Sunday, January 19, 2014

Home Plate Gala 2014

Thank you Harmon Kilebrew Hospice Home for Kids Fund and Children's Lighthouse of MN for hosting the  Home Plate Gala, January 17, 2014.

"Let's do this; let's build this home"...

It's a tremendous honor for me to speak at the Home Plate Gala and be the ONE who represents the stories of  patients and their families who are waiting for the first children's respite and hospice home to open right here in Minnesota!

When I was younger and I heard or read big stories about sick kids and the sad challenges of their difficult life, never did I imagine I might be the ONE with a big story.

I'm your average small town girl; raised by a large southern MN farming family. I married my HS sweetheart and we have been blessed with two children-Jessica and Michael. We purchased a beautiful suburban home, had two great jobs and a pop-up camper in the driveway.

Then ONE day in 1997, perfect shifted.

At Michael's kindergarten physical in 1997 the pediatrician told us Michael wasn't growing so he wanted to run some tests. That was the start of a new way of life for our family. Two years later, after hundreds of tests and painful procedures another Dr told us Michael had a very rare genetic syndrome called SIOD. With carefully chosen words she said; MZ symptoms will only get worse, there is no cure for SIOD and Michael most likely won't live past age 12.

Never did I imagine I would be the Mom of a child with a life limiting disease.

There are too many appointments, hospitalizations and complications to mention in this short time so I will fast forward five years later, Nov 2003. Michael's SIOD affected five major areas of his little body so we had a big care team. Numerous specialty care doctors all of them in different locations. Michael was having daily dialysis waiting to be strong enough to survive a kidney transplant. Our new home away from home became the UofM.

Michael's earthly end came during a surgical procedure when his heart stopped and he suffered a massive brain bleed. There was nothing more they could do for Michael so the End of Life team was called in and on March 10, 2005 we said goodbye to our hero.

Realize that during those years from 1997-2005 as Michael's syndrome persisted, so did our other life responsibilities. I took a leave from my work to care for Michael's constant changing needs, which drained our savings account quickly. Our daughter needed us. She deserved some kind of normal, which meant I was often alone with Michael at appointments or in the hospital so my husband could be home with our daughter.

These are only some of the real struggles parents with sick kids have...their bills are enormous, incomes are strained and stress is everywhere. They aren't easy things to admit so they typically hidden inside an extremely complicated setting. The sustainability of family in cases like ours is at high risk. We needed a place like Children's Lighthouse. My life and our family life would have dramatically improved had pediatric respite and hospice been available to us back then.

Children's Lighthouse will be the help families need if the unimaginable happens.

In November 2004, we thought the worst was behind us. Michael was recovering from a successful kidney transplant. My husband was recovering from open heart surgery done two weeks after Michael's transplant. We thought we would finally get some time to rest. Unfortunately the worst was just beginning. Michael's infections took control and his weak body couldn't fight back anymore. Our big story got bigger when I was diagnosed with breast cancer and had a double mastectomy only weeks before his death.

These are the harsh realities I read about years ago. Now they are mine and our story illustrates the urgent need for children's respite and hospice. What I've shared tonight barely touches on the complexities life limiting diseases like Michael's place on the family. We needed a respite care option. The years of intense stress, fatigue and sleeping in hospital rooms on plastic chairs displayed themselves through me and my husbands declining health. We were beyond tired; both physically and emotionally. I got dangerously close to a breakdown; we just had no place to turn to for the kind of help we needed.

I wouldn't change what we did for our son and daughter during those years but we needed a place like Children's Lighthouse who could give us a chance to care for ourselves while Michael got the healthcare he required. We needed Children's Lighthouse again during those precious last days of Michael's life so we could have been in one place together, as a family, one last time.

We remain extremely grateful for the outstanding medical care we have available to us here in MN but it's simply not enough for a medical situation like ours. Not enough for so many patients and families who are experiencing this same difficult course of events right now.

Over the years I use to say something has to change; someone has to make changes that supports patients and their families in all areas of their lives that disease invades- home and family-not just medical.

Our Michael was also a change-maker; his life changed everything. Now without Michael we are the change-makers. My family and I are taking over where Michael left off.  Now I say I can be the ONE who will makes changes. 

What do you say when you hear something needs to change?

Will you help us build a place for kids with life limiting conditions and their families who are in desperate need, waiting for help NOW. Children's Lighthouse WILL make a difference. Children's Lighthouse will change lives. Be like these patients and their bold, reach deep, take risks. 

Be the one who helps us open the front door to the Children's Lighthouse.


Saturday, February 9, 2013

All you need is love

A popular Beatles song suggests, "All you need is love, love, love is all you need." Many have debated these words and wondered if they are true. Is love really all we need? Can problems be solved by the profound impact of love? I honestly think so.

Love is typically viewed as something heart-shaped and sweet; similar to "a box of chocolates." It’s an element of love that feels whimsical, passionate and exciting as the spoken words “I love you” leaves an imprint on your heart.

Another component to love is in the love that’s experienced. It’s expressed in actions and goes beyond spoken words. A production of I love you lyrics that becomes a melody of demonstrated words and defines love more completely.

There's also a special kind of love that’s developed in relationships containing the broken fragments of quiet grief, relentless suffering and painful changes.  That love journey becomes a reservoir of tangible and unconditional love unlike any other, which not only sparks at the beginning, but sustains during the bitter middle and ends in a resilient stride.

Loves impact is not exclusive to our personal lives but must also play a role in our professional lives as well. Consider the ease in corporate interaction when solely motivated by love. This may sound idealistic, but it’s certainly possible. Not only when the decision to stand on love is easy, but when the going gets tough with a risk of standing alone.

Love has the power to push fear aside. Love draws new dreams that are etched with hope. Love calms the unknown. Love speaks words inside the heart that become our responsibility to illustrate on the outside through acts of excellence. Love serves as an inspiration to others.

My daughter says, "We love, love". It’s true. We do. From the sappiest of engagement story to the extraordinary medical miracle, we believe love never fails.

Be The Change! Love, love with us this Valentine’s Day.
All you need is love…and a box of chocolates.

Monday, December 24, 2012

A star to discover

"If as Herod, we fill our lives with things, and again with things; if we consider ourselves so important that we must fill every moment of our lives with action, when will we have the time to make the long slow journey across the desert as did the Magi?

Or sit and watch the stars as did the shepherds?

Or ponder over the coming of the Child as did Mary?

For each of us, there is a desert to travel. A star to discover.

And a being within ourselves to bring to life." -Author Unknown

This Christmas and throughout the New Year, let His light shine in you like a bright star.  Light the way. Be The Change.

Merry Christmas and Happy New Year 2013!

Wednesday, December 5, 2012

Do you need some rest?

“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28

Christians all over the world begin Advent season this week. It's a holy time of preparation that offers spiritual nourishment and another invitation to find rest in biblical truths.

Rest for me as a hard-working young farm girl was found by sneaking in some private rest time during my household chores. I'd stretch across the living room sofa and watch TV for a few precious stolen minutes. I loved those rest times and admit to a few burnt meals because of it!

Fast forward to years later and I’m on my own living room sofa seeking a different kind of rest; a healing rest from breast cancer and the kind of grief that scars the soul. Unlike the rest I enjoyed as a young girl, this one I resented because it came forcefully, without my choosing and stole more than simple moments of time.

I developed a love-hate relationship with rest. When I was younger I loved my secret rest times, but now older and no more secrets, I’ve had times of rest I hated. Why did rest have to change?

Rest is definitely not easily found in a world that boasts of faster the better, which makes finding rest even more challenging. I can recall seasons of kid's school events and multiple sports schedules, in addition to varied work schedules, that were years of limited rest. Prior to that were the baby years when four hours of uninterrupted sleep felt like a good nights rest. However, all that paled in comparison to when rare disease filled my days and rest was nowhere to be found.

No doubt, my relationship with rest has changed. Mainly due to a dramatic turn of events that left me with lessons learned and a unique perspective on rest. During my healing rest, I was taught about grace and how it increases when rest is accepted as it's offered. Rest didn't change; it remained available to me. What really changed was my attitude about it. Hate had to change back to a love for rest in order to maintain a healthy positive lifestyle.

During busy seasons and the busiest of times, especially during or after illness, we are inclined to turn down loving offers to help. Ones that might be a good partner to a need for rest. We give polite yet not always truthful responses like, "No thanks, we don't need any help". The next time an offer of help is extended to you, ask yourself if your response is accurate? Could others help you find rest?

When we admit our need for help and humbly receive it we share burdens, however big or small. We find rest in this fast world and in a life that’s impossible to do alone. The exchange not only blesses the giver, but also the receiver and both find rest from the free gift called grace.

I’m a work in progress but I definitely strive to be a better steward of the gift by making room for rest in my life again; like I did as a young girl. I encourage you to join me and take time to rest this Advent season. Even in the middle of busy choose to stretch out on the sofa and rest. Put it on your list of things to do and Be The Change!

"Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls."  Matthew 11:29

Sunday, October 7, 2012

Where has summer gone?

The common filler phrase, “Where has the summer gone” is usually spoken as a rhetorical question. In blog retrospect, I want to reply to this typically unanswered question, with no exaggeration.

This is where my summer went...

Spring 2012 quickly moved into the summer fast lane in late May as I traveled the northern highway to my Godson’s high school graduation and later to his open house. In mid June I motored with my driver to Milwaukee, WI and witnessed the wedding of our daughter’s two college friends. Then on the last Saturday of June, in a Trellis garden wedding, my best friend’s daughter married her beloved. Truly, one of the best days of my life.

Early July, our rapid summer stride changed by the sudden death of my father-in-law, Myron. His spirit flowed from his favorite saying, “Ah-da-heck” and through a “life must go on” attitude as my family made tearful difficult decisions. Honoring those words, we altered calendar dates and made our annual summer cabin vacation on Lake Miltona still possible.

 A week later I packed a borrowed cowboy hat, my driver recalculated the GPS and I was on the road again to my first Country Jam experience in Eau Claire, WI. The blue bus shuttle provided excellent transportation as well as additional laughs and stories as I recalled school day memories. The hotel room was a welcome sight after a full day of country music in the Wisconsin great outdoors versus the bus view of tent camping.

During most Monday through Fridays of June - September I was employed by StayWell Health Management in St Paul.  StayWell has a long history with health management for large companies and their employees. It was a great opportunity to bring my healthcare experience into the health and wellness arena. Thanks to StayWell, I was able to learn much more about the delicate balance between healthcare and wellness in day to day application. I leaned on my real life patient-family healthcare past and brought the skills of previous lessons learned into a process improvement transition project for StayWell. That work just recently ended so I’m resting up for a new Be The Change opportunity! 

The crisp autumn mornings still have the radiance of an almost forgotten summer. Fall trips are planned and holiday conversations have started. From my perspective, each season seems to come and go more quickly especially as I travel a road paced soulfully by change. The events of the season, both happy and sad affect the pace and impact the direction of the path I travel next. So the real question might be; is it really the seasons that pass so quickly or is it the pace I choose? My choices, some more difficult than others, illustrate the answer.

Similar to the changes in life, a leaf once vibrant green changes into red, yellow, or hints of both and covers the color of yesterday’s season. It rests in the quiet of winter, trusts in the spring renew of tomorrow and prepares for another busy summer ahead.

Each one different yet collectively intertwined, divinely created and placed on a road to  Be The Change for someone.

Saturday, August 25, 2012

I am able

The 2012 Michael Zimanske Memorial Golf Tournament held Monday, August 20th was another success! Again, we were graced with excellent weather and a group of people who demonstrated excellence.

Thank you to the staff at Eagle Trace Golf and Event Center in Clearwater MN. The staff was welcoming and very helpful, which made the day flow with ease.

Thank you Roll With It (RWI) for their hard work in organizing this sixth tournament. We sincerely appreciate your commitment to wheelchair and adaptive sports.

Thank you to family, friends and all who support this golf tournament! Whether you golfed, volunteered, donated or prayed for this tournament, it’s our humble privilege to receive your kindness in memory of our angel, Michael Zimanske.

I spoke some of the following words at the close of the tournament and would like to include them in this thank you blog:

As I thought about the golf tournament this year, the words, I am able kept coming to mind. Coincidentally, (probably not) I am able is what Michael taught us. Despite his changing circumstances and even when a wheelchair became his mainstay, he never backed away from things we thought he wasn’t able to do. Instead, he found another way to do them. Michael consistently saw himself able and demonstrated that to the world.

Now, pressing forward with Michael’s spirit within us, we display the words I am able by our actions. It’s what I see in all of you during the golf tournament. You are able and willing to give of yourselves for the good of others. You honor Michael’s spirit of I am able by giving to this fundraising tournament. Your efforts help others believe they are able too.

Thank you to Jan Larson, RWI Executive Director, Keith Schwichtenberg RWI President and the whole Schwichtenberg family, especially RWI Founder, Heidi Schwichtenberg for leading us and giving us opportunity to say, I am able. Their vision has planted seeds of hope and possibility for many by their response to the words I am able whispered in their souls.

Thank you, thank you, thank you to this circle of love. You organize, donate, golf, volunteer and surround us with prayer before, during and long after the golf clubs are put away. Simply put, we are grateful beyond these words. We feel your arms wrapped solid around us, in loving memory of our hero, Michael, which allows us to keep trusting I am able.

Each one of us is able despite our own personal circumstances or challenges. We are able, however big or small to do something that will make others able.

Say it loud, I am able; able to Be The Change!

Friday, June 1, 2012

I had to change

We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person. ~W. Somerset Maugham

Michael, my 1990’s shopping companion was about to destroy another display at Cub. With a firm tone and muted growl in my voice, I said, “Michael, don’t touch that.” . The three year old looked up at me with a smile as wide as his face and a can of peas in his hand. In that split second my frustration faded. Although I had spoke those four words to him at least a million times prior, this time I saw it was my response that had to change, not only his behavior.

That little boy couldn’t resist touching everything. It was the way he experienced the world and everything in it. In the grocery store aisle Michael showed me his style of learning and that it was beyond his grasp to do it a different way. In many ways I was trying to reshape his makeup to be more like mine, neat and orderly instead of accepting the way he was created.

From that day on Michael showed me new ways, which helped me learn something about myself and then accept others things that were also, definitely not. what I preferred. Situations that often got messy and extremely complicated, especially with his rare disease.

I had to change.

The skills that Michael taught me flowed through my soul as I coped with my own illness, his untimely death and then the enormous grief, which followed. I discovered another level of accepting the statement, “It is what it is,” along with the extremes of unconditional love and learning what I was created to be.

Again, I had to change.

When we look at others, hoping for a change in their behavior or habits it almost always requires a look in the mirror and first asking what do I need to change? Life is a string of changing seasons that connects parents, children, family members and friends together. It’s important to hold each other loose; allowing changes to be directed by the creator and shaped into a better relationship, which prepares for the next season ahead.

I always thought I would teach my children the ways of the world and instead it was them anointed to teach me how to be the change my family needed. We don’t always get to choose our teachers. Many reside among us in life’s classroom, ready and able to show us a new way.

Stepping forward, I know there are more changes ahead, for all of us. Even at Cub when you hear, "Clean up in aisle five."

Be The Change!