In loving memory of livia grace stilke

the stilke family

We are the Stilke Family: Dave, Kirsten Mason and our angel Livia. 

Up until 2014, we didn't have anything different about us.  We went on with our daily routines, our goals for life, our little fights about brushing teeth twice a day...the normal family just trying to balance work, school and fun!.  Today, we are not the same.  We are different.  We are a family who lost their little girl way too soon and completely unexpected.  The crying, the grieving, and the loss has ripped us to the core and shook our entire being.  We didn't know how to get out of bed, continue living each day, and to try to still be good parents to Mason.  We didn't know what to do and it took us a very long time to try to figure things out.   We knew that Livia would want us to do everything in our power to help Mason through this loss, and to still give him a childhood he deserves.  You see, this loss could ruin us.  It could ruin our marriage, our being, our morals, our values.  But we chose to not let it ruin us, but rather, turn our loss into something extraordinary.  Livia was extraordinary.  So, we have chosen to never let her memory be forgotten.  To never let her life be a distant memory.  We have chosen to do anything we can to scream from the rooftops how amazing this little girl was, and we will live our lives just as she did; with grace, empathy, kindness and humility.  Our journey begins with our movement: Livgracefully.... not only to honor Livia but to LIVE and HONOR Mason as we try to figure out this new path we were placed upon.

So, who is this cute kid in the picture next to Liv?  Well, it's the toughest kid I have ever met, our son Mason.  Mason  is the greatest big brother any sister could ever ask for.  He's intelligent, kind, empathetic and funny.  He is in middle school and on the honor roll!  He's an archer, enjoys soccer and basketball and is quite a riot!  He seriously is the sweetest, strongest and bravest kid we have ever met.  We are honored to be his parents. 

Mason and Livia not only were siblings, but they were partners, in that they shared not only interests, but a disease that is quite rare.   They battled a disease called Cystinosis each and every day, but none would be the wiser.  They never let it get them down and they never let it stop them from doing anything they put their minds to.  They had each other to encourage, teach and battle this disease as best as they could each day.

Mason and Livia were both born with Cystinosis.  Mason was diagnosed at 18 months, and Liv at 8 weeks.  For years, they have held each others hand, and fought the fight each and every day...together. Mason taught Liv how to swallow pills, how to get through pokes at the doctors office and just how to live life to the fullest.  He was her teacher, her friend and her confidant.  Pretty soon, Liv took all her pills in one handful, and one gulp of water!  Mason was quite proud of teaching her this!

Cystinosis gave them both determination and a fight and courage most kids their age don't need or even have to deal with.  Today, it is difficult for Mason, as his sister is no longer with him each day, encouraging, and helping get through those difficult moments.  Sure, Dave and I are always there, but the bond between them was different.  Like almost this unspoken pact that they had: to help each other through this more than mom or dad can. 

We were tossed upon this unthinkable path, which is every parent's worst nightmare.  Mason is in the midst of grief so very different than ours.  His pain, like ours, crushing, but one in which we cannot fully grasp.  With this pain and heartbreak, we  have vowed to still trek through each day to the best of our ability; our goal focused on being the best parents we can be to Mason all while still remembering his sister and what she would have wanted for him.   We know he has a very special angel looking out for him and it is evident.  We want nothing but the best for him, and in our journey, want to also make Livia's  life known and not forgotten.  Livgracefully is set up to not only keep her memory alive, but to give back to Cystinosis and FMD research as well as give back to the things Livia was passionate about.  It is also to honor Mason and his fight he must continue on without his "partner in crime".  Our goal is to not only raise awareness, but to give back and to honor our children and everyone who is also living with special circumstances in the process.  It in fact is to do what Liv would have wanted:  Livgracefully and spread kindness and love.

Rest In Peace Lenny Robinson