Thank you Harmon Kilebrew Hospice Home for Kids Fund and Children's Lighthouse of MN for hosting the Home Plate Gala, January 17, 2014.
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.
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?
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 families...be bold, reach deep, take
risks.
Be the one who helps us open the
front door to the Children's Lighthouse.
BE THE CHANGE!
BE THE CHANGE!