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.