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”

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.