Thursday, July 28, 2011

Happy Birthday!

Parents delight in preparing for their child’s birthday celebration, me included. When one of those children is an angel in heaven, preparing for that special day comes with few words adequate to describe it.

Fortunately, I’m surrounded by the love of family and friends, which includes their children, that makes this difficult time period less of a challenge. Such as the recent lunch date with my best friend’s son celebrating his 21st birthday. It reminded me of how anxious Michael would be for his coming of age party. No doubt Michael would have been a part of the evening festivities alongside his birthday buddy. Happy Birthday, Eric!

Our traditional summer vacation, in season seventeen, was enjoyed a few weeks ago, sparking many “remember when Michael” vacation memories. During that week my niece calling back “Hey whatie” to her boyfriends “Hey Julie” was a reminiscent mantra. The sweet sound blanketed my lonely heart as I recalled Michael’s numerous requests of, “Hey Mom” and my reply of, “Hey what”.

There are the emails and shopping preparations being made for a 16th birthday party for my nephew. At his request, a birthday celebration with his aunts and uncle comes with perfect timing. It is complete joy for me to be one of his party planners in the absence of planning Michael’s 20th birthday event. Happy Birthday, Ryan!

For the past six years celebrating Michael’s birth date, without him physically present, has come with ups and downs. Attempts to honor his special day are made, but often fall short of plans trapped inside unfinished. Despite the complexity it’s important, for many reasons, to still celebrate. I believe we honor Michael’s memory best by looking for every opportunity to experience fun and allow others to fill the empty space. Michael loved a party and he never wanted it to end. It’s one of his legacies.

Happy Birthday, Michael! Until we meet again, the party continues. Be The Change!

Thursday, July 21, 2011

Map a course

Unlike my husband and daughter who are gifted with exceptional directional ability, I am non-directional. Thankfully I am equipped with other skills to navigate the route of our life, especially with Be The Change.

My life has been infinitely altered by Michael, his SIOD diagnosis, treatment courses and markedly the day he died March 10, 2005. There have been countless days of confusion and unknown direction because of it. Although Be The Change was born from that season, its purpose was clear and mapped long before the title became reality.

Be The Change represents the patient family perspective in healthcare using our real life experiences to strengthen relationships and create partnerships with healthcare providers, outside of medical crisis. Be The Change defines the patient-family-provider relationship and sets a course to a patient family perspective view of the provider perspective.

It took me a long time to realize that as a patient and family member, I came into the healthcare environment with a narrow scope. Despite my vast experience I was only considering what medical providers could do for me. Now much more humbly, I consider what we can do together. I wanted healthcare providers to see beyond the diagnosis and see me, Michael, and our family as real people, but was I willing to see them as real people too. It wasn’t until a unique experience with a neurologist did I fully comprehend what that meant.

Michael and I had been waiting over an hour for his neurology follow-up. Finally, the doctor came in apologizing for the long wait and briefly explained he was detained by a pediatric emergency in the hospital. Outside of words, his face communicated this had been a traumatic experience. I offered him a few minutes to regroup but he respectfully declined. The appointment continued but I knew we needed to alter the normal course of our conversation.

I am a “lets talk about our feelings” kind of person so I asked the neurologist, “What do you do when you leave this place after having a really tough day?” Without warning giant tears escaped from his eyes and he said, “I should ask you the same question, what do you do?”

The direction of our relationship changed instantly after that short emotional conversation. We saw each other in a different light and became partners not only in Michael’s healthcare decisions, but in life choices. Because I began to see him more humanly than medically, it gave way for him to do the same. My initial impression of, “I don’t like this doctor very much” changed considerably over the course of time. In the end, this neurologist profoundly impacted the days I had to resign to Michael’s life course.

Here’s the bottom line. We all have the same basic needs, whether you're a doctor or a mother of a sick boy and we are more the same than different. Each of us whether patient, family member or provider requires human understanding layered with compassion and is made vulnerable by medical situations.

Risking emotional connection might lead to a detour, but it's sure to Be The Change!

Friday, July 8, 2011

Recycle spiral notebooks

They travel back and forth for months and every parent has them in an array of colors. Stuffed in lockers and backpacks, they’re available in wide or narrow and one to three subjects. Often used only partially yet contains a vast amount of random information, they are spiral notebooks.

A rainy summer day my kids would take another look at the spiral notebooks they used the previous school year. I wanted them to decide which pages would be saved and what pages would meet the recycle bin. Left after the data purging was a thinner notebook that still displayed their name, grade and subject. Those leftover notebooks were then stored with hope that the kids could use them again the next school year, which by the way rarely happened. Instead, they usually became the notebooks I used for shopping lists, yearly vacation notes, and recorded Weight Watcher points.

Here are three ways you too can recycle spiral remains taking up space, making them into a helpful medical device for patient family healthcare.

  • A recycled spiral notebook is a valuable tool at every medical appointment. It’s perfect for keeping track of current medication including medication changes made during appointments. It’s handy for note taking during appointments, which also provides a running log of information for future reference. A great place for jotting down any questions you think of at home and readily available for the next appointment. Be sure to make your family aware of your medical spiral notebook.
  • An additional recycled spiral notebook is helpful for hospitalizations and surgeries. This particular notebook should also contain a list of current medications. It should have emergency contact numbers and valuable information such as insurance phone numbers and location of your living will. It’s the perfect spot to write down questions for hospital medical providers or family members and for taking notes as medical providers provide information. Wonderful place for love notes from family too.
  • A recycled spiral notebook is at its best when used as designed, for saving notes. An excellent example, recently shared with me, is to use a notebook for aging parents struggling with memory issues. Writing a note in their special notebook reminds them of the date you were there or of a task that needs to be done or was completed. A simple notebook becomes a tremendous empowering tool that provides peace of mind.

These are just a few suggestions to give patients and family members a green alternative and cost-effective way to store information. I admit it’s not the latest and greatest technology advancement in data storage however; the cost of a spiral notebook can hardly be debated. In just a few weeks we’ll see this affordable item on the cover of every sale ad, many for less than a dollar.

I have two recycled spiral notebooks on my office desk right now. Every time I pull one out I see "Jessica Zimanske Grade 6 English" or "Michael Zimanske Grade 4 Spelling" written on the cover by them. The moment gives pause as I recall their school age faces and the memories held between the covers of those notebooks.

Recycling leftover spiral notebooks has sustainable effects. They are guaranteed to not only enhance your healthcare experiences but memories too. Only potential product warning for recycled spiral notebooks: CAUTION this item may cause you to Be The Change.

Sunday, July 3, 2011