Tuesday, May 22, 2018

Our "why"

I remember the exact moment I saw this sonogram photo.  I remember the waiting room, and the exact spot I was sitting.  It was one month before she would arrive.  I remember the excitement and anticipation of actually holding her in my arms.  Seeing what she would look like.  I was ready.  This sonogram photo took my breath away.  It was the first time I really felt like I could see her face.  It was before the time 3-D sonograms were offered regularly.  I knew in that waiting room, at that exact moment that her name would be Livia.  There was no doubt in my mind.  Little did I know at that moment how fitting her name really would be.

The reason we started the Liv Life Foundation was to do something.  We couldn't sit by and hope that a cure would be found by not trying ourselves.  Our hope was that maybe, just maybe that one dollar we raised would be the dollar to find a cure.  It was our hope.  It was fitting to name the foundation Liv Life.  We called her Liv, and our mission was to make the best of what we had and LIV life; to hopefully save her life so that she could LIV.  For those of you that know the rest of the story, you know that it just wasn't in the cards for a cure to save her.  We gave it our best effort with the foundation, but what I know for sure is that LIVing life with her was the cure for so much, and for so many.

So here we are with a foundation still in place with her name all over it.  Livia means "life."  To us, Liv Life means to enjoy, to be in community, to love other's, to inspire through generosity and kindness.  It means to honor our days and be intentional with the time we have.  Livia taught us that.  There were days that it was hard to recognize, and there were days that were harder than other's to really fulfill that intention.  Being a caregiver to another person presents challenges, both mentally and physically.  Having a child, or anyone with a terminal diagnosis is stressful.  LIVing daily with the time commitment as well as all of the "things" (equipment and supplies) you must have in order to LIV, doesn't always come easily.  Most of the equipment and supplies that it takes for a typically developing child can be found at Target or on a quick run to the store of your choice.  Many specialized pieces of equipment that it takes for growing and changing children that are ultimately declining, takes a lot of work to find and to obtain.  We were very fortunate to have great insurance that helped us have an amazing palliative and hospice team, but not everyone has this.  Not only is it access, it's rules and guidelines that many insurance companies require that takes a lot of phone calls, money, denials, referrals, appeals, etc. to even obtain a piece of equipment that a declining child needs in order to provide comfort and ease in their everyday life. 

This is now our "why."  Why we want Liv Life to continue to grow, and how we want to make a difference.  We will continue to support research in the hopes that a cure will be found.  We will not ignore that.  However, it's time to make some changes within our foundation to help give other families an opportunity to LIV their days with their children just a little less stressful.  To give them back just a little more intentional time.  Our desire is to get into the community to help families with a child with a terminal diagnosis obtain a need in order to simply LIV.  We are excited that this is already happening.  We have made a connection with a local family that has been trying to obtain a car seat for their son since December.  Liv Life Foundation has purchased their car seat and will be presenting it to them at our Winery Fundraiser on June 9th at DC Estate Winery.

Her name was put on my heart at the exact moment I saw that sonogram photo.  That name will now carry on through this foundation that will, in turn, help others to LIV.  We can be so proud of our daughter for that.

For more information on the winery event and to purchase tickets to attend, please follow this link. 

Tuesday, March 20, 2018


The end of this week will mark 6 months since I touched, held, smelled, or kissed my precious daughter.  These 6 months have gone by so fast, and yet remembering the last moment that my lips touched her skin feels like forever ago.  Her physical presence is missed more than I have words for, but I know where she is.  I feel her with me, and around me.  It brings me great peace, but can also bring me into heavy, heavy missing.  It can take me to a place that looks like avoidance, isolation, unproductive busy-ness, and mindless distractions.  All of these a push-back from what I really need to be doing in order to heal.

I attended my second 'Restoring A Mother's Heart' conference this past weekend.  It was an absolute gift to be welcomed into such a sacred space filled with transparency, vulnerability, raw emotion, and so so so much love.  Attending this second time was very different than the first.  I had a much different take away and learned more about myself, and tools that I need to implement into my life to help with the healing process.  It wasn't easy to learn some of these "ah-ha" moments, but extremely necessary to acknowledge and start implementing the work towards.

Every presenter brought such wisdom and guidance at this retreat.  Even the mom's attending were (ARE) my teachers.  Their children are teaching me!  One presenter in particular, who has also lost a daughter, has the beautiful gift of interior design.  She talked to us about decluttering our homes and spaces in order to create an environment that we feel safe and comfortable in.  Her daughter's room is still her daughter's room in the house.  She tried to turn it into a sewing room at one time, but it didn't feel right.  This session resonated with me for many reasons.  Days before the retreat, I found myself having a photo shoot with a pile of laundry.  A few year's ago we moved Livia downstairs.  We created a beautiful bedroom for her, as well as remodeled a bathroom so that all of her care would be on the first level of our home.  I still kept her upstairs room hers; including keeping her clothes in her dresser.  Her window seat/toy box was an easy place to set her piles of clean folded laundry if I didn't have time to put them away.  She had a pile on her window seat from before she died.  I couldn't put them away.  It was as if seeing those piles gave me a sense of her presence.  I wasn't ready until I was ready.  I organized the piles, and each item of clothing I touched brought me a memory, an ache, and a huge sense of her.  It hurt, but I was ready.  A few pieces of Liv's clothing were going to go into Finley's dresser.  I love seeing Finley in Livia's clothes.  The majority of the clothes went right back into Livia's dresser.  I didn't have to get rid of them, but I was done looking at them every time I passed her room.  I was ready to declutter.  Not erase, just reorganize.  The same theme of decluttering my heart rings true.  This weekend, I discovered things about myself that need reorganized in order to allow healing.  Healing, never forgetting or erasing.  To declutter means "to remove unnecessary items from."  For me, this means removing unnecessary shame and guilt that I carry with me which creates a dialogue of doubt.  I think that when you go through trauma or a situation that changes your life, there's nothing you can do to ever forget it.  There may even be shame or blame attached to the situation, but what matters is how we declutter and reorganize the emotions attached.  

Eckhart Tolle said “I am not my thoughts, emotions, sense perceptions, and experiences. I am not the content of my life. I am Life. I am the space in which all things happen. I am consciousness. I am the Now. I Am.”

My #1 strength finder is Developer.  Basically, what that means is that I recognize and relay the potential in others.  My "ah-ha" take away is that because I haven't decluttered my own heart, I couldn't even recognize my own potential.  That the dialogue I had created has been holding me back from healing, and from pursuing.  I'm tired of living my life this way.  I'm tired of keeping to myself in order to protect myself.  Livia is Jake + Kelly.  Livia is a huge part of me.  By reorganizing and believing in what I'm capable of, Livia will LIV on through what I do.  What I say.  She will LIV when I walk out of my home.  People will see her when they meet me.  I could see how much Livia had to offer.  It's time to recognize the same for myself.

Tuesday, January 23, 2018


I've stopped counting the days.  Counting from the moment that I watched her exhale her last breathe.  When I physically felt her heart stop under my right palm.  From the day that my existence as I'd known it for the last 10.5 years shifted.

Since that shift; confusion has set in.  Exhaustion and isolation are felt more than ever.  Grief is now a word I can use.  Some days, breathing is hard.  I find times when I whisper over and over: I love you, I love you, I love you.  As if she can hear it in my thoughts.  Or maybe, it's my internal alarm clock to remember.  To think of her.

Since that shift; I'm functioning.  Love still radiates at the center of everything.  Maybe more so than ever.  The recognition of time is at the forefront.  I seek joy.  Feeling joy in the simplicity of a deep breath.  Satisfaction in a yoga class.  Giving myself permission more than I ever have in my life.  To say yes, to say no.  Freedom.  Embracing and mending my family.  Speaking truth, and learning.  The good stuff.

Since that shift; I've wondered.  Wondered what people are thinking of me.  Wondering if they see me.  If they know.  Wondering who will talk about her next.  Loving when they do.  Wondering how other hearts around me are doing.  But, not always having the energy to ask myself.  Wondering about this ache that creeps in unexpected and unannounced.  Wondering if this mind wandering will always be a road block.

Since that shift; the miss gets stronger and stronger, but that's ok.  You see, loving her, calling her mine is something I will never ever regret.  That miss fuels me, even when it hurts like hell.  That miss is a feeling created by the shift.  The coupling of then and now.  The braid of love, grief, and LIVing.

4 months.  

Family update: Jake is pursuing his doctorate in education.  His goal is to become a Superintendent.  I'm inspired and motivated by him.  We continue to have a balance within our relationship that carries us through this shift.  New Year's was harder than Christmas for both of us.  I think it's been the first time through all of this that we were both in that low place at the same time.  

Finley is doing really really great.  For a time after Livia passed, she missed a lot of time in the classroom.  SIDE NOTE: our school distract has been an absolutely phenomenal support for Finley.  We can not thank her teachers, social workers, and friends for being such a safe and caring place for Finley.  Finley had a great Christmas break surrounded by many people who love her.  Getting back into the routine of activities has been good for all of us.  Finley is excelling and loving her dance classes.  She joined 3rd grade choir.  She brought home all A's and B's on her report card.  She is my energy.  I'm more in love with her today than I ever have been.  She is a daily gratitude of mine.  She sets a good example with her beliefs and prayers.  When she says Livia's name, even with tears, it warms me.

Everyday is different for me.  I have the most understanding and caring friends.  People who are patient with me, and don't push me.  I have friends that continue to hold my hand through this.  People who text, and ask.  One friend in particular has been writing me letters about once a month.  It was more frequent right after Liv passed, but they are still showing up.  I treasure her words, care, and love.  It's a unique gift with no expectation back from me.  MNM, if you are reading this, thank you.  I love your heart.  I'm back to teaching at the Y 3 days a week.  As I mentioned earlier, I'm taking yoga as much as I can fit it in.  There's something about the class, the instructor, and the mental clarity I receive when I'm in the class.  Paying attention to my body, and my heart has been top priority.  Meditation is the best time.  It's a time that I sense Livia around me the most.  Probably because it's forced quiet time that we all need!  I'm pursuing a business that I'm incredibly passionate about.  However, I'm my worst enemy when it comes to putting myself out there.  Remember that mental road block I mentioned.  Not only is that block present, a big ole' "caution sign" keeps flashing in front of me.  No other reason beside my own self doubt, but that's another topic for another time.

Thank you for your continued love and support of my family.  We are so blessed to be surrounded by a wonderful community of well intentioned people.  Even those that live far from here; your love is a comfort.

One more update....We are hopeful and driven by the prospects of continuing and shifting the Liv Life Foundation.  We have new ideas and hopes for the foundation.  Thank you for your continued interest and support with Liv Life.       

Friday, October 27, 2017

Fuel for today

Finley asked me this morning if on Christmas morning we'd have to wait for Livia before we opened presents.  It took my breath away, and confused me.

I explained to her that Livia is in Heaven, and we won't see her again until we get there.  She didn't dwell on it, and quickly moved passed the idea.  She just said, "Ok, I think I'll sleep in then."

This has been a hard week.  The hardest since.  Just like Finley's question this morning, emotions and thoughts are so different and at times very confusing.  Today, I feel determined, strong, and focused.  I've set up a meeting for a volunteer opportunity that will hopefully help me grow, contribute, and get involved in something I'm very passionate about.

A lovely friend of mine blogged yesterday about her son and blueberry pancakes.  You can read it here.  It hit home because blueberry pancakes were Livia's favorite.  I understand how she is feeling.  However, it got me thinking.  It got to a point with Livia that we couldn't even let her taste things.  We tried because we wanted to.  We'd give her something like a tiny smear of ice cream in her mouth, or whipped cream, and she hated it.  It almost appeared as if it were painful to even taste.  She made a horrible face that we would giggle at, but awe at, at the same time because we felt bad.  For a moment, I felt happy that she was free from the body that fought so hard against her.  That kept her from tasting her beloved foods.  That immobilized her.  That caused her pain.  I hate that my child had to go through what she did.  I hate that she is gone, but I can find peace in the freedom that she has now gained.  That as each day passes, it's one day closer to seeing her again.  That as some days paralyze me in sadness, there will be strong days that are inspired by what she went through.  I can feel my heart being fueled today by memories of her blueberry stained face, with chocolate milk stained pajamas.


Tuesday, October 24, 2017

By Jacob Hubert

I would like to begin by thanking everyone who’s here in attendance today, and the outreach of support displayed by our family, friends, church, schools, employers, coworkers, and community through these difficult times.  Your generosity has been broadcasted on the news, been printed in the paper, and more importantly given my family and I the peace of mind that Liv’s life has had an impact on so many, making her short ten year journey, one of the most beautiful and meaningful journeys I’ve come to know, so I’d like to take the next ten minutes to share her journey, what I’ve learned from the journey, and what myself and hopefully others will do to honor her journey on this earth as we all begin to heal.

How ‘bout that hair.  I can’t tell you how many people have told us how they wish they had hair like Liv.  I had the honor of showering Liv regularly, and every time I washed her hair, I brushed it with conditioner in.  I tried my best to be gentle, but there was always hair coming out with each pass of the comb.  By the end there would be a ball of hair roughly the size of a kitten, yet when she was dressed and her hair was fanned out to dry, you couldn’t tell there was any missing.  It was incredible, and what was more incredible is that no one every walked up to my family and I to say look at the girl in the wheelchair or gosh she looks different.  It was always, “Look at that hair.”  For that, I am grateful.  This journey isn’t just about the influence Liv had on us, but how each of you saw Liv’s beauty and interacted with her. 

I’d like to go back to the beginning of it all.  I’ll never forget the first time I cried over Liv.  We went to the doctor’s office to have an ultrasound and hear Liv’s heartbeat.  Her life wasn’t real to me until I heard that heartbeat, and I can never forget the joy it gave me to be a father.  You see, as a child, I always wanted to be a professional football player or Jacque Cousteau, underwater explorer.  I wanted grandeur and adventure.  I was fortunate to meet Kelly, who domesticated me.  Kelly taught me to be a husband, and Liv, Liv taught me to be a father, and it was while I listened to Liv’s heartbeat I realized my true dream was to be a complete family man.  After that, I simply wanted a big family.  I wanted to provide and support them through good times and bad, to lift them up in their triumphs and protect them from danger.  It was during the very sound of Liv’s heartbeat the course of my life changed, and my dreams changed to a main focus of being a father.

The next several months were spent planning a space for Liv and discussions of things to come, including what Liv’s name would be.  With three months left in the pregnancy, I thought we had agreed on the name Finley.  About two weeks before Liv was born, Kelly and I were having a conversation, I stated that we at least agree on one name.  Kelly look surprisingly at me and said “which one is that?”  I said Finley.  Kelly said I don’t know if that is the one anymore.  I was shocked and it was back to the drawing board.  Kelly really wanted Livia and I really wanted Grace.  I believe you can all see how it ended up.  The funny thing is I never brought up the name Finley for our second born because I didn’t want to go through the same process of hoping for it, but two weeks prior to our second daughter’s birth, Kelly said, “do you know what name is really coming on strong?”  I said, “no.”  She said, “Finley.”  I wanted to rush to the hospital that very moment.  We have two daughters.  Livia Grace and Finley Faith.  Faith and Grace.  As I was reading through scripture one day, it was no mistake I came across Ephesians 2:8, which says “For it is by grace you have been saved, through Faith – and this is not from yourselves, it is the gift of God.”  Kelly and I were graced with two beautiful daughters and our faith grew through raising and caring for them.  Both our girls and our lives are gifts of God.  Livia’s name was no mistake.  Livia, whose name we shorten to Liv has taught myself and others to Liv by Grace.  At that point in our lives, with two daughters and a plan of more children to come, life was right.  There were some indicators of Liv not developing as fast as she should, but to the best of our knowledge, we had two healthy, beautiful girls.

A couple of months and a surgery to remove Liv’s adenoids and place tubes in her ears led us to a geneticist, who looked at Liv and stated she shows mild signs of a storage disorder.  We were finally getting some answers.  I thought we were on the road to a diagnosis, we’d get some medicine or a treatment, and Liv’s life would be back on track, and so would my dreams of being a father and having a big family.  I guess I didn’t really understand what the doctor was saying, because on July 8, 2009, we received a phone call that we needed to come in to see the doctor right away.  We were in central Illinois with plans to be there for another week, so we weren’t quite certain if we wanted to come back to Rockford that minute.  Then the nurse explained to Kelly over the phone why we needed to come up.  I vaguely remember hearing Kelly say San-what?  How do you spell it?  We then did the worst thing anyone could do at that time.  We googled it.  T-E-R-M-I-N-A-L, and in the time it took me to spell it, we were in the van.  I don’t remember the ride up, but I remember thinking not us.  We’ll overcome this.  We know people.  Shortly after the doctor’s visit, we had to have a blood draw to test Finley too.  While Kelly was dealing with that, I made three phone calls.  The first was to my parents.  I’ve not heard my father cry before, but I can never forget hearing the tears that day on the other end of the phone.  It solidified the fact that this journey was not going to be easy.  The next phone call went out to my Uncle Dave, who has a chemical engineering degree and helped to develop some medical advancements.  Surely he knows someone who is doing the research.  While he was willing to look into it, he had never heard of the disorder.  Then came by buddy John, who has a degree in biochemistry and has worked at various medical clinics.  Certainly he would know of something, but that too was a dead end.  Unfortunately I was looking for solid ground in mankind, when I should have been praying to God, but I wouldn’t grasp that lesson until much later in life.  For six months I only thought of all of the things I would not have or get to do with my Livia Grace.  I would not see her walk across the graduation stage.  I would not walk her down the aisle of her wedding, and I would not get to spoil her children, my grandchildren.  My dreams of having a big family quickly vanished as we found out it was a 1 in 4 chance with each child we have that they will have Sanfilippo.  I was crushed.

I was expressing to my dad, my feelings about what I would not be able to experience with Liv, six months after her diagnosis, and it was on that day he told me I could continue to focus on everything I wouldn’t have, but in doing so, I would miss out on making some pretty good memories along the way.  It was that day I decided I must begin to LIV my life to the fullest.  I wouldn’t let time rob me of the memories that could be made, and I must look to the positives if I was going to give my family the best life God would allow.  Kelly and I spoke about it and decided we should start a foundation to bring about awareness and raise money for research.  With the help of Kelly’s Uncle and a couple of close friends, we established the LivLife Foundation, where we would do more to raise awareness and funds for research.  We would use our story to help others realize how precious life is, to be grateful for their blessings, and for them to LIV life to the fullest.  Something had changed inside of me, and I began to be able to create beautiful and wonderful moments.  I began to notice more laughter that lead to a greater number of memorable moments.  Liv’s favorite activity just so happened to be dancing, so we danced like fools.  We danced like fools to the Wiggles, to Elmo, and to Beyonce.  We watched the video “All the Single Ladies” countless times, mostly ending by falling to the ground in exhaustion and laughter.  Kelly joked that she hoped no one would see us.  I secretly hoped others would see our craziness and long to be a part of the fun.  Liv’s laughter was infectious, and like morning sun creeping through the cracks in the blinds, that laughter would light up your life.  It was inescapable, and I had that laughter each and every day if I chose to make it happen.  The laughter and the dancing lasted for a time, but Sanfilippo slowly robbed Liv of that.  As a matter of fact, Sanfilippo robbed Liv of dancing, laughing, talking, walking, eating, and eventually took her life, but the amazing thing about it, is that during Liv’s short time here on this earth, we have all learned from her that happiness comes in so many shapes and forms.  While Liv was robbed of so much, it never took away what she said with her eyes.  They were the biggest, brownest eyes you’d ever set sight on, and she expressed her love well through those eyes.

Livia showed love and acceptance to each and every person with whom she came in to contact through those eyes.  She always wanted to hold a hand and offer a smile.  No one was a stranger, and no one could escape those big brown eyes or her smile that lit up the room.  I would walk through the store with Liv and kids and their parents would go out of their way to say hi to Livia, and the joy on their face when they said hello was incredible.  There were many times I was known as Liv’s dad.  It is one of the greatest honors that could ever be given, after all, my dream was and still is to be a family man.  Liv’s innocence was catchy and influenced many to love and accept people for who they are.  As I think back to the beginning of mankind, back in the Garden of Eden, I think of the first two humans and how they were made with complete innocence and love to share with one another.  This form of innocence was God’s original perfect creation.  In Matthew 10, verses 13-16, it says “People were bringing little children to Jesus to have him touch them, but the disciples rebuked them.  When Jesus saw this, he was indignant.  He said to them, Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.  I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.  And he took the children in his arms, put his hands on them and blessed them.  For years, I prayed for God to either provide a miracle of modern science to cure all children with Sanfilippo or to outright heal Livia through a divine miracle.  While I wanted this more than anything, there were times I wondered what would happen if Livia was healed, but rebuked God for her experiencing the health issues.  How would I feel if Livia was cured, to have a complete life here on this earth and not go to heaven?  I would never be able to forgive myself.  In Liv’s imperfections, she was absolutely perfect.  Perfect love.  Perfect acceptance.  Perfect innocence.  In reflection of it all, I was blessed to be the father of a perfect angel here on this earth.  It took me years to realize my prayers for healing were being answered by God, but it wasn’t the type of healing in accordance to my plan.  Slowly, God healed me, so I was able to accept and acknowledge this perfect angel in my life and learn how to live a better life in accordance with God’s word.

Thinking back to our decade with Liv, raising this beautiful angel with complete innocence wasn’t always easy.  Liv always wanted to be involved in what we were doing, including the almost daily gourmet meals my lovely wife likes to cook for our family.  Cooking meant the use of hot pans and sharp objects.  I remember coming home one day to Kelly having baby Finley strapped to her chest in a baby carrier, there were green beans being sautéed on the stove and a cutting board and knife on the counter near her.  Liv was laughing as she persistently grabbed at the pan and then at the cutting board, and of course it was a fun game to Liv.  Poor Kelly was trying to cook and defend while keeping Livia safe.  I remember thinking I wish Liv would stop grabbing at everything.  I have reflected on that very thought numerous times since. Before I knew it, Liv stopped walking, and I would have given anything to have those moments back of having to defend whatever was going on in the kitchen or even in the garage.  I would give anything to have Livia trying to be involved and laughing about what she thought was a game as we tried to stop and protect her from various dangers.  My frustrations eventually turned into longings.  You never realize what you wish away until it’s too late.  The simple interactions of trying to protect Liv from her persistent desires to get involved in what Kelly and I were doing is something I will miss for the rest of my life.  This past summer Kelly cooked a meal for a family who lost their mother.  Kelly and Finley had an obligation that afternoon, so it was my job to take Liv with me and food to the grieving family.  I then had to make it back to the house in time to meet with another person over a scheduled obligation.  I had the food loaded up, and I was ready to load Livia up when I realized she had pooped.  I laid Livia down on a pad to change her, and as I opened up her diaper, it went everywhere.  The pad wasn’t wide enough to handle the volume, and things got onto the carpet.  I was frustrated at first.  I had limited, fleeting time, and too much was being consumed by my endeavor to simply change a diaper.  I then paused, took a deep breath, and told myself an alternative is that Livia is not here for me to change her diaper.  I suddenly became grateful for Livia being there and the opportunity to simply have time with her.  The rest of the world could wait, but it was time for me to be a father and care for my daughter.  I am grateful for taking a minute to realize how precious my time was with Livia, because I would again give anything to have to change another diaper.

Over a year ago, Kelly asked me if I had thought about Livia’s death.  Of course, I had, but I didn’t originally realize the depth of her question.  You see, Kelly had thought about many intimate and personal details.  Things that no mother should ever have to think of, but only a mother could think of.  Together, we decided to let a few others in on these details.  You see, it takes, and has taken a village to care for a child.  Livia loved her Barbies.  When she was younger, you would never see her without one in her hands.  She would twirl and chew on her Barbie’s until they needed replaced.  We asked Finley to pick out a brand new Barbie for her sister.  Finley picked one out for Livia, and one for herself.  She chose sister Barbies identical in every way except the color of their hair. Finley kept hers, and Liv has her favorite toy with her now.  Livia is wearing a bracelet that matches one that Finley now has.  Kelly and Livia have matching cross necklaces.  The vision of Livia being restored in Heaven is a source of comfort and peace for us.  Knowing that she is running, dancing, and playing like all children should be, is a beautiful image.  Because of this, we wanted her to have a brand new pair of running shoes. Her shoes are now supporting her adventures and play with all of her new friends. Kelly was able to take the time to paint her fingernails a soft color of pink reflecting Livia’s sweet and soft personality.  Her toenails were painted yellow like the color of the sun.  After all, Liv is our sunshine.  Finley was able to send her sister off with a signature piece of her artwork and a handwritten note.  This note was a request of Finley to never forget us. Another personal and intimate detail is that Liv is wearing her first pair of underwear.  Something she’s never been able to have until now.  The last detail that Kelly wanted was to have a dress made for Livia out of her wedding dress.  Kelly had received a “nudge” this summer that it was time to accomplish this.  We asked a friend to help us find a seamstress willing to take on the significant task.  Kelly received the news a little over a month ago that the dress was finished.  A good lesson for all of us to listen for and follow through with those “nudges.”  This past Monday we were able to see Livia in her dress.  She looked absolutely beautiful and peaceful in the dress.  It’s a comfort knowing that we were able to provide these gifts to Livia.  These details are a source of comfort for us that will remain in our hearts forever.  Kelly even wrote a beautiful poem reflecting the symbolism of our marriage in the newly created dress we gave our little sunshine.  The poem is titled “Silken Threads”

Now I lay you down to rest, in these silken threads that once were blessed.
Because of our union, out of love, in the eyes of God and the family we love.
I dreamt you would wear them for your own special day, but the plans for that were long put away.
I knew these threads could still be used, a gift to give, an honor for you.
For you of me, and I of you; one heart, strong bond that all could see.
The gown I wore for unity resulted in the creation of your beauty.  It now surrounds the gift that was ours to borrow; for all eternity.

So now there’s a little more laughter in heaven, but where do we go from here?  The dust will settle.  Our lives will once again slow down, as will our tears.  What is it that I hope you choose to do honor these beautiful lessons we’ve learned from Livia’s short journey?  I’d like to start with the fact that you should dance like a fool, no matter who is watching.  Just open up and have a little fun, so you can create those fond memories with loved ones that will last a lifetime.  Next, be certain to never wish anything away.  As frustrating as some things may be, I want you to think about the alternatives, because that person may not be there one day.  You never know when one of those moments may be your last.  Life can be a beautiful journey if you allow it to be, so take the initiative to make it so.  Last, love and accept with the innocence of a child.  That is how God originally made mankind, and I think you’ll realize that innocence will establish lasting and loving relationships in your life.  Thank you all, and God Bless.

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.