By Marshall Hauge

Jesus said to the apostles: I give you a new commandment: love one another.  As I have loved you, so you also should love one another.  John 13:34

There is a belief, that to truly have a successful life, you have to experience this world to its fullest. You need to take on exciting adventures, learn new ideas, build great things.  This also includes building ourselves, becoming more aware of our existence, trying hard to understand the human condition and where we fit into this extraordinary world that God has created.

We build our lives, we build our families.  We build our friendships and relationships.  We try to build lives of significance, lives that matter.  What we do each day creates a tale of what our lives on this earth are about.  It will be our story forever.  We turn to God and ask Him how we should create this tale.  We ask Him for His guidance in finding the meaning in each part of the tale.

In short, we are trying to write the best story possible.

This concept of life as creating stories was introduced to me through Don Miller’s book “A Million Miles in a Thousand Years”.  I took this book to heart and started to look at people as story tellers of their own truth.Each of you in this sanctuary today has a story that you have written and it is told through the life you choose to live.  Each story is unique with no two stories being exactly alike, each with its own special meaning.

These stories are Epics of love and triumph, tragedy and loss, stories of tenderness and mercy.  But in the end, all these stories are written by those that are living them. 

I came to realize the essence of a good life was to actively write, to create a good story, one worth telling; maybe not in this world, but definitely in the next.  I believe these will be the stories that we will share with God when we see Him.  Did we live lives of compassion and love in this world?

I am not the sharpest pencil in the box and anyone that knows me can tell you that the eraser on my pencil is worn to a nub.  But in spite of the edits I’ve had to make along the way, I keep trying to write a good story.

When I met Livia Grace, my new found theory that life was an epic story each of us was writing, started to unravel.  This beautiful little girl who could not talk, was unable to walk without someone by her side, how could she write her own story?  How could she create her saga of how she engaged with this world?  How could she create her own personal odyssey?  And if she couldn’t write her story in this world, how could creating stories be the reason for being?

This is when I started to learned something about Livia.  Livia was an amazing author of her own story.  And also, she was an amazing editor of mine.

When I would sit with Livia and hold her hand, touch her cheek, the world would close in to just the two of us.  And I would find myself in the pure joy of just being. In that moment was when Livia would take out her pen and would turn open the cracked and worn cover of my heart and start to write on the pages within.

And what she wrote on my heart would change me forever.  

She taught me that it was alright to be weak.  That in my weakness others could be my strength.  

She taught me to be humble.  Being humble allows God to work through me.  

She taught me to love as a child with great joy for today.  

All of this, and more, she taught me without saying a word.

But it was not just my heart that Livia would write her story on.  

You too have had this wonderful girl write on your own heart’s page.  And what she wrote there is so special and so meaningful to you.  Each time you touched her, each time you cared for her, she changed you.  Each time she made you stronger, each time she made you more open to love, each time you became more tender.

She touched you and you grew. And you were changed.  

Each of you that have touched Livia, cared for her, have loved her with no expectation of her being able to return your affection, have written on Livia’s heart pages as well.  You have ministered to her through care and touch.  Even the simplest of things that you did for her wrote deep loving verses. 

And by loving Livia unconditionally, you have allowed Livia to write her story.  You helped to create her story to fill her heart of heart.

Her story is how she changed your life.  How she helped you write a better story.  How she took your simple tale and turned it into a deep and pure love story.  Her being in this world had to be.  She had to write her story that affected so many lives.  

Her story is the simplest but at the same time is probably the most profound story that anyone could write.  She has shown us how God loves unconditionally…and she did that by letting us love her unconditionally.

George and Cindy, Jim and Karin, you were Livia’s first coloring books.  Not the kind with outlines of pictures, but books with great, big open pages.  Livia would open these huge books that are a grandparent’s heart.  And then Livia would stand back and hurl huge buckets of amazing color, one after another, and the colors would splash and run.  And you would find yourself caught up in the moment and you would pick up your pails of color and find yourself adding to the glorious rainbow that was forming.

And then, you would sit back with Livia and marvel at the creation you had made with her in such a short time.  No words were needed.

You and Livia wrote on each other’s heart in a language that only a grand-daughter and a grandparent could understand and share.  You loved her unconditionally as a grandchild from the day she was brought into this world. 

Jake and Kelly, it is because of you that Livia was able to have such an impact on this world.  You created the space in this world for her to live and be loved in.  You were able to create the family Livia needed to carry on her journey and write her story.

You understood how sacred Livia’s life was.  And you re-affirmed how sacred Livia’s life was each day.  You understood how right it was for her to be in this world.  You would welcome all to come be part of this grand story.  You constantly invited strangers to embrace who your daughter was.

But Livia saved her greatest story writing for her mom and dad and her little sister, Finley.  She had to write the story that would transform her family forever.  She wrote a story of how important a family is and how love grows through acts of tenderness and kindness.  Her story was written about how special her family was and how you loved and cared for each other.

From the day that you met your daughter, you would never be the same.  You had been changed forever.  You had to let go of who you thought you were and place your trust in God and let Him carry you through each day.  God was with you.  You were not alone on this journey.

Each day you took care of her and you touched her.  You held her tight and surrounded her with love.  Each day you nurtured Livia’s soul and heart.  Each day, love grew in your family.  This love would spill out a thousand fold far beyond your family.

One of my greatest joys in this life was to be invited to join in bed time prayers with the Hubert family.  It was the time when I knew there truly was a God and that He was truly with us.  Each time you prayed as a family, you opened your hearts and lives to God’s love.  

You trusted in Him and you continue to trust in Him now. This is the miracle that God revealed to your family through Livia. Your family is the miracle that glorifies God. 

Because of Livia, your family has grown far beyond the walls of your home.  Because of Livia, your family is here, all around you.  Their love surrounds you and holds you close.  You are not alone in this moment.  All you need to do is hold Livia your mind’s eye, and the love of this family will swirl around you and embrace you and will hold you always.

Jake and Kelly, your amazing, lovely daughter Livia has created a story so powerful, so beautiful, and so deep, it must be retold again and again.  This story must continue to be lived by all of us she touched as she wrote here story so sweetly, so lovingly. 

And finally, Kelly and Jake, I know where Livia is right this moment.  And in that knowledge, I am today, joyful.

One month

Yesterday marked one month.  So much of this doesn't feel real.  I thought about figuring out the exact number of days, hours, and minutes, but it felt so wrong.  It felt hard.  I don't really want to acknowledge it.  

This blog has always been my voice.  My voice feels so fragile right now.  It feels like I have a permanent lump in my throat.  I think it's because my heart has been in a boxing ring, and it is battered.  It's bruised & swollen, and the injury is radiating into my throat.  It's affecting my voice, and my focus.

Time has been crazy and confusing.  The finality of everything has me feeling lost.  The emptiness is haunting.  It hurts.  Absolutely nothing has prepared me for this.

I'm scared.

I'm hopeful.

I'm lonely.

I'm in love.

I'm relearning.

I'm lost.

I'm unsettled.

I'm inspired.

Everyday is different.  Every emotion is radiated.  I feel like being busy is better, but I'm not sure.  Sometimes it feels like I'm avoiding.

My sweet Finley.  She is inspiring me, and I'm deeply in love with her.  Her heart is hurting.  Her mind is working in overload.  She's so resilient.  She has very deep and heavy thoughts.  Her questions are impressive.  She's good for the most part.  She responds well to honesty and straight talk.  Please continue praying for her.  Her latest desire is to know another kid who has gone through what she has.  She feels as if none of her friends truly understand.  She wants to know she's not the only one.  We've found someone willing to connect, but not in close proximity.  It's a start, and it will be good.

There has been so much love and support.  It's been very eye opening to me to see people's hearts.  The different ways in which people know how to "take care," or offer support is very inspiring to me. So much mail, and we are so grateful for that.  The texts come through, but aren't as frequent.  It's ok.  I need to try and focus on more than a screen.  The greatest gift has come in the form of hand written letters from a friend that happens to be a social worker.  She has no expectation from me for a response.  She offers words and guidance that come at least once a week.  Sometimes more.  Thank you MN-N.  You are a beautiful person.  The ink and stamps mean more than I can ever begin to explain.  Thank you.

Thank you to those that show me the most patience.  For understanding when I need to cancel, or don't answer phone calls.  Please don't give up on me.  I don't know how long this healing process may take.  My heart in that boxing ring-it took quite the blow. 

The next two blogs that I post will be the words that were spoken by Jake and our friend Marshall at Livia's service.  Her beautiful service.  Thank you to all those that attended.  Thank you to all those that helped accomplish all the intimate details that were so important to us.

Livia Grace....I love you so much.  I miss you, but you know that.  I feel your presence in and around me.  You will always be the drive and purpose behind what I do, and what I say.  The time I had with you; those were the years that I learned the most.  I learned what love looked like, and felt like.  Now it's time for me to take those lessons and rediscover myself.  I poured myself into you, and now I feel you pouring into me.  What I accomplished with you reshaped me.  A new heart and a new mind.  Keep showing me, babe.  

Our Sunshine

It’s been since January since Liv has been showing us that things were changing with her.  It was at that point that life, and she, felt different.  I now know that we were being prepared for the time that we are walking her through at this very moment. 

We were so very fortunate that we had many years of words, songs, and mostly laughter from our yellow haired girl.  Sadly, those things were eventually lost; but her eyes always showed us that somewhere within, that smile still existed.  She taught us how to listen to her in ways unlike the norm.  Even now, she is telling us exactly what she needs, and we are listening……and listening well.

We are nearing the end of our physical time with Livia.  We are embracing the wait….the hard hard wait.  There is a lot of beauty that we are seeing and creating during this sacred time.  The love that Livia Grace has created in her 10 years of life is shining exuberantly.  My yellow haired girl has always shined like the sun. 

You are my sunshine…..

Please pray for all of us during this time.  We feel your love.  We see your texts, your messages, the photos you share.  We see you, and we love you for all the support you have always given us.  We are praying for your hearts, too.  I hope that when you feel sad or your heart beats a little faster because of what Livia is going through, that you may take that feeling, close your eyes, and think that it’s because of so much love that you are feeling that way.  It’s a gift and a fuel for all of us to love and LIV a little harder today, and the days to come. 

Waiting my turn

It's hard to wait.  We live in a society where most anything can happen instantly.  Information is at our fingertips.  Packages can be ordered and delivered in the same day.  When we want something, and have to wait, it may cause frustration or impatience.

I feel like I'm living in a season of "waiting."  

My "wait" feels closer than it ever has.  My "wait" is scary and heavy.  It's hard to "wait," but I'm not frustrated or impatient.  I'd like to "wait" for as long as God allows, and even then, it won't be enough.  When my "wait" is over, my arms will be empty.  

I love what my friend said about 2 girls passing away from Sanfilippo Syndrome yesterday.  She said "Two beautiful souls left this earth yesterday, and heaven sure got two shades brighter, but here? It got dark. And when it gets dark, we must search for the light."  (She blogs too.  You can read her beautiful words here.)

The darkness that is my life is surrounded by so much light because of our children.  The darkness that makes my heart feel the ache and burn is soothed by the salve of love that has been brought to life because of their precious and fragile lives.  The wait, the worry, the after; it will be dark.  However, the life left to liv will be worth it, because she will be the light in my heart.  It's the only way.  

I will be content in the "wait."  It will be cherished and honored; daily.

4 children lost their lives yesterday as a result of Sanfilippo Syndrome.  Our community has been hit hard and many hearts have been affected.  Please keep our friends in your thoughts and prayers.  

Not Cute

"Our lives begin to end the day we become silent about things that matter."

"The time is always right to do what is right."

-Martin Luther King Jr

When I was pregnant with Livia, a dear dear friend of mine was 2 months ahead of me in her pregnancy.  I loved that I had a close friend that was just a couple steps ahead of me in pregnancy.  I also loved that when our kids were little, we could share tips, time, and life together with new babies.  My friend had a son, Luke, the December before Livia was born.  We lived just towns away from one another.  It was common for us to get together, have dinner, etc.  One particular night, I had gone over to their house before Jake.  He met me there later in the evening.  When he arrived, my friend Jen and I had Luke and Livia in the bath tub together.  They were big enough to sit on their own, laugh, and interact.  Jen and I were ohhing and awing at how cute it was that they were in the bath together.  I'm sure we even snapped a couple pictures.  We joked that we were going to "arrange" their marriage and how we couldn't wait to tease them that they took bathes together.  Jake did not find it funny.  He made the comment to me that "when will it not be cute anymore?"  I couldn't believe he couldn't see how cute and innocent it was that our kids were in the bath together.  I thought "what a scrooge!"  I wasn't about to listen to his reasoning at the time.  He was ruining my moment.  I brushed him off and we finished the bath.

We have another friend that has kids around Finley's age.  Finley is right in between their daughter and son's age.  Finley spends a lot of time with their daughter.  During their time together, their son likes to interrupt the girls playing together.  Just being a boy, and a brother at that.  During a playdate, Finley and the boy kiss!  I'm not exactly sure why it happened, but part of me thought.....awe, how innocent and cute.  Jake's comment "when will it not be cute anymore?"

Jake is a principal at a local high school.  He cares very much for all of his kids and their families.  The students are good kids, but in the past he has had to deal with issues like kids stealing, fighting, drugs, dress code, sex, etc.  You name it, he's probably dealt with it.  It's very unfortunate to hear a lot of stories that he has to tell.  So many of the issues he tells me about reflects back on to home life.  Not always, but the majority do.  Kids learn and live what they know.  Bullies are bullied at home.  Thieving happens in times of desperation.  Kids can be used as decoys when parents need to steal to survive.  Teens will cling on to relationships, many physical, when they don't get the attention they so crave from the people that should care the most.

"When will it not be cute anymore?"

This morning, I opened up Facebook to see two people post this newspaper article. 

I can picture this child's parents thinking "how cute and innocent!"  I can hear them out in their yard with their neighbors saying "hey little Johnny, come here and tell Mr. Rodgers what you just said about Grandma and Grandpa."  Or maybe in the grocery store when the parents run into their BFF's, the story is told again from the child's innocent mouth.  Each time the laughs get louder and louder, and the child loves the attention he is getting from the story he is telling.  I get it.  I totally get it.

My sweet friend replied to this post of the"retired" grandparents that this may be offensive to some people (she was totally talking about me!)  Comments followed like "sooooo cute," "best jokes are those that are most shocking," "sounds like my grandchild," and my favorite "totally innocent, came from a child's perspective and is innocent.  Keep things in perspective."  Well, here's some perspective for you.  I'm facing my daughter's impending death, every single day.  She has a mental retardation, and I don't find anything about this funny.  Maybe I've lost some of my sense of humor, but I'm losing my daughter with each passing second.  My heart hurts, and to see something like this made light of......in a publication, is not humorous to me.

I will not apologize for what I believe in, and I will continue to defend my daughter and those who are affected by a disability. I am her voice, and I will stand up for what is right because of her, and for her.  My husband was right when he brought to my attention "when will it not be cute anymore?"  Leading by example to the generations behind us (and sometimes ahead of us), is everyone's responsibility.  Standing up for what is right is the solution to so much of what is NOT cute in this world.