin patch because Michael insisted we search the entire field for the biggest one, which resulted in me having to carry him and Jessica mad at Michael.

The list of memories could go on and on. On a week like this, they run through my mind like my favorite movie on fast forward. Inside the fun and the not so fun associated with these types of family events and the memories it creates, lies an important lesson learned. In real life, nothing is perfect. Perfect doesn’t live here.

We all desire that perfect Hallmark moment with our families, but most of the time, it’s in the imperfections that we find our most cherished memories. When Michael began having unavoidable pain from walking, he and his cousin dressed up that Halloween in Scream costumes scaring unsuspecting Halloween guests. The first Halloween Michael was using a wheelchair he was concerned he wouldn’t be able to go trick-or-treating because of it. That was until he and a friend decided they would both wear all sorts of bandages covered with blood (ketchup) and they used the wheelchair as the perfect prop for two kids dressed up as accident patients. Another year Michael was in the hospital on Halloween convinced he wasn’t going to get any candy because he wasn’t at home. By the time he left the hospital a few days after Halloween, he had a bucket full of candy and toys from a hospital version of trick-or-treating. In addition to that, his school friends shared their Halloween candy with him so he had two big buckets of candy that year!

Perfection is not only defined by acts done perfectly but in the excellence of the act. One of the many blessings in having a child with special needs is a view of perfect that’s indescribable. For example, there was an excellence in the way family and friends chose to adapt to any situation changed by Michael’s progressing disease. Love was put into action creating something excellent, which helped him as well as us face what some would call limitations. When in truth, the only real limitation is a delusional sense of perfect.

In representing the patient and family perspective, Be the Change will strive for realistic excellence in strengthening relationships between patients, their families and medical providers, which will improve health care. Patients and their families are omniscient, living with medical experiences that are imperfect yet excellent in the way they teach us what is really important. It’s the catalyst that will lead us to a health care environment that is less frustrating and more respectful of each others human experience.

The morning of Michael’s funeral his middle school friend wrote on Caringbridge, “I never knew perfect until I knew Michael”. In heaven, Michael knows perfect, that’s where perfect lives. Here, we are simply trying to Be the Change.

Are you honest with you?

Years ago, my daughter and I made a pact, promising to each other that we would always be honest. As a mother with one child in high school and the other in the hospital more than in junior high school, it was crucial. Often apart and surrounded by serious health care issues, my daughter needed to trust, without a doubt, that I was telling her the whole truth and vice versa.

By making that promise I discovered that in order to be honest with her, I had to be completely honest with myself first. Sounds simple enough until you’re in an extreme situation like the death of a child, which forces you to go deep inside your soul looking for answers to unimaginable questions. There, grace whispers, how honest are you with you?

At night, pretending to rest in a self created chair-bed next to Michael in his hospital bed, I would watch him sleep trying to contemplate life without him. It’s a scenario filled with heartbreaking thoughts and questions no parent should have to ponder. Even so, as Michael’s disease spun out of control, I knew earthly life without him wasn’t out of the realm of possibility.

That kind of reflection required a level of honesty that most of the time I avoided, which worked for a short time. Then our situation got to where I realized if I couldn’t be honest with the real truth held in my spirit, could I be honest with others, especially my daughter. Reluctantly, I let that soul searching question peel away layers of complicated emotions. Although an internal process it can also display itself externally in various ways while coping with the unknown. Despite my attempts to avoid it, then and now, I am consistently brought back to the same basic questions. Am I being honest with myself? Am I facing the truth, the whole truth and nothing but?

The patient and family perspective represented by Be the Change demands that same type of trust found in the pact I made with my daughter. It requires a commitment to the truth about our human and medical experiences, and the willingness to share them. Without a doubt it will include successes and failures. Respecting that commitment will lead us to a place where medical providers will feel safe to do the same because of new relationships, partnerships and value impacted by simple truth and honesty. Be the Change calls for monetary value to be given not only to experts with expansive titles, but also to patients and families with expertise schooled in another venue, which provided a unique title equivalent to any degree. In that type of fair financial exchange we will come to the table as patients, family members, and providers, elbow to elbow, as true equals in knowledge, insight and value.

Michael was very honest; sometimes in the wrong place and at the wrong time! Every Mother can understand what that's like. However, when he was being honest he challenged the rest of us to do the same, especially in the medical community. Be the Change keeps making progress by simply being honest, one new relationship and partnership at a time. In honor of Michael and all the ways he taught us to Be the Change.

October - National Breast Cancer Awareness Month

Five years later, I’m still surprised when someone asks me about my breast cancer. It’s as if I need to pause for a moment and ask myself, did I really have breast cancer? In truth, compared to the grief and sadness I felt from Michael’s death, the cancer, surgeries and treatment weren’t that bad. Even with the SIOD prognosis, it was still unbelievable what happened to Michael. I think a part of me hopes to wake up one morning and find out it wasn’t real. I guess, the same could be true for my breast cancer.

Every cancer patient has a story. It leads them to a vast array of choices and decisions regarding treatment, both physical and emotional. For me, with my family history, having a bilateral mastectomy and chemotherapy was a must. Then a couple of surgeries after that insured the best possible outcome with the BRCA2 gene present in my DNA. The breast cancer was removed ASAP, the risk of other cancer addressed and I have been cancer free since 2005.

My decisions regarding cancer treatment didn’t come lightly. It included multiple medical consultations, lengthy conversations with breast cancer survivors, books, articles, internet research and countless hours of prayer, which led me to informed choices with spiritual guidance. My life story definitely dictated my choices but along with that was a spiritual triangle of grace. There I knew the choices I was making were right for me.

October is National Breast Cancer Awareness Month. I stand among thousands who are also surprised that they have breast cancer. I encourage you to offer them support, love and respect in the choices they make based on their life story. Assumptions and judgments, often made, are a naive mistake. Be the Change lends its support by representing the patient perspective in honor of every person living with breast cancer as a part of their story. Also, in memory of those whose story includes grief of a loved one who has died from breast cancer, Be the Change embraces you.

My breast cancer prognosis is simple. “And now these three remain: faith, hope, and love”, found in 1Corinthians 14:13. I choose to live my life by those three categories, refusing to be defined by any medical diagnosis. Find your way to be defined when you dare to Be the Change.

Eye-opening experience with The Minnesota Daily

Imagine you’re a college student at the University of Minnesota. You take a few minutes away from studying to indulge in one of your favorite things - reading the Minnesota Daily campus newspaper. As you open the paper to continue a story from a front page article, you’re shocked to see a photo of your cousin and best friend. That’s exactly what happened to my nephew.

A few weeks ago, I was delighted to be contacted by Taylor Selcke, a writer for the The Minnesota Daily, who was interested in doing an article about orphan drug research. She found my blog and had questions about Michael, his rare disease and its effects on our family. As it turns out, my nephew wasn’t the only one who was shocked.

Even though Michael saw multiple doctors from the U of M who ultimately diagnosed him in 1999 Schimke-SIOD, I had no idea what orphan drug research was. I was surprised to find out that the Uof M has a Center for Orphan Drug Research and SIOD would be classified as an “orphan disease.”

Be the Change is in full support of any research, especially conducted in Minnesota, that can benefit any patient or family suffering from a rare disease. Thank you to Taylor Selcke for her contribution towards a heightened awareness of research for rare disease and the University’s Center for Orphan Drug Research. Since my family was unaware of these services available at the University of Minnesota, it’s another eye-opening experience demonstrating the extreme need for Be the Change. Click here to view Taylor’s article or see the full text pasted below.


Families look to ‘orphan drug’ development at U
Orphan diseases affect 25 million people in the United States
By Taylor Selcke

For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up.
The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two years for doctors to recognize the disease — Schimke Immunoosseous Dysplasia, distinguished by short stature, kidney disease and an overall weakened immune system.
The disease is estimated to affect one in every 1 million to 3 million people. It’s one of more than 6,000 "orphan" diseases in the United States. To be classified as an orphan disease, there must be fewer than 200,000 cases in the nation.
Orphan diseases affect 25 million people in the United States, according to Dr. Ramaiah Muthyala, an associate professor in the University of Minnesota College of Pharmacy.
And at the University’s Center for Orphan Drug Research, researchers are working on multiple new treatments.
"To have an orphan product, the condition must be rare and there must be some evidence that the drug will work for that condition," said Dr. James Cloyd, the director of the Center for Orphan Drug Research.
The Orphan Drug Act was passed in 1983, creating incentives for companies who may be hesitant to develop orphan drugs because of high costs.
According to Cloyd, more than 350 new drugs have been developed and approved by the FDA since the Orphan Drug Act of 1983.
To help companies obtain orphan-drug status, the University hosted a workshop with the U.S. Food and Drug Administration in August.
Minneapolis was chosen for the workshop because of the University’s Center for Orphan Drug Research, Cloyd said.
"This conference benefited companies who were intimidated by the FDA," he said. "It gave them a chance to sit face-to-face with an FDA staff member and get feedback immediately."
Cloyd said he hopes these workshops will accelerate the process of obtaining orphan drug status.
For Zimanske, there was not an orphan drug to lean on.
As he got closer to needing dialysis or a transplant for his kidneys, the Zimanskes moved Michael’s primary care to the University, just one of the many hospitals where they spent much of their time.
Michael Zimanske died just more than five years ago from a massive stroke. He was 13 years old.
For his mother, Theresa Zimanske of Lakeville, Minn., the experience brought enlightenment.
"When Michael was being treated, he really opened our eyes to the challenges young children face when they are diagnosed with a rare disease," said Zimanske.
Although from different parts of the U.S., Gina Gareau-Clark from Georgia can relate to the Zimanske family. It has been a year since Gareau-Clark discovered that her twin daughters, Julia and Maya, five years old, had mitochondrial encephalomyopathy, a disease that prevents the body from converting food into energy.
Her days are filled with multiple therapies, which the twins get at school and at home. It’s a constant struggle for balance, Gareau-Clark said.
"We want them to participate in therapies that would benefit them the most without robbing them of too much energy."
Julia and Maya need constant assistance to carry out activities many take for granted, like walking and talking.
"[Their symptoms] vary from day to day. Sometimes they go limp and lethargic because their body can’t produce enough energy," said Gareau-Clark.
Gareau-Clark doesn’t see a time when her daughters will be able to care for themselves — unless research and orphan drugs change that.
The orphan drug they now use is by no means a cure, she said, and it’s costly.
"It costs us $350 a month for the drugs Julia and Maya need. Over the course of the year, we have spent $10,000 in out-of-pocket expenses because insurance doesn’t cover it," Gareau-Clark said.
But Zimanske and Gareau-Clark remain hopeful that orphan drug research will provide better options.
"For now, all we can do is live day to day," said Gareau-Clark. "The heartbreak is always there. You appreciate your children so much more, and you want to hug them all of the time. Even though it can be daunting, be grateful for every moment and remember that they are here now."

Grateful

A kind woman working in the kitchen at the Woodshed Gathering Place located inside Zuber’s Homestead Hotel asked, “What would you like made for breakfast tomorrow?” As we chatted for a few minutes about the breakfast choices, I felt so grateful that she made breakfast. Last week, I experienced that type of gratitude many times during a trip to the Amana Colonies in Iowa. It was the kind of trip where saying thank you hardly seemed adequate enough in expressing my gratitude.

We share a treasured friendship with a couple who got married three weeks prior to us. It’s a relationship that began by two young girls who worked together and became friends, then grew into a supportive bond between two couples that have known each other over twenty five years. As our 25th wedding anniversaries approached, our husband’s decided to plan an anniversary trip for us, which would involve a surprise destination. The mystery location was finally disclosed en-route last Monday, including the fact that mini surprises would be embedded into each day.

From that moment on, each place we visited and every person we talked to, my friend and I shared our surprise anniversary celebration story with them. As we shopped and toured the sights, we got acquainted with some of the locals. It was apparent that a close knit relationship exists in this small community through valued partnerships. Our husbands became celebrities as people learned about their surprise anniversary vacation ideas and how happy they have made their wives.

A few things I'm grateful for:

~The comfort of a beautiful hotel
~Waking up to home-made breakfast
~The sights and sounds of my childhood
~The beauty of farms and majestic wineries
~A picnic lunch at 1:00 in the afternoon during the week
~Laughing from morning until night
~Friendships that last forever
~A marriage still full of surprises

During our vacation, I had another privileged opportunity to see exactly what Be the Change believes and it revealed an unplanned surprise. By sharing our anniversary story and some of our various experiences, new thoughts and ideas were sparked in the minds of those we talked with. Gratitude born out of acts of love were demonstrated, not just in words, but in action. It became its own unique form of influence, which impacted others, including us. By it we were all changed.

I am sincerely grateful and again reminded of the great value in sharing our stories, which allows our human experiences to Be the Change.

Click here to view R.A.R.E Blog Grateful in MN